MIAMI UNIVERSITY The Graduate School
Certificate for Approving the Dissertation
We hereby approve the Dissertation
of
Kimberly K. Ogle
Candidate for the Degree
DOCTOR OF PHILOSOPHY
______Kate B. de Medeiros, PhD, Director
______Jennifer R. Bulanda, PhD, Reader
______C. Lee Harrington, PhD, Reader
______Jennifer M. Kinney, PhD Reader
______Liz Wilson, PhD, Graduate School Representative ABSTRACT
WAITING TO DIE: AN EXPLORATORY QUALITATIVE STUDY OF OLDER ADULTS
by
Kimberly K. Ogle
For the first time in human history, older adults will out number younger people on our planet. By 2060, nearly one-quarter of Americans will be ages 65 and older (Population Reference Bureau, 2015). Being an older adult implies a finite amount of years left in one’s life. Death is inevitable. Today, according to Dr. Joanne Lynn, “people really die by inches rather than by miles” (Webb, p. 52, 1997). Prolonged serious physical illness, physical dependence, and dementia are now common facts of later life (Byock, 2012). Compared to previous centuries and generations, dying is neither necessarily quick nor easy in contemporary times. Over the past twenty years, research has been lacking regarding the feelings and thoughts of the person who is “soon to die” and who knows this as fact. Previous research has mainly been in the realm of nursing care and has focused on comfort or end-of-life decision-making. An untapped population, which has been given an opportunity to contemplate imminent death, is older adults with terminal prognoses. Exploratory qualitative research was used in this study. Thirteen older adults, age 65+ in hospice care were interviewed regarding 1) how they found out they were dying, what that experience was like, to learn they were dying, 2) what it is like to be diagnosed as dying, 3) how the individual foresees dying and 4) what does it mean to die a “good death.” Findings suggest a lack in knowledge about hospice, physician communication skills in talking to patients about end-of-life care, and general conversations about what people consider to be a “good death.” More importantly, it was found that people were living until dying rather than waiting to die. More research needs to be conducted with demographics, socioeconomic state, age ranges and ethnicities and races to have a clearer understanding of what it is like to be dying as an older adult.
WAITING TO DIE: AN EXPLORATORY QUALITATIVE STUDY OF OLDER ADULTS IN HOSPICE CARE
A DISSERTATION
Presented to the Faculty of
Miami University in partial
fulfillment of the requirements
for the degree of
Doctor of Philosophy
Department of Sociology and Gerontology
by
Kimberly K. Ogle
The Graduate School Miami University Oxford, Ohio
2018
Dissertation Director: Kate B. de Medeiros, PhD
©
Kimberly K. Ogle
2018
TABLE OF CONTENTS
List of Tables…………………………………………………………………...... vi List of Appendices……………………………………..…………………...……… vii Dedication………………………………………………………………...………... viii Acknowledgments………………………………………………………..………… ix
Chapter 1: Introduction……………………………………………………...... 1 Background of the Study……………………………………………...... 1 Study Objectives and Specific Aims…………………………………...... 3 Theoretical Framework………………………………………………...... 4 Overview of Exploratory Qualitative Research……………………………. 6 Summary…………………………………………………………………… 6 Chapter 2: Review of the Literature………………………………………………. 7 Bringing Death out of the Shadows………………………………………... 7 The Physician’s Challenge……………………………………………...... 8 Advance Care Planning………………………………………………...... 9 Notable Scholars and Research on Death and Dying……………………… 10 Elisabeth Kubler-Ross……………………………………………... 10 Glaser and Strauss……………………………………………... 12 Awareness contexts………………………………………… 12 Dying trajectories…………………………………………... 13 Pattison………………………………………………………...... 14 Research on Dying…………………………………………………………. 15 SUPPORT……………………………………………………...... 15 Institute of Medicine (IOM)…………………………………...... 17 The Hospice Factor………………………………………………………… 19 What is hospice?...... 20 Criticisms of hospice…………………………………………...... 21 A Good Death……………………………………………………………… 22 What is a Good Death?...... 22 History of a good death………………………………………...... 23 The Life Course Perspective…………………………………………...... 25 Sociohistorical and geographical location…………………………. 26 Timing of lives……………………………………………………... 26 Heterogeneity or variability………………………………………... 27 Linked lives………………………………………………………… 27 Human agency and personal control……………………………….. 27 How the past shapes the future………………………………...... 27
iii Summary…………………………………………………………………… 28 Chapter 3: Research Methodology………………………………………………… 29 Purpose of the Research……………………………………………………. 29 Rationale for Exploratory Qualitative Methods……………………………. 29 Modes of Research…………………………………………………………. 30 Ethnographic interviewing (EI)……………………………………. 30 Field Notes…………………………………………………………. 31 Memos……………………………………………………………... 31 Participant Recruitment……………………………………………………. 32 Human Subjects Consideration…………………………………………….. 33 Accommodations for Participants…………………………………………… 34 Sampling…………………………………………………………………….. 34 Informed Consent…………………………………………………………… 35 Saturation…………………………………………………………………... 36 Interview Strategy………………………………………………………….. 36 Interview guide development………………………………………………. 36 Data collection……………………………………………………… 37 Interview 1…………………………………………………. 37 Interview 2…………………………………………………. 38 Data Analysis……………………………………………………………… 39 Conventional content analysis…………………………………….. 39 Coding…………………………………………………………….. 40 Trustworthiness…………………………………………………… 40 Data interpretation………………………………………………… 41 Conclusion drawing……………………………………………….. 41 Positioning of the Researcher……………………………………………… 42 Chapter 4: Findings………………………………………………………………... 43 Participant Characteristics………………………………………………….. 43 The Interview………………………………………………………………. 44 Findings……………………………………………………………………. 46 Findings regarding impressions of hospice………………………... 45 Findings by aim……………………………………………………………. 46 Specific Aim 1……………………………………………………... 46 How people learned they were dying……………………… 46 What is it like learning your life is ending?………………... 52 Specific Aim 2……………………………………………………... 53 Enjoyment………………………………………………….. 54 Loss………………………………………………………… 54 Planning…………………………………………………….. 55 Detachment/withdrawal……………………………………. 56
iv Holding on………………………………………………. 57 Specific Aim 3……………………………………………...……. 57 The process of dying…………………………………….. 58 Articulating one’sneeds…………………………………. 60 Specific Aim 4…………………………………………………….. 63 Dying when asleep…………………………………………. 64 Sudden death…………………………………………….. 65 Minimal suffering……………………………………….. 65 A bad death………………………………………………. 66 Summary…………………………………………………………………. 68 Chapter 5: Discussion…………………………………………………………… 69 The Life Course Perspective…………………………………………….. 69 Sociohistorical and Geographical Location………………… 69 Timing of Lives……………………………………………… 70 Heterogeneity or Variability……………………………………… 71 Linked Lives………………...……………………………………. 71 Human Agency and personal control………….………………….. 71 Understanding about Hospice ..…………………………………………... 73 Medicalization of Death and Hospice……………………………………… 76 The Need for Better Communication between Clinician and Patients……. 76 The Good Death 79 Dying with Family or Dying Alone…………………………. 80 Elisabeth Kubler-Ross……………..………………………………………. 80 Acceptance………………………………………..……………….. 81 Confirmation…………………………………...... 81 Limitations of the Study………..…………………………………………. 82 Summary and Suggestions for Further Research………………………… 82 References…………………………………………………………………………. 85 Appendices………………………………………………………………………… 97
v LIST OF TABLES
Table 1: Characteristics of Informants Participating in the Study………………………44
vi
LIST OF APPENDICES
Appendix A: Informed Consent Form………………………………………... 94 Appendix B: Informed Consent Form for Sight Impaired……………………. 95 Appendix C: Interview Guide………….…………………………………… 97 Appendix 7: IRB Approval………………………………………………….. 99
vii
DEDICATION
This dissertation is dedicated to my fur family.
Crispin and Honey Bear, I couldn’t have completed this without your unconditional love. You stayed with me in my loft, hour after hour, day after day, simply content to be there. Your fur helped dry my tears and your unabashed joy always inspired me to persevere.
viii
ACKNOWLEDGEMENTS
I first would like to express my whole hearted thanks to Dr. Kate de Mederios, my dissertation chair and advisor. Kate, you are brilliant. Your gerontological knowledge, inquiry and contributions have molded me into a gerontologist. You have guided my skills of critical thinking, researching and writing to a higher standard. These polished skills will define my success in the academy. I will be forever grateful. I couldn’t have asked for a better mentor. I would also like to thank Dr. Jennifer Kinney, Dr. Jennifer Bulanda, Dr. Lee Harrington, and Dr. Liz Wilson. You are an amazing group of women and I am thankful for your support and feedback. I also need to share my gratitude to the administrators, nurses and staff at the facilities I visited. You were so gracious in promoting my project and aiding me in finding potential interviewees. I would especially like to thank Michelle Angel for sharing your immense nursing knowledge regarding end of life treatment and for the sincere care and concern you showed to each of your patients. You truly are an Angel. I must also acknowledge and thank all of the people who so graciously gave of their time and patiently answered my questions. Without them this work would not have happened. I must also thank my friends and family who have supported me throughout this journey. I couldn’t have done this without all of you. I truly am blessed to have an amazing group of friends and family. Beth, I couldn’t have done this without your care and guidance. You always had just the just right words at just the right time. Sarah Hahn, we did this together! Thank you for walking this journey with me. I can’t tell you how much having you in my classes, commiserating over assignments and having my back have meant to me. We certainly laughed and cried our way to earning this degree. Dad, truly I couldn’t have done this without you. Your love and care has meant the world to me. Our morning and evening phone calls always cheered me up. Jan, I have no words to express what you meant to me throughout this process. You walked every step with me. You were my advocate, rock, copy editor, and teacher. You propped me up when I needed it and gave me the confidence to continue forward. I know I can always count on you. Together we can do it all!! Finally, to my beloved family in heaven, Mom, Pat, Dale, and the rest, I know you are all smiling. Thank you all.
ix Chapter 1: Introduction This dissertation is an exploratory study of subjective views of dying by older adults (65+ years) enrolled in hospice. As such, participants have received a terminal prognosis of having six months or less to live. The first chapter of this dissertation presents a background to some of the complex issues facing the expanding population of dying older adults, identifies the study’s specific aims, explains the significance of the issues around dying in later life, and presents an overview of exploratory qualitative methodology and its challenges. Subsequent chapters offer a background of the relevant literature (Chapter 2), a detailed description of the methodology (Chapter 3), and a presentation of study findings (Chapter 4). Chapter 5 concludes with a discussion of the findings, an explanation of the limitations of the study, and suggestions for further research.
Background of the Study Individuals aged 65 and over are an important and growing segment of the United States’ population. Currently people ages 65 and older make up 15% of the total population (U.S. Census Bureau, 2016). According to the Population Reference Bureau, (2016) the number of Americans ages 65 and older is projected to more than double from 46 million today to over 98 million by 2060, and the 65 and older age group’s share of the total population will rise from 15% to nearly 24%. There will be many challenges ahead to meet the needs of this growing older population. In fact, a great deal of research has and will continue to be done on topics such as financing health care, long-term care needs, and issues regarding aging in place. However, not only does the United States face an aging population, but it also faces a dying population. While studies examine costs associated with end-of-life care such as Medicare payments and the importance of having advance care planning conversations, little research is being done on older adults’ subjective experiences of dying. Lynn (1997) has suggested that the social norms of the United States almost completely ignore the life experience of people with serious, chronic illnesses that will end in death. In addition, in the United States death has increasingly become a medical event attributed to the evolution and availability of complex technologies, social perceptions of death and dying, and the organization of the health care system (Meghani & Hinds, 2014). The last few months of an individual’s life is therefore often characterized by frequent hospital admissions, intensive 1 care stays, and difficult transitions between health care facilities and home. As Meghani and Hinds (2014) note, “A large proportion of deaths continue to occur in hospitals with implications for quality of care at the end of life and unsustainable cost to the health care system” (p. 51). For example, according to a recent Kaiser Health News Report (2018), one in three Medicare beneficiaries had surgery in the last year of life and one in ten had surgery in the last week of life. The report continues by saying that, “While surgery is typically lifesaving for younger people, operating on frail, older patients rarely helps them live longer or returns the quality of life they once enjoyed” (p. 3). Unfortunately, the rush of medical decisions doesn’t always allow time to deliberate or consider the patient’s overall health or their goals and values. Dying patients and their caregivers frequently name patient involvement in end-of-life decision making as a core component of a “good death” or “dying well” (Carr & Luth, 2017). Yet, talking about death has remained difficult (Warraich, 2017). For some people death is something that happens to others. Given that dying is the last thing a person will do and death will likely take place in an acute care hospital or nursing home, orchestrated by strangers, it is important to know more about the experiences of people who are dying. Often, the patient has little say in the place in which death happens or its manner. There is a risk that during the course of a person’s dying, procedures and treatments will be performed that are painful, degrading and ultimately futile (O’Mahony, 2016). Trends over time in vital statistics and associated research on factors that tend to increase or decrease the risk of death have laid the foundation for strategies to improve public health and avoid premature deaths. However, death still does come to approximately 2.7 million people each year in the U.S. (United Nations Statistics, 2017). Roughly three-quarters of the 2.7 million deaths in 2016 in the U.S. occurred in older adults age 65 and older (Carr & Luth, 2017). Despite considerable attention focused on the needs of dying patients, little is known about the experience of “knowing” one’s life is about to end. Unfortunately, there is little empirical evidence to inform the understanding of how patients and their families approach this crucial time. What currently is understood comes mostly from hospital-focused studies such as the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), small qualitative studies with younger patients or patients with cancer found in nursing literature, or retrospective proxy accounts of the dying process (Institute of Medicine, 2015). The findings of SUPPORT and the 2015 Institute of Medicine (IOM) report, Dying in America: Improving Quality and Honoring Individual 2 Preferences Near the End of Life, indicate that the United States can do a better job taking care of the older, dying adult. The social institutions of the U.S. could be reshaped so that the end of life is worthy and valid, comfortable and comforting. Some of what needs to be done resides in the realms of public policy and professional education, Medicare reimbursement formulas, measurement of the quality of care, and new sets of skills for professional caregivers (IOM, 2015). However, needed improvements require an understanding of the experience of dying. For that, stories are necessary (Barclay, Momen, Case-Upton, Kuhn & Smith, 2011; Lynn, 1997). A personal narrative about nearing one’s end of life can provide new insight into the thoughts, feelings, regrets and wishes of the dying individual. Hearing from the dying person may change the way American society understands and thinks about dying. Death is also an important topic relative to the field of gerontology. Research in gerontology includes personal transitions and trajectories; how one moves from one important social role to another, such as marriage, parenthood, retirement and widowhood. Death is another of these transitions. Despite dying, death and bereavement being an inextricable part of human existence, there is still a societal reluctance to recognize the experience of nearing one’s own death. If indeed gerontologists are to utilize the life course perspective to understand the interaction of time, context and process with individuals (Elder, 1974), should this not also include the experience of nearing one’s own deaths? As Robert Butler (2008) noted, longevity is desirable only if accompanied by an acceptable quality of life. Families and nursing homes will have to learn how to make good on the promise of a “good old age,” even with illness and disability. Therefore, further knowledge gained from this study will inform gerontologists about how older adults approach the end of their lives and will lead to new dialogue in the study of gerontology.
Study Objectives and Specific Aims. The overall goal of this research is to explore and identify themes about death and dying from dying individuals. Specifically, the study examines older adults (age 65 and above) who have been identified by a physician as having six months or less to live and are enrolled in a hospice program. To be eligible to receive hospice care, a person must be certified as being terminally ill by a physician and have a prognosis of six months or less to live if the disease runs its normal course (National Hospice and Palliative Care Organization, 2017). Knowing when 3 someone is at the end of life can be difficult to determine. Burn-Klug (2004) coined the term the ambiguous dying syndrome, meaning that death occurs with little recognition that the end of life is near. Bern-Klug, Gessert and Forbes (2001) state, “many people die without ever being considered dying or at the end of life” (p. 39). Because dying can be so difficult to predict, the participants for this study were selected from hospice care organizations. To be considered a patient for hospice care, a prognosis of six months to live or less must be certified by a physician. In other words, if the person’s illness follows its normal course, the person would be expected to die within six months. Therefore, recruiting through hospice organizations proved to be a good admission criterion for this research. Additionally, the focus for this study is on people age 65 and over, the age at which many formally identify the start of old age based on eligibility criteria for social programs (WHO, 2017). More importantly the vast majority of people who die each year are people age 65 and over and are therefore the focus of this study although there is a need for people of all ages to discuss dying, no longer keeping death a taboo and forbidden subject. The specific aims of this study are: Specific Aim 1: To examine when and how the individual came to know she/he was dying and to explore how she/he processed that knowledge. In other words, what was it like for people to learn their life was ending? Specific Aim 2: To examine the experience of waiting to die as an older adult. This aim addresses the question: What is it like to be diagnosed as dying, yet still have time to contemplate one’s own death? Specific Aim 3: To understand how the dying individual foresees the dying process for her or himself and how she/he might articulate their needs as she/he prepares to die. This aim asks: What do people foresee or expect about their own process of dying? Specific Aim 4: To explore what it means to the dying individual to “die a good death.” This aim considers and inquires what dying a “good death” means to those older individuals in hospice care.
Theoretical Framework The gerontological theory that best informs the specific aims of this study is the life course perspective. Focusing on the dynamic processes between people and their social worlds (Elder, 1995; George, 1993) the life course approach provides a way of examining the interplay 4 of life stages in relationship to life outcomes (Coyle, Kramer and Mutchler, 2014). The four themes of the life course perspective (the inter play of human lives and historical times, the timing of lives, linked or interdependent lives and human agency in choice making (Elder, 1994)) can impact the decisions a person makes at the end of their life. According to Elder (1994), differences in birth year expose individuals to different historical worlds, giving a person different life options and limitations. For example, prior to World War II women rarely worked outside of the home and when they did their career options were limited. Because of this many women relied on men and marriage for financial security and often times looked to men or others in authority to help them make decisions. Likewise, men born in this cohort also were taught not to “rock the boat” or question authority. This can play a part in decision making for older adults at the end of their lives. Older adults often will acquiesce to the person of authority, the doctor, when it comes time to make health care decision. Another important theme of the life course perspective is the timing of life events. This refers to the “social timing of the incidence, duration, and sequence of roles and to relevant expectations and beliefs based on age” (Elder, 1994, p. 6). The idea of “on time” or “off time” societal events in a person’s life can be understood by looking at the age in which a person may die. For example, a person dying at age 30 would be considered dying “off time.” However, a person dying in their 80s or 90s would be considered dying “on time” according to social norms. It is reasonable to expect that the topic of older people dying has not been a major area of focus since the norm of being “on time” suggests that death is expected and, indirectly, that the older person has had time to prepare for death. However, we don’t know for certain whether this is accurate, what views older people may have about their own dying in general, and how they feel about dying when they have been told that they are likely to die within six months. The life course perspective gives the best understanding to the decisions and understandings of the individuals who participated in this project as they approach the end of their lives. The ideas of the interconnectedness of historical times and individual lives, societal timing, linked lives and human agency all effect who a person is as they age. Thus, the life course perspective significantly enhances the researcher’s ability to understand the influences in a person’s life.
5 Overview of Exploratory Qualitative Research This project utilized qualitative data gathered through interviews with a purposive sample of older adults, aged 65 and above, enrolled in hospice care. It was determined that direct interviews were the most sensitive and direct methods to gain the information sought for this research. The strength of this method was that it offered depth and detail to create a constructive understanding of the end-of-life experiences of dying individuals. This exploratory, descriptive method provided a straightforward look at the issues, which was required due to the lack of information on the subject (Lambert and Lambert, 2013). It is important to note that there are a number of challenges in any qualitative research. The first is finding appropriate participants. Secondly, sampling bias may occur which could potentially mask the views by others who were not willing to participate in the study or whose characteristics differ from the enrolled participants. Finally, the preconceived notions of the researcher may influence findings (Malterud, 2001). A full discussion of the research methods is discussed in Chapter 3 including how these challenges were addressed.
Summary Being old, sick and dying in the United States is a growing phenomenon. Much research has been done regarding the attitudes, needs and wants of younger patients dying of cancer or other life limiting disease. Little research had been done on older adults dying of chronic co- morbidities. The over-arching aim of this research was therefore to examine and gain understanding of dying as an older adult.
6 Chapter 2: Review of the Literature
This chapter provides a background and summary of some of the important literature and research related to the dying individual. Additionally, this chapter provides a synopsis of key scholars who have been instrumental in delivering insight into the dying person as well as an explanation and history of hospice care in the United States. Finally, the life course perspective, on which the research is grounded, is briefly described at the end of the chapter. There is a rich history of literature discussing death and dying from many different aspects. There is also a large body of work on the “good death”; on grief, bereavement and mourning; and on the impact of death on the surviving individuals. What is lacking in the literature, however, are the voices of dying individuals – specifically people age 65 and over -- about their experience of dying. What follows is a brief synopsis of the few key scholarly works which featured interviews with dying individuals. The goal of this research is to add to the sparse knowledge available from the dying, older person.
Bringing Death out of the Shadows Elisabeth Kubler-Ross, perhaps the most well known authority on dying, once suggested, “If you really want to … experience what it is like to have a very limited time to live, sit with dying patients and listen to them (1970, p. 157). It is worth noting that Kubler–Ross’s work entailed talking with younger patients, typically diagnosed with some form of cancer or other terminal illness. In contrast, most older adults today are going to experience the burden of disability, dementia, and multiple chronic illnesses for months to years before dying. This begs the question: What does it mean to be an older adult, living with chronic co-morbidities at the end-of-life? Writing about death in the United States some years ago, the late historian Arnold Toynbee observed, “Death is un-American” (Rumford, 1973, p. 1). The care of dying patients as a problem in the United States cannot be understood without an understanding of the culture of the “problem of death.” Evelyn Waugh’s 1948 The Loved One, a satirical novel about the funeral business in Los Angeles, and Jessica Mitford’s (1963; 1996) The American Way of Death were both scathing reviews of the American funeral industry, and its promotion of beautifying the dead for public display. Mitford not only blasted the funeral industry for taking advantage of grieving families, but also pointing out that dying was not allowed in American society. 7 According to Mitford, “by making the dead look alive and not ravaged by disease, people could reject the notion of death” (1963, p.32). Daniel Callahan, noted bioethics scholar, wrote: “America seems unusual among developed countries in its passion to conquer death, often acting as if death were simply one more disease to overcome” (Callahan, 1995, p. 226). He argued that medicine in the United States has been influenced by this belief -- that death can be conquered -- and in doing so has abandoned the dying. The use of technology, a fear of litigation and a fundamental uncertainty about how to talk to and deal with death help to explain why the care of dying patients has been so difficult. Even today, some 40 years after Toynbee’s observation, death is still in the shadows of American culture and medicine.
The Physician’s Challenge One challenge with bringing death into the open rests with physicians. Unfortunately, many physicians are not taught how to have conversations with their dying patients. Ira Byock (2011), director of palliative medicine at Dartmouth Medical School has expressed the need for medical school curriculum changes to include end-of-life issues. For example, many medical students lack training on how to deliver bad news such as when cancer has spread, or a family member has died (Cowgill, 2018). Instead the medical training focus is on curative measures even though the physicians will be the ones providing end-of-life care to patients. Author and physician Robert Cowgill’s work further illustrates this point. During research for his book, Soul Service: A Hospice Guide to the Emotional and Spiritual Care for the Dying, Cowgill (2018) contacted 122 medical schools and 34 of U.S. News and World Report’s top 50 nursing schools to obtain information regarding coursework and training in the areas of palliative care and emotional support for the dying. Only eight of the medical schools and none of the nursing schools he contacted had mandatory courses in those areas; only 16 schools had elective coursework in end-of-life care. While Cowgill’s statistics seem bleak, more health care organizations are training physicians to talk to seriously ill patients regarding their goals, values and prognoses (Kaiser Health News, 2018), but that doesn’t make these conversations easy. It is a hard discussion even if the physician is a good communicator (Abba, Horton & Lloyd-Williams, 2015).
8 Advance Care Planning One step taken by the federal government to help alleviate difficult discussions and decisions families or physicians may face was the Patient Self-Determination Act of 1990. This act requires facilities, hospitals and nursing homes that participate in Medicare or Medicaid to offer patients information about advance directives (Carr, 2012). However, the only requirement of the act is that facilities ask the question, “Do you have an advance directive?” If the answer is no, the facility is required to provide information. No one is required to sit down with a patient or resident to have a conversation about what is involved in making end of life decisions (Gillick, 2004). Advance directives are widely viewed as the cornerstone of advance planning. They encompass both instructions about what kind of care should be provided (i.e., living wills) and who should make decisions if the patient cannot do so (i.e., proxy designations). Though helpful as a means to express a general philosophy of end-of-life care, living wills are often vague, using phrases such as “heroic measures,” and most apply only to “terminally ill” patients facing “imminent death.” Some living wills provide concrete instructions for care in a variety of clinical situations, such as the use of feeding tubes or ventilators in the event of permanent unconsciousness. Even detailed instructional directives, however, cannot describe all the situations in which patients may find themselves. Their precision also makes them inflexible: whether or not a given procedure is acceptable may depend on what the intervention is expected to achieve and on what alternatives are available (Carr & Luth, 2017). Much information and discussion should go into advance care planning (ACP). Ideally, a person would sit down with family members or surrogate and discuss decisions about the care a person would want to receive if they were unable to speak for themselves. ACP includes: 1) getting information on the types of life-sustaining treatments that are available; 2) deciding what types of treatment one would or would not want should a person be diagnosed with a life limiting illness; 3) sharing personal values with your loved ones; 4) Completing a written document that state the types of treatment a person would or would not want if they were unable to speak for themselves (National Hospice and Palliative Care Organization, 2018). Despite the push for ACP and the development of resources such as the grassroots effort of The Conversation Project, a national initiative that provides tools, guidance and resources for people to talk about their wishes for end-of-life care, talking about dying is still uncomfortable for most people and physicians. The Conversation Project notes that 90% of people agree that 9 discussing end-of-life issues with loved ones is important. However, less than 27% have actually had that conversation (Institute for Healthcare Improvement (IHI), 2017b). Additionally, a 2012 study conducted by the California Health Care Foundation found that when asked, 80% of respondents said that they would like to have a conversation with their physician about end-of- life care. Shockingly only 7% have had this discussion (IHI, 2017b). There is sometimes confusion over who should initiate the discussion about end-of-life care with health care providers, with some patients expecting doctors to initiate the topic and some physicians reluctant to risk upsetting a patient by raising the issues. In Being Mortal, physician Atul Gawande (2014) argues for the value in discussing quality life instead of maximizing quantity. He advocates for physicians to change the discussion by changing the questions, asking, “What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?” (Gawande, 2014, p. 259) While these are arguably important questions to ask patients to understand their needs and wants at the end of their lives, physicians are often described as unwilling to ask these important questions (Kaiser Family Foundation, 2015).
Notable Scholars and Research on Death and Dying Although talking about dying is clearly problematic for many, there is a history of approaches to talking to people about dying, which is worth noting. Following are details of important scholars and research that have provided the early foundations for conversations surrounding end of life. Elisabeth Kubler-Ross. In 1969, when Kubler-Ross first published On Death and Dying, it was ground breaking work. For the first time, someone was not only talking to people who were dying, she was encouraging others – family members, nurses and physicians – to do so as well. When Kubler-Ross came to the United States to study medicine, she was disturbed by the treatment of the dying and found nothing in the medical school curriculum at the time that addressed death and dying. Filling in for a colleague, Kubler- Ross brought a 16-year old girl who was dying from leukemia into the classroom and told the students to ask the girl any questions they wanted (Walter, 1994). Thus, began her research on
10 dying individuals and the development of her (now famous) five stages of grief: denial, anger, bargaining, depression and acceptance. Kubler-Ross was a charismatic woman who spoke of “natural death” at a time when there was an increased dislike for the technological care being seen in hospitals (Corr, 1993). Beginning in the late 1950s, a great deal of improvement was seen in technology used by physician and in hospitals. According to health care historian Rosemary Stevens (1996), the hospital in the United States in the 1960s was easily compared with industrial corporations. The innovations of this time included automatic X-ray processors, plastic bags for blood, auto- analyzers for the laboratory, and identification bracelets for patients. However, patient care was seen as sterile and impersonal. Most patients died alone in hospitals, physicians ignored dying patients, and adequate pain medicine was underutilized. Kubler-Ross was different; she actually talked to patients about their thoughts and feelings. She proposed more person-centered care for the patient and more attentive treatment for the dying patient (Newman, 2004). It was Kubler-Ross’ insights from dying individuals that led to a large body of literature in the area of grief and bereavement. However, even though Kubler-Ross encouraged dialogue about dying, little changed regarding conversations about death and dying between family members and dying individuals or physicians and patients. Talking about death was still thought to be morbid or unhealthy. It should be noted that little is known about Kubler-Ross’ research subjects other than they all were diagnosed with a terminal illness. She did not report age, gender, ethnicity or class composition of those she interviewed, nor did she report the number of people she interviewed. Many have suggested, however, that it seemed likely that most of those she interviewed were experiencing pre-mature deaths or death before reaching old age (Walter, 1994). If so, this represents a significant oversight. Excluding older persons from the study of death, dying and bereavement leaves room for further exploration on how people who have presumably had a longer time to come to terms with dying actually feel about being at the end of their life. One might assume that if a person has had a long life, they may not feel angry at dying. In fact, a person who has outlived their spouse, other family members and friends may in fact welcome death. An older person my not experience any of Kubler-Ross’ five stages of grief. It should be noted that there has been a great deal of follow up and research regarding Kubler-Ross’ stages of grief. As such, Kubler-Ross’ work has widely been discounted in the area of grief and bereavement as unsubstantiated and not indicative of how people grieve. 11 Kubler-Ross herself stated that she never intended it as a stage theory or having anything to do with grief. Instead, she explained she was just reporting what she found in the dying individuals she had interviewed.
Glaser and Strauss. Other important work on death and dying includes sociologist Barney Glaser and Anselm Strauss (1965, 1969) who studied communication surrounding hospitalized dying individuals including the dying individuals’ knowledge of their terminal diagnosis (i.e., awareness contexts) and dying trajectories. Each is described briefly below followed by a discussion of the implications of work in these two areas. Awareness contexts. In the mid-sixties, Glaser and Strauss recognized that most Americans were dying inside hospitals. However, their research focus was on the interaction between hospital staff and patients rather than on the patients themselves (Glaser & Strauss, 1965). It was Glaser & Strauss’ desire to understand the context of action and communication rather than “attitudes toward death” (1965, p. viii). Glaser and Strauss completed intensive fieldwork at six hospitals in the San Francisco Bay area, which involved a combination of interviews and observations. They chose a number of different medical services at each hospital to gain the maximum exposure to different aspects of dying – “locales where death was sometimes speedy, sometimes slow; sometimes expected, sometimes unexpected; sometimes anticipated by the patient, sometimes unanticipated; and so on” (1965, p. viii). They identified four types of “awareness contexts” or what each person (patient, family, physician and staff) knows of the patient’s medical status, that had profound consequences for the experiences of the dying patients: closed awareness, where staff kept patients ignorant of their impending death; suspicion awareness,” where patients suspected that they were dying and tried to get staff and relatives to confirm this suspicion; mutual pretense, where all parties knew that the patient was dying but did not acknowledge this, pretending that ‘everything was normal’; open awareness, where all parties knew about and acknowledged that the patient was dying and were therefore able to talk about dying” (Field & Copp, 1999, p. 461) Dying trajectories. In their second book, Time for Dying, Glaser and Strauss (1968) focused on the chronological organization of death within the hospital. In contrast to the course of an illness, the trajectory of an illness refers not only to the physical unfolding of a disease, but to the total organization of work done over the course of the disease (Wiener & Dodd, 1993). They noted that most deaths followed certain expected trajectories. Kenneth Doka (2013) 12 described “Badly timed” deaths as those “where the death did not follow expected trajectories, often created difficulties for the staff and families” (p. 15). These “badly timed” deaths were found to have impact on the medical staff, often causing them to question what they did wrong and family members suddenly losing a loved one whom they had expected to live months, if not years (Penrod, Hupcey, Babeym & Loeb, 2013). Dying trajectories are important for planning palliative services and end-of-life care. Glaser and Strauss (1966, 1968, 1970) first introduced the dying trajectories while observing patients and physicians communication styles. It has been suggested that four distinct trajectories, each differing in length and scope of functional decline, appear to account for most person’s last phases of life (Gott, Barnes, et al, 2007). These trajectories are described as follows: (1) sudden death with little prior warning and minimal interaction with health services before death; (2) death following a distinct terminal phase of illness occurring after a long period of high functioning and rapid decline, most characteristic of cancer patients; (3) death from organ failure (including COPD and heart failure), where a gradual decline in functional status occurs interspersed with acute periods of deterioration which could cause death; and (4) death following progressive deterioration accompanying frailty, stroke or dementia (Lynn & Adamson, 2003). Implications of Glaser and Strauss’ work. A clear shift has been seen in the attitudes and actions relating to the disclosure of a person’s dying status since the 1960s. In just a few years dramatic change occurred in the number of physicians no longer withholding terminal status from a person who was dying (Field & Copp, 1999). In a survey of physicians in the United States in 1961, 88% of respondents said they would not tell cancer patient’s their terminal diagnosis, whereas in 1979, 98% of respondents of the same cohort responded they would now tell a patient of their terminal illness (1999). Glaser and Strauss’s (1965) work has been instrumental in shaping the early changes in attitudes of health care professionals toward the dying, particularly in how physicians and staff relate and communicate to patients facing terminal illness (Field & Copp, 2002). Today, open awareness of dying is now accepted and full disclosure of prognosis and diagnosis is seen as an important element of care for patients who are dying. By allowing for more dialogue between patients, families and physicians, better treatment choices could be made, patients could be better positioned to put their affairs in order, and could begin the grieving process of her/his own death (Seal, et al., 1997).
13 In addition, the idea of dying trajectories has been applied to numerous illnesses, including stroke, end-stage renal disease, cancer, heart failure and many others. The model of trajectories has also been used by family caregivers and can provide significant contributions to end-of-life care and managing and shaping the experience of dying (Penrod, Hupcey, Baney, & Loeb, 2013). Finally, the use of trajectories has contributed to the development of nursing models for dying patients (Corbin & Strauss, 1991). “Dying takes time, and …health professionals, families and dying patients use many strategies to manage and shape the dying course” (1991, p. 157). Glaser and Strauss’ work contributed to better care and understanding of the dying patient. Pattison. Building on Glaser and Strauss’ work was E. Mansell Pattison. Much of Pattison’s (1977) work was dedicated to demonstrating the dying process as complex, multilayer and individualized. He used the “living-dying interval” as a means to describe the way the dying individual cope with her/his own death. Pattison did not view dying as a pathological problem that should be treated. Rather, he viewed “dying as a piece of normal living” (1977, p.316). Pattison stated, “Each phase of the dying process calls for a different style of response from us” (1977, p.319). He also noted that physicians and hospital staff were ill equipped to cope with the process of dying, and that appropriate attention was not given to the care of the dying in professional curricula. In addition, he acknowledged that because dying is such an emotional issue for all, the dying person often falls between the cracks and does not receive the care or comfort needed. He stated that in dismissing death as “taboo,” likewise we dismiss the dying person (1977). One of the strong points of Pattison’s work is that he takes into account the need to adapt care for dying according to the pace, feelings and reactions of the person. Like Kuber-Ross, Pattison’s work focused on younger people who had a specific illness. Pattison (1977) divides his book The Experience of Dying into sections corresponding to the life span: early childhood, middle childhood, adolescence, young adults, middle age and the elderly. Each section has numerous chapters with the exception of the “elderly” section. Only two chapters are dedicated to older adults and one of those chapters is about older adults and euthanasia. Again, the life, thoughts and needs of the older dying person are not considered.
14 Research on Dying In addition to Kubler-Ross, Glaser and Strauss and Pattison, there were important research projects that also shed light on the dying population. What follows is a synopsis of these key investigations. Research on how older people experience the process of dying is limited, and studies on patients’ preferences at the end of live are few. There have been studies in which patients and their families were asked to identify and describe elements of quality of end of life care. In a Canadian study of 126 participants from three groups of patients (dialysis patients, HIV infection and residents in a long-term care facility), the participants identified five areas of quality end-of- life care: adequate pain and symptom management; avoiding prolonged dying; having a sense of control; not be burden; and strengthening relationships with loved ones (Jones, 2002). Most of the studies have focused on the experience of dying in hospitals with people who were diagnosed with terminal cancer. SUPPORT. Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment (SUPPORT). Beginning in 1989, there was growing interest by the medical community to reexamine how death and dying were approached and how people were cared for at the end of their lives. Critics and reformers argued that medical technology was obscuring compassion for dying people approaching death (Institute of Medicine, 1997). SUPPORT, funded by the Robert Wood Johnson Foundation, was designed to have a better understanding of dying in American hospitals. A total of 9,000 patients suffering from life-threatening illnesses were enrolled from five United States teaching hospitals over a four-year period (Moskowitz & Nelson, 1995). During Phase I of SUPPORT, researchers collected data both by examining medical records and conducting interviews. Information was gathered from each patient’s chart regarding the patient’s physiological condition with special attention given to discussions and decisions about life sustaining treatments (Curtin, 1996). The research team also conducted some interviews with patients and family members or surrogates who would make treatment decisions for the patient. These interviews focused on preferences concerning life sustaining treatment and pain management. The researchers asked the patients and family members how satisfied they were with the medical care that was provided. This included the frequency, severity, and duration of the patient’s pain and if further discussions were needed regarding life sustaining plans (Connors, Dawson & Desbiens, 1995). 15 From this data the SUPPORT team tried to identify the aspects of the patient’s hospital stay that would most objectively speak to the quality of the experience. They identified five categories: (1) whether the patient had a written “do not resuscitate” (DNR) order and when was it signed; (2) whether the physician knew of the patient’s preference for end-of-life treatments; (3) the number of days the patient spent in an intensive care unit or on a ventilator; (4) the patient’s pain level; and (5) the patient’s hospital bill. The conclusion of Phase I of the SUPORT study was that the quality of the hospital stay of too many seriously ill, dying patients was unsatisfactory (Moskowitz & Nelson, 1995). Phase II of SUPPORT addressed the problems identified in Phase I. The idea was to develop an intervention that would improve the quality of care for patients and help the flow of information between the patient, their families and the physicians. The intervention had three components: (1) doctors were given brief written reports regarding the patients’ probability of surviving up to six months and the probability of surviving cardiopulmonary resuscitation; (2) doctors were provided with reports on the patients’ advanced directives or lack of advanced directives; and (3) specially trained nurse facilitators were assigned and were responsible for initiating and maintaining communication among patients, their surrogates, and the physicians. The intervention was tested by means of a two-year controlled clinical trial (Moskowitz and Nelson, 1995). When the Phase II results were compiled, the results were stunning. The five main categories identified in Phase I had not been affected. There was no significant change in the number of DNR orders, in the physician/patient agreement about DNR orders, the number of days spend in ICU or on a ventilator, in the prevalence of pain, or the cost of the hospital stay. More importantly, the intervention had not altered patients’ preferences regarding resuscitation or the levels of communication with physicians nor had it affected the levels of satisfaction with the medical care reported by the patient or the family (Curtin, 1996). One glaring statistic was that even though physicians were aware of a patient’s wishes regarding life sustaining treatment, only 15% actually discussed this information with the patient or family member (Moskowitz & Nelson, 1995). Despite its failure to change some of the worst features of death in hospitals -- pain, ventilators, cardiopulmonary resuscitation and coma -- the SUPPORT study has spawned hundreds of articles regarding the care and treatment for seriously ill, hospitalized adults. Additionally, today survival time is linked to an assortment of prognostic variables through 16 statistical models. These models were first developed as an outcome of the SUPPORT study, which were based on the experience of thousands of patient’s prognosis and experiences across time and institutions (Lynn, Teno, & Harrell, 1995). The outcomes of these models’ trajectories are then used to set priorities for the continued care of the patient or to initiate end of life discussions. Another outcome of the SUPPORT investigation according to William Knaus, one of the co-directors of SUPPORT, was to begin to see the dying patient as a person, “…we have to think creatively to help patients craft the best way for them to live their last days” (Curtin, 1996, p. 59). Knaus echoed what Dame Cicely Saunders, one of the pioneers of the hospice movement, said, “The care of the dying demands all that we can do to enable patients to live until they die” (1996, p. 59). In practice, most people do not see “dying” as part of living. Few people think in terms of making someone’s last days as full of life as possible. As noted by Curtin (1996), “one small change would be to think of the dying as people rather than as patients.” Rarely does the medical field think in terms of optimizing life for the dying: helping people find pleasure in their last hours, peace of mind, laughter, mending of old hurts, fulfillment of a small goal, or comfort in the arms of a loved one. Indeed, the SUPPORT study has proven to be a watershed moment in research regarding end-of-life care. Institute of Medicine (IOM). In addition to the SUPPORT report, two other large-scale studies were conducted by the IOM to address the needs of the dying in the United States. The first report published in 1998, Approaching Death: Improving Care at the End of Life and the second, published in 2014, Dying in America. Both studies saw the need for better clinician- patient communication and more advance care planning. The IOM’s 1998 study considered the dying experience not only in hospitals, but also in nursing homes, hospice facilities and home hospice. It proposed how health professionals could better be prepared to care well for those who were dying. The IOM asked important questions regarding the appropriate care for dying patients and identified recommendations to improve care at the end of life. However, neither research group asked the dying individual about his/her experience of knowing they were at the end of their life. No one asked the patient what he/she wanted to talk about, or what he/she was thinking, what his/her final wishes were, how he/she had envisioned the last moments of their life, where he/she wanted to die or with whom by his/her bedside.
17 In 2012, the IOM decided that once again dying in America should be revisited which resulted in their report, Dying in America. Longevity was becoming more on the forefront of research and disease making death at a younger age less common. Advances in stem cell biology and regenerative medicine were offering the hope of delaying death. More and more researchers were focusing on delaying death rather than helping the dying. The delay of death became more important than helping the dying patient. The IOM felt that physicians and health care professionals were being lulled into believing that death could always be postponed. These views, along with the impact of the unfortunate choice of words “death panels” during the debate surrounding the passage of the Affordable Care Act, caused fear that individual choice regarding how one faces death could be decided by an uncaring bureaucracy. The growth of technology and the delay of death rather than giving aid to the dying individual brought the IOM to the conclusion that once again death and dying in the United States must be examined. This committee recognized that a great deal had changed in the almost 20 years since the last study. For example, palliative care had gained recognition within the medical field, hospice care had become more utilized, and the number of older, frail adults using the health care system had increased. The IOM committee realized that people want and expect to be in control of decisions about their own care as they approach the end of their lives. However, numerous factors work against patients nearing death. Often people are not physically or cognitively able to make their own decisions regarding care. Physicians have a difficult time recognizing or identifying when the end of life is approaching, making patient/physician communication particularly important. Advance care planning conversations often do not take place because patients, family members, and physicians each wait for the other to initiate them (IOM, 2014). The study also pointed out that, “even when these important conversation have occurred and family members are confident that they know what the dying person wished, making those decisions is emotionally difficult, and families need assistance and support in this role” (2014, p, 2). The IOM also found that the education of health care professionals who provide treatment to people nearing the end of life has improved “substantially in the past two decades, although serious problems remain” (2014, p. 2). However, it was realized that the increase in knowledge about the dying was not necessarily being transferred to the actual clinicians who care for the patients nearing the end of life. Furthermore, it was found that the need for palliative care specialists far exceeded the number of individuals who were specializing in caring for 18 people with advanced serious illness who were nearing the end of life. Another finding of the IOM’s 2014 report was how few people had given little or no thought to their end of life wishes, and even fewer had put their wishes in writing or had a conversation about them with someone. One of missing pieces in all of the work done by the researchers and the studies done by SUPPORT and the IOM was talking to and understanding the needs of dying older adults. Today, chronic long term illnesses, such as heart disease, stroke, chronic obstructive pulmonary disease (COPD), diabetes and Alzheimer’s disease are among the leading causes of death (Warraich, 2017). Unfortunately, many of these chronic diseases are on the rise in the United States, with diabetes increasing by 60 percent and Alzheimer’s by 392 percent since 1990 (Hsiang-Ching, Xu & Murphy, 2013). By 2005, half of adults in the United States had at least one chronic illness and a fourth of these suffered from at least one limitation in activities of daily living (Bodenheimer, Chen & Bennett, 2009). For example, one in three Americans born in the year 2000 is predicted to develop diabetes (Narayan, Boyle, Sorensen, & Williamson, 2003). Consequently, many people will live a very long time chronically ill. Because degenerative, chronic conditions have replaced acute diseases as he major cause of death, large numbers of people live in the shadow of death for months or even years. One hospice nurse recounted a patient’s daughter saying, “My father started dying twenty years before he actually died” (Abel, 2017, p. 1). The father had suffered a heart attack and had bypass surgery, but never fully recuperated from the occurrence of his heart attack. Death was always a part of his living.
The Hospice Factor Hospice care is an important aspect of care for dying patients that emerged in the late 1960s during a time of concern about the use of aggressive, high-tech medical treatments at the end of a person’s life as discussed earlier. Hospice can and will play a vital role in caring for the ailing older adult. What follows is a brief history of hospice and an explanation of the hospice philosophy. Hospice cares for more than 1.65 million Americans, and their families, every year, and that number that continues to grow each year (NHPCO, 2018). The focus of hospice is to provide care to the dying, not curative measures. Hospice utilizes an interdisciplinary team of health care professionals and trained volunteers who address symptom control, pain management and emotion and spiritual support personalized to the patient’s needs and wishes. 19 Hospices have played a vital role in transforming ideas about death and dying in the United States. The hospice movement views death as a natural event and seeks to enable people approaching death to live as fully and painlessly as possible (Abel, 2018). Florence S. Wald, the former dean of the Yale School of Nursing, is recognized as the founder of the hospice movement in the United Stated. Soon after Wald returned from London, England, where she visited St. Christopher’s of the Field, the first modern hospice founded by Cicely Saunders, Wald launched her study, “The Nurses Study of Dying Patients and Their Families.” This study laid the groundwork for the first hospice in the United States. In 1974, Hospice, Inc. (later the Connecticut Hospice) opened in New Haven, Connecticut providing home care services to people with a limited life expectancy. Six years later, in 1980, Hospice, Inc. opened an impatient facility (Abel, 2018). Today hospice is touted as the best form of care for patients near the end of life. As a result, the proportion of people who are enrolled in hospice at the time of death has been steadily increasing. Nearly half of all Medicare patients receive hospice care at the time of their deaths (NHPCO, 2018). What is hospice? Hospice is both a concept of care and a benefit. Hospice care is a type of care and philosophy of care that focuses on comfort care for a terminally ill patient’s pain and symptoms, and also attends to their emotional and spiritual needs. In order to be placed in hospice, a person has to have a prognosis of six months or less to live and to no longer pursue curative treatment (NHPCO, 2018). As a benefit, in the United States hospice is largely defined by the practices of the Medicare system and other health insurance providers, which make hospice care available either in an inpatient facility, long term care facility or the patients’ home (medicare.gov, 2018). In 1982 Congress initiated the creation of the Medicare Hospice Benefit, which became permanent in 1986. In 1993, President Clinton installed hospice as a guaranteed benefit and an accepted component of care provisions (Connor, 2009) A coordinated team of health care professionals, caregivers and family members help provide hospice care and all focus on the comfort needs and care preferences of the patient. The health care team members communicate regularly to adjust the care plan to meet the changing needs and preferences of the patient and to promote good family interaction and participation. The health care team provided by hospice include: physicians, nurses and nurses aids, social workers, clergy, volunteers and others as needed (NHPCO, 2018).
20 Because hospice is often considered the gold standard of care for the dying individual, it is important to note that hospice organizations have recently been critiqued for their shortcomings. Criticisms of hospice. When people elect hospice care, they are choosing to receive care that will not cure their terminal illness but will instead provide comfort and relief from pain. The participants in the study, that understood hospice, all realized they were no longer receiving curative care. All services related to their terminal illness become the hospice’s responsibility. However, hospices do not always provide the care patients need to control pain and manage symptoms (OIG, 2018). According to the most recent report from the Office of Inspector General (OIG) at the Department of Health and Human Services, there are gaps of care and services being provided to many hospice patients. According to the OIG report, “Hospices provided fewer services than outlined in the plans of care for 31 percent of hospice beneficiaries residing in nursing facilities. In addition, hospices did not provide adequate nursing, physician, or medical social services in 9 percent of general inpatient care stays in 2012” (OIG, 2018, p. 4). Additionally, hospices did not meet plan of care requirements in 85 percent of general inpatient care stay in 2012. The purpose of the Medicare hospice benefit is to help patients live out their final days in peace and comfort. Most of the time, this care takes place where the patients already live -- their home, skilled nursing facility or assisted living facility. Nearly half of all Medicare patients are receiving hospice care at the time of death (NHPCO, 2018). The purpose of hospice care for patients in skilled nursing homes or assisted living facilities is particularly important because these patients often have uncontrolled pain or other symptoms that need to be managed, such as respiratory distress. However, examples of poor care uncovered by the 2018 OIG report included: a “101 year old man with dementia who had uncontrolled pain for the last 16 days of his life. Hospice did not change his pain medication until the last day of his life and did not provide the special mattress he needed. Also, an 89 year old man with respiratory distress and anxiety went 14 days with no relief or change in medication”(p. 4). Additionally, three of four hospice patients never saw a hospice physician, weekend visits were rare, and routine visits in skilled nursing facilities were often skipped and mostly came from nursing aides (OIG, 2018). Findings of Medicare fraud were also found by the OIG. Regardless of how often a patient is seen by a hospice staff member, the hospice organization collects the same daily flat rate ($193 per day for the first 60 days, then $151 from that time forward) for routine hospice 21 care from Medicare (OIG, 2018). As of 2016, there were 4,374 hospice organizations receiving Medicare money, about two thirds of which are for-profit organizations (Kaiser Health News, 2018). For example, in Mississippi it was found that for-profit hospices were paying recruiters to solicit patients by going door to door and enrolling people who were not dying and offering them free housecleaning, medicine and doctors’ visits. Other hospices have been found to sign up skilled nursing residents to hospice without their knowledge or their families’ knowledge and no prognosis of dying (Gillick, 2018). A hospice in New York billed for one month of continuous home care for dates after the patient’s death. This hospice improperly received over $1,266,500 in payment for care of the dead patient (OIG, 2018). It should be noted that not all fraud occurs in small companies. In October of 2017, the federal government reached a $75 million settlement with Vitas Hospice Services, a large for- profit hospice organization owned by Chemed Corporation, which also owns the Roto-Rooter plumbing company, for allegations of fraudulent billing (Kaiser Health News, 2018). According to Nancy Harrison, lead author of the OIG report, “Hospice is quite different than it used to be. When it started out, they were faith-based and nonprofits. Plus, most patients had cancer” (Gillick, 2018). Despite these shortcomings, hospice continues to be an important element for the older persons. Hospice can provide great comfort to patients, families and caregivers at the end of life. Indeed, hospice use has continued to grow over time and most families are satisfied with the care given to their relative. According to Dr. Muriel Gillick, a geriatrician specializing in palliative care, 75% of families with a patient in hospice care rated the care excellent as compared to 49% of families whose dying relative was in the hospital (Gillick, 2017). Hospice organizations still emphasize the importance of accepting death as part of life and a natural event rather than a medical or technological failure. Florence Wald’s mission in developing hospice was to help people understand they did not have the power to deny death, but rather to embrace death as part of life and life’s fragility (Abel, 2018).
A Good Death What is a Good Death? Perhaps all of the research on dying and on providing services to the dying has led to the overarching question: “What is a good death?” The ideology of the “good death” is central to the modern hospice movement, has strengthened the patients’ rights and the right to die movements. In 1997 the IOM defined a good death as: “…a death that is free 22 from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards” (Field & Cassel, 1997, p. 23). The concept of the good death has different meanings to different people, but central to the definition is the ideal of dying with dignity, peacefulness, preparedness, awareness, adjustment and acceptance (Hart, Sainsbury & Short, 1998). Death in contemporary America is much more complicated than one might think. As mentioned earlier, medical technologies and increased life expectancies have changed the very definition of medical death. Although death is our common fate, it remains an event that we all will experience differently. What constitutes a good death is unique to each of us, depending on our age, race, economic status, culture, and beliefs. “What’s more, differing concepts of choice, autonomy, and consent make death a challenging landscape, governed by social, medical, legal, and religious systems” (Neuman, 2016, 14). History of a good death. The good death is not a new concept. The French historian Phillipe Aries (1974, 1981) wrote extensive accounts of death and dying from the Middle Ages to the mid-twentieth century. Aries divided his book, Western Attitudes Toward Death into four major sections: Tamed Death, One’s Own Death, Thy Death, and Forbidden Death. Aries argues that prior to the seventeenth century people were very aware of their own imminent death, prepared for it and accepted death as the natural order of life. He called this era Tame Death. There were four characteristics of a “good death:” 1) the dying person would be lying in a recumbent position, 2) the dying person presided over his/her own death, not calling in the priest or saying good bye to loved one until the dying person consented, 3) it was a very public affair, family members, children and neighbors were all at the bedside, and 4) once the death occurred a great deal of theatrics from the crowd was expected. During the period of One’s Own Death, during this period a shift occurred it there was a more personalization of death. Christianity grew and in the new Christian tradition people believe that after death a person would either be damned to hell or go to heaven. As in the previous era friends and family were at the death bedside, but their presence was more tied to witness the judgment rather than simply witnessing death. In the early eighteenth century, coined Thy Death, Aries noted a change in the western person’s attitude toward death. Death was dramatized and feared. Mourning too became excessive with very showy displays of emotion. Memorializing the death became a very important feature of this period. 23 The last of Aries eras is that of the Forbidden Death. Beginning in the late nineteenth and early twentieth centuries, it is believed that western attitudes toward death became both shameful and forbidden. Aries believes that the movement of death to hospitals caused a huge shift in attitudes toward death. Families no long spend hours, days or even weeks with loved ones dying at home. Rather, doctors battle against death and when death finally comes it is usually considered a failure of medicine rather than a natural progression of life. In his analysis, Aries (1974) showed that unlike today, the good death in earlier history was a public event, taking place in the dying person’s home with family, friends, fellow workers and members of the community present. In the so called ‘natural order’ of dying, during the Middle Ages, the dying person acted as the manager of ceremonies, presiding over his/her last days of life, conducting farewells, giving blessings and seeking pardons (Hart, Sainsbury, & Short, 1998). Aries (1974) describes this as ‘tamed death,’ death not feared, rather an event to be celebrated, ritualized and practiced. Aries (1974) characterized modern death as ‘wild death’ according to Hart and his colleagues (1998), death that does not evoke strong emotions but takes place privately and secretly. The conditions of dying in contemporary society, particularly in hospitals, as seen by Aries, was an inhumane and a solitary experience, with death as the outcome of clandestine decisions made by the doctors and family members. Additionally, for Aries the modern hospital was characterized by bureaucratized control of death, which valued organizational efficiency over human dignity (Blauner, 1966). Particularly in the 1960s and 1970s, the “lives of dying people in hospital contexts were characterized by experiences of meaninglessness, isolation, powerlessness and loss of control. The dying person’s autonomy and opportunities were overridden by the hospital staff and the organization of work” (Hart, et al, 1998, p. 3). For more than 40 years, interest in improving the care of dying patients and the search for a good death has progressed from the concern of a few health care professionals to being a widespread concern to many Americans. Most recently, a number of mainstream books have been published extolling how to have a good death. Titles run the gamut from At Peace (Harrington, 2018), The Good Death (Neumann, 2016), The Way We Die Now (O’Mahony, 2017), to Being Mortal (Gawande, 2011). Despite this attention, a good death remains more a hope than standard medical practice for patients. The hospice movement promised a good death, but it has fallen short, once profits became more important than patients. Today, it remains that a
24 good death means a person taking control of his/her health care decisions and negotiating his/her own passage through the many ways of dying.
The Life Course Perspective Finally, this study utilized the life course perspective to have a better understanding of what it is like to be at the end of one’s life as an older adult. The life course perspective recognizes the impact of social structure, historical context, and individual characteristics in determining how individuals may make decisions concerning their end of life planning or accepting of their imminent death. The life course perspective places individuals in age cohorts and therefore in historical contexts, and shows the continual interplay between the social course of lives and the development of the individual. The relation of age and time lies at the core of this perspective and is articulated in three temporal meanings: 1) chronological age, the simple index of growing older; 2) social age, which identifies age patterns in social roles and timetables; and 3) historical time, that points to the membership in a specific cohort with regard to specific birth year in context of social and historical events (Elder & Rockwell, 1978). These three meanings of age (developmental, social, and historical) represent key elements for individuals in regard to the aging process and the decisions they make throughout their lifetime. The life course perspective addresses the balance between stability and change across the life course of individuals. It deals with issues such as adaptions to events, individual choices and decisions, and constraints on adaption and choice when faces with external demands. The first practitioners of the life course perspective were interested in the interaction of social change and history with individual psychological development; more recently, researchers are applying the life course perspective to biological and medical research and aging (Wethington, 2005). The idea of change and adaptability is a key concept to dying individuals who must learn to adapt to changes in energy levels, abilities to perform certain daily activities and dependence on others. Elder’s (1994) themes of the life course perspective can be broken down into several fundamental principles which include: 1) socio-historical and geographical location 2) timing of lives; 3) heterogeneity or variability; 4) linked lives and social ties to others; 5) human agency and personal control and 6) how the past shapes the future (Katz, Peace & Spur, 2012). What follows is a brief description of each of these principals.
25 Sociohistorical and geographical location. An individual’s life path is embedded in and transformed by events and circumstances during the historical period and geographical location in which the person lives. For example, Elder’s (1974) study of people of the Great Depression showed how the events taking place during that historical time played a part in the development of the individual’s life. People and families do not live in a vacuum, they interact within the events of a sociological and historical time. The understanding of various cohorts in this context aids in understanding people’s life histories. Timing of lives. Three types of time are central to the life course perspective: 1) individual time; 2) generational time; and 3) historical time (Price, McKenry & Murphy, 2000). Individual or ontogenetic time refers to chronological age. It is assumed that periods of an individual’s life, such as childhood, adolescence and old age come with certain roles and status within society (Settersten, & Mayer, 2009). Generational time refers to the age cohorts in which people are grouped, based on their age. For example, people born between 1946 and 1964 are known as the baby boom generation. People born during this time period will likely experience death and dying differently then people born in earlier or later cohorts. Finally, historical time refers to large scale societal changes or events and how they affect individuals and families. An example of this is the onset of the medicalization of death in the early 1950s and 1960s. Death became hidden and no longer an event experienced be most people. This let to death being view as a taboo subject, something no longer talked about (Aries, 1974). In addition, Elder (1985) observed that time can also be seen as a sequence of transitions and trajectories. A transition is a life change or event within a trajectory. Going from being single to married would be a transition, whereas a trajectory is a range of experiences like education or an occupation. Usually a ritual or a rite, such as a wedding ceremony or a graduation, accompanies transitions. Trajectory is a long-term pathway, which include age graded patterns of development in major social institutions. An individual’s education is an example of a trajectory (Price, McKenry and Murphy, 2000). Elder noted that progress along trajectories is age graded such that some transitions can be viewed as more appropriate while others do not follow normative social timetables by occurring too early or too late (Settersten and Mayer, 1997). A child dying would be considered dying “off time,” while an older adult dying would be considered dying “on time.” The participants in this study were between the ages of 61 and 96. While it could be argued that the 61 year old represented “off time” dying since life
26 expectancy at birth in the U.S. is around 75 years, the other older adults would be considered dying on time given their chronological age. Heterogeneity or variability. The diversity of each cohort is another of the life courses key principles. According to Elder (1975) as successive birth cohorts encounter the same historical event, they do so at different point of their life course; the impact of the event is contingent on the career stage of the cohort at the point of historical change (p. 169). Additionally, each person in the cohort brings in different social dimensions such as, gender, social class, ethnicity, and religion. Finally, the longer one lives, the greater the exposure to factors that affect the aging process, such as diseases. Linked lives. Another of the tenets of the life course is the idea of linked lives. This is the idea that lives are interdependent and reciprocally connected on several levels. Societal and individual experiences are linked through the individual and its network of relationships (Elder, 1998). Therefore, large events such as war can affect individual behavior, such as enrolling in the military, which also has consequences for her/his family. Lives are linked generationally as well. A person who has witnessed their parent or a friend linger and suffer a long drawn out death may be influenced on their views and hoped for own death. Human agency and personal control. According to the life course perspective, individuals are active agents who not only can negotiate the effect of social structure but can also make decisions and set personal goals. However, it must be recognized that the ability to make specific life choices depends on social opportunities and constraints. An example of human agency would be the ability of a person to choose hospice care. For some, that choice may not be an option due to geographic location. Additionally, some religions or family beliefs may not allow for comfort measures. How the past shapes the future. Finally, another characteristic of the life course perspective is that early life course decision, opportunities, and conditions affect latter outcomes. The past, therefore, has the potential to shape the present and the future; which can be seen as a domino effect. For example, one generation can transmit to the next the impacts of the historical circumstances that shaped its life history. Living through the Great Depression would be an example. The timing of life events and behaviors can also set up a chain reaction, such as getting pregnant in high school. The past can significantly affect later life outcomes such as socioeconomic status, mental health, physical functioning and marital patterns (Price, McKenry and Murphy, 2000). 27 For older adults, their life course may play a large role in the way they die. By talking to older adults and their views of dying a clearer picture of the needs and wants of a generation of people may become clearer. Certainly their past experiences have shaped their lives. Let’s hope the experiences of each individual can help shape their death into a good death.
Summary Overall, this chapter has provided an overview of the existing literature and research done regarding end of life issues for older adults. This study builds upon the existing literature to provide a more complete picture of the needs, wants and care of the older adult facing the last few months of life. The life course perspective aids in the understanding of individuals with variable backgrounds and life situations, each may have similar or different needs and goals. The next chapter describes the methods used to study the experiences of older adults waiting to die
28 Chapter 3: Research Methodology This chapter discusses the methods and steps used to explore and identify themes about death and dying from older adults (age 65 and above) in hospice care. First, is a restatement of the purpose and goal of this project. Next, is a brief introduction to descriptive qualitative research as the specific methodology used in this research. Finally, a description of the sample and details of the process of analysis are discussed.
Purpose of the Research As mentioned in the previous chapters the overall goal of this research was to explore and identify themes about death and dying from, older adults who have been diagnosed by a physician as having six months or less to live and who were enrolled in a hospice program. Dying is a significant aspect of the aging and human experience but is infrequently discussed in society. This study therefore gives voice to the dying older adult and insight into the lived experience of the dying. It adds to a body of knowledge which encompasses: (1) processing a diagnosis of death by a patient (2) examining the experience of waiting to die (3) identifying the patient’s expectations of the dying process and (4) exploring the meaning of a “good death.” In addition, this study informs gerontology about how older adults approach the end of their lives and it will lead to a new dialogue in the field of gerontology.
Rationale for Exploratory Qualitative Methods The specific aim of this research was exploratory in nature; therefore the use of descriptive qualitative methods best matched the intentions of this study, to explore the experience of “waiting to die.” Qualitative research is a process of naturalistic inquiry that seeks in-depth understanding of social phenomena within their natural setting (Patton, 2002). It focuses on the “why” rather than the “what” of social phenomena and relies on the direct experiences of human beings as meaning-making agents in their everyday lives (Patton, 1990). Rather than through logical and statistical procedures, qualitative researchers use multiple systems of inquiry for the study of human phenomena (Creswell, 1998). Qualitative methodology offers an approach to inquiry that allows an understanding unique to individuals and their meanings and interactions with others and the environment (Lopez, Willis, 2004). The individuals in this study offer their own unique experiences and are able to express those experiences using their own words. 29 Exploratory interviews allow for detailed examination and deep understanding of the research questions, and allow the voice and story of the participants to be told (Patton, 2002). An exploratory approach is suggested when a topic has not been researched extensively and a deeper understanding of an issue is desired (Patton, 2002). Furthermore, “the goal of qualitative descriptive studies is a comprehensive summarization, in everyday terms, of specific events experienced by individuals or groups of individuals” (Lambert & Lambert, 2013, p. 255). Other qualitative methods require an attempt to theorize or interpret the data that have been collected. Because little is known about the experience of the dying person, direct interviews are the most sensitive and direct method to gain knowledge about this state of being. The goal is to interview enough people to reach a point of credibility in describing the individuality of this population. Therefore, the achievement of true “data saturation” (or the point at which no new information is learned from the participants) (Lambert & Lambert, 2013) may be difficult given the health status and frailty of the population in this study. The strength of this methodology is that it yields detail and depth to create a rich understanding of the end of life experience of the individual. Finally, this research method is flexible, provides a rich and detailed report on small numbers of participants and can address research questions of all types (Sandelowski, 2000).
Modes of Research This study utilizes three well-known research tools from qualitative inquiry ethnographic interviews, field notes and memos. Descriptions of the research tools follow. Ethnographic interviewing (EI). Clearly, interviewing is one of the most common research methods in conventional qualitative paradigms (Ortiz, 2003). Heyl (2001) defined EI as “a method where there is an on-going respectful relationship with interviewees characterized by genuine exchange of views that elicits the meaning interviewees make of the world around them” (p. 369). Interviews must be of sufficient length and duration to build a relationship between the researcher and the participant so that an understanding of the experience in question is discovered. Therefore the interviewee becomes a “co-researcher” in the interview and the research (Ortiz, 2003). According to Kvale (1996) all knowledge produced during the interview is a product of the interaction between both researcher and participant. In order to achieve this goal, ethnographic interviewers must be acutely aware of the necessity to establish a climate where respectful listening is paramount and where there is an understanding of the role the 30 researcher plays in how the participant constructs meaning through the research process (Heyl, 2001). EI involves the use of both direct and indirect questioning. An interview guide (see Appendix C) was used to elicit conversation with the use of probes to delve further into areas of inquiry. The role of the ethnographic interviewer is to facilitate the interview and to collaborate with the informant to create meaning (de Medeiros, 2013). Each of the interviews were digitally audio recorded and transcribed and entered into text. The researcher listened to each interview multiple times and reread the transcripts numerous times in order to develop themes and gain a clear understanding of each person’s perspectives on dying. Overall, ethnographic interviews give researchers unique insights into the lives and experiences of the individual and the issues under study. EI allows the researcher to explore a topic in a way that yields rich data impossible to obtain through surveys, document analysis, focus groups or observation. Field notes. Field notes and memos are an important part of qualitative research. Field notes contain a detailed account of what has been observed. They are descriptive notes that contain information deemed important by the researcher. Additionally, field notes contain information as to where the observation took place, who was present, what the physical setting was like, what social interactions occurred and what activities took place (Patton, 1989). Field notes should allow the research to read the notes and mentally return to that setting. The researcher took extensive field notes during and after interviewing each participant. Field notes provide intimate details of the interview itself, giving a multi-layered, rich description of the setting and events, which occur during the interview. The researcher’s notes were descriptions of the patient, including facial expressions and body language, and a summary of the conversation and other related observations that could not be captured on the audiotape. Field notes were written up or recorded within 24 hours after each interview. Memos. Additionally, the researcher wrote memos throughout the research project to record ideas regarding emerging categories, themes, ideas or what was being learned from the data. Memos can be thought of as “thoughts to myself” and may show possible overlapping themes from the interviews. Memos can capture the thoughts, questions and insights of the researcher throughout the research (Patton, 2002). Memoing occurred during all phases of the project and was an important aspect of the data analysis phase of the research. Field notes and memos were treated as data, and were protected as all other data.
31 Participant Recruitment According to Noy (2008) sampling procedures are unique to any empirical research. Recruitment efforts are crucial moments where the contact between the researcher and informant is conceptualized. The concept of purposeful sampling is used in qualitative research. This means that the inquirer selects individuals and sites for study because they can purposefully inform an understanding of the research question and central phenomenon in the study (Creswell & Poth, 2018). Male and female individuals aged 65 and over who were under hospice care were chosen for this research. Hospice care can be found in hospitals, skilled nursing facilities, continuing care retirement communities and in a person’s home. Participants from all venues were recruited. In order to be enrolled in hospice care a person must have a prognosis from a physician of having six months or less to live. Therefore it is logical to draw a purposive sample from the hospice population. The sample included people with a variety of common chronic illnesses, such as congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), renal failure and “failing to thrive,” known in the common vernacular as “dying of old age,” as well as cancer. People of all races and ethnicities were also recruited. If person of color were a candidate but fell in the age range of 55-65, that person would have been included in the interest of diversity. Exclusion criteria included individuals who had any form of dementia, were in the last stages of death, meaning going in and out of consciousness, or had issues articulating in a fashion that was understandable by the PI. Informants were recruited from the Southwest region of Ohio, including the metropolitan areas of Cincinnati, Dayton and Hamilton, as well as Oxford. Multiple hospice organizations that service these regions were contacted for informants. Additionally, long term care facilities within the greater Cincinnati, Dayton, Hamilton and Oxford regions were also contacted for recruitment of informants. Miami University and Scripps Gerontology Center have credible reputations as research organizations within the aging network of Ohio and this aided in the recruitment of individuals for this project. Additionally, the PI recognized the sensitivity and challenges of this research project. Any person aged 65 or older under hospice care was eligible for the project. However, this meant the participants were terminally ill which limited the time for data gathering. Second, the
32 individuals had to be coherent, feeling well enough to talk, and willing to participate, which also limited the available population. The recruitment of participants proved to be a quite challenge. The PI had numerous contacts with several hospice organizations and long-term care facilities in Southwest Ohio. These contacts included a hospice nurse, a hospice physician, a hospice social worker, and long- term care administrators. The contacts the PI had with the different hospice organizations all agreed that this research was significant and thought provoking. The difficulty came in getting permission from the gatekeepers of those organizations. One organization insisted that the social worker attend each of the interviews. Since this could have compromised the research and have been possibly interpreted as a form of coercion by the participant, the PI did not ultimately recruit from that organization. Another organization required that the research be put before their organization’s IRB (Institute Review Board) before consenting to the research, and for one organization it was suggested that the PI become a certified volunteer for their hospice. In the end, recruitment from long-term care facilities provided the easiest access to participants. A broad range of recruiting locations was utilized, as suggested by Finlay and Lyons (2001). Names of interviewees were given to the researcher by the social workers or clinical director for each hospice organization. She/he acted as a gatekeeper to the first level of selection. Often, the social worker or clinical director introduced the PI to the participant, and in some cases asked the potential participant to sign an agency consent form prior to the interviews.
Human Subjects Consideration Terminally ill people are considered to be a special subject according to the National Institute of Health’s PHS SF424(R&R) Application Guide. However, the Application Guide does acknowledge that for some research it is necessary to involve persons who are terminally ill. The Application Guide is especially concerned for those patients who may be coerced or under undue influence due to the hope of a cure. The reservations spoken of in the Application Guide are particularly applicable to clinical drug trials and medical procedures. The research for this project in no way interfered with or aided in the medical treatment of each individual. All contact with participants was at his/her convenience and was completely conversational in nature. This research was approved by Miami University’s Institutional Review Board (Appendix D).
33 Although potential risk for this research was judged to be minimal, due to the nature of the topic and the slight risk for emotional or psychological unease, steps were taken to minimize the possibility of this risk. The most important step in minimizing risk was making sure the participant fully understood the research project in order to make an informed decision regarding participation. The subject matter of death often makes people feel uncomfortable. Talking about one’s own impending death can be even more unsettling. The researcher over emphasized the nature of the research with potential participants prior to beginning the interviews. For example, when talking with potential interviewees the researcher talked about the nature of the study and asked if the participant felt uneasy discussing death in general. Questions were asked about how much death had been a part of their life and they were asked to talk about those deaths. Then the researcher asked if they would be comfortable talking about their own death and if they had talked to family members, clergy or friends about their death.
Accommodations for Participants As mentioned, the inclusion age for participants was 65 and older. However, with one exception the participants were all in their 80s or 90s. Not only were all participants diagnosed as dying, all exhibited one or more disability of old age such as loss of hearing, loss of dexterity, nerve damage, loss of dental soundness and frailty (Harrington, 2018). In order to compensate for the physical decline of the recruits, the PI made sure the conversations were conducted so that the PI and participant were face-to-face and that the participant was in a comfortable position. This sometimes called for the PI to bring a chair as close as possible to the participant, or to sit in a wheel chair, on the side of the bed, and in one situation each time the PI asked a question she had to stand up and speak into the person’s ear. In that case, the participant was asked to acknowledge they understood the question. It was very important to the PI that the participant was at ease throughout the interview. If the person became tired after only 15-20 minutes the interview stopped and the PI came back multiple times to finish the questions.
Sampling The sample was purposive, meaning that all informants met the criteria of being aged 65 or older and in hospice care, which required they have a diagnosis of having six months or less to live. The interviewees had common chronic illnesses found in many older adults, such as
34 congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), as well as cancer. The researcher did not actively pursue a racially, ethnic or diverse population. Nor was there an attempt to stratify for gender. The first persons willing and able to participate were the ones chosen for this research due to time constraints. A more ethnically diverse population may have provided different answers to the inquiries of the research. However, the NHPCO indicates people who identify as White/Caucasian far outnumber the use of hospice than any other ethnic or racial group. The most recent National Hospice and Palliative Care Organization breaks down the usage of hospice by race/ethnicity as follows: “Caucasian 86.5%, African American 8.3%, Hispanic 2.1%, Asian 1.2%, Other 1.0%, and Native American 4%” (NHPCO, 2018, p.4.) The obstacles to hospice care for minorities are many. They include, but are not limited to: lack of trust in the health care system, cultural differences in belief systems and language barriers (Doka & Tucci, 2009). Additionally, recruitment of minorities in the Cincinnati and Dayton corridor can be difficult. According to the 2016 United States Census Bureau, 72% of Montgomery County (Dayton) is White, 21% is African-American, 2% is Asian and 3% is multi- racial. The Cincinnati area (Hamilton County) has similar statistics: 66% White, 26% African- American, 3% Hispanic, 2% Asian and 2% multi-racial (Statistical Atlas, 2018).
Informed Consent Before the interviews took place the researcher discussed the informed consent form with each participant (Appendix A). This form detailed how the data were being collected and stored, security measures taken with the data, confidentiality, and the voluntary nature of their participation. The participants’ signatures were obtained indicating their approval for data collection, permission to audio record and their acknowledgement that they had permission to stop the interview at any time. Often times the researcher read the informed consent form to the participant while the participant followed along, assuring complete understanding of the nature of the interviews. The researcher kept the signed letter and the participant was given a copy of the letter. The consent form was made available in regular type and in large type in case of visual impairment.
35 Saturation Sample size in qualitative research can vary greatly and is based on reaching data saturation. There is not a one-size fits all method to reach data saturation in qualitative research. This is because study goals and samples differ. However, researchers do agree on some general principles in determining when saturation is reached. These include: no new data are needed since participants are echoing what previous participants have said, no new themes are emerging, no new coding is needed because the current codes are comprehensive in scope and finally, the study should be able to be replicated (Fusch & Ness, 2015). However, Patton (2002) suggests that richness of the data drives the sample size and that saturation can be achieved with as few as one informant. Saturation in data collection means that the sample size is adequate to fully explore the issue, and data collection can cease when no new data or information is being obtained in the interviews. Given the exploratory nature of this study and the frailty of the population, saturation in the traditional sense was difficult to achieve. Instead, the goal was to find as many participants as possible in a reasonable amount of time and illustrate a variety of informant characteristics, while also finding common categories of data. As a guideline, sample size was estimated on the formula suggested by Maykut and Morehouse (1994) that 12 to 20 informants should allow for saturation in most qualitative studies.
Interview Strategy All interviews took place at the time and place most convenient for the participant. Most often the interviews took place in the person’s room at either the long -term care facility or the home. The interview process began by asking the person to tell the researcher a little something about her/himself, such as when and where they were born, years of education, what kind of work they had done, and any hobbies they might have had (See Appendix C). The original goal was that each interview last approximately one hour. The researcher found that forty-five minutes to an hour was the time limit each participant could maintain an engaging conversation. After an hour the PI could tell that the participant was beginning to tire. The researcher was able to determine that the interview should end by a noted physical tiredness shown by the patient, such as yawning, slumping in the chair, or the interviewee just said, “That is enough for today.” Interview guide development. The specific aims of the research were the starting point for the generation of the interview questions. As outlined in chapter one, the research aims were focused on end of life issues for older adults, including; communication regarding how the 36 patient learned they were dying, the experience of waiting to die, their goals and needs as they wait to die and the meaning of a “good death.” The questions were also informed by a research project headed by Ira Byock, MD and his associates, while at the University of Montana called the Missoula Demonstration Project: The Quality of Life’s End (MDP). This project was founded in 1996 to research the experience of dying and the quality of individual care related to life’s end and to show that a community based approach can improve the quality of care for an individual (Stanton, Shuy & Byock, 2001). A second influence in the development of the interview guide was the Liverpool Care Pathway for the Dying Patient. It was developed in the late 1990s as an example of the best practices for supportive and palliative care for the dying in England (Ellershaw & Wilkinson, 2011). A final influence in the development of the interview guide was the work of Rubinstein and Black (2004) and their work on themes of suffering in later life. Additionally, a great deal of literature and videos of dying individuals were reviewed and helped guide the list of questions. Over time, questions were reworded, reordered or redesigned when appropriate to clarify concepts introduced to the participants. In particular, the idea of a “good death” often needed to be probed in order for the participants to give a well thought out answer. Techniques such as probing questions, asking for clarification, repeating questions, active listening, summarizing and the use of silence were utilized to augment discussion (Creswell, 2013; Roulston, 2010). Interview questions are listed in Appendix C Data collection. The data for this project were collected through two semi-structured interviews. Interview 1. The first interview was used to fully explain the project to the participant as well as give details regarding the consent form. The initial interview also helped build rapport with the participant and to gather important background information. These data included age, a life history, how long the patient had been under hospice care, family support and general health information. Depending on how long the participant talked about their life history or other background information the first interview was also used to begin the interview questions. At the start of each interview, the researcher thanked the informant for their willingness to participate in the study. The person was told that the study was being used to complete a doctorate program and that the outcomes of the study would be used to help other people in their similar situation. The
37 use of an informal conversational tone was used to make the interviews feel more like a conversation rather than an interview, as suggested by Patton (2002). The interview guide was structured to begin the interview by asking general questions so that a personal connection could be built. As the interview progressed deeper and more personal questions were asked, eliciting deeper thoughts and insights (Erlandson, et al., 1993). The interview guide served as a reference to assist the researcher in probing for descriptions of experiences, concerns about lack of communication, their experience of waiting to die, and ideas about a “good death.” As qualitative interviewing requires a natural progression of conversation, some informants told their stories without probing, while others needed significant encouragement to provide detail to some questions. It is common practice in qualitative interviews for the researcher to determine the need to develop or amend the planned questions as the interviews progresses. The interview guides served as a tool to prompt story telling by asking questions like “Tell me about how you …”, or “Could you tell me more about what you mean by that?” (Roulston, 2010). Open ended questions from the interview guide provided basic structure for the questions, while allowing the participants to describe and discuss experiences within the context most meaningful for them (Creswell, 2007). While the interview guide was used as a basic structure for the sessions, the researcher followed the informants’ lead and discussed topics that they determined were important and pertinent to them. To clarify understanding of the informants’ stories, frequent restating of comments was ongoing throughout the interviews. Repeating back informant’s responses and asking for clarification assured that the researcher clearly represented the participant’s contributions, and provided validation of the data collected. Significant discussion took place regarding the informant’s personal life, with participants sharing stories, incidents and anecdotes about their healthcare experiences. Interview 2. The researcher had transcribed the first interview prior to the second. This allowed the second interview to be used to finish any unanswered questions from the first interview and to build on themes and ideas from the previous discussion. It also allowed the PI to probe for deeper meanings and further understanding related to the aims of the research. There was only one case in which the participant died prior to the second interview. However, some valuable insight and information was gained during the first interview and that person’s data remained as part of the study
38 Data Analysis Patton (2002), reports two primary sources of data to be analyzed: the data actually collected in the study and the insights, interpretations, and discoveries made during data collection. As previously mentioned, the transcribed interviews, field notes and memos were all used for analysis. Not only is the script of the conversation part of the analysis, but also it is important to note and analyze the reactions of the participant to the questions during the interview. Data analysis for qualitative descriptive research does not require strict procedures of analysis, but rather encourages finding the method based on the research question/specific aims and literature, which guides the analysis. The study data for this research was subjective in the best sense of the word. The data recorded participants’ attitudes, beliefs, values, and knowledge, regardless of whether these matched the objectives of the research question. All analysis was data driven. The issues and themes that were significant to the participant were the focus of the analysis. Even though a set of semi-structured, open-ended questions was utilized for the interviews, the questions were used as a starting point. Participants were allowed to introduce their own topics during the conversations. Additionally, transcriptions of the conversations and notes made by the researcher of her observations and reactions during the visits were also used to suggest further topics and inquiries. Even though the study is data driven, this does not suggest that the researcher came to the study or analysis as tabula rosa (blank slate). The data collection began with a set of knowledge gained by the researcher through professional experience and education in thanatology. Conventional content analysis. For this study, conventional content analysis was utilized to guide data analysis. Conventional content analysis is described “as a research method for the subjective interpretation of the content of text data through the systematic classification process of coding and identifying themes or patterns” (Hsieh and Shannon, 2005, p. 1279). Conventional content analysis method allows the researcher to gain a richer understanding of a phenomenon, especially when existing theory or research literature on that phenomenon is limited. Researchers avoid using preconceived categories, instead allowing the categories and names for categories to flow from the data. Researchers immerse themselves in the data to allow new insights to emerge (Kondracki and Wellman, 2002). According to Ainsworh-Vaugh (1998), coding for predetermined categories suffers from being an “either-or” approach. For example, if a person says, “I feel so awful anymore. I don’t know if I’m alive or dead,” (Stanton, Shuy & Byock, 39 2001) the coding would use “feel awful,” not “pain,” which would be an interpretation. Coding with predetermined categories also lends itself to allowing for only one meaning or function for a coded item. With naturalistic data such as in this study, it was important for the categories to emerge allowing for the nuances of language, in which there can be multiple meanings and messages in each remark. Therefore, the proceeding quote might generate a number of codes: “feeling awful,” “frustration,” “confusion,” as possible examples. Coding. Initial or first phase categorization began with the PI carefully reading each transcript, numerous times. Following initial readings, content analysis began, where transcripts were searched to discover salient patterns that were used to develop initial meaningful units of discussion (Patton, 2002). For example, talking about being able to see a great granddaughter walk before the interviewee’s death were coded as “goals”; any mention of time remaining or time being short or wishing they had more time were coded as “time”; mentions of funeral planning became “funeral,” and this was later broken down into “music” and “scripture.” The codes emerged progressively during data collection. This is also known as open coding because there were no pre-determined categories to be assigned. As the analysis developed, a preliminary code book developed as a reference. The code book listed the names for all of the codes, and the definitions of the codes as they were assigned. Having an ongoing directory improves the consistent application of codes (Schoenberg, Kruger, Bardach & Howell, 2013) and demonstrates rigor in qualitative research. The code book underwent continual revision throughout the coding process, sometimes teasing apart complex stories, and other times combining codes that became apparent were more closely related as the data were analyzed. Initial or first phase coding continued until all data were coded into appropriate categories or into deviant categories when it could not fit with other codes (Patton, 2002). This stage is also referred to as the testing/authenticating of inductive content. It involves comparing the codes and themes developed in phase one for appropriate placement, and/or determining if other placement opportunities exist (Patton, 2002). Trustworthiness. To show rigor and assure the study was trustworthy, Patton’s (2002) recommended steps were taken in this study: a purposive sampling focused on informants who could provide insight into the research questions; comprehensive memos and detailed field notes documented any information that might be helpful during later stages of the project; interviews continued until saturation in data collection was reached; the code book was used to assure the consistent application of codes; and identification of confirming and disconfirming patterns 40 assured careful analysis. To clearly represent the informants’ experiences, direct quotes were included in the coding procedures. Data interpretation. Data interpretation is the process of “attaching significance to what was found, making sense of findings, offering explanations, drawing conclusions, extrapolating lessons, making inferences, considering meanings, and otherwise imposing order on an unruly but surely patterned world” (Patton, 2002). This develops through careful reading, coding, and analysis, as well as writing and reflecting on the data. The advantage of the conventional approach to content analysis is gaining direct information from study participants without imposing preconceived categories or theoretical perspectives. Knowledge generated from the content analysis is based on participants’ unique perspectives and grounded in the actual data. As the project’s sampling technique was designed to better understand the experience of waiting to die, the analysis techniques were structured to capture the complexity of the individuality of the experience of waiting to die. The use of direct quotations and anecdotes capture the true character of the informants. The data presentation focuses on sensitivity toward the experiences that the informants shared. The individual revelations and detailed descriptions allow the reader to better understand the end of life experiences. All informants received fictitious names after the data were transcribed. The transcripts were modified to include additional changes to protect the privacy of the informants. Cities, specific healthcare providers, and hospice organizations are not mentioned by name. In the transcription, a non-descript set of letters (e.g., XXXX) were typed instead of a person’s name to protect anonymity when the participant talked about other persons involved in care of the individual. All physicians and other healthcare providers are referred to as “Dr. XX.” Any other identifying information was indicated by XXXX in the transcript. Careful management of these notes assures that disclosure of the participant is not discovered through deductive means by outsiders. In addition, the transcribed individual document files were assigned file codes to protect the identity of participants. Conclusion drawing. Qualitative research is an iterative set of processes where the final step is to draw conclusions regarding the analyzed data and to assess the implications the data has for the project’s research questions (Miles, Huberman & Saldana, 2013). Validity in qualitative research encompasses a broad concern for whether the conclusions being drawn from the data are credible, defensible, warranted, and able to withstand alternative explanations (Wolcott, 1994). Given that this research was exploratory in nature, no theory or set of theories 41 were used as a guideline for the study. All of the outcomes and conclusions drawn from this research will enlighten what is known about the experience of reaching the end of one’s life.
Positioning of the Researcher My vast experience on the front line of death and my interest in the academic study of death and dying has led me to this research study. For over 18 years I have been a licensed funeral director in which I counseled well over 1500 families who were making final arrangements for a family member or close friend. Additionally, I helped numerous individuals pre-plan funeral arrangements prior to their death. During that time, I became a licensed embalmer, where I attended the Cincinnati College of Mortuary Science, graduating in 2004. While attending mortuary school, in addition to the embalming courses, I took courses in the history of funerals, social aspects of death and dying and counseling for grieving individuals. After leaving the funeral service business, I attended Hood College accruing seventeen hours towards a Master’s degree in Thanatology. I am a member of the Association of Death Education and Counselors (ADEC) and have earned Certificates of Thanatology from both ADEC and Hood College. Since 2010, I have attended the annual professional meeting of ADEC participating in pre-conference workshops on topics such as Ethical Issues When People are Making Life-or-Death Decisions, The Power of Narrative in Bereavement Work, and Grief Counseling. As a PhD candidate in the Department of Sociology and Gerontology at Miami University my research has focused on death and dying and end of life issues for older adults. I have researched volunteerism in hospice, people’s perceptions and misperceptions of hospice, and palliative care issues. Additionally, along with colleagues, I held the first Death Café in Oxford, Ohio in November of 2012. The objective of the Death Café project was to increase awareness of death and help people make the most of their finite lives. The cafes are intended to be a safe environment where people can gather and share their thoughts, feelings and fears surrounding death. Most recently, I was involved with an online course spearheaded by four hospice nurses from Australia entitled “Dying 2 Learn.” I have also done extensive reading on end of life care and the medicalization of death in the United States. I will be bringing these accumulated experiences, knowledge, understanding and assumptions regarding death and dying to this research study.
42 Chapter 4: Findings In this chapter, the four specific research aims are presented with corresponding findings. Major themes of responses are identified from the informant interviews, which include direct quotes from informants that address the research question. Given the complexity of individuals, specific circumstances for each case included in this study, and the sensitive nature of discussing death, categories and descriptions of experiences described are not necessarily distinct and exclusive to each specific aim. The experiences and opinions described by the informants are often multifaceted, complex, and have been assigned themes thought to best express and demonstrate their beliefs and experiences.
Participant Characteristics Thirteen (n=13) people (six women and seven men) ranging in age from 61 to 96 year (mean age = 84.4 ) years were interviewed. One person aged 61 was included in the interviews even though he did not meet the age requirement. Inclusion of this person was due to the uniqueness of his situation. Unlike the rest of the interviewees, Mr. M. came from very low socioeconomic status and had been homeless at one point in his life. In the interest of diversity, Mr. M. was included in the sample. At the conclusion of interviewing the thirteenth person it was believed that saturation was reached since there were clear patterns in responses and no new information was provided through interviews. However, it must be noted that dying is a very individualized experience and complete saturation may never be reached. Table 1 includes participant demographic characteristics. All of the informants described themselves as Caucasian and all but one came from middle income or higher income status. Levels of education and occupation varied. Some people came from farming and factory work, and others were office workers, educators and homemakers. Educational backgrounds ranged from not finishing high school to earning a doctoral degree. Some of the informants were living in their own home, others were living independently at a continuing care retirement community and others were in skilled nursing facilities. Over the course of the study two of the participants died within weeks of completing the interviews. One of the difficulties in recruiting participants for this study was finding patients under hospice care who were able to participate in an oral interview. Given that almost half of all patients’ stay in hospice (40.5%) is two weeks or less, it was difficult to find patients who were
43 not actively dying (NHPC, 2018), meaning they were no longer eating or drinking, they were sleeping most of the time or had fallen unconscious.
Table 1: Characteristics of Informants Participating in the Study
Informant ID Current Sex Education Living Age Arrangement Skilled Nursing Subject Mr. G. 80 Male High School Facility
Business Skilled Nursing Subject Mrs. J. 83 Female College Facility
Skilled Nursing Subject Mrs. A. 78 Female High School Facility
Independent Subject Mr. E. 91 Male High School Living Independent Living Subject Mrs. C. 90 Female High School Skilled Nursing Subject Mrs. M. 88 Female High School Facility
Subject Mr. R. 80 Male GED Home Graduate Subject Mr. S. 86 Male Degree Home Independent Living Subject Mrs. L. 96 Female High School
Subject Mr. K. 86 Male High School Home Independent Living Subject Mr. B. 91 Male College Degree Skilled Nursing Subject Mr. M. 61 Male 6th Grade Facility Independent Living Subject Mrs. P. 84 Female College Degree
The Interview
It was anticipated that each interview would be done only with the participant present. However, in one instance the wife and daughter of the participant wanted to stay for the
44 interview and were present for both interviews. The researcher does believe that having the spouse and daughter in the room influenced the participant’s responses to the questions. In another situation, the hospice social worker felt it proper to introduce me to the participant. Shortly after the interview began the social worker left the room and talked with the participant’s spouse while I conducted the interview. The rest of the interviews were conducted privately with only the participant present. Each participant was interview at least twice; one person was interviewed three times. Each interview lasted approximately 50 to 60 minutes.
Findings Impressions of hospice. While not tied to a specific aim, conversations regarding the participants’ understanding of hospice came up in the interviews. There were many stories of positive impressions of hospice care providers and the patients described having a complete understanding of hospice, dying and what future needs they may have as they begin to actively die. For example, Mrs. L. stated, “I love my hospice nurse. She visits twice a week and checks on me. She also makes sure my oxygen is delivered. She asks if I need anything else and makes sure I’m comfortable. I call her my hospice Angel.” Mr. B. remarked about the comfort of being able to die in his apartment. “Now that I’m in hospice, I’ll be able to be here, in my apartment. This is where I want to die.” While these quotes point to the participants’ familiarity with hospice and the hospice care providers, there were other stories that showed participants’ complete lack of knowledge regarding hospice. In fact, some participants were totally unaware of the services hospice provided, or even why they were under hospice care. These were the patients who had been placed in hospice at their families’ request. Even though hospice nurses visited these patients regularly, at least once a week, several participants couldn’t explain one thing hospice did for them. For example, when asked about hospice Mrs. C. commented, “Some nurse comes in here about once a week. She is not one of the regular nurses. I have no idea why she comes.” Not only did Mrs. C. not understand why this nurse came she also did not understand what hospice was about. She said, “My daughter put me in hospice. What is hospice? I guess it means I get extra care. Another interviewee said, “I guess I’m in hospice, whatever that means.” When probed further about hospice this participant said, “I guess hospice is supposed to make sure I’m comfortable. But, the staff here does a good job of that. I don’t know why I need any extra people.” This 45 participant had also been placed in hospice by her daughter, and demonstrates the reluctance of family members to discuss dying with their parent.
Findings by Specific Aim Following are findings specific to each aim. Specific Aim 1: To examine when and how the individual came to know she/he was dying and to explore how she/he processed that knowledge. What was it like to learn your life was ending? The first aim of this study was to learn, in the words of patients in hospice, how they came to know they were dying, such as who talked to them about dying, who referred them to hospice and how they dealt with the knowledge that their life was limited. How people learned they were dying. Three themes emerged while talking to participants about learning they were dying: 1) conversations about dying with physicians 2) families placing patients into hospice without the patients understanding of hospice 3) patients placing themselves into hospice and foregoing any further curative treatment. Conversations with physicians about dying and hospice. The first theme describes moments when participants learn they are dying and/or about hospice from physicians. Some of these conversations could be rather harsh, others were more gentle and kind. For example, Mr. K. said he was told about hospice when he was to be released from the hospital after suffering a severe heart attack. At that time, Mr. K. only had function of about 40 percent of his heart and a defibrillator had been inserted into his chest to help counter his cardiac dysrhythmia. Mr. K. shared his experience about how he learned he was dying. He said: I was told I was being released from the hospital and was being sent home. Who doesn’t want to go home? Then before my wife gets to my room that morning, the doctor comes in and says, look, you have suffered severe heart damage. There is nothing more I can do for you. I recommend hospice. Then he walked out of the room. I knew it was bad, but I didn’t really expect that news.
This encounter illustrated the discomfort that some physicians may feel when dealing with end of life conversations. The physician didn’t allow Mr. K. to ask questions, he didn’t explain to him why he was recommending hospice, didn’t ask if Mr. K. understood what hospice was, and he revealed this information while Mr. K. was alone. It would have been helpful to Mr. K. if the physician could have engaged in a conversation regarding Mr. K.’s fears and understanding of the information he was just given. The way in which the physician told Mr. K. that he was recommending Mr. K. for hospice was more a declaration of fact rather than a 46 conversation about dying. Additionally, the way the physician told Mr. K. that he was recommending hospice left Mr. K. to contemplate the news of dying alone with no support from family or friends. As this encounter was recalled, it should be noted that this was Mr. K.’s perception of how he was told about hospice from his physician. The physician’s re-telling of the story may be completely different. Regardless, this story illustrates a problem in communication between the physician and patient. Another participant described his being told he was dying as, “Terrible.” Mr. R. said he had been battling leukemia for several years and most recently he had been feeling awful. Mr. R.’s physician had placed him in the hospital to run more tests to find out what exactly was the cause of Mr. R.’s pain and decline. This is Mr. R’s experience of learning he was dying: So the doctor calls my entire family in for a conference. I have a wife and three daughters. We are sitting around my room and in walks the doctor. He looks at me and says, ‘Sir, I think the best thing for you is to go home and be on hospice care. I will place the orders for you and someone will be in to talk to you about getting hospice set up for you.’ Then he left. I was mad! I wish he had told me first and not called my whole family in.
In this instance, it seems as if the physician was not in tune with the patient’s needs, wants or personality. Mr. R. seemed to be a very independent, strong-minded person and a bit irascible, one who had been brought up to believe that part of his job was to protect his wife and family. Mr. R. was angry. He said: By God it is my body and I get to decide what to do with it. Plus, I didn’t want my wife to know all this stuff. What good’s it going to do? All she’s going to do is worry. Look at her, she’s a wreck. The outcome’s the same isn’t it? I’m going to die.
Mr. R. was not angry at his prognosis, he was angry at how he was told of his imminent death. A different approach is illustrated by the conversations Mr. S. had with his physician about dying. Mr. S. had been recently diagnosed with esophageal cancer. The physician recommended to Mr. S. that he tries surgery to remove the cancer and to follow up with radiation and chemotherapy. Having surgery and the subsequent treatment is what Mr. S. did until it became clear that the cancer was spreading rather than being reduced. At that time, Mr. S. said that the physician came in and asked him what he wanted to do as far as treatment was concerned. Did Mr. S. want to continue or did he want to pursue comfort care? Mr. S. explained: So the doctor comes in and sits down. He (the doctor) explains that the cancer has now spread to my bones. The treatment is not working. The doctor says, “Here are your 47 options. One, you can continue treatment. While it is not really working, the treatments may slow down the pace of spreading. Two, you can stop all treatment, go into hospice care and eventually go home.” I said, I’m done, no more treatments. The doctor was really nice. He asked if I had questions about hospice. How this cancer might play out as far as the very end is concerned. He was great.
In this example, the physician was willing to talk about not only a grim prognosis, but also the next step, hospice and going home from the hospital. For Mr. S. this was a good approach to talking about dying with the patient and giving further treatment options. However, it still lacks an in-depth discussion regarding Mr. S.s’ goals, needs or wants in regard to any advanced directives. It could even be argued that a conversation regarding Mr. S.s’ end of life plans and advanced care directives should have been discussed much earlier in the treatment plan. These examples point to the difficulty that physicians may have with discussions about end of life care. Physicians are often undertrained in how to have these conversations and many times feel it is not their job since they are in the job of healing not helping their patients die. Families placing patients into hospice. A second theme emerged related to family members placing the person into hospice. Consequently, the person may have had no understanding of what hospice was or why they were in a hospice program. In the first part of this theme, the focus is on participants’ understanding of hospice. The second part is the participants’ understanding that they are dying. As a segue into asking about how the participant learned they were dying, the conversations often started with inquiries regarding what the participant knew about hospice. It was revealed that just because the participant understood their life was limited, did not mean they understood hospice. For example, Mrs. C, understood that she was dying, but she had no idea what hospice care meant: I know I’m dying. After all, I’m 90 years old. The doctor told me I had a bad heart. Yes, I’m in hospice. What is hospice anyway? All I know is that my daughter signed me up.
In another case, Mrs. M. also was quite aware her time was limited, but was placed in hospice without her knowledge or consent. She explained: My daughter put me in hospice. I’m not sure why. I guess so there is an additional set of eyes looking after me. I’ve had a few bouts of pneumonia and I’ve bounced back each time. One of these times I won’t bounce back. That’s okay. I’m ready.
Additionally, other patients had these comments:
48 Mr. E.: My family insisted I be put in hospice. I guess it’s okay. The only thing they (hospice) do is come once a week and check my pulse, blood pressure and stuff. The other nurses do that. Mrs. A.: Yep, I’m in hospice. I don’t know why. I don’t have cancer. All I know is that A. (her daughter) insisted I be in hospice.
In each example, it appeared that while the family members were familiar with hospice, they either did not communicate this to the participant or the participant did not understand what it meant to be receiving hospice care. It also could have meant that the participant understood hospice care and were in denial, but that did not seem to be the case. It just appeared families had a difficult time discussing dying with their loved ones. Oftentimes it was easier for families to just place their loved one in hospice without telling the patient than having a discussion regarding end-of-life care and wishes. Some family members may have assumed that their loved one knew what hospice is and didn’t pursue further discussion about hospice. One of the participant’s nurses revealed that the hospice nurse was told by the family to keep their badge turned over when visiting so the patient wouldn’t know they were in hospice care. Regardless, by placing a family member into hospice without the family member’s knowledge, the end-of- life discussion was avoided. It should be noted that in cases where the family member put the dying person in hospice care, there was no mention by the dying person of being told by their physician that they were dying. When asked if their physician or any other medical personnel, such as a nurse or social worker, had conversations with them about dying or end-of-life care, some of the responses were: Mrs. C.: The doctor never told me. I just know. Mrs. M.: No, I haven’t had a conversation with my doctor about dying or with anybody else. Mrs. J.: A conversation with my doctor about dying? No, not at all, I rarely see him.
As each person indicated, they understood they were dying, there was no need for a physician to tell the person they were dying, and they had an innate understanding that death was not far off. As explained by Mrs. C. “No one needs to tell me I’m dying. I just know.” Other comments were: Mr. E.: I’m old and I’m sick. I know I’m dying. No one needs to tell me. Mrs. J.: I’ve been dying. Everyday I wake up and think, I’m still here. I don’t talk to anybody about it (dying). I just know it.
49 Patients placing themselves into hospice. A third theme that emerged regarding how the study participants knew they were dying occurred when the patient placed him/herself into hospice care. In these instances, it was not a matter of anyone telling the person they were dying, rather the participant was opting out of any further curative care knowing it would cause their eventual death. Two of these participants had long-term illnesses and had been undergoing medical treatment for at least two years. Mrs. L. had COPD and is on continuous oxygen therapy and Mr. B. had congestive heart failure and a propensity for pneumonia. Additionally, these two participants were living as independent residents in a continuing care retirement community that has its own hospice organization and hospice unit. Mrs. L. explained: I finally said to my doctor, I think I’m ready for hospice. I felt myself not being able to do things like I always had before. And I’m one of those people that I’ve got to do things. I don’t ask people for help. I do whatever needs to be done and that’s it. And then it kept getting to the point where there were more and more times when I couldn’t do some of the things that I wanted to, so I thought, I’d better get some help. Plus, I don’t want to go back to the hospital. There is nothing they do for me in the hospital that can’t be done here. I told the doctor, no more hospital!
Mrs. L. had a clear understanding that by going into hospice there would be no curative care or life prolonging measures. She was satisfied in knowing that if she had a crisis in which her oxygen levels declined, and her breathing became more stressed, she would not go to the hospital. She would be given medicine to relieve her stress, but no efforts would be made to revive her. Mrs. L. would be allowed to die as peacefully as possible. Her desire was to die in her apartment not in the hospital hooked up to machines. Mr. B. also expressed his desire to no longer be hospitalized. Mr. B. was 91 years old, still extremely active within the community and lived with his wife and dog in their independent living apartment. He was confined to a wheel chair due to an accident several years before. He said he enjoyed life, but saw no point in undergoing additional treatment or curative measures. He said: My doctor said he could put another new valve in my heart. I’ve had that done before. But he said I also might not make it off the table at my age. He told me my time would be limited without the surgery. I told him no, no surgery. I told my family the same thing. What’s the use? I’m enjoying my life right now. I’ll take things as they come. I also told the doctor I wanted to be put in hospice care.
I asked Mr. B. how he knew he wanted to be placed in hospice. He responded by saying:
50 Well you can’t live here (in the continuing care community) and not know about hospice care. We’ve lived here for over twenty years. We’ve had a lot of friends go into hospice. Hospice does a great job. I tend to get pneumonia. No more hospital visits for me. The hospice nurses can take care of me here (at his residence).
Overall, Mr. B. appeared to be well informed about both his condition and hospice and therefore seemed to be making the choice on his own. Mrs. P. told how she chose not to continue treatment for her breast cancer. She, too, lived independently at a continuing care community. She had been five years cancer free when she had gone for her annual checkup and a tiny spot was found on her mammography. Mrs. P.’s physician told her not to worry because she didn’t think it would come back malignant. Unfortunately, Mrs. P.’s physician was wrong. When Mrs. P. went back to talk to her oncologist the oncologist told her that her cancer could be treated with radiation and a new cancer drug. She explained: I said no to the radiation right away. I had been that route five years ago. At the time my husband was living and I had a reason to fight. The doctor did encourage me to at least try the drug. She said it might extend my life for another year or two. I told her I would think about it. I went home and thought about it [the drug] for a few days. My husband had multiple myeloma and he also tried a new drug. He was fine one day, then boom, he became really ill. The doctors tried a new drug on him and I think it was too strong. He died five days later. After reading the side effects of this cancer drug, it’s advertised on TV, and thinking of my husband, I thought no, I’m not doing this. Plus, the drug would have cost $12,000 a month. I would have had to pay about $6,000. I have the money… but no. I have no pain right now; I swim everyday and keep very busy. Then I talked to the doctor about hospice. She (the physician) told me that was a good idea.
As with Mr. B., clearly Mrs. P. was informed about what hospice could do to help her since she was forgoing any curative treatment. She had said her husband was in hospice care for a day before he died. Interestingly, it was Mrs. P. who brought up hospice care to her oncologist. When asked why the oncologist, who presumably dealt with cancer and terminal diagnoses on a regular basis, would not have brought up hospice she responded: “No, I was the one who brought up hospice. My doctor just wanted me to check in with the nurses on staff here every two weeks.” When asked about a discussion regarding end of life plans with her surgeon, oncologist or general practitioner Mrs. P. said: “No, no, none of my physicians have talked to me about end of life. I know I’m dying. It will just depend on how quickly this cancer grows.” These three participants each took their medical care and dying trajectories into their own hands. However, it should be noted that these participants were knowledgeable about hospice;
51 the services provided, the frequency of visits, the ability to stay in place the emotional/spiritual support and how hospice is paid. All three lived in a continuing care retirement community, had a long-term illness and/or previous experience with hospice. They were well informed before making the decision to enter hospice. In choosing hospice, these participants also knew their life was limited by choosing to forego any further curative treatment. They knew they were dying without having to be told by a physician. But other participants experienced a moment in time when a physician, in some way, told them they were dying. The second part of this research aim was to understand what it was like to learn one’s life is limited. What is it like learning your life is ending? Two themes emerged from the interviews with the participants when ask what it was like to be told they were dying: 1) confirmation and 2) resignation/acceptance. Confirmation. The first most often mentioned theme was a sense of a confirmation of something they already knew. Although they had not been given a prognosis of any kind, each of these interviewees had an innate sense that they were dying. Mr. G. was in a long-term care facility after being in the hospital for a week due to complications from Parkinson’s Disease and heart disease. His plans were to go home under hospice care. When asked his reaction to the news he was dying his reply was “Well, I suspected the news. It was nothing I was shocked about. I’ve had Parkinson’s bad for about ten years now. I keep getting worse and now my heart is going.” Then Mr. G. was asked how he felt about receiving the confirmation that indeed he was dying. He took a few moments to respond, moved in his chair a bit and said, “It was a little hard to hear someone else say it. Even though I knew it, it was hard to hear. But I’m okay with it.” Mr. G. became teary during this part of the conversation. He was a long-time farmer, coming from an ethos of being tough and facing hard times as they come. After that brief show of emotion, Mr. G. continued talking about looking forward to going home, seeing his farm and grandchildren. A number of participants echoed the words of Mr. G. For example, Mr. R., who was living at home under hospice care, also responded by saying he already knew. He said, “The doctor didn’t need to tell me I was dying. I already knew that. The way he told me upset me, but it didn’t bother me to hear him tell me.” Mrs. M. lives in skilled nursing in a long-term care facility. She has been living there for the last year and a half. 52 The doctor finally came in and told me my heart wasn’t going to last much longer. I kind of had a feeling. But, I’m ready (to die). I’m right with the Lord, so anytime he wants to take me is fine. No it didn’t upset me when he said that.
Each of these participants already had a sense that they were dying. The news of dying was of no surprise when a physician told them their life was limited. Additionally, each person took the news in stride. However, even though they may have had a sense that their time was short, it is one thing to know certain information and not talk about the knowledge. However, having the physician speak the words “You should consider hospice” can bring emotions such as sadness, regret, and despair. Yet, none of the individuals interviewed expressed such emotions. Rather, it seemed each person had accepted his or her fate. Resignation/acceptance. The theme expressed by many participants was a sense of resignation or acceptance of death. As the participants reflected on dying, a number of the interviewees made statements such as: “I’ve lived a full life,” or “I never expected to live this long in the first place.” The interviewees recognized they were older, had outlived friends, spouses and in some cases their own children. There seemed to be an overall resignation that death was not too far off in the distance. As Mrs. M. said, “I’ve had a happy life and I have no reason to complain. I’ve enjoyed life and I’ve come to terms with the fact that I am dying.” To further illustrate Mrs. P. stated, “If I’ve got to go, I’ve got to go! You have to come to terms with these things, it’s no use running away from them.” Each of these participants had the knowledge and accepted that they are dying. They are content to live out their days they best they can. A few of the participant spoke about being ready to die. Mrs. M. said, “I’ve talked to my pastor and made my funeral arrangements. Whenever the Lord wants to take me I’m ready.” Mrs. P. also commented, “I’m not close to my son, but I have made him aware of my funeral wishes and have gotten all my financials in order.” At the present time, these people seem to accept that death is near. Specific Aim 2: To examine the experience of waiting to die as an older adult. What is it like to be diagnosed as dying, yet still have time to contemplate your life and death? Living for a long time with illness is a new cultural phenomenon. Because degenerative, chronic conditions have replaced acute diseases as the major cause of death, large numbers of people are growing old with months or years of living while dying. So what is it like to know you are dying and still be living day-to-day, not acutely ill, but slowly dying? Five themes emerged when talking to the participants regarding their daily lives and their anticipated death. They were: 1)
53 enjoyment, 2) loss, 3) planning, 4) detachment/withdrawal, and 5) holding on. Interestingly, perhaps due to the willingness of the interviewees to be a part of the study, or the selectivity of the hospice staff in choosing the participants, none of the interviewees seemed to be depressed. There were moments of sadness during the interviews but each participant seemed to accept that their life was limited. Enjoyment. Almost all the participants described a sense of appreciation for the time they had left and recognition of their “good luck” in having lived as long as they had. As Mr. B. said: “The clock is going tick, tick, tick. I know that, but I can’t think of that all the time. I try and keep busy doing the things I still enjoy and I plan on doing that until I can’t do them anymore.”
Similarly, Mrs. L. talked of enjoying each day and still being able to get out and enjoy lunch with her friends. She also commented: Now that I am close to the end, I try and appreciate things more than I did before. I appreciate the little things in life, like seeing my grandkids, a good meal, a good nights sleep, especially, being able to breath with no struggle!
Mr. B. also talked about taking life one day at a time. He said, “I wake up some mornings and think, I’m not dead! What am I going to do today?” Even though the participants had a sense that time was limited, none of them dwelt on the lack of time to accomplish goals or felt cheated that their life was about to end. Many of them expressed satisfaction with the life they had lived and what they had accomplished. As Mrs. P. said, “I’ve led a good life. I have no regrets. I plan on continuing to live a good life and enjoying it to the end.” As illustrated by these participants, they are aware that death is close, but plan to live each day as best they can. Like Mr. B. and Mrs. P., those people who are well enough continue to look forward to the day-to-day activities at the retirement community and participate in as many events as possible. Loss. In talking about the enjoyment of life, themes of loss also emerged. Not just in the context of dying and missing family and friends, but also loss in other areas of their lives, such as loss of mobility, or loss of favorite activities, like walking or swimming. The most difficult part of all the interviews was when the participant talked about missing out on family/friends’ activities. For example, Mrs. M. was sad that she would not see her grandson get married. “My grandson graduated from college and lives in New York City 54 now. He is going to get married next summer. I’m sorry I won’t be here to see that. It is going to be a fancy affair.” As she was talking about her grandson, Mrs. M.’s face changed as well as her demeanor; she looked away and paused. Finally, she said, “Can we talk about something else?” Mr. B. commented, “Oh gosh, I’m going to miss my wife and my dog.” My wife isn’t well either and I feel really bad that I’m not going to be here to take care of her.” Mr. B. teared up at this point and said, “My wife has taken such good care of me and I can’t do that for her.” Only two interviewees had spouses and like Mr. B., Mr. R. also spoke of worrying about his wife: I’m worried about my wife. I’m not sure what she will do. I’ve always taken care of everything. She’s never even paid a bill. I suppose D. (their daughter) will take care of her.
Other participants talked of missing out on birthdays for grandchildren or great grandchildren, seeing a great grandchild take her first steps or children’s anniversaries. But, it was not just the loss of relationships and family that the interviewees discussed when talking about losses. Other losses, losses common to aging, came up in talking about being at the end of life. Mr. R. commented “… I don’t drive anymore of course. That really pisses me off. It’s the worse thing, you know. I can’t drive.” Mrs. J. commented on no longer being able to play bridge the way she once did: I was a top-notch bridge player and now about three times or more during a session, I miss what’s going on. I do something stupid, something I would never have done when I was younger. I don’t know if it’s old age or this dying business. Regardless, I don’t like it. But what are you going to do about it? That’s just the way it is.
Mrs. P. also remarked, “I love to swim. I know someday I won’t be able to (swim) anymore. I will really miss that.” All of the interviewees discussed loss in some form. It was expected that the participants would speak with sadness and talk about missing family members or family events. What was unexpected was how much the participants spoke of their other losses. Planning. Many of the participants talked about planning in some form. Some of the planning had to do with getting financial affairs in order or making funeral arrangements. Others talked about organizing photos and mementos for family members. Mr. B. remarked: I’m going to try and do some videos for my kids. I should probably do those right away. I was feeling pretty good about two weeks ago and then I took a bad spell. I went downhill pretty fast. I feel pretty good right now. I hope I haven’t waited too long.
55 Mr. S. talked about making sure he had all of his financial affairs in order. He said, “I made an appointment with my finance guy as soon as the doctor told me I should go into hospice. I don’t want my girls to have to worry about that stuff.” Mrs. M. talked about not only being “right with God,” but also about her funeral planning. She remarked, “I have my funeral all set up and paid for. I even have my hymns picked out.” Mrs. C. spoke about making sure her family pictures were in order. “Gosh, I started going through my pictures, you know, picture albums. I want to make sure they are straightened up for my sons. Really, my youngest is the only one that cares.” Some of the participants did not want to be a burden on the children; therefore they made sure financials and wills were in order. Others were more concerned about objects, such as photos or knickknacks. Mrs. C. also had a great deal of antiques and wanted to make sure of who got what, so that no arguments would occur after her death. She said, “It would kill me if the boys didn’t get along after I’m gone. I’m taking care of that now.” Not all participants spoke of planning ahead and in one case, the interviewee said they purposely were not going to plan. Mr. E. said, “My son has already sold off my truck and car. I’ve moved out of my house. I don’t have much left. He (son) can figure out what to do with the stuff after I’m gone. I’m not doing anything else.” Clearly, Mr. E. was bitter about moving into the skilled nursing facility. Mr. E. had been very active as a younger man and enjoyed the outdoors. He had also been a skilled woodworker and enjoyed using his hands. He did express that he knew his son had done the right thing by putting him in the facility. Mr. E. was exerting what control he had over his life by not planning ahead in regard to giving his possessions to his family and friends while still alive. For other participants it seemed that by planning they felt in control. Participants such as Mr. S., who immediately called his financial advisor, seemed to want control and to do what he/she could to make life easier for his/her children. Detachment/withdrawal. At least three of the participants spoke of detachment or withdrawing from others or activities that had been a part of their lives. Some of them withdrew from routine activities such as church. Mrs. L. said, I used to go to church every Sunday and was really involved. I was part of the Alter Guild, was a Eucharistic Minister and in the Ladies Society. They (the church) bring me communion once a week. That’s good enough.
Mrs. P. talked about all of the social activities she used to be involved in as well, Oh, gosh, I used to be gone all the time. I went with my friends to the symphony, was part of a book club, went to the Aronoff [a local theater] to plays, went to lectures on 56 history, I love history, and all sorts of stuff. I don’t do hardly any of that stuff any more. It’s not that I can’t go. I’m well enough to go; I just don’t feel like it. I do what I feel like and that’s it.
Mrs. P. also commented on how many things aren’t as important to her any more: “A lot of things just aren’t important now. I particularly don’t want to see a lot of people. I want to be alone, but then, I don’t want to be alone. I really don’t know how to explain it all.” Finally, Mr. M. said, “I just want people to leave me alone. I’m fine here in my room. If I can go out and smoke and watch TV that is good enough for me.” Withdrawing/detachment seemed normal for these participants. None of the interviewees expressed any alarm in their lack of finding enjoyment in activities they once liked. It can be more difficult however, when the choice of detachment is not the idea of the dying person. In the case of Mrs. A., some of her friends chose to withdraw from her. She commented, “You know, it really hurts when you care for people and they drop you. One of my best friends just never visits. She told me she couldn’t handle me dying.” The stigma of death can be difficult for the dying. It can be isolating and lonely. Holding on. The final theme of living while dying was one of holding on. This theme focuses on the interviewees who were holding on in order to participate in an event or to see a family member again. In the case of Mr. B., he paints and is hoping to enter one of his pictures in an art show. He said, “This spring there is going to be an art show here. I’m hoping to show off some of my coloring. “I don’t know if I’m going to be around, but I’m sure going to try.” Another example is Mrs. L. She has family living in Germany and is hoping to see them one more time. She said, “My granddaughter lives in Germany. She will be home at Christmas. I haven’t seen R. for two years. I plan on being here, but you never know. I’m going to try my hardest to hang on.” Another comment was: “I hope I make it to at least Thanksgiving.” Several peopled mentioned holding on until the holidays or special birthdays. Specific Aim 3: To better understand how the dying individual foresees the dying process for her or himself and how she/he might articulate their needs as she/he prepares to die. What do you foresee or expect about your process of dying? The dying process represents the last stage in life when people proceed through changes leading to death. For some individuals, this process can be rapid and relatively benign, and for others death can be protracted and difficult. Most people choose hospice in order to die a less stressful death and be pain free. Hospice cannot guarantee a pain free death; physically, emotionally, or spiritually.
57 However hospices’ goal is to help the patient die as pain free and as easy as possible. When considering the dying process, one must realize that the individuals who are going through the process are still living as they are dying. Therefore, those who care for the dying, hospice and family members, can only attempt to reduce the difficult aspects of dying and also attempt to improve the quality of living while dying. The process of dying. When asked about their expectations of the dying process four major themes arose: 1) not knowing what to expect, 2) no fear, 3) knowing what they don’t want and 4) relief. Not knowing what to expect. When asked about what they think the dying process will be like, many of the participants responded much like Mr. G.: “I don’t know what dying is going to be like. I don’t know what to expect.” Mrs. L. said: I don’t really think about it (dying). That’s one of those things you don’t really think about. But really, I have no idea what it is going to be like. I was there when my husband died. He just sort of stopped breathing and he was gone. It was peaceful. Of course I knew he was dying. He was in the hospital.
Mrs. C. said, “I don’t know what dying will be like. I can’t even imagine it.” Mr. R., who was the closest to death commented, “I don’t think about the process of dying, period. It is going to happen. There’s nothing I can do to change it.” Some of the interviewees commented that being asked about the process and their expectations was the first time they had really thought about the actual event of dying. Mrs. P. said, “Hmmm, I’ve really never thought about the process before. I have no idea what it will be like. Mrs. J.’s comment was, “I’ve never thought about that (the process) and don’t want to. I have no thoughts about what it will be like.” No fear. While many of the interviewee said they had not thought about the dying process, many of them did comment that they didn’t fear death. Mr. B. said, “I don’t really think about dying but, I don’t fear death.” Mr. K.’s comment was: For me, dying is just another stop on the journey. I don’t have any fear of death. Just like life, whatever is going to happen will happen. How it happens is not up to me and I just accept it. It doesn’t really bother me and I have no fear of it (death).
Mrs. L. said, “I have no fear. God will take care of me. I plan on going to Heaven.” After saying that Mrs. L sort of laughed and said, “I guess that’s where I’ll be going. I’m no saint, but I tried to live a good life.”
58 A few other participants mentioned their religiosity in helping them have no fear of the dying process. Mrs. M. commented, I’m right with the Lord, and I’m ready to go anytime He wants to take me. I’m not afraid to die. No, I have no fear. I’ve talked to my pastor too. He told me that I have faith and have nothing to worry about. I’m set, as far as I’m concerned. The good Lord can take me anytime He wants.
Mrs. J.’s comment was, “I’m a good Catholic and I think I’m going to Heaven. It helps me not to be afraid (to die). Sometimes I worry if I’ll go to Heaven. That I try not to think about.” Knowing what they don’t want. While most of the participants were unable to express what the process of dying might entail, almost all of the interviewees were able to talk about their concerns regarding the dying process. Most of all they didn’t want to be in pain and secondly, they didn’t want it to be a long drawn out process. As Mrs. M. said, “The one thing I do know is that I don’t want to be in pain at the end. I don’t fear the end. I fear pain.” Mr. E. said, “I don’t want to be in pain. I’ve see friends die of cancer. To me, that is a terrible way to go.” Other comments were: “I don’t care about dying, I just don’t want to be in pain.” “My only fear is pain. I don’t want to die in pain.”
Mr. K.’s comment was: “I’ve been in pain. I know pain. I have a defibrillator. Man when that thing goes off it’s liable to take your fingernails off. Talk about pain! I don’t want to be in pain when I die. I want to go out peaceful.” The other subject that tied into the theme of knowing what is not wanted was the idea of lingering. Most of the interviewees talked about not wanting a long protracted death. The participants expressed worry that a long drawn out death would be difficult for their families. As expressed by Mr. G., “I don’t want a long drawn out affair. It is going to be hard enough on my wife and family.” Mr. R.’s comment was: If I’m gonna die just let me die. I don’t want to just hang around for weeks waiting to die. I don’t care about me, but it’s hard on the wife and family. I can’t do anything. Just let me die.
Mrs. L. expressed that lingering on was her biggest concern. “I don’t want to hang on. When it is my time. I just want to go.” Finally, Mrs. A. said: Golly, there is a woman that has been about to die for over a month. Her family lives out of town and they have been here, I don’t know how many times, thinking it will be the last time they will see Mom. She keeps on living. It is just terrible for the family. I
59 don’t want that to happen for my family. You know B. (her son) is in Europe all the time. I don’t want him to go through that. I want it to be quick and painless.
For most participants it proved to be much easier to express what they didn’t want than what they wanted. Most of the interviewees had definite ideas concerning how they did not want to die. Additionally, many of the participants mentioned worrying about becoming a burden to family or how it would be difficult for the family members to watch the interviewees suffer. Relief. Finally, some of the participant talked about how death might be a relief, a relief for them and their family. As stated, all of the participants were under hospice care, however only Mr. R. was close to death. The interviewees had time to contemplate what the dying process might entail. As Mrs. L. said, “I don’t know. I suppose dying might be a relief. I won’t have to worry about not being able to breath.” Mr. K. also expressed a possible sense of relief. He said: With this defibrillator in me, I don’t know, death might be a relief. Don’t get me wrong. I don’t want to die. But, worrying about setting this thing off can get old. I can set the darn thing off just going to the bathroom.
Mr. G., who has been dealing with Parkinson’s Disease also commented on how it might be a relief to die. His comments were: I’ve had enough of this darn stuff. I’ve had a thing put in my head to help with the tremors (from Parkinson’s) my feet and legs go numb now and I can hardly walk. I’ve had surgery on both my shoulders. I have to use that damn walker to get around. I gave up farming a long time ago. But, I still like to oversee things and I can hardly do that anymore. Life is a struggle now. I think I might feel relieved when I die. Oh hell, I don’t know.
Others commented that it depended on what the end of life might look like for them and how that might play into a feeling of relief. Mrs. J. said, “If I’m in pain, it might be a relief to die. Mr. E. commented, “I’ve lived a long time now. If I get more to where I can’t get around. You know, can’t walk or don’t know anybody. Then I’ll be relieved.” Mrs. J. said, “On my bad days. When I’m feeling sorry for myself. I think, if I could just go ahead and die. I’d be better off.” Mr. M., who is dying of cancer in a skilled nursing facility, concurred with the others: “I’m in pain everyday. I’m ready!” Articulating one’s needs. Asking the participants about their anticipated needs during the dying process was much like asking them what they needed as they died. Many of them
60 responded that they had no idea, since they had never experienced dying before. However, upon further probing, some of the participants were able to convey some of their hopes and wishes. The themes that developed during this area of questioning were those of 1) peacefulness, 2) being alone/not alone and 3) comfort. When asked how these needs we will be conveyed, most of the participants explained that they had already expressed their desires to their family. Most of the responses were like Mr. K.’s: “I don’t need to tell my family my needs. They know me.” Mrs. J. also stated: “My family will do the right thing by me. I’m not worried.” Peacefulness. Mrs. A. said, “I’ve already told my kids I hope I die in peace.” When asked how she planned on that happening, she further explained, “My kids are very different and they can get into it with each other. I told them no arguing over my deathbed. I want peace and harmony.” Mr. R. who was living at home said “I just want to lie down on that couch over there. I want it (dying) to be nice and peaceful. No fuss. I’ve already told my family that.” Mr. G., who also hoped to die at home said, “I’m hoping it is nice and quiet. No commotion.” None of the interviewees spoke of existential peace, peace of mind or righting past wrongs. As highlighted in the above quotes, the people who spoke of a peaceful death all talked about their physical surroundings or family members getting along with each other. Being alone or not alone. All but one participant said they would rather die with family and friends present than alone. Mr. G., when asked said that he would rather die alone. His comment was, “I want to die alone. I don’t want anybody around. If I had it my way, I’d just drive my tractor away and never come back.” When asked if Mr. G had told anyone of his wishes he said no. Mr. G. further explained that it is difficult to talk to his wife and family about his wishes. “My wife gets upset when I talk about this stuff (dying). I want to die alone to make it easier for her.” The idea of dying alone is unusual for most people. It is interesting to find a person so adamant about dying alone. He felt no need to have others present to comfort him. His biggest concern was the wellbeing of his wife. Whether Mr. G will get his wish is another story, as most family members feel it is of utmost importance to be present at the moment of death. Other participants spoke of the comfort they would receive by having their loved ones with them during the dying process. Mr. S. said, “Yeah, definitely, I want my most loved ones with me and not to be alone. Yes, I want my daughters with me.” Mr. B.’s comment was, “Yes, I think I would take great comfort in having my wife and kids with me. Oh, and also Pete (the dog). I can’t forget about Pete.” Mrs. J. also expressed the desire to have family present. Her 61 comment was, “No one should die alone. So I really want my family surrounding me when I die. Mr. E. also commented about not dying alone: Sure, I think I want someone with me. It just seems so lonely to die by yourself. I think it would be a comfort knowing someone is with me. On the other hand, you sort of come into this world on your own; I guess it’s okay to go out alone.
Other comments were: Mrs. P.: Yes, even though I’m not close to my son, I hope someone is with me. Mrs. C.: Most definitely I want someone with me. But you never know what is going to happen. Mr. K.: Yes, I hope my wife is with me. We’ve been through a lot. She takes such good care of me. I can’t imagine that she wouldn’t be there.
It seems the idea of being surrounded by loved ones also helps to combat any fear a person my experience during the dying process. Mrs. L. expressed that concern, Right now, I’m not afraid to die. But when the time comes it might be a scary thing. I definitely want my family with me. I want to be able to reach out and touch someone if I get scared. Especially, if I’m having trouble breathing, that’s my biggest fear. Yes, it would be a comfort to have someone with me.
Mr. S. also expressed some concerns about being fearful while actively dying. “I don’t think I’ll be afraid to die. But, you never know. I’ve never done it before! In case I become afraid, it would be nice to have my family with me.” As shown by the comments, the majority of participants showed the need to be with family when they died. Most people believe that no one should die alone, and this belief was demonstrated by the participants expressed wishes to have family present at the moment of death. Comfort. Much like the idea of peacefulness, the idea of comfort is a very subjective and individual construct. One person may believe that comfort for them is to be surrounded by warm blankets, have soft music playing, and to hear raindrops falling on the roof. Another person may say they would be claustrophobic wrapped in warm blankets and want complete silence. When the participants were asked about comfort while they were dying most people had their own wishes and desires. Mr. R. was quite adamant about what comfort was to him. He said, “I want to be on my couch so I can see my yard and watch the birds. I don’t need nothing else.” Mr. S.’s idea of comfort was to be at home, in his own bed with music of the big band era playing. He said:
62 I want to die at home. I get great comfort at home, surrounded by my books and things I have collected over the years. To die in comfort for me, would be to be in my own bed. Maybe have some music on, have my family surrounding me. Not be in pain. That would be perfect. The only other thing would be to have one last beer.
Mr. B.’s idea of comfort was to have his dog in bed with him. He said, “Pete gives me great comfort. There is nothing like snuggling up with your dog. I want Pete with me when I die.” Mrs. A. also talked about having music playing when she died. She said, “My husband and I used to go to the symphony all the time. I would like to have some classical music playing while I die. Something soothing. My Ali (her daughter) knows what kind of music I like. I’ll tell her to pick something out for me.” Mr. K.’s thoughts about comfort were having someone just talk to him. He said: I would like to have my wife just talk to me. Talk about the times when we first met and the things we used to do before I ended up here (bed bound). We used to have some great fun. I fixed up old cars and we used to go to all the cruise ins. In fact that’s what I do now to make me feel better. I think of one of my cars that I rebuilt and in my mind I rebuild it again. I think about this certain part and where I got it and then what I need to do next. It settles me down to do this when I get a little stir crazy.
A few people mentioned that being wrapped in favorite blankets would bring them comfort. But many of the participants had a hard time articulating what comfort meant to them. Like Mr. G. said, “Golly, I don’t know what might be comfortable. I won’t know until I get there (dying).” However, those who did know what comfort meant to them were very specific and each form of comfort was individualized. Aim 4: To explore what it means to the dying individual to “die a good death.” What would you consider “dying a good death” for yourself? The idea of a “good death” has been known to society for hundreds of years. But what is meant by a good death? According to the Institute of Medicine, “[A] good death is one that is: free from avoidable distress and suffering for patients, families and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards” (Emanuel & Emanuel, 1998, p.21). Even in this definition there is a confusion of terms, with decent and good death being used interchangeable. Additionally, like many definitions, it gives a general direction but is rather vague. In more general terms, a good death is described as: a death that occurs at home, with the support of hospice, and surrounded by family. A death in the intensive care unit is labeled as a “bad death.” Regardless of definitions, or the general public’s perception of a good death, what does a good death mean to an older adult, already in hospice care, already 63 dying? In exploring the concept of a good death the participants expressed themes of: 1) dying while sleeping, 2) sudden death and 3) no suffering. A number of the interviewees also talked about what it might mean to die a 4) bad death. Dying when asleep. When asked, many of the participants had never thought about or heard of a good death. Many of the participant’s first response was similar to Mrs. A.s’, whose comment was, “I have a hard time thinking any death is a good death.” But, once probed a little further, and allowed to think more in-depth about a good death, many of the interviewees discussed dying in their sleep. Mr. G.’s comment was, “A good friend of mine died in his sleep. If you’re gonna die, I guess that’s the best way.” Mrs. C. also commented: “I hope I just die in my sleep. Go to bed one night and not wake up. I think that is the best way to go.” Mrs. L. also commented on dying in her sleep: I guess best way to go would be to just not wake up. That’s what I’m hoping for. I wouldn’t even know what happened. I don’t think. Just go to bed and sleep and not wake up. Yep, that’s what I want.
By far, dying in their sleep was the number one way most of the participants wanted to die. Of the participants, eleven of the thirteen people interviewed mention dying in their sleep at some point in the interviews. The only people who did not mention this theme were Mrs. A. and Mr. B.: they were more interested it death coming suddenly. To some, dying in one’s sleep was associated with no pain and suffering and prevented them from knowing of their impending death. Mr. K. said: Good death? Well, an ideal death to me would be to go to bed at night and not wake up in the morning. In a nice warm bed. Well, you’re not in any pain. You don’t have any knowledge of it; you’re asleep. Good way to go.
Mr. B. agreed that dying in his sleep would be a good death. He also mentioned that by dying in his sleep he would not know that death was coming. Mr. B. revealed, “By dying in my sleep I won’t know it is happening. No pain and no fear.” In describing dying in one’s sleep as a good death, many of the participant, like Mr. G., knew someone who had died in that manner. To further illustrate, Mrs. M. commented: My mother died in her sleep. She had it rough as a young woman, when she was first married she caught her dress on fire while cooking and was badly burned.
She recovered from all of that and lived to be almost 90. Then she just didn’t wake one morning. That is the way I want to go.
64 Mr. K. said, “Yes, a friend of mine died in his sleep. That is the best way to go.” Mrs. L.’s good death would be: When someone just fades away. When you’re sick enough to die, so that you’re out of pain and misery, and your family isn’t suffering either. That’s a good death. As quick as possible, no long extended, wait.
These examples illustrate that many older adults believe that a good death would be to die in one’s sleep. Some of the participants also indicated that they hope to have no knowledge of their impending death and by dying in their sleep they could avoid that knowledge. Sudden death. The second way to a good death as explained by the participants was dying suddenly. Dying of a heart attack was perceived as “good” because it resulted in a quick death. Participants described why a quick death was good. To some, a quick death minimized the time spent in pain or suffering. Mr. M.’s comment was: “Oh, the best death there is, is just that you have a heart attack and you die. That’s the best one. Because there’s not prolonged suffering and stuff.” Mr. G. also comments on a quick death. He said, I had a couple of friends that just dropped over dead. Just like that. (He snapped his fingers). Dying in your sleep or dropping dead, those are the two best ways to go. No pain or suffering for you or your family.
Mrs. A. also talked about when someone has to die it should be quick. She said: My brother died last week at my house. He had come down to take care of me, since I have been in the hospital. Our sister tried to call him to check on me and to see how he was getting along. She couldn’t get ahold of him so she called me. I called my son, B. and told him to go check on him. When B. got there he found my brother at the kitchen table slumped over. He had gotten himself a beer and had the newspaper out. Now to me that is a good death. Quick, no suffering, he had a sip of beer and was reading the paper!
Mrs. J. also commented on a quick death as being a good death, but she shared concerns about how hard a sudden death is on family. She commented, I think the best way to die is sudden. Be here one minute and gone the next. There is no thinking about, no pain or suffering for the person. Of course it is hard on the family. My husband died that way. He came home from his mail route, told me he didn’t feel well, sat down and died. It was hard on me. But, in the long run, it was best for him. He didn’t linger on being miserable. He couldn’t have stood that. But boy was it hard on me. I’m not sure I ever got over it.
Minimal suffering. Some of the participants spoke of a sudden death as minimizing the time of being in pain or suffering. Even though the interviewees were aware that death by a
65 heart attack might mean being in pain initially, it would be a quick death and not a prolonged, slow, suffering death. Mrs. C. related this story: For me, a happy death would be a heart attack. Because it is quick as opposed to a long illness like people who have cancer and live for – I don’t know – Like my mother lived on her back in a nursing home for her last eight years. I think that was tragic.
Finally, Mrs. M. related the story of her father’s death: My father spent more than the last 20 years of his life bedridden. There were fourteen of us, twelve boys and two girls. The boys of course were busy in the fields farming and some of them got married and left. But the two girls, we stayed home and took care of him (dad). The two of us, and my mom, took care of him for those 20 years. We changed his sheets twice a day and so on. He never had a bed sore in those 20 year. He eventually died of course. I know that he was just miserable for those 20 some year. Quick, that is the way I want to go. None of that lingering on, not being able to take care of myself.
For most of the participants suffering meant lingering in a state of pain or being reliant on others for their self care. It also seemed as if the interviewees were willing to endure a short amount of physical pain if it meant that their life would end. As stated earlier, despite probing by the researcher, none of the participant spoke of mental pain or anguish over having unsettled business or needing some type of closure in their life. A bad death. In describing a bad death, much like suffering, most of the participants cited being in pain, a prolonged course of dying and being dependent on others. Participants used many of the same terms in their descriptions of a good or bad death. Different reasons emerged for how these ideas contributed to a good or bad death. Those participants who identified suffering as a bad death were asked to explain why. To some, “suffering meant being dependent on others. One participant, Mr. E. explained how suffering to him meant being dependent: Just laying and suffering or not being able to do something would be bad. My aunt, she couldn’t feed herself. She couldn’t do nothing. Then toward the end, they even had to feed her intravenously to keep her alive.
To others, suffering equaled being in pain, and pain meant a bad death. Mr. K. related this story regarding dying in pain: My mother seemed to suffer at the end. To me, she had a bad death. She was losing her legs from diabetes, and she was in a lot of pain, or at least she felt like she was. She was in a coma, but she would moan all the time. Especially if anybody touched her, especially her legs. So you just knew she was suffering.
66 Other participants, like Mr. B., felt being hospitalized was a bad death. His said, A bad death to me would be to be stuck in a sterile environment with strangers who are poking and prodding and whose sole function is to keep me alive. I don’t want that. No more hospitals for me. I want to die here in my home, comfortable.
Mr. M. concurred with Mr. B., saying:
Being hooked up with those monitors and then laying there for days and stuff and you hurt; you can’t really complain, you can’t do nothing. That’s a bad way to go. I’m in enough pain as it is. At least here I can move around, go have a cigarette, get outside and get some fresh air.
Mr. S., who at the time of the interviews was in a rehabilitation facility, said this about a bad death: I’m living a bad death. It can’t get much worse than this. I’m in pain, in diapers and really can’t do anything by myself anymore. I’m living my worst nightmare. When I first got my diagnosis I wanted to go to Oregon and die on my own terms. Physician assisted suicide. That’s what I wanted. I didn’t want any of this. But, I let my doctor talk me into fighting the cancer. Agh…look at me. I hate this. But, here I am. I can’t change things now.
Fortunately, for Mr. S., with the help of hospice, he was able to leave the rehabilitation facility and die at home. Interestingly, some participants’ views of a bad death had similarities to the descriptions of good deaths for others. For example, Mrs. C. said: I wouldn’t want a quick death, like a heart attack. I want a death that isn’t too painful, but gives me some time, at least a couple of days, to get some things in order.
Mr. K. also talked about not wanting a sudden death. Even though he thought dying in one’s sleep was the best way to die, he wanted to be sure and have time to make peace with his family and God. His comment was: I don’t want to die quick, without knowing it was going to happen. I want to have some time to make things right. I was no saint that’s for sure. I want to make sure I’ve made peace with God and my family. I started going to church with my second wife. I’ve asked the Lord for forgiveness. I just want to make sure I’m right with God and my family.
So what is a good death? What does dying a good death mean to practicing clinician as well as to patients? Does it even exist? As illustrated by talking to these participants it is evident that there are common themes to both a bad death and a good death. However, a good death is very individualized and high influenced by social relationships and cultural, religious 67 and historical factors. Many individuals in our society have been shielded from the process of dying, yet it is assumed that everyone should have an idea of how to die.
Summary Overall, one of the results of this study points to a need for much better communication between physicians and older patients in regard to end-of-life care. As pointed out, the literature shows that doctors are often not given proper training to have clear and meaningful conversation regarding end-of-life care. Clearly, in the cases of Mr. K. and Mr. R., greater levels of compassion and skill could have been used in communicating the transition to hospice care. Second, hospice organizations need to do a better job communicating their modes of care. There are still many myths regarding what hospice does and doesn’t do. Whether it is the job of the physician, a social worker or the hospice organization to fully explain the transition to hospice care, is not clear. Regardless, people caring for older adults should be more knowledgeable about hospice. Finally, the good death is attainable. However, everyone must have the opportunity to talk about his or her wishes. A good death is seen as quick, with no lingering and pain free. This is attainable, if conversations are held defining the needs, wants and goals of care for each person. The conversations need to be started early and continue as goals of care transition to the final stages of the life course.
68 Chapter 5: Discussion The goal of this exploratory study was to describe the experiences of adults, age 65 and older, who were in hospice care, waiting to die. One of the findings of this research was that the individuals were not necessary waiting to die. Instead, many of them were living until dying. This concept, living until dying, will be addressed in this chapter as well as other insights from participants with regards to existing research on dying individuals. Specifically, it will consider the life course perspective and dying in later life, including areas that stretch the life course perspective into new directions. Furthermore, important issues regarding participants’ lack of knowledge about hospice and possible solutions will be addressed. Additionally, the need for better communication between patients, families and physicians will also be discussed. Finally, this chapter will address the limitations of this study as well as new areas of consideration and future research. The Life Course Perspective As mentioned in chapter 2, the life course perspective emphasizes the interdependence of human lives and the ways in which relationships both support and control an individual’s behavior. In the United States, attention has been paid particularly to the family as a source of support and or control (Elder, 1994). This also played out in the lives of the participants in this project. As Elder wrote, “Human lives are typically embedded in social relationships with kin and friends across the life span. Social regulation and support occur in part through these relationships” (p. 6). The life course perspective is evident in how the participants responded to questions regarding the end of their life. The following section considers socio-historical and geographical location, timing, linked lives, and heterogeneity and variability. Sociohistorical and geographical location. All of the interviewees grew up and lived in Southwest Ohio, most of them living in the Greater Cincinnati area. The geographical area influenced the type of work available and the economic prosperity of the region. The men in the study represented a wide variety of employment. A number of them worked for General Electric, one was a teacher, one was a farmer and some worked for Proctor and Gamble. Those working for General Electric and Proctor and Gamble worked in middle management. The women in the study were either homemakers, secretaries or farmers’ wives who worked with their husbands on the farm. Given the age of the participants, the majority of participants were born during the time of the Great Depression, but the men were too young to serve in World War II. People born at 69 this time are known as the Silent Generation (McIntosh-Elkins, McRitchie & Scoones, 2007). Some of the men served in the armed forces during Korea, but none of them saw battlefield action. All of these factors influence how a person reacts to adversity and authority. For the most part, people born during this time are known as hard working, with a “stick to it” notion and to bow to authority (McIntosh-Elkins, McRitchie and Scoones, 2007, p. 240). Because of the historic and geographical location of the participants in this study, it was not unusual that they would not have open dialogue about dying or to question treatment from physicians or other health care personnel. All of this points to Elder’s consideration that the past indeed shapes the future as it relates to Elder’s concept of linked lives, specifically how people’s experiences are shaped by those around and also by experiences of previous generations. It will be interesting to see, however whether younger generations will become more open to talking about death and dying. With the advent of Death Cafes, “Death over Dinner” and other forums in which talking about death and dying is welcomed, it seems as if talking about death may be becoming somewhat a less taboo subject with younger generations. This may allow more open conversations within families with regard to end-of-life wishes, planning and implementing advance care directives for the future. The younger generation and their ease of talking about taboo subjects, such as death, may open up better communications between patients and physicians. Currently, there is reluctance among physicians to discuss end-of-life decisions with patients and family members. Physicians are unsure if the patient is ready for the conversation and often the patient is waiting on the physician to open the dialogue (Cherlin, Fried, Pregerson, et al., 2005). Perhaps the younger generations will no longer be willing to play this game with physicians and see the need to speak openly and to question the physician. Timing of lives. Even though the interviewees may not have spoken directly to family members or physicians about their impending death, most of the participants expressed a sense of readiness or acceptance of death. They felt they had lived their lives, had worked, enjoyed a family and accomplished what they had wanted in their lives. Surprisingly, none of the respondents spoke of wishing they had more time or of goals they did not achieve. As theorized by Elder, these individuals were exhibiting “on” time dying as prescribed by societal norms and expectations. If more of the interviewees were younger, ages 65 to 75, the attitudes of the dying person may have been different. Indeed, they may have had unfulfilled goals or a desire to live longer and may not have been as accepting of death as these participants. 70
Heterogeneity or variability. According to Elder (1975), each person in a cohort brings in different social dimensions such as gender, social class, ethnicity, and religion. There was a mix of men and women in the study and as mentioned, most were of upper to middle socioeconomic status. Religion did not often come up, but when it did, most of the interviewees, had a Christian background. One person considered himself more Buddhist than Christian. Perhaps if the interviewees had come from different ethnicities or religions, answers about death and dying may have been quite different. While there were similarities in the answers to the questions of the research, which related to themes, it should be noted that each person brought her/his own life story to the interviews. As noted by Elder, the social relationships with friends and family across time helped to shape each participant’s views on death. Linked lives. The concept of “linked lives” describes the notion that people are embedded in social networks and are connected. Participants in this study gave examples of how friends or family members had previously died. Whether those were “good” deaths such as dying in their sleep, or “bad” deaths which were long, painful and lingering, influenced a person’s understanding of how death happens and their own expectation of death. Some of the deaths the interviewees elaborated on were those of friends. Other deaths were occurrences the participant had experienced with a parent or other family member. These encounters relate to the concept of linked lives, which suggests an individual’s life circumstances are interconnected. Participants also demonstrated the relevance and importance of linked lives in the ways they talked about their upcoming death in the context of their marital and family relationships. In instances where the participant had living spouses, their end-of-life decisions were often based on protecting their spouse. Many of the participants mentioned wanting a quick death because it would be easier on their spouse and family members or a wish to not suffer because it would be hard for family to witness. A few of the interviewees also mentioned their children and grandchildren and how the interviewee’s death might be a burden by interfering with activities or work of their family members. These examples demonstrate the life course principle of linked lives, which emphasizes the interconnectedness of lives across generations by family. Key to this idea is that lives are embedded in relationships with people and are influenced by them. Human agency and personal control. The life course posits that people are active agents within their own lives. The people who placed themselves into hospice care were in control of their lives. Mr. B. made his decision to go into hospice without consulting his family. 71 It was his decision and his decision only. Other participants exhibited personal control by planning ahead. Mr. S. called his financial advisor, others planned their funeral and some made decisions as to what family member was to get certain personal items. All of these examples show that individuals were able to make choices about their own lives. However, it should also be noted that some of the interviewees had very little agency in the decisions being made regarding the medical treatment at the end of their life. The people placed in hospice without discussion from their family or physician had no control of the decision to be placed in hospice. Mr. M., the youngest participant, experienced cumulative disadvantage over the life course in regards to health (Willson, Shuey & Elder, 2007). He had a sixth grade education due to his family constantly being dislocated, his employment was intermittent, finding only seasonal construction job where he contracted skin cancer but had no insurance to get medical help. He developed a drug habit, and was in prison when he finally was able to get treatment. At the time of the interview he was living in a very poorly run skilled nursing facility with little control of his medical care or activities of daily living. Furthermore, Mr. M. was resourceful, which brings to mind Baltes and Baltes’ (1990) theory of selective, optimization and compensation. The Baltes and Baltes model describes a general process of adaptation whereby individuals are likely to engage in throughout life and is essential for the achievement of higher levels of functioning (Baltes & Baltes, 1990). The model takes the view that through all stages of human development individuals manage their lives successfully through the developmental regulation processes of selection, optimization, and compensation (Freund & Bales, 1998). Selection refers to an individual focusing attention on fewer, more important goals. In the case of Mr. M., his goal was to be able to wheel himself outside everyday. Optimization involves engaging in goal-directed actions such as being persistent, acquisition of new skill or resources, and practice. When Mr. M. first arrived at the skilled nursing facility he was not able to wheel himself outside. Through hard work, practice and learning how best to use his wheel chair he was later able to wheel himself outside. Finally, compensation is the ability to maintain a given level of function in the face of loss and decline by compensating for those losses. If Mr. M. loses functional abilities, he may need to ask for help in order to successfully go outside everyday. The theory of selection, optimization and compensation can be applied to many of the interviewees in this study as they have coped with the loss of physical decline.
72 To summarize, the life course perspective is “a sequence of socially defined events and roles that the individual enacts over time (Giele & Elder, 1998, p. 22). These events and roles do not necessarily proceed in a given sequence, but rather comprise the total of a person’s actual experience. The interaction of the person within their social roles, family roles and personal interactions through linked lives will shape a person’s perspective on death and dying. One of the strengths of the life course perspective is the acknowledgement of people’s strength and capacity to change. This concept of the ability to change and adapt to a person’s life circumstance played out in a number of interviewee’s lives. The idea of change and adaption was especially salient for those individuals who lived in skilled nursing facilities where much of their personal agency had been lost. However, their views on death and dying may have been shaped by experiences that occurred throughout their life.
Understanding about Hospice Although the purpose of the study was not to explore people’s understanding of what hospice is, the topic came up on its own. That people could be enrolled in hospice but did not make the choice themselves or did not understand what hospice was, was a cause for concern. Considering that hospice has been a part of end-of-life care since 1974, the lack of understanding of hospice by some participants was unsettling. However, studies have identified several barriers to hospice use. Oftentimes family members believe that a referral to hospice means giving up hope (Yancu, Farmer, & Leahman, 2010). Physicians are often unwilling to discuss hospice with individuals and family members due to the perception that they were no longer willing to care for the patient. Physicians also cited concerns of lack of communication amongst family members when recommending hospice (Ogle, Mavis & Wang, 2003). Additionally, the lack of communication between family members and the loved one in hospice was also disturbing. The fact, that participants were placed in hospice by family members and not told why they were in hospice would seem to be a violation of the patient’s right to know about their own health. The participants placed in hospice without their knowledge, however, did not seem upset about being placed into hospice. They felt it was just a matter of their family taking good care of them rather than an issue of being uninformed. It should be noted, however, that family dynamics play a part in the communication between family members. The lack of communication may reflect long issues within the family in regard to communication. As noted in the context of linked lives in the life course 73 perspective, patterns that develop in yearly life can continue to play across generational boundaries. Families not willing or able to discuss difficult topics may skirt the issue of dying with a parent. Additionally, it must be pointed out that the person’s placed in hospice without their knowledge were already in skilled nursing facilities where limited personal agency occurs. The family may have felt it one more action they could do to help their parent without ever thinking of the agency of their parent. The general public still has a number of misunderstandings about hospice care which include the ideas that: 1) hospice is only for people in their last days of life, 2) hospice is a place, 3) hospice is only for cancer patients, 4) hospice means giving up (Doka, & Tucci, 2009, Florida Hospital, 2016). Additionally, some physicians and hospitals don’t refer patients to hospice until the end is imminent. It has been reported that physicians often feel hospice interrupts their own care of the patient and, consequently, they don’t want it to appear as if they are giving up hope; hospitals don’t want to give up their reimbursement (Vig, et al., 2010). Perhaps some of these misunderstanding stood in the way of family members speaking openly to their loved one about placing him or her in hospice care. What many participants didn’t seem to understand through their comments is that the hospice philosophy not only cares for the patient, but for the patient’s family as well. With a prognosis of six months or less to live, hospice can provide comfort care to the patient, but also help with care giving as well as provide respite care. Many of the interviewee seemed unaware of the benefit hospice could provide their families. Mrs. E. was feeling she needed a little more help with her activities of daily living. She was trying to decide if she should make the move to the hospice unit within the continuing care retirement community. Her hospice nurse suggested she take a respite stay to see if she was ready to move there until her death, losing a great deal of the autonomy Mrs. E. was used to having. Mrs. E. had no idea that respite was a benefit of hospice. Mr. R. also expressed surprise when he was told that hospice would give his wife a break from caregiving so she could run errands. With regards to participants’ limited understanding of what hospice is, there has actually been little research regarding why people have a lack of understanding about hospice. Most of the literature concerning barriers to hospice use discusses cultural and ethnic issues in end of life care. Vig and colleagues (2010) found three reasons why patients were not enrolling in hospice. The first was the patient or family felt “not ready” for hospice, believing hospice was only for patients in the last hours or days. Others felt that enrolling in hospice meant an 74 acknowledgement of dying. Finally, some family members felt they needed to protect their own caregiving role. In other words, they were not ready to relinquish their role as caregiver to a hospice worker. More research is needed to better understand why people are not utilizing hospice in its fullest capacity. It should also be noted that hospice organizations need to begin doing a better job of communicating in regards to the benefits they can provide to the dying individual and their families. To illustrate, one person in the study was unaware that medication related to her cancer would be paid for by hospice. Another participant thought the hospice nurse came only to dole out his medication for the week and to take his temperature, a role that a home health care agency could have fulfilled. Finally, another study participant thought the hospice nurse was the nurse supervisor making sure the other nurses were doing their jobs rather than someone who was helping with end-of-life. These examples all point to the hospice patients’ lack of understanding about hospice services. In addition to more education for dying persons and their families, there is also a need to educate physicians. As noted before, participants’ comments pointed to physicians not wanting to have end-of-life conversations or lack of experience in delivering “bad” news. (Physician communication will be explored in further detail in a later section. Families also did not want to have communications about their loved one’s end of life. Many of the participants felt that their families did not want to talk to them about their wishes. Some of the interviewees had said they had made funeral arrangements but their son or daughter didn’t want to have that conversation. Hospice can provide comfort care to patients and educate both the patients and families as to what to expect as they progress on their death journey, but only if all parties are open to communication. There were certainly participants in the study who had a very good understanding of hospice. Some even placed themselves into hospice care. Interestingly, each of the participants who had placed themselves in hospice were living in a continuing care retirement community and had resided there for several years. As Mr. B. said, “You can’t live here and not know about hospice.” The participants who were knowledgeable about hospice either had spouses or friends who had been in hospice and therefore understood what hospice was and what hospice care entailed. None of those knowledgeable participants mentioned that they learned about hospice because of pamphlets they saw or programming regarding the benefits of hospice care. This underscores the power of word of mouth. It was therefore unclear whether the persons living in 75 the CCRCs actually gathered their information from formal hospice presentations and information or from other residents. Either way, it would seem, knowing information about hospice is shared widely throughout such communities would suggest that residents of CCRCs are clearly an important group with whom to supply information.
Medicalization of Death and Hospice One of the reasons that people placed themselves into hospice gave was the strong desire not to go back into the hospital. In continuing the point from the previous subsection regarding people who placed themselves in hospice, this section explores the medicalization of death. Interviewees wanted to be able to die in their own home or apartment. For participants, dying in the hospital meant being in an uncomfortable situation, unable to rest, knowing they had no chance of getting well. In fact, adults living in the United States with cancer have a roughly one in four chance of dying in a hospital and similar chance of spending a portion of his/her last month in intensive care treatment. The chances are higher with chronic lung or heart disease (Dartmouth Atlas, 2018). Surgery is typically lifesaving for younger people; operating on frail older patients rarely helps them live longer or to return to the quality of life they once experienced. Despite this potential for negative outcomes, 18% of Medicare patients have surgery in their final month of life and 8% in their final week (Lancet, 2011). Furthermore, a person with Alzheimer’s disease will very likely spend most of his/her last months in a skilled nursing facility. However, many long-term care facilities are painfully understaffed and ill equipped to care for demented residents (Byock, 2015). Less that 45% of dying persons in the United States receive hospice care at home, and nearly half of those patients are referred to hospice within two weeks of death. Hospice was designed to provide end-of-life care, but these referrals are often people on the brink of dying (NHPCO, 2018). As seen by this small study, two of the interviewees, who subsequently died shortly after the interviews, had only been in hospice a short time. Mr. R.’s hospice care was for ten days and Mr. S.’s was less than three weeks. Dying is not easy, but the ideal of dying comfortable should not be so difficult.
The Need for Better Communication between Clinicians and Patients One of the aims of this research was to learn how people in hospice learned they were dying and what that experience was like for them. In some instances, it was their physician who told them. As noted by comments from Mr. R. and Mr. K., the news was not always 76 communicated in a thoughtful or compassionate manner. Assumptions by the physicians about who should be present when bad news was delivered did not always align with the dying person’s preferences. In Mr. K.’s case the physician bluntly told Mr. K. he was being discharged from the hospital and that the physician recommended hospice care. There was no discussion between the doctor and Mr. K. about what this meant for Mr. K. in terms of quality of life or about the care he may need at home. Mr. K. was alone when the physician gave him the news of recommending hospice. Given the literature regarding the population’s lack of understanding about hospice, the physician had no idea what this recommendation may have meant to Mr. K. For example, Mr. K. may have believed he only had days to live. Mr. K.’s wife had played an important role in Mr. K.’s health care. Mr. K. may have wanted his wife present when the news was broken to him that his life was limited. The physician did not give Mr. K. that choice. Instead the doctor came in and announced he was sending Mr. K. home and recommending hospice. In the case of Mr. R., his family was present when the doctor told Mr. R. he was recommending hospice. However, unlike Mr. K., Mr. R. did not want his family present. The physician assumed that the conversation regarding hospice was one that should include the patient and the patient’s family. In many cases, including family might be the right decision. But, any time a person assumes the needs and wants of another, there is a chance of being wrong. In this case, having the family present was the wrong decision for Mr. R. Good communication between the patient and physician should be the hallmark of patient centered care. There is a great deal literature to support the lack of communication skills taught to physicians. Many of the participants echoed what Byock (2012), and Cowgill and Cowgill (2018) who noted that doctors do not have the skills to communicate the news of dying to patients with compassion and understanding. Instead, the news given was a blunt and to the point or in a setting not to the liking of the patient. As noted by Glaser and Strauss (1967), and indicated by many of the interviewees, the patient already suspected the news. The doctor’s words were just confirmation. Good communication can help alleviate fears, minimize pain and suffering, and enable patients and their families to experience a “good” death. Poor communication can result in subpar care, and patients and their families may be subjected to undue mental or physical suffering (Balaban, 2000). As indicated by the interviewees, despite the medical community recognizing the need for better communication between patient and physician in regard to delivering bad news, it is not happening. Since better communication 77 skills are not being developed in medical schools, perhaps the patient needs to learn how to better communicate there need for information. Death is still a very delicate subject for both the patient and the physician. But, the more patients feel comfortable talking about death, including their own, patients may be better equipped to ask the right questions and force physicians to discuss care at the end of life. Overall, the findings suggest that people with serious illnesses expect and want to have end-of-life conversations, and often wait for the doctor to initiate the conversation. Due to the physician’s unwillingness to have that conversation it often never happens. For some physicians the concern is that having the end-of-life-talk will reduce or take away hope for the patient. Other reasons given for physicians not having end of life conversations are difficulty in prognostication, cultural differences, and perceived reluctance of the patient or the family (Travers & Taylor, 2016). However, introducing the topic of death as reasonably early as possible gives patients more time, information, and opportunity to make the decisions they want based on their values, and place in life. Conversations about end-of-life care are among the most important interactions doctors and patients have. But, for health care providers and physicians, they may also be the most challenging. Teaching medical students and trainees to be adept at end-of-life conversations takes time, which can be in short supply during medical school and training. The result is that many physicians have been self-taught (Baruchin, 2016). However, resources and training of communication skills relating to end-of-life conversations in medical schools are improving. One of the difficulties expressed by some medical schools is finding the time in the curricula to add additional coursework or training (Cowgill & Cowgill, 2018). Furthermore, if the United States is to do end-of-life care better, this training needs to be done, especially in light of the growing population of older adults. The examples in this study only highlight a very small sample. Awareness of this lack of training in communication between dying patients and physicians needs to be a bigger concern in the health care community. Perhaps a new approach may be to educate patients how to have better communications with their physicians rather than the other way around. Clearly medical schools are finding it difficult to find time in the curriculum to teach communication and bedside manners. Maybe now is the time that community courses are held on how to talk to doctors to get the most out of visits.
78 Acceptance of dying can be key to opening communication with family members and health professionals. This can allow for the dying person to make personal and public preparations for death, and say final farewells. The acceptance of dying can also allow family members to adjust to the loss. Finally, being aware that death is imminent is often seen as one of the features of a good death.
The Good Death The question remains, “What is a good death?” One interesting outcome of this research was the little amount of time each participant had spent considering this question. For many of the interviewees, it was the first time the question of what comprises a good death had ever been brought up; most struggled to define what a good death meant to them. Most of the older adults in this study were born during a time where one did not discuss topics such as death. They were born when hard work was valued, men and women were expected to get married, and raise a family. Unless living on a farm, death was something they experienced from a distance. Most deaths took place in the hospital and were hidden (Aries, 1974). People’s parents, family members, and neighbors would die, they had a funeral, were buried, and that was probably the last time anyone talked about death until the next funeral. Aries (1976) also observed that people in the twentieth century were expected to be happy. Death was sad and ugly, therefore denied. This attitude of not discussing death can also be tied into Elder’s (1995) life course perspective and the concept of linked lives and sociohistoric timing. The interviewees where white adults of middle to upper class standing, in 1950s and 1960s where life was generally good for them as well as those around them. Death was a taboo subject. Even though most of the interviewees were not able to say what a good death might be, they certainly had opinions regarding a bad death. No one wanted to die in pain or to have a long and lingering death. Therefore, while not being able to articulate a good death, by saying what a bad death would consist of, they were also commenting on a good death. According to the IOM, a good death is one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' families' wishes; and reasonably consistent with clinical, cultural, and ethical standards” (Field & Cassel, 1997, p. 23). Almost all of the participants’ idea of a good death was to die suddenly and with no pain. Although those wishes are in accordance with the IOM’s definition, the lack of conversations regarding the interviewees’ desires regarding end of life care was very evident. Even for the 79 participants who placed themselves into hospice care, there were no conversations with family or the physician. The patient made the decision, told the doctor their desire for hospice care and told their family. When asked about conversations about the decision to go into hospice, Mr. B. replied, “I told my family my decision and they didn’t have a choice to disagree or question me.” These findings also link back to earlier sections on conversations about death. Most people still have a difficult time talking about death. Even individuals and families who are staring death in the face have a hard time talking about dying. Mr. B. made it quite clear that the decision was his to go into hospice. He wanted no discussion about it with his family. Mrs. J. mentioned that she didn’t talk to her sons about dying or her wishes about her end-of-life care. She said it was just too hard a conversation to have with anyone. Talking about death is emotional, but much like other difficult subjects, they are necessary for the well-being of the dying. Dying with Family or Dying Alone. When thinking of a good death, it is often assumed by hospice and family members that people want to be surrounded by family and friends and peacefully drift off to death. After all, many obituaries in the newspapers are written in such a manner. “Mrs./Mr. XX died peacefully at home, surrounded by her/his family.” It was surprising to learn that Mr. G. wished to die alone. He felt it would be easier on his wife and family to spare them his last moments. So often, it is easy to assume what a person might want, or to place our own wishes upon someone. Older people who die alone are commonly portrayed negatively in the academic and popular literature. Dying alone is viewed either as an outcome of anti-social behavior or the result of family, neighborhood or social services neglect. The idea that people may be exercising agency at the end of life and that they do not want attention from family or other social services is often seen as unnatural (Kellehear, 2009). When it comes to the dying individual, they should be given the opportunity to express their own wishes and agency for a good death.
Elisabeth Kubler-Ross and the Stages of Dying Because Kubler-Ross is the most famous person associated with death and dying, it is expedient to mention her insights in relationship to the participants in this study. When Kubler- Ross wrote her book, On Death and Dying, peopled believed that she revolutionized the care of dying people by making society and doctors aware of and more sensitive to the emotional needs of dying individuals. Certainly, she heightened the awareness of dying patients and helped to change the disregard for the feelings of dying people typical at that time (Friedman & James, 80 2008). When she first went to the University of Chicago’s School of Medicine and asked to speak with dying patients, the response she got from the administration was, “We have no dying patients (Newman, 2004). It was during this time that she developed her model of the five stages of dying: denial, anger, bargaining, depression and acceptance. However, her model has been highly criticized (Corr, 1993, Copp, 1998, & Doka, 1996). One common critique is that dying does not happen in a stage like progression (Schulz & Aderman, 1974). Some people may experience one or more of the five stages proposed by Kubler-Ross, but not in sequential order. What was revolutionary about Kubler-Ross is that she was talking to dying individuals. For this reason alone Kubler-Ross should be remembered as a pioneer in death and dying literature and research. Additionally, all dying patients are unique in personality and circumstances. The uniqueness of each person can play a huge role in the way an individual dies Acceptance. If asked if the interviewees exhibited any of Kubler-Ross’ five stages, denial, anger, bargaining, depression and acceptance, the one most evident would be acceptance. None of the interviewees spoke of being angry about dying. As mentioned in the findings, due to the age of the participants, most of them were accepting of their dying. No one mentioned wishing they had more time or trying to bargain for more time. On the contrary, a few like Mrs. M. said that she was “ready to go.” It could be possible that the timing of the interviews in relationship to where the participant was in the stage of dying may have influenced their acceptance of dying. However, it seems as though they were comfortable with dying due to their age as related to Elder’s ontological timing. They were dying “on” time. With the exception of two participants, most of the other interviewees were fairly early in their dying trajectory. Confirmation. Like Glaser and Strauss’ (1965) communication contexts, all of the interviewees who were aware of their dying prognosis said the news from the physician was a confirmation. Not one person spoke of being surprised with the news. This speaks to an inner knowledge that perhaps we all have in regard to our health. Most of the participants were dying of the frailty of old age; the news of dying from the physician was not shocking. For these people the confirmation of dying came with the acceptance that their life was short. Unlike Kubler-Ross’ stages, there was no anger or bargaining, just the knowledge that their life was ending. Many of the participants acknowledged that they had lived a good long life. None of them spoke of bitterness or anger or even a wish for more years. For these participants it was okay to die.
81 Limitations of the Study Although the findings of this study provide a better context for understanding of older adults (65 and over) in hospice care, the results are not generalizable. First, it should be recognized that generalizability is not a goal of qualitative research. This sample consisted of 13 individuals recruited through a purposive sampling approach, and is therefore not representative of larger populations. This study should only be viewed as exploratory in nature. Secondly, participants were targeted within a particular geographical region, the greater Cincinnati and Dayton area, which is not generalizable to other regions. Additionally, although the group of participants was variable, diversity in relation to race/ethnicity, socioeconomic status and education was limited. These participants tended to have higher household income than the general population and all of the participants were white, resulting in a selective sample. Thirdly, it should also be remembered that there were only two interviews with each participant. How the participant felt on certain days could impact how they may have answered certain questions about their death. There can be no way of knowing the impact of day-to-day health on the research. Additionally, the participants were first nominated to be apart of the study through a social worker, or administrator. This may have caused selection bias unknown to the researcher. Finally, as the sole researcher of this project, my limitations must be noted. As a component of data collection and analysis, my background and experiences may create certain biases. As in any qualitative study, the researcher must acknowledge their own perceptions of circumstances and descriptions while going through the research process. As I completed all the analysis on my own, I did not have the potential benefits that may have come from inter-coder reliability and having others directly involved in the process. Part of qualitative research is the researcher as human instrument. My reactions, communications and sense of presence may also have impacted the responses of the participants. One component of any mindful qualitative research is understanding the role of the researcher in how the participants respond and react during the interview.
Summary and Suggestions for Further Research A major find of this study was that the interviewees were living while dying rather than waiting to die. Perhaps a shift is needed in how we discuss the end of a person’s life. Perhaps rather than ask about their end-of-life plans, it would be more effective to ask, “How do you plan 82 to live out your life while dying?” “What are your hopes and dreams about the last things you wish to do before dying?” Hospice programs often ask this question, but many times it is too late in the dying trajectory for the person to be able to achieve that goal. These questions would be especially salient for older adults. Public conversations and research on end-of-life care have grown over the past two decades, yet little of the research has been focused on the dying older adult. With the growing numbers of older adults in the United States more research needs to be done to understand the end-of-life care for this population. This study was a small qualitative exploratory study with a very homogeneous population. More research needs to be done. There has been even less research documented regarding the needs and wants of older adults of different races and ethnicities who are dying. The NHPCO has documented that fewer minorities use their services (2018). Therefore, research needs to be done to understand and learn how to provide better care for these populations. Socioeconomic status may also be a factor in end-of-life care. With the exception of one individual, all of the persons in this study were of upper to middle class standing. Does end of life care differ for the economically disadvantaged? Also, do the needs and wants of individuals who have non-traditional families look different than those of traditional families? Today there are more and more same sex couples, does what they bring to end-of-life care differ from other peoples? Most of the interviewees in this study were in their 80s and 90s. Would asking the same questions to people in hospice care in ages ranging from 60 to mid 70s elicit different answers. A longitudinal study would be interesting to see how a person’s views of death might change as they age. This would allow for an analysis of data as to whether attitudes toward death change due to aging itself or nearness to death. Even though advance care planning has been pushed and widely considered an essential step toward achieving end-of-life care that is consistent with the preferences of dying patients and families there has been little research that evaluates the efficacy of these conversations (Carr & Luth, 2017). According Carr & Luth, future studies need to identify factors that are associated with productive conversations among family members, clinicians and others who may be important in shaping older adults end-of-life care (p. 7). As previously mentioned late-life death typically follows a long-term chronic illness like cancer or heart disease with many dying adults experiencing physical discomfort, functional decline, and cognitive impairment in the final weeks or months of life. Most older adults die in hospitals or nursing homes rather than at home, and many rely on medical technologies and 83 aggressive treatments that increase the length, though not necessarily the quality of their lives (Teno, et al. 2013). How do we have conversations to help avert this end-of-life scenario for older adults? A great deal more research must be done in order to understand and help older adults have the death they wish for and to possibly define a good death
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96 Appendix A: Informed Consent
You are invited to participate in a research project being conducted by me, Kim Ogle, a doctoral candidate in gerontology from Miami University. The purpose of my research is to examine the experiences of people aged 65 and over who have been diagnosed as having less than six months to live. I am interesting in learning your views on how you came to know you were dying, how you foresee the dying process, what you consider to be a “good death” and other aspects of your experience. Participation in this project involves a minimum of two interviews, approximately 45 minutes to 90 minutes each. Your participation is voluntary, you may skip questions you do not want to answer, and you may stop at any time. Notes accompanying this interview will not include information about your identity. With you permission, I will digitally record this interview to ensure accuracy. Later, I will take notes based on the recording and delete the recording. If you inadvertently include identifying information such as names of places, family members’ names, or other personal details that could identify you, such information will be removed from any stored data and pseudonyms or fictitious names will be substituted. Only the research team will have access to individual responses. Excerpts from the interviews may be used in my dissertation or other publications but will not include personal identifiers. If you have any questions about this research or you feel you need more information to determine whether you would like to volunteer, you can contact me at 513-796- 5040, or email [email protected]. If you prefer, you may contact my research supervisor, Dr. Kate de Medeiros at (513) 529-9648 or email [email protected]. If you have questions or concerns about the rights of research subjects, you may contact our reviewing body: Research Ethics and Integrity Office at Miami University at (513) 529-3600 or [email protected]. Please keep a copy of this information for future reference.
Participant Name:______
Participant Signature: Date:______
Contact Information (email) if you would like a summary of the results ______
97 Appendix B
You are invited to participate in a research project being conducted by me, Kim Ogle, a doctoral candidate in gerontology from Miami University. The purpose of my research is to examine the experiences of people aged 65 and over who have been diagnosed as having less than six months to live. I am interesting in learning your views on how you came to know you were dying, how you foresee the dying process, what you consider to be a “good death” and other aspects of your experience. Participation in this project involves a minimum of two interviews, approximately 45 minutes to 90 minutes each. Your participation is voluntary, you may skip questions you do not want to answer, and you may stop at any time. Notes accompanying this interview will not include information about your identity. With you permission, I will digitally record this interview to ensure accuracy. Later, I will take notes based on the recording and delete the recording. If you inadvertently include identifying information such as names of places, family members’ names, or other personal details that could identify you, such information will be removed from any stored data and pseudonyms or fictitious names will be substituted. Only the research team will have access to individual responses. Excerpts from the interviews may be used in my dissertation or other publications but will not include personal identifiers.
98 If you have any questions about this research or you feel you need more information to determine whether you would like to volunteer, you can contact me at 513-796-5040, or email [email protected]. If you prefer, you may contact my research supervisor, Dr. Kate de Medeiros at (513) 529-9648 or email [email protected]. If you have questions or concerns about the rights of research subjects, you may contact our reviewing body: Research Ethics and Integrity Office at Miami University at (513) 529-3600 or [email protected]. Please keep a copy of this information for future reference.
Participant Name:______
Participant Signature:______
Date:______
Contact Information (email) if you would like a summary of the results ______
99 Appendix C: Interview Guide
These questions have been informed by work done by Ira Byock, Helen Black & Robert Rubinstein and the Care Pathway of England. They form a basic guide for the interview and will not necessarily be asked in order nor will all questions be asked. Instead, they will form the basis of a guided conversation between the interviewer and participant, allowing the participant to express his/her thoughts in as full and unobstructed way as possible. In addition, the interview will stop when either the participant appears tired or after 45 minutes (unless the participant would like to continue.) Questions not addressed in the first interview will be addressed in the second.
1. Tell me a little about yourself so I can get to know you. Take as much time as you need. - Where were you born? - Were you employed? For how many years? - Hobbies, favorite things to do
2. Can you tell me about someone you know who you think had a “good death’? Why would you consider it a good death?
3. Can you tell me about someone you know who you think had a “bad death’? Why would you consider it a bad death?
4. Some people say that in the past, death was different. Do you think the way people die has changed over the years? If so, how?
5. You are now ___ years old. Did you ever think you’d live this long? Why or why not?
6. What did you imagine this time of your life would be like?
7. What has your life as a whole been like until now?
8. When did you find out that you were dying? Who told you and who was with you? Was there anyone with you?
9. What did it feel like at that moment?
10. How does it feel to know your life is limited?
11. How has that information impacted how you view your life?
12. How has that information changed your assumptions about death and dying?
100 13. How has the knowledge that you are dying impacted your view of the following: - your relationships - examining your work - your faith or spirituality
14. What is your greatest fear?
15. What do you think will happen in your life between now and when you die?
16. What do you think happens when you die?
17. Have you witnessed someone dying and if yes, how has that influenced your expectations of dying?
18. What does it feel like to be dying?
19. Do you feel in control of your death?
20. Are you ready to die?
21. How do you want to die?
22. How would you describe hospice?
23. Who recommended hospice to you?
24. What does it mean to be in hospice care?
25. What does dying a “good death” mean to you?
26. If you could paint a picture of how you envision the scene of your dying what would it look like? - Who would be there?
27. What do you believe happens after death?
28. How do you want to be remembered?
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