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Tullis Owen, Jillian A.
Communicating spirituality, dying and a "good death" at the end-of-life :
b the role of hospice interdisciplinary team members
h [electronic resource] /
by Jillian A. Tullis Owen.
[Tampa, Fla] :
University of South Florida,
Title from PDF of title page.
Document formatted into pages; contains 248 pages.
Dissertation (Ph.D.)--University of South Florida, 2009.
Includes bibliographical references.
Text (Electronic dissertation) in PDF format.
ABSTRACT: Hospices use interdisciplinary teams to aid patients and families as they cope with the imminence of death while helping them achieve a death free of physical and spiritual pain, also known as a good death. This study investigated the communication between hospice team members and their patients regarding spirituality, dying, death and a good death. Through 300 hours of participant observation and interviews with hospice staff at one large not-for-profit hospice in the Southeastern United States this project shows that team members understand patient's spirituality through a religious frame potentially compromising spiritual care. Talk between patients and their care team rarely focuses on what constitutes a good death and team members eventually come to narrate all hospice deaths as good.
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Advisor: Carolyn Ellis, Ph.D.
t USF Electronic Theses and Dissertations.
Communicating Spirituality, Dying and a Good Death at the End of Life: The Ro le of Hospice Interdisciplinary Team Members b y Jillian A. Tullis Owen A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor ate of Philosophy Department of Communication College of Arts and Sciences University of South Florida Major Professor: Carolyn Ellis, Ph.D. Eric M. Eisenberg, Ph.D. Lori A. Roscoe, Ph.D. Lodovico Balducci, M.D. Date of Approval : May 1, 2009 Keywo rds: Healt h, Ethnography, Narrative, Ethics, Mortality Copyright 2009, Jillian A. Tullis Owen
Dedication ~Author Unknown The Chaplain of the Sunflower team offe red the inspirati onal quote above during one of the team meetings I observed The quote rightly captures one of the lessons I learned while completing this project patients, their families, and the Sunflower t eam members helped me see that each day is a gift. My hope is that from their wisdom and kindness I will allow the sacredness of life to guide my choices and my communication. I dedicate this dissertation to al l of the hospice patients I encountered. T hank you for granting me the high honor of being present with you as you traversed the final journey of life. I also dedicate this dissertation to the members of the Sunflower hospice team who shared their knowledge and experiences of providing compassionate end of life care. Finally, I dedicate my pursu it of knowledge about spirituality, dying and death to my aunt Genie, my grandpa George, my friend Leah, my grandma Evelyn, and my granddad Dan, whose lives and deaths serve as inspirations for improving the ways we communicate about living and dying well. The finite quality of life and the permanence of death makes taking the time to listen and share (Kbler Ross, 1969) essential throughout a life, but certainly at the end of life. And it is my wish that this project captures the sacred moments when peop le come along side those in need with the goal of sitting, listening and sharing.
Acknowledgement s It takes a village to raise a Ph.D. and during the last year of my doctoral program, I found myself being thankful for the support of my family, friends, co lleagues, and the faculty at USF. I owe a tremendous debt of gratitude to all of the people who encouraged me, offered their advice, wisdom, and ideas, listened to me bitch, and entertained my incessant interest in a topic I know most of you would prefer t o avoid. I appreciate your compassion and care. To the best committee a girl could ever have, Dr. Carolyn Ellis, Dr. Eric Eisenberg, Dr. Lori Roscoe, and Dr. Lodovico Balducci, thank you for caring about me as a scholar and a person. A special thanks to m y advisor, Carolyn, for always finding the perfect balance between encouragement and critique, care and concern. To my mom, Jill, I cannot put into words how wonderful a mother and friend you are. Thank you for always answering the phone with a smile in y our voice and offering words of encouragement and smart ideas. Thank you to my father, Dan, Jr., for instilling in me the love of conversation and the penchant for entertaining, both come in handy in the classroom. Many than ks to my friend and peer mentor Mary Poole; my friends Liz Edgecomb, Emily Ryalls, Sandra Wheeler Abeyta, Tony Adams, and Steve Schoen; my brother Dan and my sister in law Maggie. T hank you for surrounding me with your love when times were good and hanging in there when times got tough Finally, I would like to thank the University of South Florida Center for Hospice, Palliative Care and End of Life Studies for their financial and professional support of this project.
i Table of Contents List of Figures ................................ ................................ ................................ .................... ii i Abstract ................................ ................................ ................................ .............................. i v Prologue ................................ ................................ ................................ ............................... 1 Chapter 1 Introduction ................................ ................................ ................................ ...... 5 History o f Hospice in the United States ................................ ................................ ... 9 In terdisciplinary Hospice Teams ................................ ................................ ........... 11 Dying Well and Achieving a Good Death ................................ ............................. 14 Spirituality in Hospice ................................ ................................ ........................... 18 Health Communication ................................ ................................ .......................... 21 Team Communi cation in Healthcare Settings ................................ ....................... 26 Chapter 2 Methods ................................ ................................ ................................ .......... 30 D ata Collection Process ................................ ................................ ......................... 31 Informed Consent Pr ocess for IDT Members ................................ ............ 32 Pat ient Informed Consent Process ................................ ............................. 34 Fieldwork Observing Team Members Communicate with Patients ...... 35 Documenting Observations ................................ ................................ ........ 37 Inte rviewing Hospice Team Members ................................ ....................... 38 Analysis of Data ................................ ................................ ................................ ..... 38 C hapter 3 Entering the Field ................................ ................................ ........................... 43 Orienting and Accli mating to the Hospice Culture ................................ ................ 43 The Structu re of Interdisciplinary Teams ................................ .............................. 44 Backst age Team Meetings in Action ................................ ................................ .. 45 Incorporating Spiri tuality into the Organization ................................ .................... 47 From Spirituality to Hospice Approp riate ................................ ............................. 50 Chapter 4 Friendship & Dying ................................ ................................ ........................ 5 7 Good Patient s Equals Good Participant s ................................ ............................... 58 Not a Hospice Death ................................ ................................ .............................. 59 Returning to the Field ................................ ................................ ............................ 67 My Time, My Way ................................ ................................ ................................ 78 Attending a Funeral and Talking about Death ................................ ....................... 80 Politeness and Talk ing about Death ................................ ................................ ....... 84 Patients as Conve rsational Guides ................................ ................................ ......... 87
ii Capturing Sonn An Eternal Legacy ................................ ...................... 89 Decline ................................ ................................ ......................... 92 Searching for Clue s ................................ ................................ ................................ 95 More than a Threshold, a Vestibule ................................ ................................ ....... 98 Bac k to the Business of Hospice ................................ ................................ .......... 105 Pre Imminent ................................ ................................ ................................ ....... 107 How to Say Goodbye ................................ ................................ ........................... 114 Tears for my Hospice Guy ................................ ................................ ................... 117 C hapter 5 Life Review as Spiritual Care ................................ ................................ ...... 121 Understanding Life Review in Hosp ice ................................ ............................... 132 Storytel ling and Spiritual Suffering ................................ ................................ ..... 138 Assessing Spiritual Needs ................................ ................................ .................... 147 Ambiguous Ending ................................ ................................ .............................. 150 Chapter 6 Dying Young, Denying Dea th, and Searching for Answers ......................... 153 Stag es of Dying and an Unfinished Life ................................ .............................. 153 Rethinking Denial as a Barrier to Communication ................................ .............. 1 63 Denial as a Social and Relational Phenomenon ................................ ................... 1 64 The Dialectic of Denial ................................ ................................ ........................ 1 67 Chapter 7 Creating Opportunities Communicate about Death ................................ ..... 1 71 Missed Oppo rt unities and t he Hospice C on Problem ............. 171 Introducing Spiritual Car e to Patients ................................ ................................ .. 174 Co mmunication and a Good Death ................................ ................................ ...... 175 Pat ient Choice and a Good Death ................................ ................................ ........ 183 Talking about a Good Death ................................ ................................ ................ 185 Framing Hospice and a Good Death ................................ ................................ .... 1 89 Narr ating a Good Death ................................ ................................ ....................... 190 Improving Communication on Hospice Teams ................................ ................... 208 Chapter 8 Methodological & Ethical Issue s ................................ ................................ 211 Reflections abou t Friendships with the Dying ................................ ..................... 222 Member Checking in End of Life Research ................................ ........................ 223 Concluding Thoughts ................................ ................................ ........................... 225 Epilogue ................................ ................................ ................................ ........................... 228 References ................................ ................................ ................................ ........................ 235 Appendices ................................ ................................ ................................ ....................... 246 Appendix A : Interview Schedule ................................ ................................ ......... 247 About the Author ................................ ................................ ................................ ... End Page
iii List of Figures Figure 1.1 Medicar e Reimbursed Hospice Services ................................ ...................... 11 Figure 1.2 Five Quality of Life Dimen sions that Guide Hospice Care ......................... 13 Figure 1.3 Principles of a Good Death ................................ ................................ ........... 17
iv Communicating Spirituality, Dying and a Good Death at the End of Life: The Role of Hospice Interdisciplinary Team Members Jillian A. Tullis Owen A BSTRACT Hospices use interdisciplinary teams to aid patients and families as they cope with the imminence of death while helping them achieve a death free of physical and spiritual pain also known as a good death This study investigated the communication between hospice team members and their patients regarding sp irituality, dying, death and a good death Through 300 hours of participant observation and interviews with hospice staff at one large not for profit hospice in the Southeastern U nited States this project shows that uality through a religious frame potentially compromising spiritual care. Talk between patients and their care team rarely focuses on what constitutes a good death and team members eventually come to narrate all hospice deaths as good.
1 P rologue opposite end of the meeting room. is a pause as the orientation facilitator, Dr. Paul 1 waits for the hospice employees to rewind their mental digital video recorders back to the first day of new employee orientation training in an effort to recall his personal imagine of a perfect death. ssistant, asks in a genuinely inquisitive tone. I glance across the table at Julie, a counselor, and Barbara, a Registered Nurse and we start laughing. S ince the first day o f new employee orientation at Coastal Hospice five days ago, Jamal has served as my primary source of amusement. I am not sure if it is his voice, which is a mixture of Southern hip hop star and flamboyant gay man or his perfectly time d candor, or both. Either way, I am happy to share a table with him and not with the woman who is going to work in the finance department or the durable medical equipment truck driver. I can tell, even from across the room that they are not nearly as much Margaritaville 1 All names, including the name of the hospice organization, teams, employees, pati ents, and families are pseudonyms.
2 employees continue to recount the features of Dr. Paul deal death I hear someone say, Dr. Paul yees. And around, God forbid, and I have a terminal illness, I am counting on you to remember what I want. And you know what ? We can do most of these things, even the dolphins, for one guy fishing with I make a note on a Coastal Hospice Post = At the end of the fifth day of orientation, I feel good about Coastal Hospice. I share a few and well wi shes with my tablemates and tell them I hope to Revitalize and Reconnect event in three months. I drive home and think more about what events and experiences might comprise my own good death but as I try to conjure up an ima ge of my own illness and dying, I realize that my youth and clean bill of health makes such a scenario too difficult to contemplate in any realistic way. I shift my focus from my wishes to those of current hospice patients and wonder if they are as articul ate about their dying wishes as Dr. Paul The image Dr. Paul
3 creates stands in sharp contrast to the feelings I had during one of the orientation activities intended to recreate the dying experience. Two veteran counselors asked us to create a list of peo ple, objects, values, beliefs, interests, and hobbies we hold dear. I carefully selected four items for each category and wrote them on my activity worksheet. Next, the facilitators read a scenario intended to emulate the illness experience from a thyroid cancer diagnosis to death. At each phase of the experience, as the illness worsens, the counselors prompted us to cross items off the and eating my favorite foods. I let go of my patience but I hung onto my dogs for as long as I could, but when it was time to choose between them and my mother, I had to let my dogs go too. By the end of the activity, she was all I had left. As the facilitators instructed us to cross the final item off our list, I fought back tears. My heart ached at the thought of my own eventual death. I realized, however, that my feelings had more to do with a distinct sense that this activity accurately reflected what my own dead loved ones must have experienced as their lives slowly ended. My aunt Genie, my mentor Leah, and my grandmother Evelyn, all died of cancer. I could hear other people sniffling, and a few people blew their noses. The counselors helped us debrief the activity and process the emotions that came up encoura care. I think back to the last time I did this exercise, during hospice volunteer training in California, and realize my response was almost identical. The sadness I felt was unbearable and it lingered for a couple of days. As I draw my attention away from my
4 thoughts and back to the road, I glance in the rearview mirror and notice the sun is beginning to set. I am convinced that Dr. Paul llic fantasy than reality, but then I remind myself that my role as a researcher affords me the opportunity to see the dying process at Coastal Hospice for myself. Rather than discount Dr. Paul l allow my Hospice employees surely know and are likely to articulate their wishes at the end of life, but would patients? I consider my curiosity a positive sign and I begin to look forward to deliver holistic care, and help patients and their families achieve good deaths * *
5 Chapter 1 Introduction In her book On Death and Dying psychiatr ist Elisabeth Kbler Ross (1969) said, (p. 142) Forty years ago, Kbler Ross first attempted to raise awar eness about the communication needs of the dying, hoping to diminish the agony and suffering the terminally ill and their loved ones may experience in the final stages of life. Since Kbler commun ication about dying and death, scholars responded by researching the historical (Aris, 1974; Stephenson, 1985), psychological (Marrone, 1997) and sociological (Mellor & Shilling, 1993; Walter, 1991; Willmott, 2000) reasons people fail to communicate about dying and death. Few people, however, have studied communication about dying and death as it occurs. Thanatology (the study of dying, death, and grief) scholars from various disciplines argue that the proscription on death is recent (Aris, 1974). I ndustrialization, geo gra phic distribution of family members the decline of religious and community dying and mourning rituals, and medic al and technological advances are frequently cited as catalysts (Aris, 1974; Marrone, 1997; Mellor & Shilling, 1993; Stephenson, 1985) Drawi ng on the wo rk of ethicist Daniel Callahan, authors Ragan, Wittenberg Lyles, Goldsmith, and Sanchez eradication of diseases once considered death sentences [and] permit us the belief that we
6 ome scholars (Doss, 2002; Walter, 1991), however, question the presumed taboo surrounding communicating about death and contend that certain attitudes and behaviors instead signal a shift in modern day t o make death and dy ing more visible. Doss (2002) argues that Contemporary debate surrounding abortion, AIDS, euthanasia and gun bereavement therapy, suggest the questioning an d perhaps the lifting of certain death related taboos. (p. 63) Medical technologies and some increased interes ts in death related topics mark a transformation of dying and death, but not necessarily one that indicates the removal of related taboos. Connor (1998), for instance, contends that the ability to prolong life encourages an obsession with unnatural death and an avoidance of natural death. Walter (1991) uances than many scholars describe According to Wa lter, the proscription surrounding death exists for certain groups (medical personnel and the media), and individuals (the dying and bereaved), but not f or society as a whole. Walter fails to acknowledge however, that people with terminal illness es medic al personnel, and the media permeate society in ways that make it nearly proscription critiques may challenge contemporary does not resolve the prosc ription on death and death talk because as Connor (1998) points out denying and death The denial/obsession dichotomy creates communication
7 challenges for individuals and society. (1991) speculative claim s regarding highlights how little we know about how people communicate about death in light of the cultural and social transfor mations described by Doss (2002) While there exi I believe the prohibition flows from a combination of factors rooted in communication terminal illness and death give s rise to several social and existential paradoxes (Mellor & Shilling, 1993) that enable or constrain communication. Death impels people to reconsider and reshape their roles and responsibilities within famil ial and social groups. Mellor and Shilling (1993), however, odern society, they tend to do so indirectly (p. 423, emphasis theirs) In addition to a lack of direct or explicit communication about death, scholars (see e.g., Mellor & Shilling, 1993; S teeves & Kahn, 2005) observe the limits and inadequacies of the language for talking about death and grief. Scholars agree that many still find dying, death, and grief an isolating experience (Foster, 2006; Mellor & Shilling, 1993; Seale, 1998; Steeves & K ahn, 2005; Stein, 2007; Stephenson, 1985; Willmott, 2000) essentially social, [and] communal phen o the lack of language and attending to communication problems requires collaboration amon g people who are terminally ill and their professional and non professional caregivers with the explicit goal of understan ding and making sense of death while
8 simultaneously reducing suffering. Hospice exists to reduce this stress and diminish the feelings of isolation that accompany the dying process. The goals of hospice include reducing suffering at the end of life by crea ting an environment supportive of open wishes and concerns about dying and death. Answering Kbler (1969) c all to sit, listen, and share, this dissertation captures and describes communication among hospice interdiscip linary team members and their patients and families focusing its analysis on dying and spirituality. Through narratives, I describe the content and form of these conversations, and who (e.g., patient, family, team member) initiates conversations about dyin g, death, and spirituality. I also discuss the ways in which various institutions (e.g., Medicare, the hospice) and institutional roles and expectations enable or constrain these conv ersations. Finally, I consider the role communication plays in achieving a death free of physical and spiritual pain also known as a good death principal goals for their patients and families. In the following pages, I discuss the existing literature about end of life communication and spirituality. In additi on, I describe the research methods that I used to investigate these topics, and I discuss the ethical dilemmas I negotiated while conducting research with terminally ill people a nd their family members. In an effort to understand the setting where my stud y occurred, I first summarize the development of hospice in the United States.
9 History of Hospice in the United States Everyone must die. M ost people however, do not embrace this reality with ease. Due to advances in technology, which have improved diag nostic tools and treatment options, many people do not experience the death of a loved one until later in life (Marrone, 1997; Stephenson, 1985) Moreover, these same technological advances mean that people can l ive several years with life threatening illn ess es (Puchalski, 2006) As such, the first intimate exposure a person may have to death not when someone dies, but when someone receives a terminal diagnosis. The futility of curative health measures marks the moment when a physician declare s a person ter minally ill and turn s her or his attention to making a patient comfortable. A physician may choose to refer a patient to h ospice to receive comfort care. Hospice is a philosophy of care and not necessarily a place where a person goes to die, although some hospices have in patient facilities. C ontemporary notions of hospice evoke an image of a highly structured and regul ated organization that manages the needs of people at the end of their lives. T he concept of hospice however, dates back to medieval times when travelers sought respite on their way to the Holy Land (Hayslip & Leon, 1992; Leming, 2003; Marrone, 1997) Hospice care, as it exists in the United Saunder s in 1967 ( Hayslip & Leon, 1992) When hospice migrated to the United States, it began as a grass roots movement in communities di s s atisfied with the current medical model around end of life care (Egan & Labyak, 2006) The first hospice in the United States began in C onnecticut after Dr. Saunders lectured abo ut her work at Yale
10 University and i n 1982, Congress created the hospice Medicare benefit ( Hospice facts & statistics 2008) Subsequent legislation divided the Medicare hospice benefit into three benefits periods (two 90 day periods and an unlimited number of 60 day periods) at which time beneficiaries must be recertified as terminally ill ( Hospice facts & statistics 2008). As of March 2008, there are 3,257 Medicare certified hospices across the country and approx imately 200 volunteer hospices that do not parti cipate in Medicare or Medicaid ( Hospice facts & statistics 2008) Hospice care has evolved since its inception, yet its mission remains the same (Leming, 2003). According to Leming (2003) home. The patient and her family members (or other close loved ones, and/or a non professional caregiver) make up the unit of care; together, the p atient and family directly influence the types of support needed during the dying process. In addition to providing care outside of a traditional health care setting, hospices use palliative care (also sometimes called comfort care), which seeks to help pe ople with a terminal illness manage symptoms and control pain caused by disease progression (Ragan, et al., 2008) Acc ording to Egan and Labyak (2006) patient through the dying process and the family thr ough the experience of caregiving, of Medicare reimbursed hospice services)
11 Interdisciplinary Hospice Teams An individual or single discipline cannot adequa tely meet all of a patient physical and emotional needs; therefore hospices use an interdisciplinary team approach (Connor, Egan, Kwilosz, Larson, & Reese, 2002; Marrone, 1997). According to Wittenberg Lyles, Oli ver, Demiris and Courtney (2007) in 1983 federal guidelines required hospices to provide patient care using an interdisciplinary approach. The team approach to healthcare provides patients and families with comprehensive assessment and treatment (Ellingson, 2005; Ragan, et al., 2008) The expecte d outcomes of interdisciplinary teams in healthcare include better patient experiences and health outcomes than one on one or uni disciplinary teams (Connor, et al., 2002; Ellingson, 2005; Faulkner Schofield & Amodeo, 1999; Hearn & Higginson, 1998; Ragan, et al., 2008) Figure 1.1 Medicare Reimbursed Hospice Services (from Hospice facts & statistics 2008) Nursing care Medical social worker services Physici an services Counseling (including dietary, pastoral, and other) Inpatient care (including respite care and short term inpatient care for procedures necessary for pain control and acute chronic symptom management) Home care aide and homemaker services Medic al appliances and supplies (including drugs and biologicals) Physical and occupational therapies Speech language pathology services Bereavement services are also available for families (up to 13 months
12 Each member of the hospice interdisciplinary team maintains professional expertise in one of five dimensions o f quality of life (see Figure1.2 ): physical, functional, interpersonal, well being, and transcendent (Byock & Merriman, 1 998) Nurses, for example, provide the bulk of the physical (medical dimen sion ) care creating, maintaining, and (e. g., L i censed Clinical Social Workers) primary responsi bilitie s involve maintaining a person being. Home Health Aids and Certified Nursing Assistant s who help patients with their Activities of Daily L iving (e.g., eating, bathing, and grooming) C haplains and other religious leaders help patients and families with spiritual and existential issues (transcendence dimension ). In addition to requiring the use of interdisciplinary teams to deliver hospice care, Medicare requires hospices receiving re imbursement under the Hospice Medicare benefit to have 5% of its workforce consist of volunteers. Hospice volunteers who choose to provide patient care, as opposed to administ rative support, receive training to assist patients and families with social supp ort and respite ( interpersonal dimension). As Foster (2006) by providing patients and family members with social support to combat the isolation that usually follows a terminal pr ognosis (see also, Wittenberg Lyles, 2006)
13 Although each member of the team holds expertise in one of the dimensions above (e.g., physicians and nurses primarily care for the physical dimension), team members should respond, to some degree, to each of the dimension s as needed (Connor, et al., 2002) However, legal regulations limit the types of assistance certain members of the team can provide. For example, only licensed mental health professionals can do therapy and only nurses and physicians can admi nister medi cation. Nevertheless, the spirit of the hospice model of care grants all members of the tea m, including volunteers, equal influence in dictating patient care. In the next section, I outline some of the ways in which an egalitarian interdiscipli nary team approach to hospice care enables and constrains care as well as communication. Acco rding to Hayslip and Leon (1992) the blurring of professional roles and responsibilities inherent in effective interdisciplinary teamwork generates constraints,
14 i ncluding the pressure to extend knowledge and skills beyond professional bounda ries (see also, Ellingson, 2005) Some team members may feel a lack of autonomy because they remain accountable to the hospice patient and their team. Others may find that expec tations to work outside of professional boundaries allow for more creativity and atients and their families with achieving a death free of physical, spiritual, mental and social pain. Alt hough the interdisciplinary team model implies equality across team members, certain members of the team, especially physicians and nurses, hold the most power because their responsibilities dictate such authority. Whil e volunteers or Home Health Aid s can offer their opinion about what types of care patients should receive, physicians are responsible for certifying (for Medicare reimbursement purposes) services as necessary peak and whether or not their voices can influence care inherently constrain the type of services patients will receive. Dying Well, Achieving a Good Death There is widespread agreement that the role of hospice is to help the dying and their families achi eve a good death yet little consensus exists about the characteristics of such a death (Kehl, 2006; McNamara, Waddell, & Colvin, 1994) In its most basic form, a good death is a death free of physical and spiritual pain. The ambiguity of the concept allow s patients, family members, and hospice teams a great deal of flexibility to work towards this end. T ranslating the characteristics that define a good death into practical guidance for clinicians proves more dif ficult (Emanuel & Emanuel, 1998). Smith (2000 ) outlines 12 principles of a good death (see Figure 1.3 ), but does not address how to
15 achieve these ideals. Generally, the characteristics of a good death involve freedom from physical and spiritual pain through various medical and psychosocial interventi ons including medication, psychological counseling, spiritual consultations, prayer, physical therapy, massage, and music and art therapy. However, lack of economic, careg iving, and social support may require attention in order to help alleviate a patient s pain. For example, dying people may become preoccupied with t he financial well being of the loved ones they will leave behind, which in turn causes the dying person psychological pain. Kellehear (as cited in McNamara et al., 1994) described the five feat ures of a good death different ly by focusing on the internal (or personal) and external (or social) work of dying well which include such factors as ]he social life of the dying person, identifying awareness of dying, social adjustments and personal pr eparations, public (McNamara, et al., 1994, p. 1502). Although categorized differently, t he characteristics of a good death described by Kellehear correspond to the five dimensions of the quality o f life (Byock & Merriman, 1998) Scholars, however, recognize the importance of defining a good death as a series of interactions that should begin months before a person dies (Emanuel & Emanuel, 1998) rather than a single event (McNamara, et al., 1994) The amount of time a patient receives hospice care may complicate a hospice e length of a hospice stay was 71 days ( Hospice facts & statistics 2008), with some patients receiving hospice care for as little as a few hours or in some cases as long as several years. We can only speculate about the rel ationship between the quantity of time
16 a patient receive s hospice care and a good death; however, it seems the length of time it takes to process a terminal diagnosis and to develop trusting relationships with professional caregivers influences the ability to achieve a good death. The structure of reimbursement for hospice services under the Medicare hospice benefit is another factor with the potential to constrain communication about spirituality, dying and a good death. According to the Hospice Association of America ( Hospice facts & statistics 2008), reimbursement rates vary by the level of care an individual receives. The b asic level of care known as Routine Home Care, reimburses hospices at the rate of example, requires a daily visit from a Home Health Aid weekly visits from a nurse, counselor, and a chaplain, the daily rate for Routine Home Care will not cover what it costs a hospice to provide that level of service. Hospices then, must maintain a large enough census with patients who require minimal services in order to cover opera ting expenses. Increased numbers of volunteers (over the 5% required by Medicare) and donations also help defray hospice care costs Hospice employees may attempt to keep costs low by hoarding services and supplies (e.g., adult diapers, hand sanitizers, Un iversal Precautions, etc.) or prioritizing public contributions over care.
17 Finally, f amily dynamics and an emphasis on patient autonomy can further complicate ccomplish a good death Hospice focuses on the needs of patie nts and to focus almost exclusively on patient autonomy. Incorporating family members in hospice care brings its own set of ethical dilemmas (Hardwig, 2001) decline and the possibility of an eventual inability to express wishes for healthcare, ethical dilemmas can arise when families and caregivers attempt (intentionally or unintentionally) to underm Family members may disagree ab out which care decisions best meet the needs of a dying loved one. any talk about dying (Mamo, 1999) or insist on particular types of care including artificial nutrition o r hospitalization. The capacity to help patients die well in the face of
18 such familial and ethical dilemmas, presents communication challenges to the hospice Research on bio medical ethi cal dilemmas at the end of life tend to focus on the delivery and withdraw of treatment (Baergen, 2001) However, because the hospice philosophy prescribes a holistic approach, spiritual issues make up an important component of the hospice approach to health care ethics. Research (Phelps, et al ., 2009) desire for more aggressive care (p. 1141). Phelps and colleagues (2009) go on to say that l crises at the end of life. Accordi ng to Emanuel and Emanuel (1998) we know a great deal about how hospice intervenes when a patient has physical symptoms, but we know little about how staff meet psychological, socia l, spiritual needs and resolve ethical or spiritual dilemmas. Furthermore, our knowledge about the role of providing spiritual care as it relates to a good death is limited Spirituality in Hospice Research suggests that spirituality and spiritual issues comprise a particularly important elem ent of sense of dying and death (Kaut, 2002; Puchalski, 2006) The health care literature widely well being and health (Balducci, 2008; McClain, Rosenfeld, & Breitbart, 2003; Puchalski, 2006; Schenck & Roscoe, 2008) Dame Cicely Saunders, founder of
19 believing that the best type of care combined medical treatment (for pain and symptom control) wit h pastoral care (Bradshaw, 1996). According to Bradshaw (1996) Saunders a Christian fo people from all belief system s, not just Christianity, to serve and receive care from hospice. Therefore, hospice emerged as one system of health care that integrates spiritual care (Puchalski, 2006) Many schol ars draw clear distinctions between spirituality and religion associating spirituality with a search for meaning (Egbert, Mickley, & Coeling, 2004; Hall, 1997; Hermsen & ten Have, 2004; Keeley, 2004) whereas organized structures and practices constitute religion and religiosity. Willis ( 2007) contends that spirituality is a private matter, while people enact religion collectively and in public settings. T he concepts inform each other rather than subsisting apart from each other. In other words, accordin g to Hermsen and ten Have (2004) (pp. 354 355) The d istinctions be tween spirituality and religion acknowledge that while not everyone embraces a religion, a ll people are spiritual and can benefit from spiritual care. It is important to note, however, that scholarly definitions between spirituality and religion may reflect contemporary American discourse and not necessarily mirror cultural or social practices that take place in health care settings. s several challenges. First hospice and palliative care experts note the relative ease of diagnosing and treating physical pain over other types of pain people experienc e at the end of life (Callanan & Kelley, 1992;
20 Puchalski, 2006) Second, d espite the difficulties hospice professionals experience trying liefs and struggles, Kaut (2002) evidence of spirituality is like ly to be expressed in observable attitudes, beliefs, and (p. 226). However, some patients may not know, easily identify, or un derstand their spiritual needs, while other s may know and articulate them to their team. In other instances, c haplains and other hospice team members may have to draw them out by offering prayer, suggesting guided meditation, or asking patients about their be liefs related to the meaning of l ife, the purpose of illness or disease or exploring what matters most to a patient on that day. Since h needs for better quality health care at the end of life, these organizations use W hile the use of teams enables its members the opportunity to provide high quality holistic health care, it can also create ts and their loved ones achieve a good death. The ambiguity about what constitutes a good de ath and the ability to translate those concepts into clinical practices remains one of the quandaries explored in hospice scholarship. Similarly, the health care literature acknowledges the relationship b eing, but the ability to recognize and respond to spiritual needs remains elusive. I argue that additiona l research that seeks to study and in turn improve co mmunication at the end of life will further aid hospice teams in their goal of achieving a good death which includes spiritual care. The multifaceted nature of communication
21 about spirituality, dying, death and achieving a good death combined with various institutional structures, requires more research. Next, I will discuss the existing literature from the discipline of communication to illustrate the n eed for additional communication research regarding how hospice interdisciplinary teams communicate about spirituality, dying, death, and a good death. Health Communication In the introduction to th e Handbook of Health Communication editors Thompson, Dorsey, Miller and Parrot (2003) claim that a handbook signals the history and geography of a field of study and assert map. Alternatively, in a brief article in the American Journal of Hospice and Palliative Medicine, Yingling and Keeley (2007) take medical researchers to task for failing to turn to communication scholarship when research findings reveal that improving communication would enhance patient care and health outcomes. A review of the handbook reveals the marked absence of end of life (including hospice and palliative care) communication and its importance to health communication disciplinary topography. Though one section in the text describes research about breaking bad news this discussion focuses on communication skills training. However, communication scholars have studied death and dying and do find the area of study relevant to a health and well being (Foster, 2006; Ge ist Martin, Ray, & Sharf, 2003; Keeley & Yingling 2007; Toller, 2005; Wittenberg Lyles, 2006). Due to the limited amount of research from the field of communication about dying my review centers on research from other disciplines that focuses on
22 communi c ation about dying and death. T hen I turn to the contributions communication scholars made to our knowledge of these topics to establish the need for undertaking the current research project. Research ers (Mamo, 1999; Marrone, 1997) outside of the hospice s etting observe that talk about death frequently does not occur until necessary, such as following the passing of a friend or family member. W hen talk about death might be considered no longer inspire piety but rather, repugnance a sign of emotional instability, or bad manners. Within the family, one is restrained from letting go of these deep feelings for fear of unsettling (Marrone, 1997, pp. 8 9). Book (1996), and Portfiel d, Cain and Salidinger (2003), observe that when families do communicate about death, many of the interactions lack substance, often failing to address personal concerns and answer questions. In her study about family commun ication about death, Book (1996) found through through impressions and silence expressed by families throu gh implicit and explicit For example, one participant, named Linda, learned tha t her best friend lking about her fr and (1996) research reveals that communication in families about the subject of death can have negative consequences for adolescences including high levels of ethno graphic
23 a family stress and anguish for an entire family. Not all family communication about death yields negative reactions. In an other ethnographic study abou t a dying man and his family, FitzSimmons (1994 1995) found that the family member with the most frequent and open communication with the dying individual reported a positive experi ence and less fear about death. Whereas, the family member with the least a mount of communication and knowledge about the gravity of the situation reported a less positive experience. In sum, FitzSimmons (1994 1995) found that open communication about death helped family members cope with impending loss. Communication is also imp o rtant after death. Toller (2005) for example, investigated parental grief, discovering that many bereaved parents feel isolated, and as such, long for opportunities to talk about their deceased children. Despite research that supports the benefits of fr eely communicating about issues at the end of life and after death, people neglect talking about dying and death (FitzSimmons, 1994 1995; Zhang & Siminoff, 2003) Accord ing to Zhang and Siminoff (2003) families avoid talk about illness and dying, hoping t o maintain positive attitudes and to sustain the health of the ill family member. Miller and Knapp (1986) further observe that many people feel unprepared to communicate with people who have a terminal illness (see also, Ellis, 1995) Most do not know what to say and avoid conversations with the dying for fear of saying the wrong thing. Miller and Knapp (1986) outlined three strategies used by caregivers when communicating with the dying: avoidance, confrontation, and reacting. In the first
24 strategy, avoid ance, people tend to evade talking about dying or death by trying to bolster memories from the past were all examples of avoidance strategies. The confrontation strategy i r definitive statements such as nstrative displays such as openly crying in front of a dying family member or friend. Finally, the reacting strategy invo lves being more reflexive than the other two approaches and includes such practices as asking open ended questions and mirroring emotions. In addition to outlining these strategies, Miller and Knapp (1986) interviewed professional caregivers, specifically chaplains and hospice volunteers, about their experiences communicating with terminally ill people. Through retrospective self reports, these caregivers offered examples of what Miller and Knapp call wrong behaviors as well as advice for effective communi cation with the dying. Poor timing, offering false hope, platitudes and withholding feelings were some of the examples of wrong behavior. Advice included such suggestions as listening more and talking less, showing emotional commitment, and not worrying ab out saying the wrong thing. Miller and Knapp (1986) and others (Foster, 2006; Keeley, 2004; Keeley & Yingling, 2007; Toller, 2005; Zhang & Siminoff, 2003) draw attention to the need to move past our fears of saying the wrong thing to a person who is dying Not only does avoiding such conversations harm people who are dying but it also hurts the people who love t hem. Zhang and Siminoff (2003) found that people who fail to talk reported higher levels of stress, while those family members (about 15%) who spo ke openly about illness
25 reported less tension. The health benefits of candidly communicating about terminal illness, dying, and death may explain why health communication scholars are beginning to take up the charge to study end of life issues. Keeley and Yingling (2007) and Keeley (2004) researched what they term Final Conversations between the living and the dying. Conducting in depth interviews with bereaved family members Keeley & Y ingling (2007), and Keeley (2004), found that end of life conversation s ranged from talk about mundane activities to more poignant discussions about such topics as life after death. F oster (2006) and Wittenberg Lyles (2006) who explored end of life communication between volunteers and hospice patients, both shed light on th e value of the volunteer patient relationship for patients and their caregivers. With the exception of Foster (2006) each of these studies (Keeley, 2004; Kee ley & Yingling, 2007; Wittenberg Lyles, 2006) involves retrospective reports with survivors and do es not necessarily capture actual interactions with people who are dying. Nevertheless, these studies are first steps to understanding communication w ith people who are dying, as well as talk about dying, spirituality and death. In hospice, a person who re ceives their services can expect representatives to communicate openly about dying and death as one means to achieve the hospice miss ion. I n the book Communication at the End of Life (Foster, 2006) however, hospice volunteer and communication scholar, Eli ssa Foster, found that hospice volunteers rarely talked about death with their hospice patients. Furthermore, t he lack of conversation about dying and
26 The volunteers in F While others were motivated to become volunteers to assist towards a good death Volunteers are only one member of the hospice care team; therefore, it is pos sible that another member of the interdisciplinary team communicates with patients about spiritual issues, the dying process and death. Given the essential role teams play in delivering hospice services, I turn to the literature on communication in healthc are teams. Team Communication in Healthc are Settings characterized by team members who work from different orientations while at the same time engaging in joint work (Ragan, et al., 200 8, p. 108). According to Ellingson (2005), the use of interdisciplinary and multidisciplinary in health care continues to grow because this approach provides patients and families with comprehensive assessment and treatmen t of the whole person (see also Ei senberg, 2008; Ragan, et al., 2008) With improved assessment and treatment comes the expectation that the team approach will produce better patient experiences and improved health outcome s (Connor, et al., 2002; Ellingson, 2005; Faulkner Schofield & Amode o, 1999; Hearn & Higginson, 1998) Furthermore, the assumption is that increased collaboration and communication among people from different disciplines will decrease fragmentation of care and lead to effective teamwork (Eisenberg, 2008; Ellingson, 2005). The reality is that with the diversity of healthcare professionals expected to work together as a team comes additional co mmunication challenges, not fewer S ome health care professionals, for example, have
27 little education working with a team or, lack educ ation in interpersonal skills, while mental health professionals for instance, receive more training in this area (Connor, et al., 2002) Moreover, research (Ellingson, 2003) shows variations in information collection and sharing across disciplines that c hallenge effective teamwork. And while the team co ncept encourages egalitarianism, research reveals this is not the case (Eisenberg, 2008; Ellingson, 2005; Street & Blackford, 2001). S everal communication issues related power and role ambiguity (Ellingson, 2005); and challenges centering on role conflict, decision making processes, management of conflict, consensus building and cultural diversity (Street & Blackford, 2001) emerge on healthcare teams. 2 Despite the benefits of the team approach to health car e, little is known about how teams communicate to deliver holistic care (Connor, et al., 2002; Ellingson, 2005) Ellingson (2005) points out that the vast majority of research regarding healthcare teams measures patient outcomes and does not necessarily fo cus on how team members communicate to achieve those ends. Eisenberg (2008) further asserts that an emphasis on defining communication as message transmission discourages an appreciation for how communication is constitutive of effective teamwork. In light of these gaps in our ocumentation and explication of existing communication practices on teams ( Ellingson, 2005, p.7). Recognizing the need for more resea rch that focuses on health care teams i n action, communication scholar Laura Ellingson (200 5) conducted an ethnographic study 2 These communication issues are synonymous with the five communicative dimensions of teamwork (Eisenberg, Goodall, & Trethewey, 2007)
28 kstage, Ellingson (2005) articulated three important findings about team communication. First, team communication is boundaries between frontstage and backstage (Goffman, 1959) team communication are more fluid than previously theorized. Third, teamwork occurred outside of structured or formal communication channels (e.g., meeting and memos). Ellingson (2005) refers to this phenomena as embedded teamwork which acknowledges The discourse between dyads and triads of team members in which disciplinary (or professional) lines are blurred and redrawn; significant variation in teamwork and attitudes are expressed and change over time: and contextual constraints are reproduced, resisted, and negotiated through communication. (p. 70) Embedded teamwork then, encourages scholars to examine the formal and informal interactions between team members and the site where health care delivery (Eisenberg, 2008, p. 11). Few communication scholars however, have studied how health teams communicate about spirituality, dying and death in hospice or elsewhere Furthermore, as a whole, s pirituality and religious faith are noticeably absent from the health commun ication research (Parrott, 2004) despite agree ment that health communication
29 scholarship can contribute greatly to ou r knowledge and understanding (Wills, 2007) Communication scholars are uniquely positioned to contribute to this body of knowledge becau se as Yingling and Keeley (2007) observe communication researchers understand relational processes, their research fo cuses on tangible behaviors, and they are adept at analyzing communicative interactions in depth. Recognizing the importance of communication to the delivery of hospice care, my (2006) findings about hospice volunteer limited communication about dying and death and poses the questions: To whom, if anyone, do hospic e patients talk to about death, and w hat is the nature of these conversations? In addition, what role does this communication play in a good death ? In the remainder of this manuscript, I discuss the research methods I use d to answer these questions and the data collection process. First, I will describe in more detail the
30 C hapter 2 Methods Over the years, thanatology res earchers employed both quantitative and qualitative methods to examine questions about death and dying with the bulk of our knowledge coming from quantitative measures. Qualitative methods have gained popularity among thanatology researchers for their abil ity to capture the details of lived experiences (Caverhill, 2002; Gilbert, 2002; Wright, 2003; Wright & Flemons, 2002) Qualitative d ata collection methods, such as interviews, allow informants to look back upon their experiences. While retrospection allow s informants to make sense of their experiences (Lindloff & Taylor, 2002; Weick, 1995) such methods have limitations. This project, therefore, used participant observation and interviews, allowing me to examine the lived experience of dying as it happened and as told by patients, family members, and hospice staff members Such research methods also compliment studies about communication and interdisciplinary t eams in action (Ellingson, 2005). Observing team meetings and shadowing team members as they inter acted with hospice patients positioned me to observe communication about dying and spirituality from several angles and answer the following research question: RQ 1: How do hospice interdisciplinary team members communicate with hospice patients and their families about spirituality, dying and death?
31 The research q uestion emphasizes the types and topics of communication investigated the function of communication in achi eving a good death. Therefore, I offer the second research question for investigation: RQ 2: In what ways do hospice interdisciplinary team members use communication to achieve a good death for their patients and families? To help answer this research ques tion I used participant observations, as well as in depth interviews with hospice interdisciplinary team members from each of the five quality of life dimensions t o collect narratives about experiences with hospice patients. In addition to understand ing a n individua retrospe ctively, interviews usually elicit experiential knowledge in three forms of discourse: stories, accounts (excuses or justification for behavior), and explanations (of behavior) (Lindloff & Taylor, 2002) In terviews, therefore, supplemented and enhanced observations in the field. Next, I describe the data collection process in more detail. Data Collection Process In April of 2007, I received a competitive research assistantship from the University of South F of Life Studies to undertake this project In the original project, I requested to work with two community based non profit hospices but only collected data from one organization due to time and institu tional constraints In addition, I originally intended to observe only with chaplains, but was encouraged to modify my research design to observe all members of the interdisciplinary hospice team. As a caveat for conducting this research project and
32 gainin g entry into the organizations, I attended new employee orientation for each hospice (in August 2007 and in January 2008 respectively), and secured Institutional Review Board (IRB) approval from the University of South Florida in November 2007. In addition I completed 72 hours of work as designated by each hospice for a total of 144 hours of unpaid labor. Attending orientation training helped orient me to each organization including the I (IDT) role in the larger hospice structure. Completing training also provided me access to observe team meetings and attend training sessions relevant to my research offered by Coastal Hospice I did not collect any data, however, while I awaited IRB approval Informed Consent Process for IDT Memb ers. Immediately after receiving process of recruiting IDT member participants from one home based team. The director of research at Coastal Hospice recommended the Sun flower team, which worked in a gave a presentation to the Sunflower team about my research and requested volunteers for participation. 3 In addition to explaining the goal s of the project, I informed team members that there were four elements of involvement, each voluntary. First, some participants might wish to give consent only for participation in the component of my research that took place at team meetings. Second, oth ers might only want to volunteer for the interview portion of the study. Third, team members could volunteer for job 3 The office support staff does not have in home patient contact and only attend team meetings occasionally, therefore, I did not recruit then for participation in the study.
33 shadowing allowing me to observation their interactions with patients Fourth, team members could agree to all of the above le vels of parti cipation. And finally staff could choose to not participant in any element of the study. I explained that I would take no notes about individuals who did not consent to participate in the study. Fourteen of 29 team members agreed to participate during the initial recruitment and a fifteenth person who was not in attendance during my presentation, subsequently enrolled after the start of data collection After the research presentation and informed consent process, I continued to attend interdisciplinary team meetings each week collecting data by openly taking fieldnotes I increased my under expect others to perceive me as a full fledged member of the team, I hoped my presence at meetings would illust rate my commitment to the project and my interest in understanding the hospice approach to care, while simultaneously normalizing my presence during meetings and in the field. In addition to my learning about patients, o bserva tions of team meetings affo rde d me the opportunity to become educated about the Medicare re will discuss in more detail in chapter three. I also used t he team meetings to schedule observations and interviews with team members. Job shadowing with team members as they completed their regular day to day activities allowed me to direct ly observe and interact with hospice patients.
34 Patient Informed Consent P rocess. My completion of new employee orientation and training allowed me to accompany IDT members to patient visits without receiving patient informed consent prior to the in i tial visit Participation in my study and subsequent data collection, however, r equired securing informed consent from hospice patients. Though I observed during several patient visits, those patients did not become participants until consenting. I encouraged t eam members to use their discretion about informing patients in advance abo ut my shadowing. In certain instances, some IDT members contacted patients prior to my visits and secured verbal permission for me to shadow while others explained my role at the time of the visit. In both instances, I explained my research and secured inf ormed consent for participation in my study at the time of a visit. In an attempt at ethical and mindful informed consent, I gauged the appropriateness of soliciting patient and family (or caregiver) participation in my research and subsequent informed co nsent based upon the needs of the patient at the time of observations. I did not request participation in my research during a new admission or For example, while shadowing the chaplain we arr ived at a home to find the hospice patient was having difficulty following the course of conversation While the chaplain and I explained my student the study. Instead, we chatted and ended the visit with prayer. I frequently relied on the expertise of the team member as well as my own impressions to determine the appropriateness of discussing and recruiting participants for my research. I also in structed
35 team members to fo cus first on their duties and only initiate conversations about my Within weeks of presenting my study to the Sunflower team, I scheduled several appointments to observe team members interacting with p atients. Fieldwork Observing Team Members Communicate with Patients My initial goal for data collection was to observe as many team members as possible interacting with as many patients as possible. However, I soon realized that this might not be the b est approach for several reasons. First, the progression of disease and the severity of a because she might die the following week. I knew that the length of time patients spent in hospice and their eventual deaths would challenge my ability to observe interactions over time. The pace at which patients died surprised me. I recall telling the team leader, Dani, short for Danielle, about this revelation and she just laughed at my naivet. Furtherm ore, my commitment to obtaining informed consent under what I considered the contextually appropriate time meant that I might see six patients in a week, but only recruit one participant. In addition, if I successfully recruited a participant who died the following week, there was no guarantee that my observations would yield any relevant data. A second problem involved the team members themselves and their roles as gatekeepers. Team members consistently talked about patients in terms of those who might be team members who initially volunteered to have me shadow them never scheduled any observations because it seemed to them that they did not have any good patients.
36 Similarly, th e volunteer coordinator claimed it was too difficult for me to observe with a volunteer because of scheduling and timing. When I suggested that she could give my contact information to any willing volunteer, she implied that relational dynamics between the patient and volunteer further complicated my ability to observe. I sensed go. suspect her inexperien ce with research contributed to her lack of assistance. I did however, attempt to contact the one v olunteer whose telephone number she provided me, but his personal travel schedule was prohibitive to shadowing him during my data coll ection timeframe. The ethical and organizational barriers to recruiting participants led me to modify my approach to data collection. I opted to observe with the team members most open to my shadowing them and selecting patient/participants based upon thos e observations. Once I established regular visits with a team member, I shadowed them weekly. This approach allowed me the opportunity to observe team members and their patients interacting over time as their relationships developed and as their disease pr ogressed. Another challenge to my ability to observe patients over time and with a variety of team members involved the plan of care and scheduling of visits. Not all patients receive care from representatives from all five disciplines. In other words, a patient who sees a chaplain may not receive many visits from a counselor. Some patients may never receive a visit from a Home Health Aid because their illness does not warrant it or they have sufficient assistance from another caregiver (e.g., family membe r). Additionally,
37 some team members such as nurses and counselors schedule regular weekly or bi monthly visits whereas chaplains schedule their visits as requested. The team physician only visits patients under extreme or unique circumstances and while I did have the opportunity to observe one such visit, the patient was severely cognitively impaired due to mental illness, and unable to consent to participate in a research study. Home Health Aids have their visits scheduled for them by an administrative s taff person and frequently do not know who they are going to see until the day of a visit. The ability to dictate which patients I could see, and with which team members, and when, was frequently outside of my control. The barriers described above and the subsequent modifications I made to my data collection process created some inconsistencies in my data reflecting my inability to collect data equally among team members from each of the five IDT disciplines. However, I was able to collect rich data about a small number of patients and team members. One social worker in particular, Allison, appears repeatedly in the narrative accounts of my observations. As such, I introduce observations with other team members in the form of vignettes from fieldwork and in terviews alongside more detailed stories where Allison is a central character. Documenting observations. I captured detailed observations during team meetings and in home visits in written and audio recorded fieldnotes Although I openly took notes during team meetings, I did not take notes during patient visits. I captured observations after leaving a visit because I did not want my note taking to distract team members or side c ng
38 visits. T aking notes was synonymous with th e role of a hospice team member, yet I did opportunities to explain my data collection methods again. These questions allowed me the occasion to treat informed consent as a continuous process (Ellis, 2007) Interviewing Hospice Team Members. In addition to conducti ng fieldwork, I interviewed six te am members (three counselors, a chaplain, a Home Health Aid and a registered nurse) at the conclusion of fieldwork. These semi structured interviews (see Appendix A for interview schedule) focused on perceptions of their work at hospice, the role of communication in hospice and in facilitating a good death. I also used interviews as an opportunity to probe about some aspects of the patient visits I observe d. Responses to interview questions were audio recorded, transcribed, and used to inform interpretations of narrative themes described in the following section. Analysis of Data The use of narrative as a method of inquiry is gaining in popularity among s cholars interested in capturing the human experience for the social sciences (see, Denzin, 1997; Lieblich, Tuval Mashiach, & Zilber, 1998; Mumby, 1993; Polkinghorne, 1988). In this project, my use of narrative as a method of inquiry includes the analysis o f narratives and narrative analysis (Denzin, 1997; Ellis, 2004; Polkinghorne, 1995) According to Ellis (2004) analysis of narrative involves using narratives as data and identifying themes across and within stories. Narrative analysis involves the collec tion of
39 events and happenings (Polkinghorne, 1995) (Ellis, 2004, p. 195) Each narrative presented here represents one or more major themes reflected in communication among hospice team members and thei r patients. I then add (Ellis, 2004, p. 195) Ultimately, what I sought to do in my analysis was borrow from multiple genres and multiple methods of analysis in an approach known as crystallization (Ellingson, 2005, crystallization sought to go beyond the use of triangulation in research studies in an e ffort Richardson goes on to say that ording to Ellingson (2009) original conception of crystallization did not explicate a methodological or research process. The version of crystallization c ombines multiple forms of analysis and m ultiple genres of representation into a coherent text or series of related texts building a rich and openly partial account of vulnerability and positionality, makes claims about socially constructed meanings, and reveals the indeterminacy of knowledge claims even as it makes them. (p. 4) While there are limitations to crystallization (see, Ellingson, 2005, Appendix C), this practice afforded me the opportunity to move back and forth in 1.) the creation and
40 analysis of narratives; 2.) the interpretation of those narratives using various communication theori es and concepts; and 3.) work along the art and science continuum of socia l science research (Ellis, 2004). This mosaic like analytic approach allowed me space to tell a story of hospice informed by multiple voices. For example, in chapter four I break away from the narrative of one patient to delve into the theoretical implications of politeness related to talk about death. I u se observations, interview data and existing literature to capture the many facets of end of life communication. To begin the process of analyzing th e data I collected during field work, I converted observations into fieldnotes This process allowed me ad ditional opportunities for reflection and to engage in additional inquiry and a deeper level of analysis (see Richardson, 2000) tients and team members across observations to hone in on the types and topics of communication. I also made in text notes while writing and reviewing fieldnotes and developed lists of topics to explore and potenti al literatures to review for aiding additi onal analysis. With the goal of identifying specific examples of communication about spirituality, dying, and death, I initiated a closer analysis of the data a fter completing observations. I searched fieldnotes for instances when verbal or nonverbal com munication evoked emotions (among participants or the researcher), long silences, or avoidance of topics such as funeral planning or advance directives. I also scanned the fieldnotes for conversations about topics related to dying, death, and spirituality, such as pain or loss of autonomy, prayer, talk of God, and so on. My goal for analyzing data was
41 not to thematize or categorize all of my experiences, but to describe richly communication related to spirituality an d dying. To answer the research questions I found it important to focus in on these conversations rather than the breadth of communication that takes place in hospice. Absent the emphasis on creating exhaustive categories, this approach to data analysis is similar to the constant comparative met hod described by Frey, Botan, and Kreps (2000) Mining the data, I selected experiences with four participants to serve as exemplars of team member and patient communication about spirituality, dying, and death. I then took the fieldnotes of my observation s with these four patients and developed narratives of each. The process of creating the narratives produced additional insights about field observations, which sometimes led me back to other stories in my points for additional in depth analysis and interpretation of communication. The first narrative focuses on talk about dying and death, the second describes spirituality and spiritual pain, the third discusses communication about denial of death, and the fo u rth section concerns missed opportunities. Where appropriate for explaining or enhancing research findings, I incorporated interview data into the narratives. Finally, to analyze the communication illustrated in these stories, I applied various theoreti cal orientations such as (2001) Communication Bou ndary Management to understand self disclosur e in interpersonal relationships. Politeness Theory (Fraser, 1990) and the Sta ges of Dying (Kbler Ross, 1969) aid interpretations of communication ab out taboo and mysterious topics such as death and spirituality.
42 Now that I have established the need for research about communication regarding spirituality, dying and death, made an argument for studying these topics in a hospice setting, and described t he research methods I used in this study, I will describe my initial introduction to Coastal Hospice
43 Chapter 3 Entering the Field My first introduction to hospice occurred prior to beginning the present research project. I was a hospice volunteer for a few months before relocating to Florida to begin my doctoral studies. I found my brief stint as a volunteer less than invigorating. The hospice patient I was teamed with probably was not the best fit because we had little in common and therefore not much to talk about but I continued to sit with him because I recognized his 20 something year old grandson, his primary caregiver, needed a break. Although my introduction to hospice was not what I hoped for (see e.g., Foster for an excellent narrative ethnogr aphic account of the hospice volunteer experience), I intended to return to hospice volunteer work once my life settled. Almost three years after volunteering at a hospice, I found myself back, but this time sitting with patients had a much different objec tive because I was conducting research and not an altruistic volunteer. At least this is what I thought when I began conduct ing research for this dissertation. This time, as a researcher, I would have more access to the behind the scenes workings of hospic e. Orienting and Acclimating to the Hospice Culture After attending new employee orientation in August, I found myself energ ized by the thought of working with Coastal Hospice one of the largest not for profit hospices in the United States. I had the sen se that my fellow orienters and I were equally enthusiastic to start working with patients. I attributed this atmosphere to all of the speakers we h eard
44 during orientation who appeared genuinely passionate about their work. Most of the staff we met during our five day orientation worked for Coastal for a least a decade. I interpreted a positive sign about the quality of the organization. research institute who made several recommendations for middle managers I should meet and interview for background purposes He also recommended a home based hospice team to recruit for my study. Everything was falling into place and my research was getting underway. Then he pr ovided me with five three ring binders of various sizes containing materials about hospice training and education. Within weeks of my meeting wi th the research director, I was attending team meetings and l earning about patients from nurses, counselors, chaplains, and Home Health Aid s. After these first few meetings, I recognized that I had a lot to learn about hospice not talked about in books and journal articles. In the following section, I discuss those insights by describing the structure of Interdi sciplinary Teams (IDT) at Coastal Hospice and recounting what takes place during a typical Interdisciplinary Team Meeting. The Structure of Interdisciplinary Teams Coastal Hospice serves people who reside in Palm County. Whe re a patient lives within the c ounty determines hospice patient assignments. For example, the patients assigned to Sunflower, the team I studied for this dissertation, reside in the northeastern most portion of Palm County. Other teams, all designated by a type of flower, provide care t o patients in the remainder of the county. The Violet team for instance, is a facility based team, where as the Poppy team serves a southern portion of the county and so on. There are 17 home and facility based teams and whic h
45 describes the number of patients enrolled in hospice, usually runs over 2000 patients. The not including nit of care. The Sunflower team further divides its geographical patient care zone into Sunflower South and Sunflower North. The regional distinctions within the Sunflower team, however, are not rigid and have more influence on IDT meetings than anything else. Sunflower South meets for IDT during the 1 st and 3 rd weeks and Sunflower North meets the 2 nd and 4 th weeks of the month. In addition to team meetings, all members of the Sunflower team meet twice a month for Team Supports, which serve as an opportuni ty for the team to get additional education on the topic of choice (e.g., pain management, employee engagement) Sometimes Team Supports involve do ing something fun and not necessarily directly related to patient care, such as watch a movie or learn ing how to decorate for the holidays like a professional. No matter the content of the Team Support, the goal of these meetings includes giving team members opportunities to bond, as well as social or educational support. The distinct disciplines (except voluntee rs who meet monthly with other volunteers) dictate the topic of Team Supports in an effort to ensure that no one discipline co ntrols the subject or types of activity Backstage Team Meetings in Action The structure of teams and their respective meetings function to support patient care so that team members with patients in common meet as a group. Team meetings,
46 however, do not involve the creation or development of patient care plans, and much to my surprise discussion of patient care does not constitut e the majority of IDT meeting talk. A t Coastal Hospice and on the Sunflower team (although I observed similar interactions within another facility based team), a meeting introducing new or incoming patients to the team and dete rmining if existing patients remain hospice appropriate based upon Medicare criteria. The interdisciplinary nature of team meetings resides in the presence of the different disciplines as opposed to the quality or type of interaction. The team meetings are multidisciplinary with multiple disciplines represented, but without much, if any collaborative interaction among team members. The room set up and sea ting arrangement contributes to lack of interaction a cross disciplines as well. Some of the rooms are set up using a horseshoe seating arrangement, but the set up for the majority of meetings frequently uses a t shape and he team physician always sits at the head of the room near the team leader and the other members segregate themselves by discipline Nurses frequently si t near each other, working from their laptops, while Home Health Aids for instance, si t together at another table. While team meetings were fragmented, p atient care however, is interdisciplinary meaning that if necessary, patients can receive care from several disciplines who work jointly to accomplish a mutual goal (Ragan, et al., 2008) (2005) study, embedded teamwork, in the form o f telephone conversations, text messages, and e mails comprised the bulk of patient care at Coastal Hospice. Observing
47 team meet ings, therefore, offers few opportunities to study the development of, or adjustments to Team meetings s e rve a secondary purpose, however. By bringing the team together, hospice staff can offer each other emotional support in response to the challenges that arise when providing care to the dying and their caregivers. A typical team meeting begins with the ch aplain who uses various activities to promote r eflexivity and encourage social support that serve compleme ntary roles The team meeting is where we first see Incorporating Spirituality in the Organization Robin, the Sunflow er ying to get people to turn their attention from s ide conversations, signing in, reading the roster, and eating lunch (this team meets at noon). is story by e you, We were driving in the right lane when suddenly a black car jumped out of a parking space right in front of us. My taxi driver slammed on his brakes, skidded, and missed the other car by just inches! The driver of the other car whipped his head around and started yelling at us. My taxi driver just smiled and waved at the guy, and I mean, he was really friendly. So I asked, 'Why did you just do that? This guy almost ruined your car a driver taught me what I now call, The Law of the Garbage Truck He explained that many people are like garbage trucks. They run around full of garbage, full of
48 frustration, full of anger, and full of disapp ointment. As their garbage piles up, garbage and spread it to other people at work, at home, or on the streets. The bottom line is that successful people do not let garbage trucks take over their day. treat you right. Pray for the ones who don't. Life is ten percent what you make it and ninety percent how you take it... ne of the counselors asks. ies with the hint of a S outhern accent. The messages the chaplain brings to the group usually relate to the ways team members can reduce stress or make sense of their field experiences, and offers suggestions for how team members can live a more spiritual life both at work and a t home. After the motivational reading, the chaplain will give the team what she calls an ashtray affirmation which is a quote on a colored strip of card stock pe ople can take with them and refer to while they are out in the field to calm their nerves or regain focus. It is not clear, however, whether team members use the ashtra y affirmation in this way or if the quotes have a more ephemeral q uality. In the time that I spent with team members traveling in their vehicles going to did not see many of the quotes in ashtrays. T his segment of the IDT however, is an opportunity, once each week,
49 for team members to focus inward while communally acknowledging the challenges and constraints of hospice work among understanding colleagues (Ragan, et al., 2008) The same is true for prayer. Following the readi ngs, Robin asks the team if anyone has a prayer request. One members or caregivers. Team members also make personal prayer requests. Usually team members call out the names of patients who are imminent ( within days of death) or for surviving family members who just experienced the death of their loved one. Other requests are for hospice team members t family is traveling long distances they will receive prayer from the team. I found the seamless incorporation of religious and spiritual practices such as prayer and inspirational readings and quotes ast onishing because most organizations oppose the presence of religion or spirituality in the workplace Yet I did not witness anyone protest the use of the w and end ed the requests for pray er. The chaplain frequently used sil ence and deep breathing techniques tools used in meditation and other spiritual traditions, to focus inward and concentrate on the here and now. Incorporating such alternatives to traditional religious practices offers those who may not find any particul ar value or benefit in prayer another option for engaging their own conceptions of spirituality. The inspirational readings, as well as the time for prayer, afford team members the opportunity to tune out the challenges of working in the field. As Ragan an d colleagues (2008) note, such self care is an important component for team
50 member s working in end of life care where benefit all team members, and is particularly advantageous for staff members who may not make t ime during their workweek to take a conscious break from the emotion laden environment However, this portion of the team meeting is not voluntary and unless an employee ar rives late, she or he must participate (even if only passively). The first ten to 15 minut es of a team meeting stand in sharp contrast to the remainder of the IDT meetings, which concentrates almost exclusively on the business side of hospice Medicare re imbursement. From Spirituality to Hospice Appropriate attention to any announcements and then moves on to new patient admissions. The counselor and nurse assigned to a new patient (and their caregiver if they have one) introduce them to the team in one of two ways. If the nurse and counselor have met with the patient prior to IDT, usually during a joint visit, they share what they know about the patient based upon that visi description includes her current medical status (e.g., what brought the patient to hospice), a brief synopsis of her medical history, if relevant to hospice diagnosis, and any potential or existing psychosocial issues. If the nurse and cou nselor have not met with the patient prior to the team meeting they will The counselor first presents new patients, referred to by team members as n ew a dmits (short for new admission), follow ed by a report from the nurse. Interestingly,
51 team c ounselors (of which there are four on Sunflower team) provide team members with the medical and not psychosocial in formation about a new admit. For example, the counselor offers the patients name, sex, age, relationship status, and diagnosis, but does not mention mental health i ssues or resource needs. Counselors al so indicate if a patient esuscitate der, living will, advance d irective s funeral arrangements, and an evacuation plan in place. On the face, these documents appear only legal in nature to protect hospices, but team members perceive patient s with such documents in place as more ready to acce pt their fate than patients who, for example, refuse to have a do not resuscitate order. The team leader and psychosocial team leader inquire about these documents during team meetings and encourage staff, especially couns elors, to work towards getting the patient to complete them as soon as possible. Following the report by the counselor, the nurse then repeats much of the same including status of pain and symptoms, and w ill include in her (there is only one male nurse on the team) report psychosocial matters such as anxiety or caregiver issues. The way team members give report about New admits offers a clue into how counselors and spiritual issues and the amount of import these issues receive during IDT. The information social status is
52 There are two possible explanations for these types of reports. First, it generally takes more than one visit to completely assess therefore, initial and superficial impre ssions, such as those above, become the best description of a or status does not dictate eligibility for the Hospice Medicare benefit. Therefore, such issues receive less attention than whether th e admitting diagnosis meets Medicare criteria or the types of medicatio n a patient takes to control, for example, pedal edema (collection of fluids in the feet) is reimbursable under these criteria. Spiritual needs receive even less attention during initia l new admission reports than psychosocial issues. Counselors and sometimes nurses, not request a ch he report suggests that team member s do not complete a spiritual assessment per se, but instead ask a n ew patient if they would like to spiritual needs appears in chapter 7). In addition to limited information provided during IDT about n ew admits psychosocial and spiri nteer Coordinator may pick up certain clues that a patient is lonely or isolated during a report and ask if a visit from a volunteer, pet therapy, or message therapy m ight benefit that patient, but volunteer is generally absent from initial reports.
53 It is no coincidence that bio medi cal concerns receive substantially more focus than the other needs of patients despite the use o f interdisciplinary teams because biomedical care determines whether a patient is hospice appropriate; therefore the psychosocial, spiritual, or interpersonal n eeds of a patient or their fam ily members are secondary. Once the nurse establishes a t he question of how team members assess her other needs, as described by the dimensions of hospice care, remains unclear What is evide nt is that team meetings are not the site for creating or adjusting care plans. N ew admission reports emphasize bio medical needs and de emphasize or gloss over psychosocial or spiritual needs. Striking a balance between the five disciplines on the team is an issue that arises patients do not nee d lots of care from their nurse. A visit every 14 days, the minimum required by Medicare, may suffice to manage a pa mptoms and medication. T his same patient however, may need m ental health counseling from a Licensed C linical Social Worker, assistance from Home Health Aid s to manage Activities of Daily L iving (ADLs) or frequent visits from a volunteer to combat social isolation and loneliness. By focusing primarily on bio medical needs during team meetin gs, a patient other needs receive less attention, sending an implicit message to other non biomedical staff about hospice care values. Team meetings then reinforce a b iomedical model of care and situate the other disciplines on the fringe. Furthermore, this places additional burden on nursing staff to assess and sometimes even offer care outside the boundaries of their professional training and expertise.
54 Patients and their ca regivers do not have full knowledge or appreciation of the types of care they could receive from hospice when only two members of the IDT visit at the time of admission. This places additional burden on team members (usually nurses) to identify and recommend the ones could benefit from the full range of ho spice services. Despite the fact that hospice uses an interdisciplinary team approach to care, the organizational and institutional structures that sha pe hospice give nurses the primary responsibility for creating and managing patient care plans. As such, nurses have a great deal of power in determining whether patients receive non biomedical services, including mental health counseling, social support, or Home Health Aid s In fact, nurses establish the need for a Home Health Aid and the frequency of their visits during their initial assessment. The volunteer coordinator assigns volunteers to patients and chaplains get patients by referral, which offers h ome health aids, volunteers and chaplains no opportunity to conduct an assessment themselves much less dictate care plans. These team members then, become resources, as opposed to equals, for nurses and counselors to call upon as needed. Once the nurse c ounselor dyads present all of the new admissions, the nurses quic kly state whether their existing patients, whose hospice re certifications are due, are complete. Next, in the presence of the team physician, nurses discuss existing patients whose hospice r e certification periods are approaching to determine if these patients remain eligible for Medicare reimbursed hospice care. I emphasize Medicare eligible or hospice appropriate because there are times when a patient may, in the opinions of the team membe the question
55 surprised if this person died within the nex me aning the patient is expected to live beyond six months, then the team should move to disc harge the patient from hospice. H recertified. ciently justify their eligibility for hospice care. include identifying whether or not a patient has disease specific symptoms related to their hospice diagnosis Hospice care and its subsequent reimb ursement through Medicare illustrate how the bio medical side of dying drives care and financing. Discussions about psychosocial and spiritual issues, however, receive more focus if t hese factors interfere with medical care. In other words, if a patient ha s a mental illness or perceived as mentally ill then team members bring these challenges to the For example, if a nurse is unable to control a patient the nurse will ask the team physician for recommendations about how to proceed. If a patient is non compliant, has mental health problems, or lacks ce rtain resources that influence her or his quality of life, a team member might mention this challenge at a team meeting. What is interesting about difficult patients or patient challenges presented to the team relates to how feed back about helping the pati ent evolves and who team members call upon to offer opinions. Rather than ask the advice of the mental health pr ofessionals on the team, nurses will usually defer to the team physician or even the team leader (another
56 nurse) for counsel. The lack of collab oration across disciplinary boundaries is problematic for effective teamwork and promotion of an horizontal hierarchy (Eisenberg, 2008). Hospice scholars (Connor, et al., 2002) claim that their site is the place where interdisciplinary teamwork fully dev eloped. Team meetings, however, do not represent all of the work that comprises hospice care (Ellingson, 2005). On the other hand, these to creating occasions for pr ofessional and social support. In the next chapter, I will discuss how team members work with hospice patients during in home visits.
57 Chapter 4 Friendship & Dying a counselor on the Sunflower team, tells me en thusiastically at IDT. a nurse on the team, asks as she crunches on her salad of field greens, dried fruit, and various see ds, and low fat raspberry vinaigrette. goooood looking for Judy to match her eagerness. verve amusing because of the first conversation we ever had when I asked my standard introductory questions about what brought her to hospice. Called by God to wor k for hospice, Judy quit her long time job as a surgical nurse. At the time, I was not really prepa red to probe about the religious grimage to hospice, but I noted most about working in the operating room was th e unconscious state of her patients. of communication with patients appealed most to Judy about working in surgery. Given the reputation surgeons have for being arrogant I asked Judy what the work environment was like, and she said that it was not at all problematic. How odd I thought, but I
58 illustrative of the true power of a spiritual message from God. I n her forties Judy is similar to the other nurses on the Sunflower team. She has short blonde hair, practices yoga, and attends church regularly. What sets her apart from the other nurses is her dry wit and firs t rate sense of humor, yet she is rarely the most animated, at least not without good reason. Judy and Allison, who share most of the same patients, are a Ying Yang tag team which works most of the time, but as I learned over the next few months these differences sometimes crea ted friction related to management of patient care Good P atients Equals Good Participant s During the IDT meeting I wondered what mad e Sonny a suitable participant. One reason Allison suggested him related to his emotio ns he cried during their visits. I am not sure why this qualified Sonny over others, but I met him willingly. Other team members similarly thought of their patients as good fits for my study Immediately after introducing my study to the team, I had a list of at least 10 good patients. I never asked anyone directly what made a patient good but one team member, a Family Resource Specialist (FRS), a non licensed social work position recommended a patient to me because she told interesting stories about playing the fiddle in popular country mu sic venues. Even though I dislike country music and its requisite fiddle playing, I was in no position to discriminate. I met this patient once (without the FRS) and I did not find her good at least not for the reasons cited by the FRS. To begin with, the patient was depressed and had no interest in playing t he fiddle or offering any anecdotes from her past. I did not resent her depression, but expected it the woman was frail and in pain
59 which she attempted to control exclusively with dollar store brand topical analgesic. Wh at I did begrudge was her orderin g the chaplain and me around. She insisted that we clean out her refrigerator and take out the subsequent garbage. Often times, good patients were those whom the team members liked, were agreeable, but not necessarily overtly spiritual or open to talking about dying. I wanted team members to allow me to observe with them and see what happened I nstead, many became gatekeepers who sought to shelter me from problem patients. Each time a team member told me they had a good patient I tried to reiterate the val ue of seeing any patient willing to let me observe. Looking back I suspect that some team members, the FRS in particular, used the contrived good patient criteria to avoid hosting me in the field. Thankfully such barriers did not exist with all team memb ers and I arranged to shadow Allison when she and Judy planned to visit Sonny during the upcoming week. Not a Hospice Death Before Allison could introduce me to Sonny, however, tragedy struck the Sunflower team just days three days into my observations I was in the field with Carrie, a nurse when she received a page saying there was fathom what type of emergency the page referenced. At first I thought aloud that maybe someone fell and broke a bone or at worse, had a heart attack in the field I then speculated that maybe the page was one way to get all of the employees back to the office for a holiday party it was December after all. T he nurs e noted such a page was a terrible way to invite someone to a party. I concurred and kept any further musings to myself
60 realizing the useless ness of my predictive powers. Instead, we opted to change the subject and I asked a few questions about Ca rrie and her experience at hospice. Carrie jogged every day, was a vegetarian, taught yoga and had a Guru. She snacked on raw almonds and other healthy snacks between pati ent visits throughout the day to keep up her energy We had several interests in com mon from yoga to raw almonds, yet despite learning a great deal about Carrie in just half a day I felt as though she was inaccessible in some unidentifiable way. As we drove east towards the office, stopping and starting for the traffic lights along Bay Shore Road, I asked Carrie about her work as a psychiatric nurse. I then asked her about the transition from the drama and dangers of psychiatry to the mellow world of hospice when the topic of her most memorable patient came up. She proceeded to tell me a mesmerizing story her gaze communicates that she is reflecting back on an image of her patient in he r mind. clear he was imminent within 72 effort to determine if I understand the concept. conti I
61 respond with another filler. After a fitful night sleep, she rose to find that the patient with whom she had grown so close to had died. The connection the two had trans cended their Guru instructed her to do a ch ant. Little did I know I would do the same chant just a few hours later. Car rie and I pull into the tree lined parking lot and ponds serene, reminding me of Lake Tahoe. As we walk up the sidewalk to the entrance of the d esignated meeting room I notice the faces of several managers (who m I interviewed just a few weeks earlier) throug h the tinted windows. I feel surprisingly composed desp ite having no idea what we are walking into, yet out of place because of my insider/outsider status a s a student researche r. I open the door and allow Carrie to en ter first and guide the way. I see a police officer talking with people in another room when Bobbie the taff Nurse greets us. surveying the scene in search of clues. I have no idea who Bobbie i s talking about and the gravity of the deaths slides off me Carrie turns around and repeats the message to me again as if I have not heard a word ink I apologizing fo r my ignorance. Carrie explains that Lisa worked in the office for the Sunflower team and that S haron worked on another team. Lisa an d Sharon had recently started dating after Lisa divorced her
62 husband. Bobbie tell husband is the lead suspect in shooting the couple as they slept and killing their two small children before shooting himself on the side of the road. who we re crying and hugging each other in futile attempts at finding comfort. P eople from all levels of t he organization wandered about aimlessly. I could hear employees talking about the circumstances o f the deaths in an effort to process their meanings. Sudden death brought about by violence did not constitute a good hospice death. I watched as the Sunflower team leader Dani, tell everyone who came to console her to describe fresh ink one tattoo covered her ex of their two children and the other a religious symbol of peace protected her from the The significance of this tragedy for the Sun flower team and Coastal hospice is beginning to sink in Several people offer ed to er that morning, but I insist ed on staying. I thought maybe it would prove helpful to the team to have someone no t so close to the victims present I was not sure what, if anything I could or would do if I stayed. I also di d not know how I would get home but I decided to deal with that issue later. A half hour passed and I start ed to think it might be time for me to leave because I spent the majority of my time not comforting others, but listening and watching Bobbie gently tell team member after team member about the deaths. I am not a full fled ged
63 member of this family, hardly a distant relative and I am beginni ng to feel more and more out of place. I decide to step out and call my friend, Mary, who lives in the area f or a ride to my car. I regret making the call a lmost immediately when Mary begi n s questioning me about the identities of the people involve d in the I try to feign any ethical obligation as a researcher to avoid breaching any issues of c onfidentiality. She begs me to tell her, or confirm ra ther, what she already suspects that her friends, Lisa and Sharon a re dead. I relent and confirm her fears. fear in her voice. I tell her I th ink two of the chil dren are survived. My uncertainty stems from speculation that the toddler witnessed the shooting I reluctantly give Mary a few more details and tell her the little combined with the sounds of gunfire prompted a neighbor to call the police. I can hear hear Mary relaying the ne ws to her daughter who also knows the victims. What have I done? I thought. I tell Mary I will find someone else to come pick me up, but she insists. I try to reas on with her arguing that she is clearly in no condition to drive but between sobs, she continues to insist. I really do not want to bring another grieving person into th is situation, but Mary persists and I give in Whi to walk down to the research institute to speak with my primary hospice contact, Joe, the d irector of research. He searches the we b
64 fo r additional details while I tell him what I know. Joe offers to give me a ride to my car in his new convertible, but I tell him that my friend, who lives in the area and coincidently knows all of the victims insists she will pick me up. I tell him about my reservations over h aving Mary come get me. I am looking for reassurance about my actions. Joe notes the serendipitous nature of the events an d concludes without reservation and to my relief, that my call to Mary was destiny. I feel better about having who is wearing what looks like pajamas. Her eyes are going in I do not know what to say and before I can re spond Allison says, Allison had a point, but I did not want this trauma to become the focal point for my research. I also had numerous concerns about how I would incorporate such an event into a project abo ut a much different type of death one protracted while the other abrupt both garnering sadness, but for dissimilar reasons. The story of Lisa and Sharon holds a place in the larger narrative of this project because their deaths became the basis of conv ersations between hospice team members and patients during visits. This vio lence also prompted talk among team members about loss, grief and domestic violence topics frequently met with silence Whether I liked it or not, the event bonded me to the team. I shared in some formal and informal healing rituals as seemed appropriate and necessary. A week after the murders, for example, I participated in a Team Support focusing on the deaths, which consisted of a roundtable moderated by a counselor. After the r oundtable, I talked for two hours with Bobbie, the Senior Staff Nurse who broke the
65 news about the murders to team members as they arrived We talked about domestic violence, death caused by violence, spirituality, and forgiveness. I specifically talked wi th Bobbie because I thought she could use some support after carrying the additional burden of repeatedly telling her co workers about this tragedy. On the day of the murders, I also took part in an impromptu chanting session with Carrie and two of the tea the parking lot shortly after Mary arrived to pick me up. Although I felt some relief about having my friend come get me, I was conc erned about having Mary join us because t he es as they were Mar N o t to mention calm nature especially when compared to Mary who had mascara running down her face and foundation smeared by her tears She was practically keening, doubli ng over with grief. When she arrived, she again a sked me about the c hildren and w hen I repeated their fate she cried harder, questioning the reason for such evil acts, especially those committed against children 4 Despite my concerns, the nurses encouraged Mary to join us and offered her comfort. Together w e chanted to rel ease the souls of those murdered just as Carrie had for her unforgettable patient. Bobbie offered word s of peace for the man who perpetrated the crimes and then took his own life. At the hugged each other and the n Mary and I left to get my car kissed and hugged Mary good bye and then drove home. During the 45 minute drive I called my 4 Mary reviewed this story for her approval and commented that she did not recall me telling her on the phone that the children had died. She recalls learning of thei r deaths after arriving to pick me up.
66 coincidence of my placement on this team. I also called my friend Nick because it was his birthday, but I did not say anything about the murders because his birthday falls on the day after the an linked, even loosely, to the date of their birth. When I got home, I told my husband who saw some of the coverage on the local news about the particulars. That evening I learned that Sharon and I completed orientation training toget her. Now, the sorrow of the murders hit closer to home because of the bond I had developed with my fellow orienters. loved her daug hter and the joy of singing in a n a cappella group. The chanting ritual only provided temporarily relief because from that night forward the news would print and broadcast the details of the events leading to the bloodshed forcing each of us to edit and a mend the narrative we constructed in an effort to make sense of the senseless. The murders happened on a Friday and I spent the weekend wondering what to do about my field observations. I agonized over whether or not to k eep my appointments or cancel my ob servations for the week following the murder suicide. I was concerned that team members would perceive my interest in continuing my nascent data collection as self serving and insensitive. Alternately, I did not want to assume these events put my observati ons on hold. I worried about coming across as presumptive because after all these people were death professionals. I considered myself a death professional too, so rather than assuming anything about the statu s of my research with the team, I forced myself to push through the feelings of uncertainty about violating any implicit or non existent etiquette and ask for guidance directly from the team
67 I e mailed the team leader, Dani ( the person I thought most traumatized by the deaths ) and inquired about the status of team meetings. In my message, I al so offered to help in the o ffi ce by answering phones, but she did not take me up on the offer. Dani did tell me the meetings would go on as planned. I then contacted Allison to discuss the observations we had sch eduled for later in the week During our call she told me she planned to work as usual, but when the day approache d, Allison canceled. It would take two weeks befo re I was back in the field observing patients. Returning to the Field Allison and I returned to the field together and our first visit was to see Sonny. P ull ing up to a small house with a single car garage Allison tells me that Judy is already here. The counselor/nurse team is making co visits with this patient because Judy suspected some sexual impropriety, after Sonny made borderline lewd comments Allison explained that Sonny found this hilarious and harmless, but Judy did not. With this information in hand, I prepared myself fo r the possibility of similar commentary from Sonny upon our first meeting. I follow Allison as we walk leading directly to the converted s ingle car garage where Sonny lives Sonny moved into the garage of his after his Chronic Obstructive Pulmonary Disease (also known as emphysema) became terminal. I always feel awkward visiting someone home when I am not necessarily a n invited guest. Sonny knows I am coming today, but I am not sure I a m genuinely welcome.
68 A llison knocks on the door and we hear a voice inviting us to come in. The door opens into the laundry room where an oxygen concentrator is running and a shower chair hangs on the wall. To the right is the doorway to the kitchen in the main part of the hous e I notice t here are no windows in the room, not even in the garage door, but there is a bed, desk with a computer, television chest of drawers, and nightstand. Sonny sits in a black office ch air directly acros s from his 25 inch television tuned to CNN morning news. Sonny wears a navy blue flannel shirt over a navy sweatshirt. He also has on navy blue sweat pants, white athletic socks white and worn close to his head, although he combs the top over in an attempt to co ver his balding. His round cheeks accentuate the close proximity of his blue eyes. The visit. Nasal canula tubing sits lip and over his ears. I note that he does not look particularly sick as much as he looks old, like a grandpa. Allison introduces me to Sonny by briefly explaining that I am a student doing research with hospice. We shake hands and I look around for a pl ace to sit. The room is sized bed next to Judy, but I wonder violates a norm about personal space. I point towards the bed and ask Sonny if it is okay to sit the
6 9 make a fuss. I take a seat next to Judy and try to avoid rumpling the bedspread. The counselor wheels the chair over from the computer desk and takes a seat. The space is small for the four of us and I worry that my prese nce is even more of an intrusion than I first thought. Judy sits with her laptop computer open and her blood pressure cuff next to her. Allison opens her laptop soon after we arrive. The organization requires team members to complete their charting at the bedside, but the device creates a physical barrier between patient and hospice team member. Furthermore, the computer holds questions that dictate the course of conversation and draw additional eye contact away from patients and their families glancing away from the television. cueing Allison to make note in her referrin g t o the small oscillating fan set to blow directly on her as needed help her with those hot flashes, flashes for sexua l attraction to let me in on the joke I suspect Allison is repeating these backstage facts in the frontstage (Goffman, 1959) for the benefit of the patient to create the illusion that we do not talk about them outside of their presence. t surprised that Allison mentions the blunder now.
70 do I know about e poses, pleading ignorance. Al lison wat ches closely, attuned to nonverbal reactions from the time we walk in the door. Her level of attentiveness draws Allison fo words and I am worried that he will catch he r looking at him, but his focus remains on the te levision headline news Sonny reaches for the remote and changes the channel to a local station that I never watch. The local paper ight. Next to the TV tray is a plastic chest of drawers. Atop the drawers sits a small plastic cup perspiring condensation onto a neatly quarter folded paper towel Among the items on the chest of drawers is A n container, an inhaler and a box of Kleenex. P rescription bottles pressure, listens to his lung sounds, counts his respirations and pulse and records them in the electronic chart while verbalizing the information to Allison. Judy then asks Sonny if he needs any prescriptions and Sonny passes the six amber colored bottles to Judy who harmacy requesting refills. The medications will arrive b y volunteer courier within 24 hours. series of standardized questions intended to gauge his level of suffering and quality of life. Not only do they want to know if he has pain and at what l evel, they ask Sonny if he is suffering, and the le vel on a scale of one to ten. They also ask, is most important to you today? In response to the last question, Sonny tells us he would like to take his
71 scooter out to get a steak sandwich from a lit tle shop not far from the house. I look to my against the wall closest to the door we entered just 15 minutes ago. bout that, but I can usually go the back way, through an alley and avoid trying to settle Allison ng and hear about you on Coastal 9 News s program they both enjoy watching. Sonny reaches for the ne ws paper and Allison asks if she can see the section with the horoscopes so she can read hers. A llison and Sonn y are both Cancer s. I take this as a good sign since I have many Cancers in my life and we get along beautifully. All ison reads their horosco pe first which says that today is going to be a happy day and as if it is prophecy, she declares the day a happy one. She asks Judy for her sign which is Aries communication at work, today. Be sure to be nice t o your co workers, especially Allison fabricated the content astrological chart, yet she continues to try to play it cool. he asks me. I hesitate t o answer because I do not want to reveal that my birthday is l ess than a month away. I also do not want any of
72 L is an p at me and And I have to do a research project to get my degree. Should I talk about it looking to Allison and Judy for approval to interrupt their visi t. They agree and I explain the project to Sonny in very basic terms recognizing that graduate school and its hurdl es are foreign to almost anyone without first hand experience As I explain the purpose of the study, I debate using the D words or their eu phemistic substitute end of life I decide to use both death and dying and follow with their softer understudy. spice team members interested in how people communicate at the end of and I realize I am sweating. Not only am I worried about Son realize that Judy and Allison might find fault in my approach. I continue covering the rest of the form, going over the mundane details of how I will collect data and protect
73 joke to counteract the bore factor. When I finish what feels like a stammering mess, draw more scru tiny or more emotion. just di sinterested in a non judgmental way M y research after all is of little consequence to his life. ors me by chuckling. as Judy walks over to give him a hug. Once Judy leave s, Sonny asks Allison about the murder suicide. d about it in the news. Did you know those going to respond because I know how upset she i s still about Sh aron s deaths. To ad d insult to injury, Allison felt to the crisi s was poor and did little to support the teams closest to the victims.
74 worked i the other because of my work with the other woman and that he just went crazy, Sonny offers. I know Allison would like to say more given her background in domestic violence and trauma, but she refrains. We allow for some silence as we process the proxim ity of this domestic violence to our lives. I am impressed with the way that Sonny and Allison han dle the conversation Sonny delicately and Allison honestly. Throughout the day all of the pat ients would ask about the deaths and the counselor and I would do our own additional debrief at lunch. packing her laptop into her blue and green Vera Bradley bag. I cannot believe an hour has passed already. She asks. Sonny nods.
75 Sonny nods and we each g ive him a hug. I tell Sonny it was nice meeting him and I look forward to seeing him next week. We walk back through the laundry room, and out the door to the side yard. ching the gate In the car Allison tells me that Sonny is usually more emotional and I suggest that maybe he kept his emotions in check because of me, a new person, a researcher Sonny would not shed a tear during our subsequent visits Maybe the lack of emotional response comes from the topics we pointing to a Korean War Veterans baseball cap. replies What branch? The Army. When I first got in I was in the infantry, but then I bec a e laugh too. sks wantin g to know if Sonny served in Korea. other we use d to call them Gooks back then the pause. I nod in acknowledgement.
76 mountain and we walked down the mountain and met in the middle. And you know what I remember? Their er? The whole w ask . I still think about wanting to learn about hist ory directly fr om someone who lived it. uniform with my duffle bag and no one even seemed to notice. I mean we just got back get to come back. It was stran ge as if no one knew we were between and the return of Korean War soldiers and sailors and those who served during World War II. k then we supported our boys when they got back. There were parades and stuff. But Following a tour in Korea and receiving an honorable discharge fr om the Army, Sonny opened a din er, called Sonny loved to shoot pool; he also loved gambling and playing cards so much that he had a pool table in his diner and turned the small restaurant into a card room after regular business hours. He partially attributed the
77 demise of one of his two marriages to ru mors about infidelity when in fact he was just out play ing cards with the boys. The diner closed after a run in with The Mob over a juke box to encourage a juicier sto ry about the Mob, but could not draw one out. The only thing Sonny loved more than horses and cards were his seven children: five kids. I used to come home from work and mak e dinner for the kids and then do it the next day we first met. few men had primary custody of their children in the 60s and 70s. When Sonny menti oned raising his children again at our visit the following week, I decide to broach the top ic gently with Allison as we dri ve towards our next visit near the inter on I worry she might interpret my inq uiry differently than I intend. I hope she will take my suggestion as a topic to probe further rather than an affront to her professional expertise. W his family a couple of times now and I just wonder if treading lightly with a tone that I hope conveys conjecture rather than certainty, although I feel confident about my interpretation. replies. T
78 now, my co visits with t he counselor and the nurse dwindle to overlapping visits. The nurse arrive s at n i ne and then Allison and I arrive about 30 minutes later. At first I thought this was purely for convenience, but as Allison observed, Sonny felt more comfortable talking about a wide range of topics, from politics to rel ationships, with Allison and me whe longer sat on the edge of his bed because Sonny would take his gray shower chair from the wall outside his room and place a folded faded burgundy towel down for me to sit on. My Time My Way No make chitchat while Judy finishes her Today, t he two team members talk about t he previous the organization s new policy about text messages the new preferred mode o f communication on teams. Nurses for example, must now submit prescription refills by text message instead of voicemail and a numerical coding system replaces descriptive messages. A text message with the number one, for instance, is urgent and a five mea ns no response is necessary. I think the procedures will constrain communication in a myriad of ways, even fire departments who once used 10 Codes have returned to plain language, but I keep my opinions t o myself because I notice Sonny looks uncomfortable. hen will someone listen to me? atte mpts to combine anger with jest, but I suspect he is more upset than he is letting on. with some sarcasm.
79 content that the focus is on him again. There is no clear explanation for Judy and going personality makes it easy to forget that he is dying and thus his time is precious. Sonny uses oxygen regularly to increase his comfort, b ut I notice these days that he rarely wears his nasal canula when we visit. Upon our arrival, he takes the tubing off and hangs it on the a because I suspect he does this to demonstrate his prowess when Allison and I visit. I make a mental note to bring this up to Allison later. Judy completes her visit and now we can talk about more interesting things than the topics broadcast on ime and dives your family and raising your children ell, you always worry about your kids Sonny goe s on to talk about each of his children. Most of them have done well for themselves with their own families and careers, but two of his children have problems, one with money and the other with substance abuse. Although Sonny does not sound extremely conce rned about how his children will fare after he dies, h e spends many visits talking about them and the era my l Sonny talk about his children and this important time in his life makes me think that he is mor e proud than worried abou t his children. I also suspect that talking about them is an
80 divulged that her father could be critical and harsh, doing such things as comme nting on to me that Sonny wanted recognition, but also needed Allison and me to help him reframe his parenting as good. Attending a Funeral and Talking about Death Two weeks ago we talked with Sonny about his family and the week before that his military service. I realize that I am beginning to look forward to my visits and as I get ready on Thursday mornings, I catch myself making choices about how I am going to wear my hair and what I am going wear with Sonny in mind. I know if he does not like something, he will not hold back his assessment because he has already commented that he prefers my hair when I wear it pulled back. For his part, I have noticed that Sonny seems to have a plan for the conversational topics he would like to discuss. Today, however, our attire diverts from any pre planned subject matter Sonny might have in min d. Sonny says, after we walk in the door and take our seats. I freeze like a deer in the headlights (or at least I think I appear frozen) an n watching her work and not the other way around. a bit caught off guard by her bluntness and her wisecracking tone I suspect my reaction anc e on politeness when
81 communicating with people who are terminally ill. I understand that for some, question invites an opportunity to tell a white lie or at least a lie by omission under the guise of protecting him. But then again, maybe I am r eally thinking of protecting myself from awkward feelings. I am shocked that I might actually be trying to guard against my own feelings of discomfort and nearly succumbing to wrongheaded beliefs about freely talking about death or death related subjects a round a dying person. To tell Sonny a lie holds multiple and compounding consequences since one of the premises of hospice include s openly discussing topics such as funerals. The truth for me is this; today, I will attend m y first hospice related funeral and I am dressed for the occasion (from head to toe in black). Attending funerals and memorial organizational obligations or expectations. Instead, the organization en courages team members to participate if they choose or feel the need. In many cultures, attending a funeral shows respect for the deceased and supports the family, and can help bring about feeling s of closure. Allison developed a close relationship with th e person whose funeral we will attend later today. In fact, Allison described Betty as a person who reminded her of ow n grandmother and, therefore, it makes sense for Allison to feel a special oblig ation to appear at the service. I, on the other hand, met Betty, a woman in her 80s, only once 5 What I should say is that I did not actually meet Betty in any traditional sense, but I was in her presence in the hospital about a week before she died. Betty was unconscious and surrounded by her family when we sha r ed the mutual space of her hospital room. 5
82 today I feel as though there are rules all of them arbitrary for how long you should know someone before you attend her funeral. Yet, I also recogniz e that such implicit and frequently unquestioned norms motivate my research. I d id not know Betty or her family at all, and opportunity to develop a relationship I me t Betty and a few of her family members during an extremely emotional and confusing time further complicated by denial refused to accept in part because she kept secret the details about the severity of he r cancer. 6 progressed prompting her family to hospitalize her. While there, the oncologist sedated her for comfort, which decreased her level of consciousness. Her children were naturally distraught about her condition, especiall y her lack of alertness, and demanded the reversal of those medica tions. Seasoned hospice staff members told me that the medication reversal process is similar to someone abruptly waking you from a deep sleep and leads to terminal restlessness (also someti mes called terminal agitation). Terminal restlessness, which usually occurs in the last 48 hours of life, can include such symptoms as thrashing, agitation, anxiety or muscle twitching which are difficult to control without sedation (Head & Faul, 2005). Be were more traumatic than the effects of sedation and again changed her treatment plan to include sedation. 6 I learned at her funeral that Betty had cancer throughout her body, which she did not tell her family. This lack of know the family to insist that she not receive sedation.
83 I also do not know what to expect at thi s funeral and I do not like feeling s of unce rtainty. I worry that I will express emotions for a person I did not even know, and I wonder if casket will be open All of the funerals I have attended involved cremated remains I have never seen a dead body up close despite working as a Certifie d Nursing Assistant and taking a tour of a funeral home for a course on the psychology of 7 It does not help that most of the n arratives I have heard about bodies prepared for open casket viewing were negative . replies I canno t tell how this new knowledge plays with Sonny, though his response s uggests neutrality. He make s little eye contact, keeping his attention mostly on the television. I wonder if the thought of us talking about attending his funeral makes him feel sad or ha ppy. I recognize the dichotomous nature of my internal inquiry and realize that no one feels either happy or sad when contemplating her or his funeral, but a mixture of both. The tenor of the conversation makes me feel more relaxed. I appreciate and am imp r essed by the way Allison handles too he avy or morose and Allison uses this discuss to focus the talk back on Sonny pr evious discussions about his preference for a sleeker look over my wilder (and more ethnic) curly coif. Sonny gives a strained chuckle and is forced to catch his breath from 7 I only saw one dead person over the course of one year of observations with the hospice and that was at Betty
84 the laughter we share. I wonder, almos t immediately after I speak if I should ha ve kept with a more serious tone r ather than injecting some humor, but I think the moment of brevity fit relationally, but also worked to resist the notion that talk about death must always remain somber. Politeness and Talking about Death This very brief exchange between Sonny, Allison, and me illustrates how a conversation about death can emerge In addition, query and my reflexive cringe at the rejoinder illustrate how a tendency to err on the side of perceived polit eness holds the po tential to squelch communication about dying, death, and mourning. Reflecting back on our exchange I wonder how I might have responded if place and responsible for the direction and tone of the conversation I suspect I would have attempted to evade the conversation. I understand that the rules of politeness dictate that we engage in communication that makes the hearer feel good and does not impose on the listener (Fraser, 1990, p. 224) ( Fraser 1990, p. 224). The conve ntions of politeness however, involve more than the Leech (as cited in Fraser, 1990) articulates six interpersonal maxims of politeness all of which put the interests of the listener before tho se of the speaker. Th ese principles but telling a white lie to Sonny could do more than evoke strong emotions; they could also damage our relationship However, I also realize that t alking about funerals with a person whose awareness of their own dying is acute carries a different weight than talking hypothetically funeral
85 According to Fraser (1990) p oliteness dictates that the speaker should minimize listeners costs while maxi mizing their benefits (tact maxim), avoid putting listener s in position s where they have to break the tact m axim (meta maxim), maximize listener s benefits (generosity maxim), and maximize sympathy between the speaker and the message receiver s (sympathy ma xim). communicates that talk about death is not taboo. Under the guise of po liteness, speakers sometimes communicate in vague or in direct ways or evade certain death related subjects all together. Thus forcing h ospice staff to find the right balance between the goal s of politeness approach to care, and maintaining t he honesty necessary for establishing, and in some cases developing, trust. An example will help illustrate this point. During one particularly memorable visit to the home of a newly admitted hospice patient, I watched the nurse and counselor work to rema in polite yet honest while anticipatory loss and simultaneous attempts at denial eldest daughter asked the counselor in a w ? Is it okay The cou nselor responded quietly by saying I thought this answer was honest yet vague. Rather than directly he counselor offered a strategically ambiguous (Eisenberg, 2007) response that allowed the daughter to decide the most appropriate way
86 hospice staff is necessary for the patie counselor must offer a message prohibitive of such denial. ply serves another function not necessarily possible with more direct or explicit guidance about how to proceed. The implicit her dying. I am not ready to face her imminent death 8 H ence if the counselor told the ell your mother she is going to get lihood of violating the daughter and damaging face (Fraser, 1990) R esearch suggests that people want honest information about their health and the health of th eir loved ones yet health care practioners frequently grapple with the tensions that exist when offering an honest assessme nt that protects face, maintaining politeness, and preventing emotional pain. The concept of hope, attempting to maintain hope when no hope for recovery remains (see, Roscoe, 1998), creates communication challenges for hospice team members. Some consider it impolite to take away this context it is unrealistic to perpetuate hope for recovery and so hospice team members must focus their communication goals elsewhere. This does not mean, however, that hospice should perpetuate the alternative, but instead focus their communication on the quality of care and processing emotions. I contend that for health care provi ders to navigate these tensions they must avoid sanctioning illusions about recovery. In fact, I suspect that early in a hospice admission, 8
87 patients and families make comments about getting better in an effort to have someone confirm what they already susp ect so they can let go and enter into anticipatory grieving (Ragan, et al., 2008; see also, Glaser and Strauss, 19 65). Hospice team members can take questions about the possibilities for recovery as opportunities to communicate about spirituality, dying an d death. In addition, communication about these emotional laden topics should focus less on preventing appropriate emotional reactions (such as anger or sadness) and attend to delivering difficult information in a way that is truthful and compassionate whi le leaving an opening for further communication about the topic. Patients as Conversational Guides Communication in hospice, however, tends to avoid talk about dying, spirituality and a good death by allowing the patient to dictate topics of conversation. In interviews with team members, they frequently describe scenarios where they allow patients to approach is synonymous with the patient elicits and research in thanatology is correct and death and related topics are taboo, failing to guide a patient through the dying process by failing to broach the subject is problematic. The conversation among Allison, Sonny, and me demonstrates that honesty and di rectness relate to politeness. In fact, the conversation indicates caring, honesty, and the maintenance and promotion of positive face while remaining polite. Telling Sonny that we will attend his funeral shows respect and liking while demonstrating our commitment
88 to him. Moreover, the conversation with Sonny helps mainta in rapport and trust, both of from that of a newly admitted hospice patien t because early in an admission team members actively work to establish rapport and build trust if the circumstances allow. However, a s one team member told me there is n ot always time to build rapport. I think t hat if I walk into a crisis they're in a crisis [mode]. They're, a lot of times, or most times, when they are receptive to anything and t hat's when you can start hitting them real hard [with talk about dying and death] or what I call hard hitting, on things and bringing o ut the Gone from My Site book (this small publication describes the physical signs of dying) Things like that. You almo st, you t getting to know the patient and family and allowing them to guide topics of discussion and approaches to care. Team members respond in ways th at mirror these expectations, but simultaneously avoid offering false hope. In the example of the newly admitted patient and her daughter mentioned above, the daughter resisted the presence of the counselor. The daughter repeatedly stated that she did not need a counselor because she The daughter should experience particular emotions requiring t he help of a professional. The The daugh ation set the stage for members of the
89 hospice team to communicate less candidly in order to maintain the contract of politeness and face saving. The night nurse, we learned during the visit, failed at mirroring the not to return. Politeness in this example is contextual and with Sonny relational. The context requires team members to avoid communicating in a way that patients and families might perceive as offensive while relational politeness obligates communicators to continue to build rapport while maintaining bonds of trust. The need for polite ness in both examples establishes a foundation for future As death related topics arise or the dy ing process brings up emotions and new physical changes, taking steps to normalize such talk e arly is crucial. Talking about advance d irectives, living w ills, and funeral plans upon admission can serve a similar purpose. Some patients and families, however resist havi ng these conversations because emotionally or physically, believing that death is not close enough to justify such discussions. nother funeral helped set the stage for talking with Sonny and his daughter about what type of serv ices Sonny wanted when it became clear that death was near. An Eternal Legacy The time we spend with Sonny listening to his stories combined with his love for his family prompts Allison to suggest that he make an Eternal Legacy video for them. The content of the video is at the discretion of the patient, but Coastal Hospice provides prompts to aid the process. High school and Community College students come to the
90 house, r scanned photographs. Sonny agrees to do the video. Place and how the women at Stouffers time working for Stouffers when it was a restaurant and not just entrees that you buy in the freezer section of the grocery store. find the paper bag glove less humorous than Sonny, but we indulge his amusement at the memory and encourage him to include that story too. Sonny sounds enthusiastic about making the video and over the next few weeks, he elicits the help of his granddaughter to develop a scr ipt. The day arrives for Sonny to make the video and The Eternal Legacy coordinator arrives unexpectedly with two students instead of one and Allison and I are car garage apartment. We man age to make room for all of us and begin. The coordinator gives Sonny some instructions about what is going to happen during the recording, and reminds him they can stop anytime he needs to take a break. They wire Sonny for sound and the Eternal Legacy rec ording session begins. Allison and
91 long after pressing the little red button on the recorder, Sonny stuns us. The narrative begins as we expected with the story about th e paper bag glove, which Sonny again finds hysterically funny. The Eternal Legacy coordinator tries to work from the script by asking questions about the topics he put on paper, but to no avail. talking openly and negatively about his ex wife and her selfish parenting style, and then he begins lamenting the flaws of some of his children. At first, Allison and I look at each other appalled, but as the stories continue, our shock turns to resignatio n. The goal for creating the Eternal Legacy video family with a reminder of their missteps. We held out hope that the students and their program coordinator could salvage the vide o with a few strategic edits, but I feared there would not be enough positive, funny or interesting stories to make a video that he could labored breathing. The coordinator no ticed too and tried to encourage him to wear the oxygen. She informed him at the start of the session that such equipment was hardly visible on tape, but Sonny refused and continued without the O 2 After an hour, signs of g worsened during the course of the taping, forcing him to pause between sentences and his eyes were sagging and watery. By the end of the tapping session, I thought Sonny desperately needed a nap. The coordinator must have noticed his waning energy too an
92 e that he will say that he loves them The Eternal Legacy video came out well and was much more positive than I Eternal Legacy creators some photos of him with his chi ldren to scan and include in the DVD. They ended the video with one of our personal favorites, a picture we called Dapper Dad that showed Sonny from his younger, more robust days dressed in a black turtleneck and a black blazer. The integration of the imag es helped fill out the video and The video session was a su decline. Sonny first began removing his nasal canula during our visits months earlier and the act upset me then. I suspected that he compromised his own comfort for us girls I told Allison at the t ime that it upset me, but she told me to let it go because it was what he wanted. I never said anything to Sonny and I tried to not notice, but it still pained me even though I knew that taking off the tubing was one way he could maintain some control whil e attempting to minimize the severity of his illness and his decline. What I really wanted was for Sonny to feel comfortable enough to allow this one image of his vulnerability, but I understood this step would require a level of intimacy we had not yet re ached. Taking off the nasal canula during the hour long visits, however, became
93 prompting him to do things like make derogatory comments about people, usually women, on t delirium. There were times when Sonny had difficulty recalling conversational topics and staying on track and I attributed those moments to decreased oxygen in his blood, bu t more than anything, like the e ffects of alcohol, the lack of oxygen freed Sonny to speak hi s mind. He could wonder aloud about the meaning of particular events in his life. Listening to Sonny I was left with the impression that he did not have unfinished business with his second ex wife as his Eternal Legacy session hinted because he never expr essed any interest in confronting her. He accepted that marriage did not suit him, but he did ask, rhetorically, if he was ever destined to know true love. His failed marriages then were reminders of a lost opportunity at true love rather than occasions to wrap up unfinished business with his former spouses. I think Sonny felt good about the time he spent with his children, but I also think he frequently contemplated whether he had done enough for them. Furthermore, bad mouthing the mother of his children a nd questioning why he had to make so much effort raising them when she made none was one way to draw clear distinctions between his efforts at parenting and her apparent lack of concern. Sonny had grievances as well as questions, but speaking them aloud un burdened him even if he would never fully understand why and gave him the opportunity to restory his life.
94 Sonny offered to show us the CD, forcing Allison and me to confess that we watched it before turning it over to him. Watching the video was a preemp tive move on our part to prevent any unwanted public display of emotions. I did not want to cry in front of Sonny, nor did Allison. From this moment on, I began watching Sonny very closely for signs of his decline. My fieldnotes from March always begin wit h a description of may sound ridiculous, since I knew from the moment we met that Sonny would die, but now we were friends, I was his big girlfriend (I learned this from on e of the male Home Health Aids) and his death would surely cause me pain. My sense of our friendship, sadly, still did not prevent Sonny from taking off his oxygen each time we arrived and it did not make watching him struggle to breathe through pursed lip s any easy either. Instead, he would puff on his inhaler to give him some relief during our visits. We continued talking about the race for the White House and other topics in the news, but Sonny participation in our conversations declined with his health. One day I noticed Sonny referencing a piece of paper when initiating stories about things he wanted to tell us. He was having a difficult time remembering things and took notes throughout the week in anticipation of our visits. He was also checking anothe r piece of paper he kept concealed under a towel. I could see what looked like hash marks on the small sheet of paper and I surmised that he was tracking his inhaler treatments, and checking the time to pace them to get the most from each dose. I learned t hat by u sing the inhaler too frequently the medication will eventually fail to offer relief. Sonny may have
95 thought taking off the nasal canula covered for his illness, but he was giving away his decline in other ways. Searching for Clues I have been visi ting Sonny for almost four months now and before each visit I wonder what Sonny might want to discuss. In the past we have talked about everything from the Democratic candidates for President, to wars (past and present), women, lost love, and horseracing. Now I focus less on what we might talk about and move on to searching for clues that might tell me how many more Thursday mornings we will share. I realize that I have no idea what to expect because I have never experienced a death caused by emphysema. I d o not know what the signs are and I am beginning to wonder death. Allison and I walk through the gate and into his small studio garage. Sonny smiles when we arrive, but today he is not beaming the way that I have come to expect. His blue packing up her blood pressure cuff. he points to the nasal canula he took off a few minutes after Allison and I arrive. Sonny exhales slowly through his pursed lips. His difficulty breathing is getting worse, I think to myself. I am simultaneously sad and taken aback reaction is to think he i s talking about us, the members of his hospice team, but then I realize that i
96 forward in her chair, tells me we share the same t his concerns with us. leads to the main p art of the house reminding us of the walk he must take to get to the a potty? Do you us device. in his voice. g disgusted by the thought. sounds irritated by the suggestions.
97 beginning to make me feel uncomfortable. Sonny does not want solutions to his Sonny. The subject shifts to something more light hearted and Judy ta kes the opportunity to leave for her next patient, which means Allison will have a chance to check on being. I a about his long oxygen tubing. more eagerly awaiting his response. inspirat as I realize Sonny is coming to terms with th e progression of his disease, his growing dependence on oxygen t o mainta in his quality of life, and the approaching end of his life. sense of this experience.
98 More than a Threshold, a Vestibule I walk into the conference room where IDT is th is week and look for a seat that will not get me into too much trouble. Allison and I have been spending so much time together that we have our inside jokes and she lik es to write me notes during meeting s and although they are usually work related, I have the feeling she is under scrutiny during IDT and the last thing she needs is for my presence to draw attention to her. I decide to sit next to Grace, one of the Home Health Aids. Grace is a tall, full sized, platinum blonde whose Italian neighborhood still reverberates in her voice. During one of our first visits gentl e and agile. The latter every time I see Gra ce, I think back to a different patient, Mr. Franklin, who started a family owned jewelry business with his wife. * * Arriving at the door of ranch style cinder block constructed house on a corner lot we find the woman of the home lo oking agitated and maybe a little distraught. Grace notices distress right away. he says with her strong Jersey accent. Grace does not bother with the standard introductions just yet. Mrs. Franklin sa ys. I could tell something was up Grace replies. threshold of the house Still standing in the doorway because Mrs. Franklin has yet to
99 invite us i strong, competent, and there to help, or just intimidating I am impressed with Grace swift and astute observation of the scene with such little information to work with. Th e only information Grace had and diagnosis. The administrative staff who give Grace her patient list have instructed her to give Mr. Franklin a shower today. Other times Grace does not know which Ac tivities of Daily Living (ADL) she will assist her patients with until she arrives at their homes. level of uncertainty about what we can expect when we arrive Mrs. Franklin and Grace takes advantage of a break in the story to move the visit forward Standing in the fo yer, I look around and feel confused by the layout of the home. indication of where to go. She begins to direct us to the kitchen and not the master bedroom where her husband lies dying. with Mr. Franklin where he is Grace says trying to guide Mrs. Franklin e all do an
100 Almost as soon as we reach the t hreshold for the room, Mrs. Franklin switches on the light. A small bulb set behind a squar e opaque white glass fixture in the ceiling comes on, yet the room remains dimly lit. W disturb Mr. Franklin, Grace says. into the room, I expect to see Mr. Franklin in a hospital bed, but instead he lies in a k ing sized bed which is far too large for his frail frame. His beard looks rough like salt and pepper colored bristles on a broom. I notice the bed is very low to the ground, too low for cargeivers who might need to change diapers and give bed baths safely I know this is a c oncern for Home Health Aids whose responsibilities are the most physical of all the team members. They spend the majority of their time standing, stooping and bending over patients. Sparsely furnished, the master bedroom houses a dark wood bureau and two nightstands flank the bed. With help from a rare overcast and drizzly day, the room is awash in gray and the scene is quiet and peaceful. As Grace maneuver s around to the side of the bed the patient faces, the wife offers to draw the curtains to let in some natural light, but as she reaches for the cord Grace I get the impression Mrs. Franklin noticed this change in her husband as well, but did not have the vocabulary to describe what she observed.
101 he wife offers ag ain almost disappoint ed she canno t offer some help Grace says he r accent more pronounced with words like necessary. Grace introduces herself to Mr. Franklin and asks if he w ould like a shave. She explains to Mrs. Franklin that sometimes men d o no t want a bath, but do prefer a shave. Mr. Franklin s responses are barely audible; he is grumbling and I can not make out what he i s saying. Grace translates for us claiming that he refused the bath, but agreed to the shave. Grace asks Mrs. Franklin if she has the supplies necessary for a shave and she replies by eagerly moving to the bathroom The bathroom is pink and tiny Grace picks up the washbasin, a wash clot h, a razor, and the hospice issued soap and turns on the water. I feel a bit helpless and I think Mrs. Franklin does too. Grace turns and looks at me over her right shoulder and tells Mrs. Franklin that she has everything she needs. I take this as a cue and offer to talk with Mrs. Franklin in the other room while Grace works I follow Mrs. Fra nklin to her kitchen table She offers me coffee, which I decline out of politeness and fear of being served instant coffee As she drinks her coffee, w e talk about her family. She and her husband are in the jewelry business and her sons w ork there now. I learn that Mr. and Mrs. Franklin have been ma rried almost twice as long as I ha ve been alive, that one of her sons died last year of a massive cor onary following a fishing trip and she has a beloved great granddaughter. Not surprisingly, she is distraught over the imminent death o f her long time partner. She tells me about the fond memories of their time together as we sit Her talk is part life review, but also a type of
102 anticipatory grief work. I can hear in her voice an attempt to project optimism about her future without her husband She shows me her jewelry, her custom made wedding ring is a source of great pride and then retrieves a thin string of delicate pearls she is repairing I listen and o nly ask questions when I need some clarification or if I think my question might bring about a happy memory or take us down a p ath lined with pride or y exacerbated by the thought of the pain Mrs. Franklin must feel as she conte mplates her s pending de ath. In just an hour, Mrs. Franklin reveal s some of the highlights from her life. We look at photos of her family and she talks about her children, their spouses, and her grandchildren as if I have known them for years. Inte rspersed a mong the photos of her family are a few pictures of Mrs. Franklin and her husband before he got sick. I realize that had I not identified her in the snapshots. I probably would not have recognized Mr. Franklin because the internal ravages of canc er are not yet visible. She shows me a photo, probably taken at Sears or Wal great After comes to the kit chen tab le to sit with us, she g ets an abbreviated version of Mrs. Franklin life story and skims through the photos I know that Grace has a tight schedule to keep, and so I do not interject any questions or prompts that might elicit any more stories. Grace explai ns that she will discuss with the nurse what she saw today Mrs. Franklin tel ls us that the nurse was there yesterday and all of her family visited last night. Grace encourages her to have the family
103 around as much as possible, but never explicitly tells M rs. Franklin that she thinks her husband is very close to death. To close out visit s Home Health Aids chart their care, but not electronica lly like the other team members. I nstead they use hardcopy triplicate forms, which Grace completes and asks Mrs. Fr Franklin to sign. We get up from the kitchen table and walk towards the front door. As we say goodbye I lean ov say. I feel bad about swooping in and leaving so quickly. The house suddenly seems bigger now than when we first arrived, which makes me think about how lonesome the dying experience is for caregivers too, especially when death nears. I imagine that in the past, Mr. and Mrs. Franklin could work in different parts of the house and not feel alone. The couple probably spent many hours of t heir marriage making and fixing jewelry together content even in silence, but now I wonder if those feelings of security exist for Mrs. Franklin anymore as her husband of 60 years transitions from this world to the next. Grace and I get into her car and I sit in silence as I wait for Grace to settle. She we sit in the driveway with the car running and the windshield wipers flapping. Grace tells the nurse about the cha in of events and then hang ups. The nurse, she tells me, will see the Franklin family later today and determine if Continuous Care (24 hours nursing
104 care) is necessary. As we drive away, I tell Grace how impressed I am with how she quickly assessed the sit uation and took action and in a matter of fact tone she tells me and elaborates on this idea during our subsequent interview. There is something very different, spiritually, in the air. Depending upon how sensitive you are, you can feel it. And, there is some truth to getting quiet, to darkening the lights, you know, bringing them down Taking away familiar things. Like familiar music. A song like, Amazing Grac e for example, is so familiar and I (she if they are things will ground a person. A person can become very restless. It must take a heck of a lot of physical power too, the dynamics of that family. But, um, usually, when they start seeing us coming in and saying to the our voices down and they start seeing us moving a little slower it almost sets a tone. Graces pauses to think and continues relating the dying process. there is like a vestibule and then after that vestibule there is a whatever to pass on to
105 because I have se en people pass into that vestibule and pull back. Go deeper into that vestibule and pull back. And then get into that vestibule and then you start to recognize, physically recognize, the heart slowing down, the breathing slowing down, the pulse going lower and then they step in and hopefully [there] can be a fluidity to it and not a ry to do. Does that make sense? I respond, und erstanding fully why she encouraged Mrs. Franklin to keep the lighting in the room muted. A week after we visited the Franklin residence, I read in the local paper that Mr. Franklin died peacefully at home the next day. Back to the Business of Hospice As Grace and I chat about her daughter who lives up north, I hear Allison calling voice reminiscent of kids teasing each ot enthusia she asks increasing the New Jersey in her accent. go to the Museum of Modern Art and stuff to do with your shadowing. Judy already knows, so maybe you can talk with her about wit h Allison, so I hope she will allow me to shadow her on Thursdays while Allison is
106 chaplain, is ready to begin the meeting and so I take a seat next to Grace and turn my attention to her inspirational reading. Today, Robin reads from a pastoral care publication a brief narrative about dying sure we have good thoughts before entering because they may perceive any negative thoughts or feelings we may have towards them. The Senior Staff N a tale of a person who had a near dea th experience caused by an auto accident who reported that she could hear all of the negative thoughts of the people who were stuck in traffic. Listening to Bobbie tell this story, I feel guilty thinking back the times when struck in traffic I have said to passengers (or myself), I silently vow to hold a positive thought and pray that no one is hurt the next time I am stuck in a traffic jam. We move from the mess age to the ashtray affirmation which reads, Once everyone makes their requests, Robin says a prayer for patients, families, and the I notice that Sonny is up for d iscussion because his hospice re certification period is approaching. As is standard procedure, the nurses and counselors share information about the New admits The nurses affirm the completion of the re certifications currently due and then begin discuss ing the upcoming re certifications. Sonny is fifth down on the
107 on O 2 at 2 [liters move on to the next patient on the list that I am relieved my name did not come up this time. I am sure I blushed when Allison announced to the team that Sonny was in my s medical status, although accurate, seem separate from the reality of his life. Judy left out that Sonny does not get to go the horse track or the sandwhich shop anymore. In fact, he does not leave his room to go outside now and a trip to the refrigerator no more than 15 feet from his chair is too taxing to do more than once a day. If Sonny wants fresh air, a look at the blue sky, or the tre es, his only option involves taking in the view from where he sits in his black office chair. Pre Imminent I am on m y way to the Sun flower team meeting when my phone rings. I look at caller I. D. tradition of surprise that used to come with taking a phone call.
108 Allison says. My eyes start to well up. nd was calling to say explains. to leave without saying g ood so I patient is imminent, the nursing staff suspects that the patient will die within 72 hours. Alternatively, pre imminent is not a technical term and staff are discouraged from using the phrase, but it suggests a marked transition between living with a terminal prognosis, and actively dying.
109 ed him and that you talked with Sonny and his daughter during our last visit about what type of service he wants. Well have fun on tears fall. I am feeling sorry for myself for the first time since beginning this research project six months ago. Last week, I felt sorry for Sonny and his eldest daughter when the y talked openly with a type of awareness I had never witnessed before. The poignancy of the moment encompassed a range of sol back tears then too, but I knew those feelings came out of empathy for Sonny and his daughter. Today, however, I feel sorry for myself as if this is first moment I fully com prehend that Sonny is going to die. I manage to pull myself together before IDT and I arrange with Judy to meet her that Judy, who is usually very prompt, is not her e yet. I decide to sit in my car listening to the news on National Public Radio to burn time as I wait for Judy. I feel a little anxious today because Allison is not here to act as my guide, but also because I have some I speculate, as Sonny gets closer to death, if he will begin to look like a drowning man without the water conscious and aware that the
110 van pull around the corner and my anxiety begins to subside. belly to move air in and out of his lungs. He smiles at us and says hello, but turns his attention back to breathing. He is really not okay, I think to myself, but what other words could he possibly evoke. I suppose he could report that he cannot breath and it sucks, but this is the course of terminal emphysema and there is little medical intervention available to alleviate his discomfort. What hospice can offer medically oxygen, inhalers, narcotics, and anti anxiety drugs only provide short term relief, if any at all. a complaint as I have ever heard from Sonny. pain on a scale from one to 10, with 10 b eing the to gauge
111 twin sized hospital bed. suggestion. to persuade Sonny. further. According to hospice staff, it is common for patients, especially men, to resist getting s. They equate hospital beds to being very sick. Once you get to that bed, you're to the bed. hysical well to get in the bed as a show of his strength. nto the room. Katie is a grade school teacher and is
112 home from work for Spring Break. She asks her dad if he needs anything, and when he declines, she asks Judy how he is doing. bed Sonny looks up at his daughter and just smiles. We keep the visit under an hour eathing makes it difficult for him to reciprocate. In a three person conversation, Judy and I did most of the talking. The extent of our discussion centered him to commu nicate nonverbally. We close our visit with our standard Hospice Hugs. I move in to embrace Sonny, and I can see him trying to lift himself out of his chair and I tell him he does not need to do that because I can bend over. I give him a hug around his sho those words aloud, I wonder if I have any reason to believe their veracity. I follow Judy to the local grocery store where I will leave my car while we visit her next pati ent. We stop into the store and get a few things for lunch. I follow Judy to have no idea what to expect with know the answer. I have conjured up such a terrible image of what might happen to
113 response. breathing will slow down and then eventually made salads, fruit bowls, and veggie trays. Judy searches through the salads for one she likes. I feign looking as well. I glance up from the refrigerator case and say, produce man. As they negotiate the type of salad Judy wants, so he can make one to her specifications, I continue searching through the case for a salad with the right combination of le death, especially since Judy is so matter of fact. I realize this is in her nature, she was a surgical nurse, and Allison has always said that nurses are very black and white, but for me So participants, he is my first long term study participant and one of the closet hospice e to reevaluate my feelings and I question if I am unnecessarily worried about how he will die On the other hand, I find having facts comforting and I can see how helpful information is for patients and families as well. A s a result, I am less worried abo ut Sonny suffering during his final moments.
114 Judy has the salad she wants and after a stop at the salad dressing aisle, we are ready to check out. Judy offers to pay for my salad, but I refuse by handing her a five e talk about the next patient whose name reminds me of a candy bar or snack cake. Sonny is still on my mind, but it is time for me to shift my thinking from him to the next patient and I want to get the update before we arrive since I have not seen this pa tient for many months. How to Say Goodbye the corner, I a fire engine and note that garage door is up. My heart begins to poun d forcefully in my chest. Inching closer to the house, I see the fire engine pull away and round the corner. I take a deep breath to calm pen and I decide to hang back to avoid drawing any attention to myself. I do not want Sonny or his daughter to see me for fear they will invite me in (I am not supposed to visits patients without a hospice representative). Judy pulls up a few minutes later coming to town this weekend at us. He waves to walk into the other room where my shower chair hangs I watch him as I walk by and
115 notice that his breathing is even worse than last time. I did not think it could get worse, yet is has and I am surprised that he is able to sit upright at all. He purses his lips together like a woman in labor, but the inten sity of ea ch breath is much different than the quick Lamaze breaths. I take a seat on my chair across from Sonny so I am easier for him to see are knees. He always wears sweat pants, but today, I can see that he has a towel across his lap. Sonny says. offering a little confession. haltingly. I look outside and take missed the explosion of greens that marks the transition from winter to spring. my grandmother, who used to live there, that New Jersey is becoming restless as the conversation between his daughter and nurse continues on the sidewalk. asks.
116 Sonny for a few moments longer. them? Katie stand. The two come back and K walks from the room to the look as a silent message that communicates an awareness that the request for water was nothing more than an attempt to get her to come ins ide. Judy begins with her standard assessment and medication check and ends the visit by asking Sonny if he needs anything else before we go. Sonny asks us to help him get on the scale so he can weigh himself. I think this is an odd request, but Judy and I try to help him on the scale. We each take an arm and as his pushes up with his legs, and we pull up briefs makes me a little uncomfortable, but not mortified becaus e I consider this as a byproduct of illness people become more dependent and less concerned about any
117 garage door is still open and any passerby could see him partially c lothed. Placing his feet on the scale for a few seconds, Sonny steps back down on the ground and returns to his desk chair. I do not catch a glimpse of the reading on the scale, but Sonny grumbles his disappointment with the number yet I am not sure why. He carefully smoothes the towel back down across his lap and focuses straight ahead omment about reaching hospice. What an i diot I am, I think Since talking s visit, I did not want to miss an opportunity to say a final goodbye. I also wanted to say something much more profound because I am acutely aware that Sonny is closer now to death than ever, except I could not conjure up a message that would not sound to o sappy or waving to Sonny as I walk out the garage door. Tears for my Hospice Guy My cell phone rings as I walk across campus back to my office following a meeting Monday afternoon. I can see Judy is calling. Judy told me on Thursd ay before earlier in the week than usual since he is declining, so I am not surprised to see her name appear on the screen. In the
118 split second it takes me to flip open my phone to receive her call I know she is not calling to confirm our visit time. Judy is going to tell me that Sonny died. come to my eyes. I slow down my pace to avoid stepping into the on coming traffic from the parking garage. I find it is odd that she would assume that I already knew, but I do not bother to question her about this I Oh, poor until the summer, closer to his birthday, when everyone is out of school to do a service. Also, Katie wanted to know who she should contact to send them a letter about you. She wanted to know if you had a supervi sor or something at the school she could co ntact to tell them how well you chance to see his family. Thanks for calling referring to the weekly IDT meeting. back to the office I have managed to turn off the water works, but I know that I could
119 burst into tears again at any moment. I walk down the hall towards my off ice and hope I do not run into anyone who will try to comfort me with platitudes. I see that my friend Tony who only comes to campus to teach now that he is working on his dissertation, has his office door open. He is talking with a new Ph.D. student, Emi ly. Uninvited, I come in and plop down in one of the em speak, I shake my head no. Emily stands up and closes the e asks, the tone of his voice changing from concern to symp athy. freely. deluge of tears lifts long enough for me to speak again. started to cry again. I sniff loudly trying to keep the snot that has suddenly formed from sliding out of n research interests.
120 on the roster and Judy will share the details with the team I am worried I will start crying again, but I do not learn anything more than what she told me on the phone earlier in the week. In the weeks that follow I suggest to some of the team members who knew Sonny that we should all go to the horse track and place a bet in his honor, and although people thought the ritual was a good idea, no one followed through on the suggestion. Four s cemetery. After the American flag and once the sounds of Taps no longer lingers in the air, we walk over to the s pot where rest. Famil y members place flowers on top of the red, whi te, and ashes. Allison, Judy and I stand back silen tly watching the scene. I look up from the small hole in the ground and visually absorb the ce metery grounds. The grass looks freshly mo wed, and although I can not see the blue sky becau se of a light drizzle, I notice that huge tre es with deep green leaves serve as the backdrop for ial plot. And just as I promise, I have my hair back in a ponytail, the way Sonny liked it.
121 C hapter 5 Life Review as Spiritual Care The re lationship I developed with Sonny over five months left an impression on me and I noticed that it framed how I felt about my interactions with new hospice patients. Upon meeting new admits, or during a first m eeting with an existing patient I looked for t he same qualities that Sonny had. So when I met Helen, I thought I might have found another hospice friend. Allison and I arrive late for our first visi t with Helen. Our being late, I a m sad to say is common Sometimes I am late; o ther times the delay re sts on Allison, other times we blame the Starbucks drive through, it depends. Patients eventually come to expect our tardiness, but I notice that most often the patients attribute our chronological challenges to Allison and never me. I am not sure why this is the case, but I suspect my student status mitigates any responsibility. New patients, however, do no t know what to ex pect and this is probably why I a m worried about being late today. I previously visited the Lexington, an adults only apartment comple x with the team chaplain and a Home Health Aid I thought then, and still think now, that living at the Lexington would not be too bad. The apartment complex for seniors is equipped with a pool, a community coffee room, a lib rary, and a mini market. I hav e no t visited the meeting) some one burglarized the little market on the first floor. The Home Health A id conclude d that homeless pe ople, not the residents, committed the act of theft. I never
122 ghborhood good or bad, but the Home Health A forces me to reconsid er my initial thinking and it occurs to me that the Lexington is an oasis from the drug dealers and gunfire a few blocks awa y. Pulling into the long driveway leading to the complex, I look to the right at another familiar apartment complex and my thoughts dr ift back to a patient I met once days before the start of the new year Mr. Johnson, who was in his 80s, was dying of canc er. I remember Mr. Johnson and his meek black lab mix The dog, I learned, was spending more and more time at the foot of his sick bed I also remember that during this visit the counselor discovered that the woman she thought was Mrs. Johnson was not the time companion. More interestingly, the woman used to be the These factors however, did not make Mr. Johnson m emorable; the stories he told ab out his work as a chauffeur made him unforgettable. He Miles Davis and Cicely Tyson who he described I tried to not let the words irk me, but a s a bi racial woman with a caf au lait compl exion, involuntarily maked my skin crawl from the insid e out. I hoped my visceral reaction remained invisible I tried to rationalize his use of the phrase as not only generational, b ut possibly a misreading of my mixed ethnic identity and thus somehow less offensive. Following the visit, Allison apologized I told her not to worry about it because I expected something like this would happen at some point during my observations, I jus t did not expect it so soon (I had only started my observations two weeks earlier .) We
123 agreed the use of the term colored was generational and not intended to offend me. Allison further surmised that Mr. Johnson needed to share those stories as part of his dying process. What surprised her was that in all of the time she worked with Mr. Johnson, he never mentioned any of his time as a chauffeur or his encounters with the rich and famous. The disclosures were mysterious and timely. During the visit, Mr. Johnson told us that he wanted to live to see his next birth day in mid January, but recognized he would have to settle for living long enough to his temple. He had worries abou t how his daughter might cope after his death, he wanted to make sure she would be okay, but otherwise Mr. Johnson described his affairs as being i n order. I wondered then and stil l question now, six months and many patients later, why Mr. Johnson told the stories of chauffeuring Florida Evans, the Prince of Darkness, and Miss Jane Pittman. I cannot help but think that my presence somehow motivated Mr. Johnson to share those stories, especially since his counselor never heard any of them. Throughout my fieldwork, I frequently contemplate d whethe r my role as a researcher evoked such disclosures and encouraged people to offer the most interesting prolific and influential people and I suspect this was part of his motive for sharing. He probably thought a young black woman (he did not know that I am also white) would find his experiences impressive, not to mention that the stories created a connecti on we might otherwise not have. I can only speculate, but whatever the motive, I did not
124 begrudge Mr. Johnson for sharing or even using archaic language; instead I felt honored to have learned about his experiences and his brushes with such historical figu res. At the team meeting the following week, I learned that Mr. Johnson died after hearing celebratory fireworks, just a few minutes after midnight on January 1st, four days after our meeting. I pull my thoughts away from Mr. Johnson and back to the new patient visit. Allison briefs me on t he patient we are about to see final sip of my grande iced coffee knowing it will taste terrible by th e time we return to the car. ( ) Reaching for the car door handle I see a woman with a tan that resembles orange nagahide dragg ing a small poodle like dog with mated white hair. F or a moment I think that I am in a scene from Ben Stiller film ook at that. I think she was walking that dog the last time I the commentary, b ut this woman is an amazing sight and Allison obliges my mockery. Alcoho lics Anonymous.
125 Ch anging the subject, Allison reaches into the backseat for her laptop and says 17. There should be a hospice wheelchair, a dog statu e, and some flowers out front. in an effort to commit our de stination to memory. We walk through the entry to the elevator. Every time I visit a n apartment complex like this I a m left wondering how all of these old folks would get out in the event of an emergency. A single slow moving elevator will surely impede ev acuation. Fake potted flowers with a gel substance meant to mimic water adorn a table in the center of the lobby; they a re for sale and I threaten to buy one for Allison. I notice the mini market is closed, but there are a few folks mingling in the coffee room. The door to the elevator opens and a woman with a three pronged walker steps out. She looks up and says closing the loop on our interaction. We a re lik e a regular Coastal Hospice greeting party. Allison and I get off the elevator and I repeat the apartment number. We assuredly walk down the hall, passed the library and a piano, but as we pass a major c orridor I begin to wonder if we a u did say 217, bird clock on the
126 on knocks and I am nervous, but not because it is a new visit. I am worried we a re at the wrong apartment none of the identifying markers sits out front, but the number matches Allison and I have joked about showing up at the wrong house like a couple o f Grim Reapers. Over the past eight months, we have never accidently arrived on the wrong doorstep. There i s n o answer and I suggest we leave. s ay anxiously. We start to walk back down the hall and Allison checks the facesheet one more dog statue when after double checking the information provided by hospice. Retracing our steps we finally find the correct apartment with all of the identifying markers in place. The dog statue holds a were behind before, but our little stroll around the 2 nd floor of the Lexington makes us even later whi ch means we will have to delay lunch maybe even cut it short so we can make our af ternoon appointment on time. I can feel my body is nearly finished metabolizing place this morning. Allison raps a little tune on the door and we wait. We hear the quick pattering of footsteps on the other side of the door and then silence. The doo r flies open and a thin woman wearing white bobby socks, a pair of white capris with an elastic drawstring waist and a striped jersey knit shirt greets us with a smile.
127 confinement. I am fond of Helen almost immediately Her petite size and hospitality (translate d : her insistence on feeding us) reminds me of my mother in includes all of the basic acco utrements necessary for living, but it is the second area. recognizing that the layout of the room and the limitations of her illness connote that Helen probably has a designated seat. ng reminds me of an out of shape person winded after walking up a small flight of steps. The strain is ind icative of her illness, but sh e i s not helping the situation by scurrying around her apartment. pointing to the recliner that sits opposite the television. Allison and I take a seat on the deep red sofa to the right of the recliner. I look around He Dove chocolates and peppermint candies on the coffee table in crystal dishes. A smiling doll sits in the corner on a little wooden rocking chair. Later when we take the tour of
128 Hele we see anothe r doll facing the wall as if he i s counting alligators for a game of hide n seek. eat? as my mother in law would do immediately after greeting you. cha got? feel hunger approaching, but it i s not really the time or place to eat and I assume reply is really rapport building banter. playing along. to communicate using mental telepathy. realizing that a complete refusal will only lead to continuous insistence that we consume something. Not taking anything will probably come across as impolite as well t stuff, but I embarrassed by her own tastes. voice that I cannot place. I do no t get the impression that she is from Florida but rather some plac e like Tennessee. I find out later that Helen is actually from the Midwest.
129 After buzzing around, Helen finally sits down half cross legged in her recliner. S he tells us that she really cannot eat much so she avoids go ing out to eat and when she cooks it is mostly for her family. As Helen talks about cooking and her children and grandchildren, her free leg bob s ups and down to add dramatic effect Bobbing her leg and pulling at the small pon ytail of thin gray hair at the back of her head Helen says hair is a mess. my curly hair which I have pulled back at the nape of my neck. says to Allison who has thick straight brown hair cut shorter than a traditional bob. lifting her breasts. they were perky. I u sed to Tom C is where the simila rities between my mother in law and Helen begin to diverge. Allison and I are no t in a position to disagree. All ison is divorced and although I am married, I a m the first to acknowledge that married life says you twice. I divorced my first husband, and my second husband, Jimmy, died in hospice two
130 years ago. itionally. See look at my picture of my baby, Jimmy. I named him after my boy, refe rring to one of her sons, but I am confused because I a m sure she just told us that Jimmy was her second husband. and two daughters. Helen reaches in a basket next to her recliner to find a picture of her beloved Jimmy the dog who looks like a cross between a collie and a corgi Not really my type of dog I have big dogs with short hair and I am partial to them love of their dog. a efforts to s one pet policy. explains reco talk about the decline of her physic al appearance is an unnecessar y apology for aging. What I find more perplexing is H Tom Catti ng considering that we have just met, but I do not think much more about it because Helen does not stick to one topic long enough to allow any deep contemplation. Helen tells us all about her family and her relationships with them. We already know that her relationships with men were tenuous, but sh e loves her sons deeply She loves her daughters as well, but for different reasons rently in recovery.
131 Another is dead. She has a daught er who lives an isolated lif e in the country. And her named Shelly for try ing to ta ke her baby Nu huh. We do want to hear them. T Helen glares at us through her peripheral vision and moves on to talk about her work as a housekeeper. to clean houses. I wish I could clean houses now. I cleaned those vases up there the other day. She says pointing to several cobalt blue vases atop the kitchen cabinets. Helen must have used a ladder to clean them or worse yet, stood on the counter. knows that I am working on a research project with another hospice about preventing falls. Alth ough it is an important issue, Allison also knows that I pretty much dread the work I have to do on the project. I just nod and laugh at the reference, but do not say anything. sitting still for long, as you can probably tell, and a person can only read so many books
132 aking not realizing how seriously Helen would like to work again. Understanding Life Review in Hospice Over the course of an hour t once was thanks to a perfect storm of life changes. Her husband died just a few years ago under another hospice care. Helen relocated to the Lexington after receiving a terminal diagnosis forcing her to sever ties with many friends who included some of her former ng subsequent visits) gave her life purpose and comprised a significant element of her social life The move also meant that Helen could no longer have the type of animal companionship she craved. Her menagerie once included a monkey. 9 Her illness limited her activities as well. Any physical activity created shortness of breath and fatigue while an abdominal procedure made eating out impossible because Helen could not trust her bowels (a condition not related to her Emphysema). The numerous life changes req uired her to amend her spiritual narrative. In hindsight I realize Helen humorously previewed some of the turning points in her life setting the stage for revealing more intimate details, but such disclosures also comprised a strategy for managing uncerta inty commu nicatively (Brashers, 2001). s intriguing and enticing to Allison and me I can only speculate about why Hel en (reminiscent of Mr. Johnson) was so willing to disclose so much of her life, so quickly, to complete strangers. 9 The team offered Helen Pet Therapy, but it was not the same as havi ng her own dog and in fact exacerbated her feelings of loss.
133 that some disclosure, maybe even personal disclosure, is logical and likely to occur quickly, but the setting confounds me and Helen did not come to Allison for c ounseling. M ost people probably never consider therapeutic counseling among the services available from hospice. Furthermore, patients and families frequently assume that hospice social workers serve as advocates only and gatekeepers for initiating so cial services. D uring our initial visit, Allison o nly stated her position, did not describe her work as therapy n or did she establish parameters or goals for visits. The frame for understanding visits with the hospice c ounselor (and chaplains) is ambiguous at best. Of course, what patients like Helen understand about the roles and responsibilities of Licensed Clinical Social Workers or a Doctor of Psychology remains unknown. The standard therapeutic frame however, communication sty le. The knowledge of her dying creates an existential crisis that influences her talk while reframing how and what she communicates, and why (Mellor & Shilling, 1993). Petronio (2001) because there is a potential vulnerability when reveali This prevailing theory about self disclosure and its risks, however, does not necessarily hold up in the face of t erminal illness. People who are dying may not need to maintain the comm unicative boundaries of their past because they may feel as though they have less to lose. The typical risks associated with self disclosing personal or stigmatizing information may also change because a life limiting prognosis creates terminal time (Yingl ing & Keeley, 2007), which fosters a sense of urgency. I argue that terminal time
134 frees up the psychic space necessary to engage in communication behaviors perceived as risky. 10 A lthough listening for the purposes of supporting or facilita ting life review (Baugher, 2008) occurs in hospice, my observations suggest that patients do not actively seek out hospice care with the goal of engaging in life review, achieving therapeutic breakthroughs, or even making new friends. In fact, I have heard patients, includ ing Sonny, say that they were surprised that hospice offered much more than a place to go and die. Members of the care team do not stipulate life review as a goal of hospice care either but recognize that some patients may wish to talk about their pasts. It also appears, based upon observations and interviews that team members understand storytelling as life review and therefore, part of the dying process. An excerpt from an interview with a team member illustrates this perception about life review. Jill ian: what would make somebody comfortable, or what will make for a good death? Allison (counselor): Well, I have to do more rapport building and work on accepti ng the patient where they nd then give them the (medical) information as i s available. And usually they do come around and usually like the one patient whose daughter said they did want to talk about death or dying and they ini tially want hospice. So we ha d to discharge them and then re 10 A p articipant s age likely plays a role in her willingness to communicate more freely. It is also possible that older people are more likely to reflect back upon their lives rather than project themselves into the future.
135 much her, you know, ying. An alternative way to understand life review is that it is frequently a spontaneous result of having a captive audience of strangers In order for patients to get to know the members of their team and vice versa they will engage in communication techniques such as open ended questions and small talk to build trust and rapport that result in life re view. as well as offer insights into their spiritual needs. * * I am feeling disoriented pace. Helen t akes a soft peppermint candy from the plastic tub next to her recliner and encourages us to take as many as we want from the dish on the coffee table. I take one. I can hardly peel the cellophane fast enough I thoroughly enjoy the pillowy texture of the p epp ermint, but t he candy is gone so fast it does little to dull my hunger pains. We ha ve been listening to Helen talk about the details of her life for an hour and we have not glimpsed her escape artist cat once. My water is almost gone and I am ready for Allison to start wrapping things up so we can eat. I have learned a few things about listening after many months of field work. One, listening is hard work. Two, the ability to listen for longer than an hour is the reason therapists give you 50 minutes n ot 60 Three, my body knows, without the assistance of a clock, when a visit reaches an hour. And
136 fourth, being hungry (or extremely hot) does not make for an environment conducive to listening. In fact, my need for food prompts me to fantasize about where we might go for lunch. make promises that Helen agrees to the next meeting. We leave with our standard ou. I look forward to seeing you Walking to t he car, I cannot help but think about The two look alike with white hair an d wrinkles that indicat e a similar age. Both are quick witted, but Helen is much more energetic (I do not know how much the stages of their illness at the ti me of our introductions account for this difference .) Spunky or feisty are both good words to desc ribe Helen whose devotion to using foul language I admire. Sonny and Helen both love their f nervous. I like her so much a nd so fast. I wonder if I can stand getting close to another hospice patient only to lose her On the other hand I am not sure it is even possible to replicate the same type of intimacy I had with Sonny again or why I feel compelled to emulate our relatio nship. Allison makes a similar observation when I tell her that I really hospice patient and we attempt to piece together all of the fragments of her life into a cohe rent narrative.
137 those creepy dolls that look like lit tle kids. E shuddering at the thought. Allison asks. ion it positioning s directly relates to her training, but it makes me wonder what else I might miss when you think about what she said about Tom Catting my best Loveline psycho analysis skills 11 closure and the referring to the July, so more family members can attend. 11 Loveline, a late night radio talk show hosted by a disc jockey and a physician. The hosts frequently detect a history of sexual abuse among callers, usually female, who engage in promiscuous, unhealthy behavior.
138 not nk back to the missed opportunity to honor Sonny by going to the track and betting on the horses. I guess I value such symbolic rituals more than I realize. acro ss the street is out because Allison was jus t there Sunday and so I suggest the Thai place next door to the Lexington Thai it is and I am not disappointed. At lunch we talk more about Helen and her frantic communication style and complicated family. Al li son and I cannot agree on who is who or even how many kids Helen has, but we definitely know the blond headed hussy is her grandda ughter. It will take at least three more sessions before we can finally piece together and track the Holyfield family tree. St orytelling and Spiritual Suffering Although the first visit with Helen was a solo visit, the n ext two observations are joint visits with the nurse and counselor. I had not seen Carrie hospice nurse, in action much since the murder suicide in Decem ber. Having a chance to see Carrie interact with patients offered me a few new insights Carrie is very thorough meticulous actually I recall the first time I saw her work (not with Helen) and I noticed that she cleaned the bell of her stethoscope with h and sanitizer before using it on a patient. No other nurse took such minute steps. Impressive and considerate, I thought. Allison coined a term to describe The Carrie Variable She used the term because none of Carrie ents ever died. This is a bit of an exaggeration of course
139 because Carrie s did die, but some of them had received hospice care for years, not months, before dying. Helen interpreted Carrie adding a layer to my assessm ent. Carrie me during o stories? I wa nt to hear som cleverly avoiding any criticism of Carrie. playing coy. replies. you witness a crime? Are you in the witness protection program or h oping to egg Helen on a bit. Helen does not immediately oblige, but opts for another topic of discussion. Instea d, she tells us Helen feels guilty about contributing to his dependency habits as encouraging co t my comment as a possible explanation, but then s he jumps to a new topic. She tells us about the challenges she had
140 fostering a stronger relationship with her youngest daughter Lucy, and this revelation is enough of a lead in for Helen to tell us about h er criminal record. the stuff I say, in an attempt to verify my understanding life. I as k rhetorically. ask another question about why Shelly would do that, but I decide to hold off, allowing the story to unfold. d she made me mad so I beat her Jimmy worked because he worked down the street from the house and told him about it and that was that. The lawyer told me I better just pack shit It was like that little As Helen talks, I am still trying to put the pieces of this fascinating puzzle together so I ask anothe r question knowing that if I do not ask now I may not have a chance to return to the topic
141 Shelly, who was your age and married to your dad, took your daughter, Lucy, and was I really how they say someone goes into a blind rage ? (W e nod .) I diverting from the topic obbing and it catches my atten tion good people to know and I used to have them over and I ga ve them coffee when they were in my neighborhood. This was back when cop some of her paramours were police the times when the cops came to her hou se. I can tell she is bragging; illustrating her power and toughness. He but I have learned to limit my probes because questions can sidetrack the larger narrative. children when this fight with Shelly ensued. Listening to Helen, however, I get the sense that her daughter, Lucy, was old enough to recognize the drama, but not so mature that she could fully comprehend the motivations that contribute to such discord amon g adults. Allison brings the conversation back from the stories of police officers walking the beat to Helen and her daughter. step
142 r for gave me for taking her back suggests she is conjuring up an image in her mind from her past. to gauge what level of work Helen might want to do before she dies. proba bly bothering you. But I also understand th Allison suggests. I add. There is silence among the three of us. sitioning to a less painful figuring there is another story here. My boldness surprises me. Helen pauses for a moment before she answe C atting
143 was nothing to look at. him in that way, but he was a good man proclamation abou t dating and sleeping with many men during her youth impli ed that she was unfaithful to her spouse, but now I am reconsidering my earlier conclusion. The I cannot believe the Jerry Springer like drama this woman endured in her life and then at other times I am not surprised. I am in awe of her resilience and upbeat attitude * * aking referring to the more upscale condominiums where Helen is relocating. have to do what they have to do, sidelining my attempt to whine about the premature dissolution of our budding rela tionship. Our arrival at the Starbucks drive through derails the conve rsation from Helen to soy lattes and iced coffees Allison and I spend the 15 about another patient in my study, Doug, who I have n ot seen in some time. Allison tells me we are going to see him later today. She also tells me he is declining. This news is not a surprise, but it remains sad because Doug is young.
144 We pull into the driveway of the Lexington and my attention turns back to Helen. I wonder what she is going to say about having to move again. The last time we visited, the possibility of moving was in the discussion phase. In past visits, Helen has alluded to her inability to relate to her children in emotionally sensitive way s, but she can easily engage in bickering and antagonism with them (I witnessed this first hand when one of in response to pain and sadness. Although moving is in no w other losses, I suspect the demise of another set of relationships, this time with her hospice team, will sit at the forefront of her mind. move in th e adjoini she also sounds resigned to the idea and knows she cannot put up a fight this time. Allison reaches into her bag and hands Helen three books that Helen loaned her. The two spend a couple of minutes talking about the narratives while I listen Helen
145 offered me some books too, but I had to turn them do wn and blame d my lack of reading for enjoyment on gra duate school. The two finish chatting about Jodi Picoult and then up because it makes me upset all over again, so I just stuff it down. T my husband Jimmy did when my mom died. And then a few years la ter tha raped by a group of men. I never told anyone because I was afraid no one would believe me. I was thought. not until now carry that around and not be able to tell anyone, especially if you were Helen unpacks her trauma and its costs on her life. Helen suspected that she was ailment and her father could not or did not express any loving emotions toward her. twelve she looked to her father to express his love in material ways she always had what she needed when it came to clothes or toys but she never felt as though she had her parents
146 onships with men that lacked genuine intimacy. As Helen talks she stares at the wall and the look on her fa ce combined with a certain feeling in the room makes me think she might start crying. I do not notice any signs of emotion, yet I can tell Helen is sad, sadder than I have ever seen her We let the silence communicate for us. After about a minute Allison t ells Helen that she has experience doing counseling with survivors of sexual abuse and trauma and they could do some therapy. Helen does not dismiss the idea out of hand, but she does not leap at the cha nce either. The moment of silence among the three of us gives me pause. I often moments before someone speaks, I try to anticipate how long the silence will last who is going to break the silence, and how. If Allison bre aks the silence first she usually offers an empathetic response and rarely a solution and for some reason I expect the latter each time. If patients take the initiative to speak first they usually downplay the moment that triggered the silence as if the w eight of the moment cannot exist without interference. I do not, however, interpret such hedging as a form of disconfirmation (Cissna & Sieburg, 2002) emotional reservoir. Most people return to these emotional place s sometimes in the same or subsequent visit as a type of communicative toe testing of the water Gradual self disclosure illustrates the importance of viewing patient visits as a small part of a larger whole. A pr ocess over a task oriented approach allows team members to pick back up on narrative threads or at least create opportunities to return to certain themes. Failure
147 to create these spaces prohibits communication about dying or spirituality which is importan t at the end of life. These topics, however, are not explicit goals for team members ; rather they emerge as byproducts of other seemingly incidental talk. Our time with Helen for the week ends and as we conclude with our hug I say to He e with a curious expression I begin to question my decision ut As soon as the word s leave my mouth I question why my genuine attempt at sharing an authentic sentiment sounds, or maybe feels, tr even this smacking Allison on the rear end. havior does not surprise me because smacking someone on the rear is a form of affection consistent with her personality. Allison looks up at me stunned. She does not say a word, but her face conveys a what was that ? Assessing Spiritual Needs According to Long (2001) spirituality and communication are interdependent and the two concepts are so enmeshed that it is difficult to know where one ends and the other torytelling illuminate this point. Cleaning house, a topic Helen mentioned several times during our visits, on the surface seems a superficial act easily given up when illness becomes prohibitive, particularly for someone like me who rarely make s her bed a nd is lucky to vacuum once a week. Cleaning houses, however, gave
148 nd a sense of order and control; thus cleaning was a spiritual act. Kellehear (2000) calls this type of spirituality, situational transcendence which can ari se out of such issues as the physical side effect of symptoms, foreign environments, and the loss of familiar work and home surroundings. Althou gh Helen recognized the limits the illness placed on her abil ity to carry out a central element of her life, her inability to do such meaningful work allowed the traumatic psychological dust to se ttle. Kbler Ross (1969) argued that those of us not actively dying need to take the time to sit listen and share, but this process is a two way street. By taking advantage of a captive audience, Helen supervised the cleaning of her spiritual house 12 Writing about spirituality in hospice care, Kellehear (2000) notes that people who are not religious have concerns about forgiv eness and closure that are more synonymous with re ligious discourse than we might expect. The tendency is to assu me that religious approaches are sufficient for resolving a patie spiritual suffering A excerpt from my interview will Judy a nurse, is one example. Jillian: H ow do you ass Judy: in God? oh, absolutely there is a Heaven, there is a God. Jillian: And what do you do if someone says, for example, Judy: Well, if they say for example, Why do 12 Thanks t o Steve Schoen for his contribution to this analysis and house cleaning metaphor.
149 Jillian: What kind of reception do you normally get? Judy: depending on Jillian: Right. Okay. So have you ever had any conflicts around the issues of spirituality or religion with patients? Judy: Jilli an: And was he okay with that? Judy: Uh huh Jillian: Judy: Say say it again? Jillian: So how talked about quite a bit in hospice. How would you explain it to somebody like, like me maybe. [Laughs] Judy: Well, I think . spiritual suffering to me would be someone who wants to be introduced to the Bible or never b een told how to be Born A gain and to repent of their
150 wo uld be a big suffering, that would. Not knowing that, yeah. Patients however, may resist use of religious interventions to solve their spiritual crises (S ee chapter 7 for more detailed discussion about pastoral care ). Therefore, it is impor (Kellehear, 2000, p. 1 51) While some patients may look to traditionally religious outlets, such as prayer, for achieving this type of spiritual transcendence, other patients may need forgiveness (self or family), or self reflexive analysis, or the rapy to move on psychologicall y (Kellehear, 2000) Helen created an opportunity to engage in moral and biographical transcendence through storytelling b y revealing the sexual trauma that she experienced as a young girl, describing her attempts at sexual retribution against men, and ack nowledging her flaws as a parent. Ambiguous Ending During our final visit together ry Although Allison told Helen we would visit again, we never di protected me from the experience of losing her to emphysema, but it did not diminish my interest in Helen or her story. I check the obituaries almost dail y hoping to gain some closure. I once asked Allison abo ut her after I left the field, but she had not followed up
151 I liked Helen so much and was disappointed that I would never have the opportunity to find out if we would become closer friends or if I would mourn her death the same way I mou the one hand I am thankful to avoid the pain that accompanies such a loss; on the other hand the lack of pain also means less joy. I would never discover the extent of my contribution to her quality of life and her s to mine. aration during our first visit about the limited value of men left me with the impression that I could benefit from her hard earned wisdom. I thought Helen could teach me something about how to live and die. And in return I could listen without prejudice a nd witness the end of her journey. I hesitate to claim such an altruistic rol e as that of a liberator I only kne w Hele n for just over a month but I had the distinct feeling that she needed someone to help unload, if only temporarily, her burden. A mont h of visits did not seem like enough time. This is not to say that Helen was completely unencumbered, cleansed, or made whole again by sharing a few closely guarded secrets, but the timing suggests that Helen needed someone to come alongside her and share the weight of her worries. Listening allowed Helen a few moments of weightlessness. Illness and dying are lonely experiences 13 exacerbated by having to carry the yoke of past mistakes and regrets or the frustr ation of unfulfilled ambitions (see also, Puchal ski, 2002). I have focused on the way Helen commun icates about her past with one member of her hospice care team and me to illustrate that spiritual pain can include a wide range of spiritual concerns appear reli gious (the need to confess and receive forgiveness) they are in fact only cloaked in 13 I thank Leah, a friend and mentor (who died of ovarian cancer) for teaching me this lesson.
152 family, her animals, and her work (cleaning homes). Such inclusive understandings of needs. While some (Kirkwood, 1994) argue that broad spiritual conceptions are problematic because they are too inclusive, I disagree and ask who does a narrow conce ption of spirituality serve and who is uninvited? I concur with sc holars such as Kellehear (2000) experience and its relati A broad understanding of spirituali ty and spiritual communication helps us recognize that the s tories we tell, whether they are about traumas, regrets, pleasures or accomplishments 14 may indeed constitute the es sence of being human (Long, 2001) The ability to look back upon a life and rest ory it is only possible for people who feel as though their lives constitute certain accomplishments. For some, having and raising children equals a full life, for others personal and professional accomplishments constitute a life well lived. Some individu howev er, do not attain the quality or achieve the quantity of life necessary to bring a sense of completion to their lives. The ne xt chapter focuses on how dying yo ung bef ore fulfilling goals and dreams and denial create communication opportunities for hospice care. 14 I want to draw attention to the notion that spiritual communication may come f stems from ruptures in the narrative a person hoped to create, but now must abandon because of a life limiting illness.
153 Chapter 6 Dying Young, Denying Death and Searching for Answers P revious research has focused on the failure of health care professionals to communicate about dying or death with patients and their caregivers (Ragan, et al., 2008) By placing the focus on health care providers, such studies frame communication too simplistically, employing a transmission model of co mmunication. However, more recent medical research (Larson & Tobin, 2000 ) is beginning to acknowledge that communication is more dynamic than a transmission model allows. Recognizing that communication involves a transaction and dialogue between at least t wo people, the burden and expectations abou t who is responsible for end of life conversations then becomes the responsibility of the speaker a nd the listener or the carer and her patient. The question about who is responsible for initiating talk challenges communication scholars to look beyond the skills of speakers and focus on the institutions that influence communication. Sometimes patients rather than their health care providers create opportunities or barriers to talking about dying and death. Doug and Mr. Greenberg illustrate this challenge. Stages of Dying and an Unfinished Life I felt a twinge of nerves as we pulled up to Doug less than 10 miles from the Gulf of Mexico. I always feel nervous when I meet a new ad mission. I have come to view my paranoid thoughts as reflecting my concerns about acceptance as opposed to fear about meeting a person who is terminally ill N ewly
154 admitted hospice patients have many new people coming in and out of their homes during the first we ek or so following admission. After an admitting nurse visits, patients have appointments in their home with a nurse and a counselor from the team they were admission sometimes necessitates the delivery of equipment such as oxygen concentrators, a hospital bed, and even medicine. In a matter of days, hospice can convert hospital and the space between the world of health and the world of term inal illness begins to narrow for some I am confident that my presence, may contribute to feelings of turmoil. Not wanting to add more stress, I get nervous and I prepare myself for the possibil ity that my presence will be unwelcomed. ikely contributed to the anxiety I felt as we the Interdisciplinary Team ( IDT ) meeting the day prior, that Doug had be en living with AIDS for over 20 years. At the age of 42, after managing AIDS with pharmaceutical cocktails, Doug however, was not dying from the autoimmune disease, but from cancer. Although I did not know much us, those facts alone mad e me feel sad because I, only eleven live. Our first meeting confirmed my preconceived ideas about Doug Standing on the porch, we could see thre e figures towards the back of the house. Allison knocked, called out and then unlatched the screen door allowing us enter. As we crossed the threshold of the Kent Frey residence, I was surprised to see its interior did not
155 at all match my expectations. The neighborhood was close to a major thoroughfare and the other houses on the block were rundown with untidy yards. The garnet red walls, shiny cherry wood floors and simply decorated spaces appeared straight out of a home nurse was already sitting at their Amish st yle table. The feeling of light chatter suggested to me that Judy and Doug were becoming fast life partner, hovered around the kitchen, operating somewhere between quiet observer and concerne covered in a casual pair of cargo shorts and a t shirt. H e wears his dark hair cropped closed to his head, a remna nt from his time in the service I suspect. abdomen was the only tip off that he was sick. All of the action takes place at the kitchen table and as we approach, Allison introduces nd my hand to Doug and to Tom who has finally taken a seat a t the table efer her knowledge of my t it later, after take a seat at the table next to Allison and watch the discussion unfold. Judy begins to ask the standard hospice questions about bowel moveme nts and pain. As Judy asks and Doug answers, both Judy and Allison document the responses into The screen displays a series of questions that, when selected, produces a drop down menu of possible responses.
156 you suffering? morphine got off of it. I was taking way too much of that stuff, drinking it straight out of the bottle. I was sleeping all day until Tom told me I had to get off of it. I because I Tom can you get those bottles. I was ad bottles from the kitchen cabinet I worry that Tom i s being too punitive by insisting Doug m also concern ed that Doug might refrain from using the morphine even when he needs it for fear of developing an addiction, which is a common, quit cold turkey makes me suspicious a bou t the authenticity of his story since combating benefit Tom brings the bottles over and hands them t o Judy. in a matter of with a genuine tone of empathy. Judy silently enters information from the prescription bottle into the computer.
157 Whoa, I think. Most of the patients and their caregivers that I have observed, until now, do not make any explicit or even overt mention of dying Doug is so matter of fact. and heart rate, which all c heck out fine you the s he says in an accent from the heart of the Midwest. ar? To m. compliant, but not eager. have to go up there at ks as if she is reading my mind. would be the first person I would call if I was diagnosed with cancer. Doug says, annoyed by the thought. Doug not calling his mother scares me more than the thought of him having to make a very difficult phone call. My mind races
158 as I try to explain to myself why Doug would delay having this very important conversation. You might want to late o cial Worker m licensed to do therapy. I am here to hel p you through the dying process. is direct, yet ambiguous enough to leave room for interpretation, but I wonder what it means to help someone through the dying process. D o you know h explains to me later that the Mission is a not for profit organization that provides mental health and substance abuse counseling generally for low income people and not people who own two homes in two different states. It is not clear why Doug uses all of these social services (including Meals on Wheels), but the sense of entitlement and the willingness to take advantage of these programs when they might not be ne eded disturbs me. use of this
159 I feel like a tennis ball traversing the court at Wimbeldon. I think that Doug in one breath, is accepting his terminal diagnosis, but in the very next breathe he is talking about overcoming past traumas, repairing and perfecting his 20 y ear relationship with Tom, and jet setting during the next three years of his life. The reality is that if Doug is in hospice he has been diagnosed to have 6 12 months to live at best and given the fact that he has untreatable liver cancer complicated by AIDS, it is more likely that he has less than six months to live. I can certainly work with you on the past trauma, I used to work with trauma and abuse survivors and we can definitely talk about your anger because that does come up a lot with people when they are sick, says Allison. he ounseling from Allison seems unusual I have this strange feeling that Doug has spent a lot of time in therapy. He talks too succinctly and with such clarity about his past trauma, and the very fa ct that he calls
160 his experiences trauma sounds as th ough he is diagnosing himself. Doug already seems to know the sou rce of his anger, bu t like many people facing relationship issues he continues to have difficulty making positive changes. During the cour se of the discussion about Allison doing counseling with Doug and Tom, I agree to not come to their next appointment so they can communicate openly about their pasts. I try not to appear disappointed whe n they schedule their next non therapy related appoin tment for another day that I cannot observe. with HIV I never would have thought, Doug says. ry now befor not wanting to discourage Doug Eat, Pray, Love ? visits is Italy because she always wanted to learn to speak th e language opening my mouth. I have a feeling that I have said too much and what I have said is not par ticularly helpful, only contributing to his denial.
161 ck? We used to love to go there, Doug rep lies. draws out the oood in good. says encouraging Doug and Tom to enjoy their love of food any admiring the kitchen behind her. directing his attention to Tom who I am probably just paranoid, but I wonder about the authenticity of Doug inter est in reading the book humoring me since I was so enthusiastic about the memoir. After Tom hands Doug a pen I w atch as he carefully prints the name of my latest favorite book at the top of some VA paper s. The papers look too important for this use.
162 referring to their upcoming counseling appointment. As we stand to show ourselves out, Allison reaches to give his posture appearing rigid. He makes me feel awkward, as though I should just shake hands with him to honor his comfort level, bu t instead I give b oth of them hug s and we leave. Allison and I walk out to her car in silence. As we don our sunglasses and wn gritted teeth. As soon as we believe we are safely out of sight we begin processing the visit. trying to che ck my perception Bargaining, was that what that was, I think to myself. Bargaining had dropped off my mental list of the responses dying people have as they mo ve closer to the end of their lives. I say etween disbelief and acceptance. I wait for her to
163 fas observes. did think all of that stuff about the morphine therapy at the Mission. I bet they are institutiona ys that Doug and Tom had absorbed No one should be in therapy for that long. It means they are not getting any tools. I bet there is some history of do hasis on the first syllable in domestic es next week, I say still Rethinking Denial as a Barrier to Co mmunication about the inevitability of his impending death. The majority, if not all, of newly admitted patients that I have observed do not acknowledge that a hospice admi ssion means the y have six month s or less to live. W hen m any people
164 ce admission is always a life limiting diagnosis. AIDS suggest his willingness to openly talk about death is no t surprising. What is curious is how despite recognizing that his death is imminent, Dou remains future oriented. He reacts to his cancer diagnosis and hospice admission by talking about future travel plans to Italy and working on improving and finally getting right his relationship with his partner of 20 years. On their face such proclamations would su ggest a high level of denial which hospice staff must help Doug o vercome to eventually accept his dying and death. The rest of his lif e, and begin to understand what might constitute a good death. For example, to develop a course of treatment or care that keeps Doug pain free, but not sedated. Also, Doug makes explicit his wish to have some healing related to past trauma and improve make traveling to Italy impossible, but it nonetheless tells the team about some of Do goals and provides another opportunity to make specific care plans. One problem is that not al l patients are as reflexive, self aware, or communicative. Denial as a Social and Relational Phenomenon This encounte r also shows how denial is not only a p sychological state but also a relational and socially constructed phenomenon among Doug, his partner Tom the
165 hospice staff, and a researcher. None of us questioned, for example, the travel plans Doug discussed and thus we were complicit in his denial. Acc (p. 1771). In or der for denial to exist it is understood as an unconscious response to impending death. reason for their hospice admission reveal that denial is a communicative act. indicates that denial is not alw ays a natural psychological reaction to impending death, but is in some cases a choice 15 In the hospice model, patient autonomy is supposed to take precedence over the will of the team and sometimes caregivers. Thus if denial is a choice it should not be p athologi desired reality. Whether or not team members understand denial as a psychological phenomenon or a choice, denial creates a particular t ype of communication problem hospice teams must negotiate. Hospice staff label p atients or their caregivers who deny impending death for too long or at the wrong times as difficult. Denial requires hospice staff to tip toe around the inevitable, to use more caution when choosing their words or delay helping patients make plans for aft er death care. Viewing denia the likelihood of communicating in ways that accommodate denial. In some instances denial is a problem because caregivers act as if their loved one is going to live forever or be cured (for a d i scussion about m isunderstanding remission, see Ragan, et al., 2008) As a result of denial, family members and other non professional caregivers will force patients to eat 15 denial as
166 when they are not hungry, make them take showers when they are too weak, or encourag e them to remain hopeful in light of a hopeless situation. A patient members. Some team members express shock when patients deny they are dying and veteran team members, usually nurses, rem ind the team that denial and its accompanying non define as a bad death. nt. A woman in her 50s with en d stage ovarian cancer was receiving tube f eedings at the insistence of her family. As predicted, the patient was unable to process the artificial nutrition and began experiencing complications including severe especially the nurse, chose to use the argument that good medicine should prevail rather than attempting to get the patient or her family to accept the inevitability of her death Deferring exclusively to sound medicine is an interesting rhetorical choice and seems to encourage the denial of dying rather than help a patient and her family begin preparing for a loss. This emphasis on medicine as the primary solution is a problem given could ask a patient about the motivation (or hopes) for pursuing such treatment. A chaplain or counselor could assist a patient and her family with making sense of the illness and the meaning of treatment on a spiritual or psychological level. Viewing de nial as an autonomous choice to avoid talk ing about death fails to acknowledge the myriad of ways to help a patient and her family to prepa re for, if not
167 fully accept, a death Denial of death then is appropriate during the early stages of a terminal diagn osis until such time that t he imminence of death cannot be denied or the denial of death prohibits care or is otherwise detrimental to the patient or her family (Zimmermann, 2004) The belief that denial is appropriate at certain stages because it is a nor mal reaction to dying, as well as a choice, allows a patient to proceed at her own pace down a path to acceptance. S uch an orientation to denial of dying however, is not always realistic because there are times when patients and their families need to acc ept death sooner rather than later, to put affairs in order, resolve past conflicts, make treatment choices, or just create opportunities to live life as fully as possible until death. The progression of an illness can provoke team members to broach end of life topics, but there are times when team members will avoid such discussions because the patient never mentions them. D story is an example of how information ab denial can set the stage for future communication about the dy ing process. The Dialectic of Denial Elisabeth Kbl er Ross (1969) branded the stages of dying and noted that denial is but one stage and that pa tients can move back and forth between all of the stages (e.g., bargaining, depression, acceptance, anger). Wha t is often missing from the discussion about denial of a terminal diagnosis, and its counterpart acceptance, is that patients and their families may simultaneously accept a diagnosis yet deny the inevitability of death which exacerbates the ability to mov e down a straight and narrow path towards a good death. If patients never acknowledge their inevitable death then they risk missing the opportunity to make related choices. I think this is particularly true of the patient who has cancer. Since cancer is f requently invisible to the naked eye, I have seen patients who
168 struggle to see how the disease will result in their demise In some instances, patients hold onto hope for a cure or that one more round of treatments will prolong their life. t living for three years, yet expressing his disbelief about having cancer illustrates this point. Doug does not explicitly deny he has cancer or the reality that it will kill him, but his discussion about making travel plans and living far beyond the dia gnostic parameters that make him eligible for hospice suggest that he also maintains some level of denial. denial is problematic for hospice only insofar that it interrupts or interferes with care. Another one o f my participants is also an excellent example of the dialectic al tension that exists between acceptance and denial. Mr. Greenberg, a 91 year old man with cancer of the liver, was told by his physician that he h ad less than six months to live. N ine months was in such terrible pain before I got into hospice and Dr. Sloan told me for more than six not fully envision the inev itability of its outcome. Moreover, Mr. Greenberg f elt confused give prognostic information. Peggy reminded Mr. Greenberg that he did have cancer, but the disease was likely slow moving and took this as an opportunity to tell Mr. Greenberg
169 et. So keep doing what you always do and enjoy th e time you have. Mr. Greenberg and his wife both nodded and thanked Peggy for the information. This level of openness allows team members to communicate frankly with Mr. Greenberg whose communication style is open and accepting. Other patients approach conversations about dying differently as Grace, a Home Health Aid describes during an interview Jillian: So, you just let them really guide the topic of conversation? Grace: Yes, and you see how it goes alo ng. And, sometimes, talking about death conversation. Like, for s go back to April (a patient Grace discussed earlier son) ever y now and again usually come in one lar ge sitting. really had one full sitting where we talked about death. It comes in bits and pieces. The bits and pieces that Grace describe s above may explain why patients do no t talk frequently about dying or death and move back and forth between accepting and dying a terminal diagnosis as Mr. Greenberg The fluidity of boundaries between stages creates a dilemma for hospice not easily overcome or e ven acknowledged. Denial, whether or not hospice team members address it explicitly,
170 remains a co constructed phenomenon to accept the inevitability of their dying and eventual death would appear to mark a failure of hospice to prepare someone for the reality of death, yet team me mbers make sense of this tension as the f the various practioners. The h ospice model always preva ils; and as we will see in the next chapter th e same is true of team member s understanding of what constitutes a good death
171 Chapter 7 C reating Opportunities to Communicate about Death Hospice care and its mission are unique when compared to other health care organizations. Th e founding principles that guide hospice care, for example, developed in response to dissatisfaction with health care practices and social attitudes detrimental to people with terminal illness. Yet hospices and the conversations that occur there are not im mune from the influence of other institutions. Traditional medical models of care, the concept of stewardship, and Medicare requirements enable and constrain communication about spirituality, dying, death, and a good death in hospice. In the section that f ollows, I will discuss how such institutions shape communication in hospice. I begin by first discuss ing some of the communication barriers that constrain spiritual care in hospice by returning to observations from the field. Missed Opportunities and the s, but the last time she called There is no reason tapping his pointer finger on his temple. This gesture makes me think of Mr. Johnson I wonder if he feels the same way in his heart. just to be sure Sonny knows it i s not an inconvenience.
172 * * eam chaplain come for a visit reflects a common response particular ly for people who do not practice a religion or adopt one of the faith traditions. Many people, however, consider themselves spiritual, but not religious, yet do not call on the chaplain. In fact, all of the individuals I observed while shadowing the chapl ain exercised their beliefs through such religious practices as prayer and/or taking communion. In addition, I did not observe any hospice patients who sought the care of the chaplain to work on spiritual matters independent of organized religion or religi ous rituals 16 I contend that one reason the chaplain is underutilized and when called, only employs religious rituals, relates to how patients perceive and understand the roles and responsibilities of chaplains. Sonny and others had concerns that the chapl ain might seek to convert them. Sonny once mentioned, when talking about his parents, that his father was a devoutly religious man who forced the family to attend church every Sunday. The distain in Sonny voice while talking about this time in his life mad e me think there might be more to the story, yet I felt it inappropriate to probe further. While Sonny never explicitly linked his disinterest in seeing the chaplain with his 16 The chaplain did discuss conducting guided meditations with a patient.
173 Catholic upbringing, I suspect he was reluctant to pursue visits for this reason. I could ion of scope of what constitutes spirituality and thus spiritual pain. The spiritual issues people described when narrating their lives to team members were vast, in cluding such topics as giving up a child for adoption, drug use, addiction, and sexual abuse. One patient described renting an apartment for a woman so she could be a prostitute under his management. The woman eventually ran off with her first customer spa ring the patient any additional regrets regarding this venture. Three of the five team members I interviewed defined spirituality using monotheistic terms including God or Higher Power. If team members define spirituality more broadly, the greater the like lihood they caring for her animals as elements of what gave her life meaning, an d therefore a component of her spiritual self, hospice staff treat these dilemmas exclusively with non spiritual interventions such as counseling and pet therapy. Therapy may benefit similar patients and reduce spiritual pain, but this does not preclude pa tients from also receiving spiritual care from a chaplain. Alternatively, team members who tend to focus on the meaning or purpose of their lives staff will miss opp ortunities to recommend a chaplain.
174 illness and a spiritual crisis means that many patients may not receive the holistic care foundational to the hospice philosophy. By using na rrow definitions of spirituality, team talk about spirituality, employing religious terms, prohibiting talk about spirituality among patients. Such discourse also exists in team meetings where talk centers on definition firmly rooted in religion, is one such example. Another barrier to the use of chaplains in hospice includes how team mem bers present the idea of spiritual care to patients and families. Introducing Spiritual Care to Patients occurs during initial admission and then again when members of the pat make their first home visits. At these visits as well as throughout the patient s time in spiritual care in this way tells patients very little about the cha plain, such as whether she or he espouses exclusively to one religion or is non Lack of such details and insights leaves patients to come to their own conclusions about what a chaplain does. For some patients, especially those raised Catholic, the image of a chaplain likely brings to mind Last Rites (now known as the Sacrament of the Sick).
175 Furthermore, people who are Jewish, Muslim, Buddhist, Atheist, and even Wiccan 17 may purpose. The work of chaplains acknowledges and holds sacred the kn owledge that there is much more the body s8). A team lacking a shared understanding of what constitutes spirituality prohibits the ability to offer spiritual care The loss of a utonomy or physical pain are no less important than the state of a pe the problem neglects a perso being, creates a gap in delivery of holistic especially true in light of th e emphasis on teamwork to accomplish such care. I now Communication and a Good Death Th e last time I saw Doug two weeks ago the 42 year old military retiree dying of cancer, we played chara des in an attempt to distract him from walking around his house and injuring himself. (He had already fallen the day prior and had a huge bruise on his head). During the visit, his abdomen was so large and distended that I silently feared a wrong move migh t result in a torrent of fluids spewing from his belly Doug hoped he could have another drain and the procedure would gain him a few more days of comfort, but to Allison and me combating the ascites appeared futile. advanced to the poin t that he would have to receive a drain every other day. Since the 17 One patient in my study identified as Wiccan.
176 Administration hospice. Today, Allison and I are going to see Doug for what we suspect will be the final time. hospital ( with a hospice ward ), a nursing home, rehabilitation center and a cemetery. The landscape is beautiful with trees, colorful flower beds and pon ds. We have trouble find ing the floor where the hospice is located because of recent remodeling, but a fter several misdirection s caused by the staff at the information desk, we manage to find the hospice floor. It reminds me of an empty library subtly lit and eerily quiet. A volunteer greets us a nd provides efore we can make it to his room, a staff member stops us and introduces herself. Unlike the staff down stairs at the information desk, this woman is very helpful and welcoming. Getting I see a man wearing a leather motorcycle vest with patches indicating his military service. I silently hope he does because although they share a common bond of military service they could not be more different. Doug seems more re fined than this man who looks as th ough his primary mode of transportation is a Harley Davidson Road King and the bulk of his income stems from selling POW MIA patches and bumper stickers on the Washington Mall. We enter the room to see Tom standing over Dou they are planning to transfer Doug to a chair so he can go outside for lunch. I look towards the bed and notice that er and he has bed head with his short hair going in different directi ons. His stomach, however, remains substantial. Although his eyes are open, unlike last time when he used one eye to avoid seeing
177 double, his pupils have a wild quality that combine s deer in the headlights with calm recognition. I take this as a sign that he is transitioning, maybe even imminent. The nurse manages to transfer Doug and his morphine drip to the chair which is part wheel chair and part recliner. The nurse gives Tom some tips about how to maneuver this SUV of wheelchairs and the four of us take off for some lunch and a cigarette on the patio. Like an entourage, Tom, Allison and I surround Doug creating a physical and social barrier between him and the staff, patients, and visitors who pass us in the hallway. Allison complains to Doug about how all of the service staff mostly janitors and maintenance workers all stare and say hello to me, but not to her. I try to explain that this is what black folks do speak to each other as if we are kin but she is unsatisfied and looking for some symp athy. Doug does not offer much and claims that if he were straight he would p laughs infectiously and we join him. Anxious for a cigarette, Doug puts one in his mouth almost as soon as we cross the threshold from his room to t he hallway. We remind him at the elevator, in the elevator, and once more downstairs that he cannot smoke inside, but he keeps putting the lighter to the cigarette he cradles between his lips. Each time we hear the wheel of the lighter strike the flint we look over the chair and tell Doug he needs to wait until we get outside before he smokes. Each time we remind Doug and he acquiesces. None of us hear s Doug light his Marlboro Light, but a woman in a lab coat immediately notices he is smoking he says, as we pass by. We start laughing because we are less than five feet from the automatic doors leading outside. Moreover,
178 the absurdity of chiding a dying man for failing to follow the rules is comical. Doug says, okay, as if he did not know he was violating a rule and does not take another puff until we find the designated smoking area under a gazebo far from anyone in a white lab coat. Allison bums a cigarette, revealing to her clients that she smokes, and together the two enjoy indicating a dose of the pain reliever is forthcoming. Taking a drag from the cigarette, Doug speaks, observation illuminates our weaknesses we are not the guides who chart a specific course for people who dying. While we that type of information is not helpful at this moment when death is so close. The mysterious nature of the imminent phase of dying appears too unique to articulate much e. disappointed that hospice, an organization I felt a part of, had not contributed more to his r what hospice could do for him were too high. He wanted precise answers from us about his death that we could not give because of the individual and experiential nature of as he stubs out his half smoked cigarette.
179 I was hoping for some great insights about dying to flow fr om Doug, but his lucidness wanes th. ison if he had talked with his mom yet. The answer s was the same every time I asked and it pained me to think that he was still trying to protect her from the pain of losing her son. says simply, but slurring his words. Tom adds. Listening to Tom and Doug talk, I suddenly feel a sense of relief wash over me. I now understand why Doug never made contact with his mother after learning he had terminal liver cancer. While I recognized at the time that I was projecting my own ip with his, I could not see relationship with his mother i s tarnished and his interest in avoiding communication was
180 about something ot her than protecting her, I can let go of the image of a loving mother son deathbed scene. Hospice work frequently involves acknowledging the boundary between your never pressed Doug about contacting his moth er, although I found it distressing to think that Doug would avoid calling, I had to accept that making the call would be my journey and not his. Furthermore, I realize d that my image of a heartfelt deathbed scene between family members perpetuates a very specific narrative of a good death that involves reminds me that not all people need forgiveness or even find these things necessary to achieve a good death. A good death for Doug included having the last word in an ongoing dispute with his mother and bequeathing his material possessions to his niece and nephew. T om offers Doug something to eat and gives him the choices of lunch or dessert ening a small box sealed with a satin peach ribbon, Tom reveals a smorgasbord of pastries: a lemon tart, a meringue, two turnovers (one cherry, one blueberry) a small pecan pie, and a piece of chocolate mousse cake. Doug decides to have the tart. Good cho ice, I think. dripping from his fingers. Tom takes a small carton of milk and a straw out of a white paper bag and offers some to Doug. He takes several gulping sips, releases the straw from
181 of the light and crunchy meringue that Tom started, but decid es he would rather dig into the cherry turnover. Flakes of paper thin dough drift onto his t shirt. The nursing assistant responsible for bathing and dressing Doug is going to be pissed when she sees this mess, I think. I tell Doug that I have never seen s omeone enjoy anything so much. He unleashes his trademark big belly laugh and offers to share, but Allison and I both decline declaring that it is much more fun to watch him. After eating the second turnover, Doug appears satiated. Sugary goo from his afte rnoon snack covers his face and his shirt, which he tops off by smoking another half of a cigarette. We enjoy the sunshine and the company, but the time has come for us to leave. Allison and I hug Tom who seems to have taken to the Coastal Hospice traditio n, and then we embrace Doug and say goodbye for the final time. Doug died the next week following a visit from his sister and just days after his dessert extravaganza. * * According to the principles of a good death described by Smith (2000), the fi nal death is approaching; 2.) the ability to maintain control over when and where his death would occur; 3.) the ability to have control over who is present; 4.) mana gement of pain, and 5.) the availability of a myriad of services including hospice. Not all patients or their families can maintain such tight control over all 12 principles of a good death (Roscoe, end of life care contributed to
182 made him more likely than some to have conside red dying and death as an every day element in his life. Doug wanted, for instance, to r emain as lucid as his ability to tolerate pain would allow, and he communicated such desires to his partner who in turn advocated for and ensured health care providers attended to his needs throughout the dying process. The ability to self advocate is not always the case for patients because some cannot vocalize their wishes as a result of the progression of an illness, and others have no surrogate (Baergen, 2001), which is one reason Coastal Hospice encourage s patients to have a living will, advance d irect ives, or a designated health care surrogate. Patients such as Betty, whose family demanded the reversal of sedating medications (discussed in chapter 4) do not have the opportunity to directly participate in their pain and symptom control because they ar e unconscious, leaving them at the mercy of other caregivers. Allowing next of kin to make health care choices is potentially problematic given research which shows that many family members are often wrong wishe s (Leichtentritt & Re ttig, 2002) Further compounded by pervasive fears of dying and death, some families may choose life prolonging treatment, painful procedures or the withholding of palliative medications or procedures (the latter was the case for Betty). The concept of pat ient autonomy is foundational to the hospice philosophy; therefore, any behavior that prohibits the ability to carry out personal choice contradicts accomplishing a good death. Inaction or allowing another to make choices on your behalf, however, is also a form of autonomy, but only if such passivity is executed intentionally and with knowledge of the outcome of a failure to act.
183 Patient Choice and a Good Death The debate over passive versus active health care decision making and dying well came up freque ntly during team meetings. Most team members adopted the perspective that patients should do exactly as they choose if capable of engaging in the desired behavior. Team members regularly joked about encouraging their patients to consume things like beer an d chocolate during their final days. Smoking cigarettes, for example, is acceptable as long as the patient does not smoke while using oxygen. 18 Autonomy also extended to decisions about health care choices. During one memorable team meeting a nurse shared a story about his patient who after a hospital admission left the hospital against medical advice and bled to death alone I had seen lots of blood working in dialysis but this was more than I imagined. There w a good, no matter how traumatic the circumstances. in the 1 1 for 18 Using oxygen near an open flame can explode. One p atient died this way and hospice team members frequently tell this story when the topic of patients who smoke comes up.
184 to the process of bleeding out. leave the hospital, and he chose to stay home rather than returning to the hospital when he started to bleed from his mouth. The patient made a series of choices and thus had a posited that he had no idea the consequences of his choices, but overall no team members vocalized that the patient had a bad death. An other patient discussed during a team meeting who opted to have his pacemaker turned off was said to have experienced a good death as well. The nurse, however, described a deathbed scene wrought with pain and fear, but because the patient had knowledge of the full range of options the nurse reconciled herself to having helped the patient die the way he wanted. On the other hand, patients who made health care choices that team members interpreted as indicative of denial, fall short of dying well. One woman w ho was dying of cancer (mentioned in chapter 6) insisted on, with the vehement support of her family, receiving artificial nutrition. Team members adamantly argued this would result in a difficult, if not bad death, despite the fact that receiving such car e likely fulfilled a psychological, spiritual, or communicative function for the patient and her family. as well. The desire to pursue futile treatment conflicts with the hospic e philosophy and thus the patient fails to write her own story in a way that is consistent with the larger
185 how effectively staff can competently promote what patients re 99). Interestingly, the team did not view their communication as enabling or constraining mately reflect the hospice mission. The the other patients made autonomous choices that were then storied to match the hospice narrative. Once the patient discontinued t he tube feeding, team members interpreted this as a sign she accepted her fate and put herself back on track towards a good death and Talking about a Good Death Researchers encourage health care providers to engage in more dialo gue with patients about their health care goals. Ragan et al. (2008) argue that palliative care teams successfully accomplish this goal, but my observations of hospice team meetings indicate that the objective of such talk is primarily persuasive (Mak & Cl inton, 1999) rather than dialogic. Team members specifically spoke about patients in terms of persuading them of the right or hospice way. In none of the hospice visits I observed did team members ask patients to describe what a good death might look like for them and very few conversations focused on related topics. Findings from interviews suggest that team members do not think of how their work strives to help patients achieve a good death outside of controlling physical pain. The following interview exc erpt highlights this issue.
186 Jillian: So can you tell me about one of your patients that you would describe as having had a good death? Judy (Nurse): Oh. You want me to name names? Oh, geeze. Jillian: Well, no, not names but can you tell me what the circum stances were. Like their diagnosis, and then how did the illness progress, and then what happened that made you say, Oh, this would be my my best example of a good death Judy: Oh, brother. [Laughs ] Uh, uh, uh, uh. Gosh. Well I can think of one patie his eyesight. It was some some weird dis ease. And uh, he had worked as a CEO for a big company 19 And he had the means for private hire [health care] and all that. And so I guess his death even though he lingered for a while. I thought he was going to die quickly and since I was going to have time off I prepared the continuous care folder so he could have 24 hour care. And it took eight weeks before he finally died. Jill ian: Wow. Judy: Yeah. But he died peacefully at home, in bed with his family around him. Jillian: S o can you tell me about a time when you asked, or if you ev er have asked a patient what a good death means to them? Judy: Well, we have some new questions in our computer base. (I never saw these questions while I was observing because they were add ed after I completed my fieldwork and I was disappointed when I learned the particulars of each question because they probably would have influenced the outcome o f my research findings.) Jillian: Okay. 19 Occupation changed to protect confidentiality.
187 Judy: Has she [Allison] showed them to you? Jillian: No. Uh uh (no). Judy: And we ask mat ter of fact we asked Molly (a patient Judy referred to earlier in the interview) have asked them on. What what what important things would you want to have around you when you die, what or who would you want to have around you when you die? Um, and on e of her answer was lavender. Soft mus ic. Of course, her family. Jillian: Right. And then she laughed. [Laughs] Judy: I thi about it. What would be your wishes for your final days? Jillian: Right, right. dering how you know what to do for somebody to give them a good death. Or what are some things that nurses do for instance, that help make sure . Judy: Well, no pain. Jillian: . .No pain. Judy: No pain. No pain. And you know, some times they die sooner than we think en other times they linger. S e questions
188 previously if t want to talk about, or anything they need to closure on anything. This excerpt shows that until Judy received specific questions to ask about what people might want as death nears (e.g., thoughts abou t final days, surroundings including people or things, and services such as prayer, music, aroma therapy) she never inquired with patients about what constitutes a good death beyond pain control and the place of death (at home or in a facility). Her brief story about the CEO conjures up images of a canonical deathbed scene. When I probed for more information about the right time to introduce the concept of a good death or dying in general, Judy said the following: Judy: e the conversation with the patient, r eight months and you can see the decline, we will ask ow H ow is your relationship with your children ? mentioned. And sometimes we get conversation, s Jillian: Uh huh (yes). Uh huh (yes). So really when you start seeing the physical the family or maybe talk to the patient about some other some some stuff that might help with closure, something . Judy: Uh huh. Yes
189 physically, emotionally, and spiritually in the type of interactions and psychic work necessary to wor k through family matters. I would add that such a conversation at the moment of decline is probably frightening for patients who could interpret such talk as a sign that the end of life is near especially if this is the first time team members have had suc h a conversation. Further complicating talk about what comprises a good death are patients who do not know or fully acknowledge their terminal diagnosis. Framing Hospice and a Good Death For some patients, the first time they learn that hospice is for peop le with less than six months to live is when they have their first visit from a member of their care team. ician and the hospice admissions nurse neglect to frame appropriately the purpose of hospice. This lack of talk creates additional constraints for team members ultimately responsible for caring for uninformed patients and their family members. This dilemm a became clear when I visited the home of a couple marrie d for 60 years. The husband had Mesothelioma a type of lung cancer caused by exposure to asbestos. The man did not look sickly but small hints of his illness appeared around their mobile home For example, d urable medical equipment sat in the bathroom and yards of oxygen tubing stretched along the brown shag carpet. The counselor tried to ask the doctor said it w
190 emph ysema was asked if she had her advance directives, a living w ill, or had made funeral arrang ements, both she and her caregiver he ability to die well is limited without first properly framing the purposes and goals of hospice In addition, it is important for hospice caregivers to introduce the medical and non medical issues related A good death then, necessitates effective communication. I contend that although hospice claim s patients and objectives to get the most out of the available end of life care. Narr ating a Good Death Communication about good deaths also arises in team meetings. From my observations, it appears that talk in team meetings reveals that hospice team members eventually com e to narrate all deaths as good because there is no room for bad de aths in a death contributed to dying well and a good death. Recognizing a dea th as good involves team members narrating the actions of patients and families in such a way that reframes and reflects the principles of dying well. Through retrospective sensemaking, team members come to view all deaths as good by describing the outcome
191 choice, an inability to accept their fate, or destiny. Each step along the journey towards a Narratives of good deaths unwittingly imply that with or without hospice interventions, the outcome does not change. Dying well and achieving a good death, however, includes more than a single narrative told by the hospice team members at team meetings after someone dies. Many events and many conversations that lead up to a death make up a good d eath. A narrative from an interview with a veteran hospice employee will illustrate this point. Jillian: So, I know this is going to be hard, becau se you've been here for years but can you tell me about your most memorable hospice patient? Terry (Counsel or): My most memorable. That would have had to have been probably one of the first patients I ev er had, not with this hospice. She was a lady of, I believe she was like 36 year s old. She had four children. The oldest one was 18 and he was in Montana, in li ke a boot camp, and then she had three other little boys They were like 8, 9, and 11 They were little stair steps She was a drug user She and her oldest son would sniff paint together and she had had a hard, hard life The state was involved There wer e a lot of agencies involved with her Sh e was Hispanic, and in that area there were a lot of Hispanic people with a lot of family members, so the family members really helped raise these little boys, because she was so into drugs She became terminal and sh e had no plans for these kids, for where they were going to go Her sister really couldn't take them Her mother really didn't want to raise three little boys, because they were a handful
192 She woke up one day and told her mom h God at 8:30 The interesting thing was that he r husband had died at 8:30 years earlier. Well, she didn't want to die at home She wanted to die at the hospital So, when her mom called we said get her to the hospital That's a red flag We got her to th e hospital and we stayed all day Me and another social worker went around town and got, it was a small little town, a couple thousand dollars got all of this food to be donated, because we didn't know how long she was going to be there and these people w ere very, very poor We got all these different restaurants to donate food at different times, so the family could stay there (at the hospital) and it was really cool I was so young The kids were there and we tried to get her to sign We had an attorney in there and we tried to get her to sign paperwork for the kids to go with the ir grand mother and she was too ill We couldn't do this In the mean time, the morticians that were going to take care of her, they had become involved with her, because she st arted going to t heir church and they were discussing whether or not they would a dopt these children because they didn't have any children of their own and couldn't have So, all this was going on the whole entire day There were many, many family members i n and out, in and out, and I worked with the kids and the kids were right there with her and everything I finally went home about 5:30 and everybody kind of just left We were exhausted emotionally I got a call at 9:30 She had just died The grandmothe r told me that t he youngest little boy wanted to go home Grandma took him home to get him, I don't know Whatever Something .
193 Get me back to the hospital She took him back The boys w here there with their aunt. All the family members and their friends had left The only people in that room were her sister and those three little boys om had stepped out to go to the bathroom And the boys told me she sat up in bed, she lo oked around, and she smiled and laid down and died . What's the deal with t he time Her husband had been killed in a drug interaction and he was buried in California Jillian: So, it really was 8:30. Terry: It really was 8:30 Just before she died, the funeral people, the funeral It was like about the same time that they had decided we will adopt these three little boys It So they stayed with the funeral directors They would go back and forth from grandma's to the funeral director They had this beautiful home and everything After the patient died, the family asked me to take the boys to the funeral home to see their mom, and but nobody had a car So, I took them and you just kind of let things go That's when I learned you just let things happen the way they should be, because I tho want to do this This is going to and it was so cool They came up and it was just her laying in the coffin, and they tied friendship bracelets on her and they touched her and they talked about her and then they would take off and they'd g o do something and then
194 then the oldest son, he was on his way from Montana on a bus That was the only way they could get him here H e got into town . Jillian: I don't want to interrupt you, but I have to ask You said, this is when you lea rned you just had to let things go and you also said that you didn't want to do it Can letting go meaning you had to just let things happen the way they were going to happen? You couldn't intervene? Terry: Yeah It was just kind of like t he family should be doing this instead of me just taking these little kid s because they would always have the family and they wouldn't have me after this And now also, it's like how do you explain to kids and how would they react, and even though I was a teacher, it was different and that's when I just thought, You know what? Let's just let them go and whatever questions, I'll answer the best I can and we'll try to get answers for them if need be, and it worked out I didn't tell them, Jillian: Right I see. Terry: They tied things on her and they touched her and everything The oldest boy, I just left him alone I just sat in the back and I just, and then they didn't have a car, so I ended up being like a taxi I took a lot of people to the funeral Jillian: So, it sounds like you were incredibly involved Terry: I was very involved Probably, in all honesty, I wouldn't say too involved, but at that given time and it was a small town. Here there are more reso urces and I probably wouldn't have been a taxi cab and had to dri ve loads of people back and forth,
195 but it was a good learning experience It was something that I will always remember Laura Jillian: So, what was she dying from ? She was 36, you said? Te rry: I think it was breast cancer and had just metastasized everywhere Jillian: She was so young Terry: Yeah Jillian: So, would you say, you said her name was Laura W ould you say she had a good death? Terry: Yes. Jillian: And what made it good? Te rry: I think it was good that we did finally get her comfortable She didn't want to die at home and we were able to get her to the hospital Just the fact that when she died, she died with a smile on her face She looked so peaceful and because she had ha d a really hard, hard life She had spent time in prison She was a heroine addict She had a hard life and she just looked finally at peace for her I don't know how the kids are doing. Jillian: It would be interesting to see how they turned out in spite of all that. Terry: I should Google that funeral home. Jillian: Yeah. Terry: I'd recognize the name and see if they still have the boys or see what happened. Anecdotally, s ome people argue that how people live will dictate how they die, which would s urely influence the possibili ty of dying well. Some scholars (Balducci,
196 2008; Schenck & Roscoe, 2008) contend that dying well includes using narrative and other spiritual tools. Although Laura, the patient in the narrative ab ove, did not appear to narrate her death, she certainly put in place her wishes. Helen and Sonny, on the other hand, used some of these tools, narrating their joys, achievements, disappointments, losses and traumas. Although all patients have access to such tools, not all patients use t he spiritual tools hospice avails them. There are two p rimary reasons patients do not employ these tools: one relates to patients and families perceptions of the role of the chaplain, and the other to professional and disciplinary roles and boundaries. P 1994) support some of these observations, indicating that stories of good deaths shape the event rather than the events shaping the stories. This is logical given that research a bout good deaths usually occurs after the fact, which allows professional caregivers the opportunity to engage in subsequent sensemaking. Hart, Sainsbury, and Short (1998) argue that a (1994) assert that ideologically a good death serves two purposes: Firstly, the occurrence affirms the socially responsible individual who quietly slips away once all that could be done is seen to have been done. Secondly, it benefits hospice in patient and community administrative structures by supporting their philosophies and goals and by facilitating the smooth running of the organizations. The Good Death, therefore, es tablishes a degree of stability within
197 the growing institutions of hospice care by providing precedents relating to normative behaviours. (p. 1504) McNamara et al. (1994) adds that these goals of a good death may constrain creativity and the development of the hospice movement as a whole. The authors, however, neglect to elaborate on the consequences of these constraints, so it is unclear which aspects of hospice care or its social movement remain undeveloped. Hart, Sainsbury, and Short (1998), however, a social control over dying people; their choices are powerfully shaped and controlled to fails t o consider the ways patients exercise autonomy discussed earlier Moreover, Hart assertion denies the aspects of hospice care negotiated by patients and team members. I step back from the arguments of McNamara et al. (1994) and Hart et al. (1998) to contemplate how communication shapes conceptions of a good death in hospice between team members and their patients. I argue that by focusing on how the idea of a good death benefits hospice as an institution, we fail to acknowledge the ways in which an emphasis on a good death prohibits communication about bad deaths. It is natural for an individual, team or organization to want to downplay mistakes, but failing to talk about bad deaths means missed opportunities to improve the commu nication constitutive of care at the end of life. One team member shared a narrative of her most memorable hospice whose indelible mark comes not from his good death, but his bad death.
198 Robin (Chaplain): Well, it it (her most memorable patient) would pr obably be the patient that died, I probably already told you this story, the patient that died I had been seeing him about once a week for probably eight months . And he was in his early 60s and he had lung cancer And he was doing quite well He lived in an apartment that was reduced income for seniors He had a little Chihuahua that was really cute And he had a history of alcohol, and drug abuse, and prison, and motorcycle gang s. And he had reform ed And he and I just really formed a bond He liked for me to come and I spoke very bluntly with him at times, especially, when he was feeling down But he had started going to church with a neighbor and he had had a spiritual experience and he had gotte n baptized He felt like he was S aved, everything was wonderful, he was so happy and he liked to talk about his new life and how great it was any family He had a small connection with his sister that lived someplace els e but she refused to come see him toward the as his illness progressed and he was too ill to go see her He felt bad about that but he had no connection with anybody else So Hospice really became his family I think he was our patient maybe two or thre e years ing well and he was feeling really kind of down And I was a lit tle bit abrupt with him telling him he was afraid he was going to hell s past and he just decided th at maybe he was too bad to get S aved from his minister And there was something on this CD that led be F orgiven for what all he had done And so I tried to help him bu t he
199 You know you You need to replace these with something And so that was like on a Friday and when the n urse went Monday, he was incoherent and very ill and was taken to Baybridge (the facility based hospice under The Coastal Hospice umbrella) And I went to see him the next morning in Baybridge a nd they thought perhaps he was im minent So I went to see him in Baybridge and he was sitting up, completely dressed on the side of the bed, and his nurse and physician came in and nurse practitioner and his physician And they talked to him and I followed them out and I told them he was one of our favorites, that we all really liked him a lot and what was his condition Was he im mi nent? And the doctor said they thought so the night before And so I thought about him all day and I had be en listening He had given me the CD that his minister the one that had bothered him And I had listened to it all weekend so I could hopefully find the right words to help him to feel better about where he was And so I went in the next I decided I w as going to do an a nointing ceremony and anoint his head with oil to see if he could get the same kind of feeling he had when he was And when I went in to Baybridge he was in the process of a bleed out which I d id not realize and the room was covered in vomit and there were pads on the floor I had to just walk through it and nobody was in there with him and I asked him and he sa
200 said, you know, And they said something abo ut an internal hemorrhage with a large emesis an is was vomit So I said, get something And so when I went back down, I told him, you know, that I had an anointing ritual that I wanted to do with him, a little service and that he was gonna feel the same as he did when he was baptized, that all of his sins were going to be forgiven your time comes, I want you to reach out and take the h and of Jesus and just grab it And he reached up and took my hand and died. Jillian: Wow. And I believe that I represented the presence of Jesus to him in that moment So it was a very sacred moment for me, and a sad moment, and a scary moment because there was vomit all over everything and he had vomited his last vomit and then he died So it was kind of messy besides the sacred significance of it And I was really angry at the nurses for leaving him in there alone and leaving him in this mess because it was shift change. And then when I went and told the nurse that I thought he had died, an d I kept and they came and checked him and they put on all sterile gown, gloves, mask, put a glove around their stethoscope his hand with
201 nothing on And she just walked out of the room . And so I had to follow her down the hall And she said, and she just walked away. Jillian : This i s a Hospice nurse? Robin: This is a Hospice nurse at shift change. Jillian: Oh, my goodness Do you have any good feelings lef t about Baybridge ? Robin: I I was very, very angry about it and I realized the conflict for me, my badge said that I worked fo r Coast al Hospice. And I was reacting like a personal friend or family in thinking they had not treated him well and I wanted to raise cane with them I mean I just really wanted to throw a fit about it And yet it was such a sacred moment and it was a per And that was his fear was being alone So I was really conflicted and it took me really weeks I think to sort out all the feelings I ha d about it, you know, the horror of him vomiting and me not knowing what emesis was and nurses only using the word emesis and not realizing it was a bleed out, which is what it was And then feeling it was absolutely perfect the way it occurred for him and yet being angry at the way they had treated both me and him, both me and him And I think the nurse could tell I was upset . I went down to I felt like I needed a chaplain but I had gone in about seven in the So nobody had come in yet so there was nobody there And I called the team area and I said, you know, I said, his name and I
202 wa Jillian: Robin: Yeah So that was my most memorable one and probably, you know, I have others actually but that will probably always be and I was relatively new You know, I think it was it I think it may have been the first time I was actually present when a patient died at Hospice. Jillian: sometimes the most memorable becau se it was the f irst know...But the circumstances around his death certainly make it memorable in and of itself. Robin: Right Yeah I think it would have been memorable any time and that seems to be true because were you there when I did the good death bad death support? I It was interesting because I wanted to talk about it from a on what our feelings are in that moment and n urse s seem to just do their job and clean everything up and go on And so I was wanting to talk about, there had been a big article in a chaplain And it was an interesting, a lot of chaplains have written in and there was a lot of information on it And so I wante d to talk about it for [Team] S upport and I was cautioned that the nurses were going to Jillian: Right Right
203 Robin: And that good death and bad death was only to talk about your feelings that you experienced at this time And the nurses did have a hard time with it and it was the newer nurses that spoke. Jillian: Robin: Uh huh (yes). Jillian Robin: had so many we just But the Jillian: And in fact, s ome of my questions are going to be related to this concept of the that the good death. Robin: I can give you those printouts some of them are quite theological Some of them are a little bit judgmental because we all have those judgments going on but it was But Jillian: Interesting. Robin: it was in their case support and we ended up talking about good ones and we ende d up with some laughter so it was okay the way I envisioned it. Jillian: Right death. Robin: It was a good death.
204 Jillian: have to be alone. Robin: And he was reaching for Jesus and I was that presence for him Jillian: And were there any other things about his death that made it good? Robin: It was you know, he did not suffer a long time I mean he had had the illness for a long time but he was up and dressed the day before, not feeling great And he had given his dog the his nurse had agreed to take his dog, turned out to be temporarily He knew his dog was going to be okay He knew somebody had his dog. Jillian: Were th ere any things about it that made it a bad death? Robin: It felt bad to me because I felt inexperienced I had never gone through anything like this where there were no nurses present, where there was vomit all over everything I mean, it was eight feet aw ay from his be d I mean it covered the room and it And he was done really but by the time I got there, by the time I walked in except for a little bit more that cam e out when he died So for me it was hard to see that and it was hard not to have anybody to comfort me or to talk to. Jillian: Yeah formed list I want to ask just generally what defi nes a good death And I think more, more specifically how do you know patient? Robin: . The good death bad death is for each individual person involved in it And they would label it according to their feelings and emotions . We can guess We
205 e not there to say And I had one lady that had hung on forever and her family was really tired of it She had a 15 year old son And her family was tired of this I mean we could not believe she had lived so long And we had called the Hospice nurse had called her family in from out of state like three times and she w ould come back from the brink . And she and I had spent a lot of time together She went to Baybridge I went down there and she sa id, And she told the physician, and the physician talked to her about sedation to keep her free from pain and it was going to be very soon I mean she just could not breath e any longer And her family, at that point, wante d to all come in from out of state and they were begging her to hang on for a few more days so they could all get there And to me, I thought, oh no . She is ready to go, let her go And when they started coming in, each one was begging her to wait a little bit longer and it seemed absolutely cruel to me but I finally got that from her viewpoint, she probably was thrilled with them asking her to hang on until everybody got there And she was thrilled that they all w anted to be there for her And she was thrilled that they were all telling her they loved her even though she was just hanging on by a fraction of a breath, struggling every moment It probably was a good death for her And I was thinking, just let it be .
206 Jillian: S ld mean for them to die well? hat would be a good death for you ut have you ever asked something that even w as indirect o Robin: Well, we ask them where they want to die Whether they want to be at home or whe ther they want to be at Baybridge. I think the biggest fear most people have I Jillian: So are there other other clues about I guess what I hearing, well let me put it this way on what you know about a get a sense about whether or not the death is good or bad u can have a sense based on would that be true based on what you know about a person? Robin: Jillian: Right. Robin: And what one person might call a good death, somebody else standing there might ca ll it a bad death where I
20 7 had never seen her before, never been involved with her and she was imminent We had Continuous C are in there I think it had been about 10 days and she was moaning and carrying on an d they could not get her to die They just could not believe why she was still living And they had given her lots of pain medication just way, a whole lot And she was still moaning and carrying on. And when I went in and did a meditation for her, she ca lmed down and calmed down and calmed down and calmed down and died And her son in law was there and he thought it was perfect and peaceful But she had been in conflict for over, almost two weeks, trying to die but something was not right for her So what would she call that? Right And maybe it is sometimes left for the people who are surviving to make the choice Like the son thought it was good... Jillian: Robin: he did she wanted somebody who she was younger and . And whether that was what was keeping her in that conflict There was a lot of activity in the home The bed was out in the middle [of the room] and it j ust felt hectic when I walked in there the energy And whether she needed peacefulness and yet the other lady I was talking about that was at Baybridge she just had all this activity in her room and conversations about dying well and good versus bad deaths. First, she notes that team
208 members, especially nurses, do not want to discuss good or bad dea ths because of the emotions they bring up. She also highlights the challenges of helping patients achieve a good death, one of which involves a lack of communication. Robin indicates, as do the other interviewees, that team members ask patient about their desire for their place of intuitive choices on the part of team members. Team members appear to perceive good deaths as events of chance rather than a series of d eliberate actions. It is unclear why hospice team members do not directly ask patients and family members what a good death would mean for them. The absence of explicit communication related to dying well could serve to improve communication among patients and on interdisciplinary teams. Improving Communication on Hospice Teams Communication during team meetings focuses primarily on determining whether a patient is appropriate for hospice based upon Medicare criteria. Nu rses hold the bulk of the responsibi lity for making the case to a team physician that a patient is appropriate. The other four members of a patient s care team have little voice in this process. These other team members might vocalize concerns about the consequences of a patient not receivin g hospice care, but these concerns rarely contribute to substantiating Medicare y and in turn affords them more authority and status. A structure of this sort, however, contradicts the purpose for providing interdisciplinary care (Eisenberg, 2008; Ellingson, 2005). Even if hospice teams, out of medical necessity must keep nurses at t he topic of
209 the team hierarchy, they can improve communication by creating opportunities for all members to participate in developing patient care. Twice during my observations, the team physician asked for those presenting new admissions to offer the in formation as a patient narrative, not just their health status. I support this suggestion, but stress that the team should discuss these narratives There are three t imes when the team members from each of the five disciplines should admission, the second is at the initia l 90 day recertification period (and if appropriate subsequent Narrative Talkbacks (PNT) would provide team members a structured opportunity to Narrativ e Talkbacks would allow all team members to offer suggestions from their professional expertise and through these narratives realize opportunities to provide care from the non Furthermore, team members sh ould physically integrate during team meetings rather than sitting in groups that perpetuate a visual reminder of professional roles. Segregating by area of expertise contributes to a sense of hierarchy among team members. In addition to PNTs, I have thre e recommendations to increase the use of chaplains on the team. First, Coastal Hospice should consider renaming their chaplains to reflect the comprehensive spiritual care they are capable of providing. A title such as Spiritual Care Specialist is less lik ely to carry the bag gage of a term such as chaplain In
210 addition to renaming the chaplain role, nurses and social workers should introduce the idea of receiving spiritual care i n a way that echoes the identified needs of the patient Chaplains should condu ct their own spiritual assessments upon new patient admissions or conduct joint visits with other team members as a way to introduce themselves to patients. Finally, I would also recommend team members ask patients directly about the people and events that would make a good death and limit the need for judgment calls and narrating all deaths as good. Many people live full, meaningful lives while suffering through physical pain ; therefore the notion that a good death or dying with dignity only focuses on th e state of body is problematic. T he goal of the hospice chaplain is much more about the purpose of life and supporting and guiding a person towards their personal journey than it is about With a few changes i n communication impro ve end of life care overall. Improving spiritual care and communication about dying and death also involves improving communication among team members, particularly as it relates to managing patient care. In order to achieve a good death for begin to make connections between how those narratives can influence care. O bserving and listening to patients with life limiting diseases carries numerous ethical and emotional dilemmas. In the next chapter, I will discuss some of the ethical issues that influenced the methodological and personal challenges I faced conducting a r esearch project with Coastal Hospice.
211 Chapter 8 Methodological & Ethical Issues In 20 0 4, I first started thinking about the ethics of conducting research wi th people who are dying as I sat in the hospital room of my mentor, Leah, who was dying of ovar ian cancer. Nick 20 her husband who was familiar with my interests in studying death was incredibly obscene. I was not about to sit there taking fieldnotes politely declined the invitation telling Nick and others, who mentioned the prospect of including this experience in my research, that I needed some critical distance b efore I In retrospect, I realize my desire to be present nce to explore my research interests. Conducting research with and about people who are dying continues to give me pause. Through this experience however, I recognize that I can be present with people who are dying and their loved ones while simultaneousl y conducting research. The lines between empathy and objectivity are blurry, yet the fluidity of those boundaries makes research of this kind possible. With that said, I will address the ways in which I managed the methodological and ethical challenges of conducting research with people who are dying. What I will discuss here 20 Nick is an ethnographer and both Leah and Nick were communication scholars.
212 are those ethical issues and dilemmas not addressed by Institutional Review Boards or Health Insurance Portability and Accountability Act (HIPPA) regulations, such as terminal time (Keeley & Yingling, 2007) member checking, and anticipatory grief among participants and researchers. I will also address the ways in which I believe qualitative methods are the more ethical choice for conducting research in hospice (e.g ., the interperson al qualities) and close with recommendations for improving hospice communication. For some people, a terminal diagnosis or entering a hospice program makes the finite nature of l ife real for the first time in their lives Recognizing that life is limited, people may feel a sense of urgency, and time becomes more preci ous. Keeley and Yingling (2007) refer to this phenomenon as terminal time For a researcher, the con cept of terminal time means asking participants to give their valuable and limited time to pa rticipate in a study Although participating in an ethnographic study appears a passive activity, patients must give their physical and mental energies Furthermore, most research project s that focus on the end of life w ill most likely yield no benefits to participants who will not live long enough to see the results. With this in mind, I never asked individuals who were imminent within 72 hours of dying to participate. W hen I considered my ethical responsibilities to hospice patients, their families a nd loved ones, I could hear the words of my advisor, Carolyn, (Ellis, 2007 p. 24 ). I took this recommendation to heart and put it into practice. For example, whil e visiting the home of a newly admitted hospice patient, I opted to
213 pursue informed consent at a later visit because the patient and his caregiver were very minal cancer diagnosis. I explained the project and they verbally agreed to participate in my study, but I told them they could complete the necessary paperwork at our next visit. This newly admitted hospice patient was capable of giving informed consent at the time of our initial meeting, bu t I did not think it appropri ate to ask for participation given the patient and the caregiver e motional susceptibility to psychological harm. Most often, hos told them about the study and asked for their participation. In fact, I never had a hospice patient or family member refuse to participate or ask to withdraw even though I anticipated such challenges I expected the demands placed on me by the Institutional Review Board to disclose the purpose of my research would turn many people off and possibly cause more trauma than if I withhe ld the rationale of my study. responses surprisingly neutral when I told them that my goal was to understand in which IDT members communicate about spirituality, dying, and death with hospice some unexpected emotions from one participant. S even months into my fieldwork, while I was observing I made a patient I call Billie cry. I met Billie a woman in her 50s, sev eral months earlier while shadowing a Home Health Aid, but I had not seen her since. I found Billie memorable for two reasons. F irst her 32 year old son died less than a year earlier af ter succumbing to can cer the same disease now hastening her life.
214 an impression on me. The house smelled like a combination of ammonia and kitty litter. I remembered thinking during my initial visit that despi te my love of animals, I could no t wai t to wash my hands. The familiar smell of the cats assaulted my senses when I visit Billie for a second time The difference today is that it is the peak of summer and the air is thick with humidity. I mak e every effort to turn off the receptors hindering my ability to give Billie my undivided attention. Normally, a few deep breaths e ffective ly hone my attention, but deep breathing is not advisable under the current cir cumstances, so I develop an impromptu mantra. In an effort to k eep the distraction to a minimum, I also offer to help Billie unwind and sort a tangled mound of yarn sit t ing delicatel y on her blanket covered lap. Robin, the chaplain, starts the conversation slo wly by asking Billie how she feels, seems lackluster yet not tired Robin continues to ask questions at a pace in kee ie replies. certain about the date of her looking up from my baby blue strand of yarn.
215 I say, smiling in recogniti on of the inside joke. I am a surprised that Billie and her husband do not hav e more planned, yet I understand that Billie and mental limitations hinder her ability to do more Furthermore, I have heard many of the team members discuss difficulties moving through the grieving process and manage her own illness. For example, Billie frequently refuses to take a shower when Home Health Aids visit and cannot stay f ocus ed during meetings different. As I stand at the foot of Bi pointing to a statue g as the words come out that Robin does not need my reinforcement. while I was in the hospital. An angel came to visit me and it scared me. I told her to go the interruption irritates her or not his assertion is false. Billie is going to die. I want to tell him to just keep quiet and let his wife process her dying, but I just watch and listen.
216 ight s ks, referring to only prompts a nod. Billie diverts from the topic of the angel and tells us that someone put several hundred dol lars in their mailbox to which her husband replies with a look of confusion nocuous things in minute detail and s ince the conversation between Billie and Robin is now a monologue featuring B Billie returns to the conversation. ? I take this opportunity to bring my yarn duties to a close. I gi ve my normal spiel something I ha ve probably said a hundred times by now with little fanfare description and Billie does not say anything; she just nods. Robin takes over and asks Billie asks for good health for her and her husband and the four of us join hands I come here today with Billie and David Jillian and I ask that you give Billie and David the strength they need as they await David nd results. God yo u know what
217 I open my eyes and we stand in silence with our attentio n on Billie who is the first to speak. ng at a nyone in particular, but my intuition immediately tells me that she is talking about me. My heart and I immediately kneel down to flank her. We both react in t he same way and I think how this is not the first time we have knelt down to console an emotional patient of I can see the tears spilling down initial ly feel bad for making Billie cry, but shock quickly supplants my sympathy I am stunned that my well rehearsed and unmoving description of my study prompted such a reaction. with a simple David says again, in an attempt to comfort his wife. This statement is unhelpful and dishonest and I feel fr ustrated when family members say such things. I wonder how Ro bin will respond because such attempt s by family member s creates constant battle s for hospice team members. Robin says nothing and her quie t reminds me that there are times when silence is the best and only response. Rather than try to convince Billie or her husband we are dying is pai
218 mean to ups in recognition of my apology and eventually her body relaxes. Readying our selves to leave again, I thank my hosts and apologize as I let go of her warm doughy hand. Having completed our goodbyes with hugs and handshakes, Robin and I walk through the screen door and free ourselves (and ) into the stagnant, yet fresh ai r reminiscent of a summer in Florida I take a deep b reath, one that cleanses my sinuses and brings a feeling of relief. We are half way across the lawn en route to the chaplain I a m not sure my answer is honest because I real ly do no hat was the first time Billie was real during the entire visit. I was is saying and I know why s he i s glad Billie expressed some genuine e about. Until today, no one has ever batted ay I feel bad, but I really do not and I canno t say why I struggle to come u to the house of the next two patients a husband and wife both in hospice
219 wi visit, recounting the various highpoints and the frustrations. I make a point to tell Robin that I noticed how hard she was working to get Billie to go deeper into explorin g her feelings. The visit with Robin and Bill ie is a perfect example of the constraints terminal time has on patients and their difficulty communicating about spiritual issues and death. The visit also reminds me that my work, despite the lack of emotiona l response I ha ve received from patients in the past, does or at least can have an emotional effect on patients. B illie reminds me that the words end of life and death and dying do hold weight, especially for peop le who have a terminal illness. Yet, Billi should avoid the topics related to the end of life. As the Sunflower te am leader told me during a Hos pice staff and people who research hospice are not only obligated to broach the subject of dying and death, but must also feel prepared to discuss and cope with the emotions that arise There are few guidelines, however, for researchers. Institutional Revi ew Boards (IRB) want researchers to ensure that safeguards are in place, but those guidelines do not make explicit how researchers can or if they should protect against the emotions associated with dying and loss. The feelings people experience when they o r someone they love is dying or dead are impossible to avoid, but the better question to ask is why a researcher should want to avoid them in the first p lace. What I am suggesting is that it is impossible and unrealistic for an IRB to expect a researcher t o prevent fear or
220 anxiety among her participants who are facing loss. But this is indeed the impression IRBs leave with researchers. While I have hospice counseling resources at my disposal should I cause emotional pain to a participant by introducing my research topic, I wonder if counseling is only a temporary or pseudo stopgap measure. This is not to say that hospice counselors are anything but competent, because the truth is that the psychosocial staff I observed were excellent. What I am s uggesting is that emotions for example, tears, sadness, anxiety, and fear are very likely and expected during the dying process. What Billie illustrates to me is that researchers should not try or be expected to prevent feelings if they emerge during the regular cou rse of a visit. These feelings can serve as a basis for generating knowledge and create opportunities for hospice staff to provide care. Billie fears regarding my topic. After the enco unter with Billie, I wonder ed if the description of my study evoked emotions that never surfaced during visits. If so, assisting a patient, detecting harm, or preventing emotional trauma could prove impossible for researchers or hospice staff It worries m e to think tha t after a session with a participant she or he might burst into tears At the same time, the visit with Billie makes me wonder if or how the informed c onsent process made hospice work easier by creating an opening for talking about topics re levant at the end of life. I question if there were times when my mention of communicating about dying, death and spirituality made people more willing to openly talk about their feelings or concerns. I have no wa y of knowing and this question wa s not amon g the goals of this research project, but these questions do challen ge some of our
221 assumptions regarding talk about death and the role of Institutional Review Boards in ensuring participants emotional and physical safety. According to Institutional Review Board criteria, my research methods we re sound and my informed consent includes all of the required components, yet I must make choices in the moment about whether or not it is appropriate to recruit patients for my research project in ways not mentioned by IRBs (Ellis, 2007) At times, I find it is necessary to develop relationships with patients prior to asking them to become research participants. For example, I visited the home of a hospice patient with an eighth grade education. In addition to having a terminal diagnosis himself, his wife recently completed years earlier. I spoke with the patient and his wife about my project in very general terms and asked if I co uld return next week with their nurse. My aim was to give the patient and his wife the opportunity to feel comfortable with my presence in their home, and to work on developing a relationship first, then request their consent. Obtaining informed co nsent is a process (Ellis, 2007) that does not necessarily begin or end once a patient has signed a consent form. I believe ethical rese arch is relational (Ellis, 2007) and therefore it is necessary that I establish and maintain relationships with my participants to the greatest extents possible I could not predi ct if or how relationships would develop with the patients and the family members who agree to participate in my study. Billie could have turned down participating in my research in an effort to suppress e motions that arise because of what I symbolize. Attempts to avoid certain emotions may also explain why patients delay or
222 avoid receiving hospice care all to gether. Each visit from hospice is after all, a reminder that death is near. Moreover, I wonder if there is an additional emotional strain placed on my participants when I develop a close relationship with them. My relationship with Sonny illustrates my concern. Reflections about Friendships with the Dying Sonny looked fo rward to the days when Allison and I visited ; and I looked forward to talking with Sonny every Thursday. During our visits we talked about month, I learned that Sonny went from an infantryman to a cook while serving in the Arm y. I also found out that Sonny did not place his bets at the track based on the h orse, but the jockey. Sonny, a d emocrat, was not shy about sharing his political opinions. He believed anyone could do a better j ob than George W Bush, but he was not sure the country wa s ready for Barack Obama. When Barack Obama won the election in November, I wished I could talk with Sonny. I also kne w that Sonny was unlucky in love, married and divorced twice, and the best time in his life was when he raised his seven children, alone, for 12 years. ife made me think that we were friends. Just as Sonny, Allison and I s tarted to get close, we had to begin say ing goodbye. I expressed my sadness over the thought one day to Allison after leaving his
223 Damn, I thought; t his is risky work, but not for the reasons I carefully anticipated or even the reasons described by the and I realized I had to make a decision about how to manage my emotions, my attachment to Sonny an d his attachment to me. This accelerated trajectory of our relationship and simultaneous anticipatory grieving made me wonder if I have avoided spend ing time talk ing about the politics or horse youth. Maybe I was enj oying myself too much, at the expense of well being My experience. In other words, Allison helped me realize that although I am a researcher, the closer my bond with Sonny the greater the likelihood that I would became another person Sonny must face losing. This is not to say that I was as important to Sonny as his children or his many grandchildren, but that the benefits and risks of my research to Sonny are m ore th an the benefits or risks an IRB application inquires about. Despite the number of hours I have spent in the field and the nu mber of hospice patients I met, I have yet to reconcile how to negotiate this ethical dilemma, except to say that I never take for g ranted any of my participants, especially those who allow me into their lives and hearts. M ember Checking in End of Life Research The inevitable death of my participants presents another ethical predicament not often discussed in the literature on researc her ethics. Many qualitative researchers recommend member checking, or what Lindloff and Taylor (2002) call member validation, which involves giving participants the opportunity to preview and comment on a r he majority of my patients however, will not live long
224 enough to correct or respond to my textual representations of their words and behaviors. The inability to return to the field and validate many of my observations does not give me free reign. In fact, according to Ellis (2007) my ethical responsibilities are more poignant. For these reasons, I w orry about invading participant s privacy by recounting the intimate, sometimes even embarrassing, stories or experiences believe such experiences make a person but I wonder if I should disclose traumas such as sexual abuse, domestic violence or a stigmatized illness such as liver disease or AIDS (see also, Foster, 2006) I question my role as a researcher because I am not simply reporting the facts of a life, but offering interpretations of those lives. As a result of such a dilemma, I am often conflicted about the boundaries between my position as a researcher and a confidant. I have erred on the side of caution and likely make my participants appear more virt uous than they might be The halo affect is a tendency I apply to hospice team members as well because informed consent does not mean that I t means that my participants bestow their trust in me to represent the m as truthfully and respectfully as possible. The potential risks to participants when conducting end of life research may be greater than among other populations. Dying is an emotion laden experience and, as such, dying and grieving people are most vulner able during this time. Despite the lack of emotions I observed in the field, t erminal time (Keeley & Yingling, 2007) compelled me to protect the ethical inte grity of each interaction I had with people I worked with. I feel driven to conduct research abou t communicating about dying, but I am simultaneously reluctant to engage in such works because of the ethical minefield I must
225 navigate. Each time I meet a potential participant, I wonder if it is ethical to ask a person whose life is near its end to parti cipate in a research study whose benefits they will never et involved in my work I worry about my ability to portray my research subjects who have trusted me with thei r stories. And while I may never know the effects of my brief appearance in the lives of patients and their families, I never forget that the opportunity to Moreover, qualitative research, unlike oth er methods allows me to share a which is an honor Concluding Thoughts According to Rosc oe, Egan, and Schonwetter (2004) phase of life has been an important medical and societal goal during the las (p. 1). Improving communication about dying and providing spiritual care (Puchalski, 2006; Rousseau, 2003) is essential to improving health services at the end of life This type of care takes place in numerous settings including hospitals a nd nursing homes. One of the beliefs that propelled my focus on hospice, however, was the notion that this setting and its philosophy created a unique sp ace for dying people and their loved ones to communicate openly about spirituality, dying, and death. P revious research (Foster, 2006) found that volunteers, in their roles as members of the interdisciplinary care team, had almost no conversations with their hospice p atients about dying and death. T he goals of this proj ect consisted of identifying whether o ther members of the team engaged in conversations about these topics. My aim included richly describing those conversations while considering communication regarding spirituality and a good death
226 The ethnographic and interview data suggest that hospice s taff talk with patients about death and dying infrequently and employ narrow conceptions of spirituality that focus on Judeo Christian conceptions of religion. In addition, team members do not explicitly discuss what constitutes a good death for patients a nd assume that it always involves a death free of physical pain where the patient wants to die) The lack of talk about dying and death in general and a good death more specifically, combined with monotheist deaths that are free of physical and spiritual pain. Research (Steinhauser, et al., 2000) suggests that pain and symptom management are extremely important to patients, but completion in their lives. Life review, saying good bye, and resolving unfinished business provide both patients and their families with a n opportunity for human communication that concentrates on what constitutes a good death enables and constrains patient with all the tools need ed to di e well. Although team members likely engage in embedded team work (Ellingson, 2005) meetings and the emphasis on electronic forms of communication such as mobile phon es, e mail, computerized bedside charting with pre selected responses, and text messaging is troubling. Not only do these methods of communication, especially when used alone compromise care, but they perpetuate the hierarchical structures that the use of
227 interdisciplinary teams are supposed to resist (Eisenberg, 2008; Ellingson, 2005). Rather than replicate the medical model s are should focus on how they communicate to help patients and their families achieve good 1992; Eisenberg, 2008), teams could simultaneously improve patient care and team collaboration.
228 E pilogue I have not seen Dr. Paul or thought of his image of a perfect death in months. In the interim, I have seen many sun set s a few dolphins, and I look forward to sipping on a n umbrella drink or two this summer. More than a year after meeting Dr. Paul and contemplating my own vision for the end of my life, I am more kno wledgeable about the dying experience having witnessed the lives and deaths of many people. Through their journeys, my life is fuller, but I sense that I have more to learn and I continue to conjure up and revise an image of my own good death Many people ask what prompted my interests in studying how people communicate about death and so I end this project by returning to the beginning. I always try to boil the tale of my journey down to a few sentences in an effort to avoid recounting my entire life stor y. I usually start in the middle and claim that the HBO television series Six Feet Under deserves the credit for spurring conversations between my mother and me about a myriad of topics related to illness, dying, death, and even spirituality. Back when Six Feet Under was still on the air, I realized that my mother and I were talking about death with relative ease this was a new development. As an eager M.A. student in need of a literature review topic, the conversations with my mother about Six Feet Under prompted me to search the communication literature for research about how people talk about death, but I found little. In the intervening years, more scholars have research ed the topic, but my own questions, curiosities, and interests in the subject persi sted. Early in
229 my graduate career, t he studies I found did little to satiate me because they were uninspired reports of survey results. I have studied the topic ever since hoping to fill those gaps. If I were to start at the beginning and not in the midd le, the truth is that all of the deaths I experienced before graduate school a total of three planted the seeds for my interests The death of my f ormer professor and mentor, Leah, solidified my commitment to this topic. I see Leah as central to my sto ry because her illness marks the moment I had to put into practice a ll of the theory and research I had read. I could no longer just read, talk or write about the necessity of studying this type of communication: I had to begin enacting the principles I es poused. This was simultaneously a blessing and a curse. From the time Leah received a Stage IV ovarian cancer diagnosis, I walked a tightrope between apprentice and master. I often felt as though my graduate school colleagues looked to me for guidance bec ause I was, after all, the girl who studied death I performed the role as best I could, but the reality was that most of what I said about the importance of communicating about death cam e not from research, but was conjecture from my personal opinion. I c My thesis advisor, who shared my interests in the topic of serious illness and dying and death told m academic) to do what many others avoid. I asserted and inserted mys lives by calling and offering my time and emotional support.
230 I had taken classes with Nick when I was an undergraduate student and Leah was my teaching supervisor in graduate school. I also spent time with them at academic conferences and Leah eventually became a de facto mentor to me when I started researching doctoral programs. I would not have considered myself, however, a member of their inner circle. In fact, because Leah and Nick were two fiercely independent and private people, I was taking a risk by offe ring to help them during what most people consider a personal time or a private matter This isolationist attitude is problematic and troubling in many facets of life from domestic violence to addiction to dying. In an attempt to give people their privac y crisis. Illness and dying is just as much a social phenomenon as a private one So rather than giving them their space an d private time, I figured the best course of action was to regularly offer my support and let Leah and Nick turn me down. The process of observing people who are dying has taught me that receiving t expect. A society that encourages independence produces people who do not know how to receive aid much less how to ask for what they need. Eventually, Leah and Nick did take me and another gradu ate student colleague up on our offer s of help. I sat with Leah on nights when Nick taught classes, and picked up groceries when Leah awoke from several days of sleep and asked for organic chicken (Vande Berg & Trujill o, 2008). I sat with Leah again and watched Nick cry at the hospital in the days before she died. I think my presence in their lives helped, but I failed to help Leah in one way. In my attempt to help her, I did not
231 allow her the opportunity to help me. I deprived her of the chance to carry out her role as my graduate school mentor when I neglected to ask her for letters of recommendation for my doctoral program applications. I thought such a request too burdensome and selfish and it was, but not in the ways I anticipated. Just as I allowed space for Leah and Nick to turn down my offers of assistance, I should have done the same thing with opportunities for them to assist me. Despite my best intentions, I did Leah no favors with my feeble attempt at protecting her. A life limiting illness does not mean that a person no longer has something to offer bec 185). I failed then, but h ere is the thing about bearing witness to a d ying: you have the opportunity to do it better each time I know I can better serve people who are sick an d dying thanks to my experience with Leah I use the wor d better deliberately, but not because I or anyone else can perfect such communication, but because I believe that each time we are with a person who is sick, we are more at ease. The comfort means au thenticity, more openness and less stress. My development, however, is also the outcome of letting go of past fears. The death of my cousin (when he was seven and I was five) in a car accident remains a mystery to me, but the memories I have conjure up i mages of fright. A few years later, when I could better understand the gravity of illness and death, I was afraid to see my aunt when she lay in a hospital dying of cancer, so I avoided her. I was scared and had nightmares after my maternal grandfather die d unexpectedly, but when my friend Leah was dying, I made a much greater effort to push through feelings of uncertainty and fear.
232 I took some personal risks and I feel honored and proud to have been invited to O b serving hospice patients interact with the members of the ir care team added new layers of understanding to my experience with Leah, but my time with her also informed how I communicate d with others. Despite, or maybe because of my time with hospice I stil l have some fears, but I recognize that tho se worries stem from uncertainties about what I might see and not what I might say when I enter the space of a person who is very ill or dying. After many months shadowing team members and visiting dying people in their homes, I noticed that once I laid eyes on the patient my anxiety dissipated and my interactions with patients and caregivers felt comfortable rather than stressful. My concerns about what a person might look like as their bodies deteriorated a re m inor and my interests to learn about living and dying always overshadow s my worries My paternal diagnosis of renal failure in January caused by multiple myeloma (a type of bone marrow cancer) prompted me to reflect on how this project has ch anged me not just as a researcher, but also as a person. That is not to say that I see the two as unrelated. In fact, I believe my personal and professional lives are so enmeshed it is difficult at times to distinguish where one begins and the other ends. Moreover, I want my research to influence others as well as me in positive ways. But after hearing that my granddad d y was gravely ill and his prognosis poor, I wondered if I had lost my abi lity to feel compassion for a dyin g person and for the people who l ove them because when my father called to give me the news, I spoke to him with a cool detachment that made me feel sad and scared.
233 I n my own defense I can say that it was late when I got the call about my grandfather and I was exhausted. M y attempt s to derive a deeper layer of meaning from what my dad was telling me about my granddad more analytical and less emotional approach. I was listening and asking questions to help me assess the urgency of the situation. Based on the convers ation I had with my dad and grandmommy, the tones in their voices in particular, prompted me to go visit my granddad without hesitation, which was something I did not do when he was in the Intensive Care Unit eight years ago for 60 days. Contemplating vis iting my gr andfather and saying good bye for the last time pained me. The sting of the tears pooling in my eyes, ho wever, was a relief because it meant I still had feelings. Until that moment, I seriously questioned whether I had damaged my em otional therm ostat through over exposure to dying and death. Once I arrived as his bedside, I knew that I was not broken. The image of my grandfather, a man whose booming baritone voice terri fied me until I was an adult, l ying in a hospital bed with a tube down his thr oat made me want to weep. I held his hand, still enormous despite the ravages of multiple illnesses, and stroked his forehead. I silently prayed his suffering would end before I had to return home to Florida, but it did not. He lingered in the hospital for a month after my visit before dying on his way to receive another futile dialysis treatment. with tubes and dialysis procedures is not what I would want for anyone, but cer tainly not for myself. What I do hope for in my final days is to feel the love of my family, which is
234 something my grandfather did have. I did not say anything special to my granddad the last time I saw him in the hospital, I just kissed him on the forehea d and said goodbye. I realized that my presence said more than the words that I could conjure. All of the deaths I have witnessed help me act much more confidently than ever before I would no t go so far as to say that I know th e right things to do, but I do no t ha v e any hesitation when it comes to making decisions to act. I think doing nothing is far worse and much less helpful than showing up, stepping in, assessing the situation, and just figuring out the next best step. I ha ve only come to this way of being which is a way of acting and a frame of mind through experience. I am better at dying or I should say, at experiencing than I wa s when I started this project. Not only do I think I am more comfortable with dyin g and death, but I do try to live my life more fully. I have not created a well developed list of people or things I want around me when I am dying like Dr. Paul Dolphins and umbrella drinks are probably not at the top of my list and none of those things where important to the hospice patients I met either. The dying people I met, no matter how debilitating or painful their illness their wishes, their dreams, their fears go unheeded 2002, p. 289). The gravity of this type of awareness, the keen knowledge that life if finite and that too few people are listening is the most important lesson I have learned. I hope this wisdom will allow me to embrace an illness with grace and honesty and ultimately conquer death by accepting it as part of life (Balducci, 2008).
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247 Appendix A : Interview Schedul e (Ques tions adapted from Charmaz, 2002 ) 1. Can you tell me our position/title and how long you have been working for hospice? 2. What type of work did you do before coming to hospice? What prompted the change? 3. Tell me about your most memorable hospice patient. 4. Would you say she/he had a good death? a. If yes, what made her/his death good? b. If no, what could have happened differently to provide that person with a good death? i. Can you tell me about a good death that you have been a part of while working for hospice? 5. C an you tell me about a time when you asked a patient or family about what it means to die well? a. What made you decide it was time to talk about dying or a good death? b. Has there been a time when you were reluctant to mention dying with a patient or family member? Can you tell me more about that? c. What do you do when a patient and family do not agree about what makes a good death? 6. What about spirituality? Would you mind telling me your definition of spirituality?
248 a. Is there a difference between your personal definition and how you define spirituality in your work? b. Thinking back on your work at hospice, in what ways, generally, have you incorporated spirituality in your work? c. d. itual believes are different from yours? e. How do you respond to patient and family conflicts related to spirituality? f. How do you define spiritual suffering? i. How do you help patients who are suffering spiritual or are experiencing spiritual pain? g. How often d o hospice patients specifically want to talk with you about death and dying? Spirituality? Can you give me an example? h. Can you tell me about a time when you initiated a conversation about spirituality with a patient or his or her family member? 7. Are there any challenges/issues that make it difficult for you to talk about dying or 8. What metaphor would you use to describe your work as a hospice staff member? 9. In what ways has working with hospice p atients changed you, if at all? 10. Can you tell me how your hospice training prepared you to work with patients and their families? 11. Is there anything that you might not have thought about before that occurred to you during this interview?
About the Author Ji llian is a Native Californian and it was in the Golden State where she developed her in the subject at California State University, Sacramento. When not conducting resea rch about the end of life or teaching Health Communication, Jillian enjoys walking her dogs, practicing yoga, going to the movies, watching spo rts, and drinking red wine.