National Institutes of Health End-of-Life / Palliative Care Interest Group
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October 2012 Lecture by Sheeba R. Nadarajay, PhD, RN
Fellow, Pain and Palliative Crae Services, Clinical Center, NIH
“A Phenomenological Inquiry of Psycho-Socio-Spiritual Healing in Cardiac Rehabilitation Patients”


An acute cardiac event poses a potentially life-threatening situation to those involved. Little is known about psycho-socio-spiritual healing in cardiac patients after they experience an acute cardiac event. The purpose of this presentation is to discuss a phenomenological study of lived experiences of psycho-socio-spiritual healing following an acute cardiac event in a sample of cardiac rehabilitation patients. Results will describe the shock of an acute cardiac episode and the life-transforming experiences described by study participants. Data will be presented that describes how participants, when suddenly faced with their own mortality, chose life and changed their daily activities by reordering priorities and making necessary lifestyle changes. Barriers to healing included those that were self-inflicted, depression and anxiety, and lack of support. Healing was facilitated by self support, social support, mind-body interventions and cardiac rehabilitation.
For a copy of the powerpoints, please contact the NIH EOL PC SIG moderator at EOLPC_questions@mail.nih.gov



J
anuary 2012 Lecture by
Frank D. Ferris, MD, FAAHPM, FAACE
Director, International Programs, The Institute for Palliative Medicine at San Diego Hospice, San Diego,CA
.

"Palliative Cancer Care: Increasing  Capacity Globally"
Hyperlinks to information on:   IPM International Programs http://www.ipcrc.net/international-programs-home.php    or, International Palliative Care Resources Center (funded by Office of International Affairs, NCI) www.IPCRC.net


June, 2011 Lecture by Dr. Holly Prigerson , Director, Center for Psycho-oncology and Palliative Care Research, Associate Professor of Psychiatry, Harvard Medical School, Dana-Farber Cancer Institute
"Dying Better: Lessons from the Coping with Cancer Study"


This talk will examine the influence of psychosocial factors on the quality of care and quality of life of advanced cancer patients at the end-of-life (EOL).
Specifically, the effects of race/ethnicity, religious coping, EOL discussions, cognitive and emotional acceptance of death, and family caregivers' anxiety on EOL decision-making will be examined. Recommendations for how we as a nation, patients, providers and family members can achieve better quality care and life near death, and areas for future research will be discussed.

Learning Objectives 

 1. To appreciate the influence of end-of-life (EOL) discussions on patients' prognostic understanding, mental health, advance care planning and care near death.

 2. To appreciate cancer communication needs to be tailored to a patient's psychological state and cultural background for greatest positive effect.

 3. To appreciate the psychosocial factors, including therapeutic alliance with oncology staff, strongly affect the patient's quality of life at the EOL.

Holly G. Prigerson, PhD, is Director of the Center for Psycho-oncology & Palliative Care Research at Dana-Farber Cancer Institute, Associate Professor of Psychiatry in Brigham and Women's Department of Psychiatry, and Associate Professor of Psychiatry at Harvard Medical School.  The primary focus of her research has been to advance understanding of the interpersonal and intrapersonal factors that influence the quality of life of individuals confronting advanced cancer. Dr. Prigerson currently directs the Dana-Farber/Harvard Cancer Center Initiative to Eliminate Cancer Disparities, serves on many NIH and foundation scientific review groups, and is on the Editorial Board of the Journal of Clinical Oncology.  She was the 2009 recipient of the A. Clifford Barger Excellence in Mentoring Award sponsored by Harvard Medical School (HMS) and serves on the HMS Council of Mentors.  She has been funded by NIH continuously since 1985 and is currently the Principal Investigator of the multi-site prospective cohort studies of advanced cancer patients and their family caregivers (known collectively as the "Coping with Cancer" Studies).  Dr. Prigerson's research has been featured in the New York Times, the Washington Post, and LA Times, the New Yorker, Time Magazine, Scientific American, the Economist, and on the PBS Newshour, ABC's 20/20 Newshour, CNN, NPR and the BBC. Dr. Prigerson received masters' degrees in history and sociology from Stanford University and went on to earn her PhD from Stanford in 1990. She then completed a postdoctoral fellowship in the epidemiology of aging at Yale University School of Medicine, where she later became Assistant and then Associate Professor of Epidemiology and Public Health and Associate Professor or Psychiatry.  She then moved to Dana-Farber Cancer Institute in 2004 to assume leadership of the Center for Psycho-oncology and Palliative Care Research.

MARCH 23, 2011 Lecture by Dr. Jeff Dusek
"Integrative Medicine at Abbot Northwestern Hospital: Impact on Pain, Anxiety, and End of Life"

Topic: This lecture presented an innovative model for end of life care using a nursing based program of integrative medicine. Using an evidence-based approach to a model of care,  the purpose of the integrative medicine (IM) services focus on pain, anxiety, nausea as well as comfort care for end of life patients. The IM team has provided over 65,000 visits since data collection efforts began in 2004, with over 17,000 unique patients receiving the IM services. In 2003, the hospital began to provide integrative medicine (IM) services conducted individually in patients’ rooms, initiated by hospital staff providing direct patient care and documented using the hospital’s EPIC based electronic medical record system. Services are provided at no expense to patients and include mind body therapies via relaxation response, acupuncture, acupressure, massage therapy, healing touch, music therapy, aromatherapy, or reflexology. All 22 IM practitioners (19 FTE’s) are trained in multiple areas of IM ensuring that provision of services is based on individual patient’s need.  IM practitioners routinely round with conventional medical practitioners to ensure consistency of care and coordinated goals.

Speaker Information: Jeffery A. Dusek, Ph.D., is the Research Director at the Penny George Institute for Health and Healing, Abbott Northwestern Hospital, and Research Director of Integrative Medicine, Center for Healthcare Innovation, Allina Hospitals and Clinics. From 1998 to 2007 he was a faculty member of Harvard Medical School, where he first served as an Instructor in the Department of Medicine, Beth Israel Deaconess Medical Center and then the Director of Behavioral Sciences Research, Benson Henry Institute for Mind Body Medicine, Massachusetts General Hospital.  During this time, Dr. Dusek was the co-Principal Investigator on a multi-year program project grant funded by the Centers for Disease Control and Prevention to study the biological mechanisms of the relaxation response.  In addition, he has served on numerous National Institutes of Health review panels.  In 2011, he is slated to begin an R01 to study the impact of integrative therapies (mind/body, acupuncture, and massage) on acute and duration of pain in hospitalized patients. His research portfolio includes mechanistic laboratory-based studies, randomized controlled trials, and population-based studies using observational data to evaluate the cost effectiveness of integrative therapies for hospitalized inpatients and clinic outpatients.


January 20, 2011 Lecture by Perry Skeath, PhD
"Exemplars of Healing in Cancer Survivors: From Qualitative Study Toward Clinical Assessment”  Perry Skeath, Ph.D. is from the Pain and Palliative Care Service NIH Clinical Center. Lecture Host: NIH Clinical Center Pain and Palliative Care Service. Lecture Short Description: Many of our patients say they have changed for the better as people, in response to their illness.  Dr. Skeath will present a current NIH protocol to answer the question, “What are they talking about?” in preparation for future development of a systematic method for assessment of healing.  Nine cancer survivors with exemplary healing experiences (life-transforming positive outcomes connected to illness, along psychological, social and/or spiritual dimensions) were interviewed.  A comparison of interview content and NIH PROMIS CaPS (Patient Reported Outcomes Measurement System – Cancer PROMIS Supplement) items revealed that some features of healing are captured by these well-validated questionnaire items, while other important features and processes of healing are not recognized.  Through interview audio recordings, we will give examples of these features in terms of the cancer survivors’ first-hand experiences.


October 21, 2010 Lecture by Eva Kahana, PhD.
"Learning From Elders About Meeting Challenges of the Last Phase of Life"

 Dr. Eva Kahana, Robson Professor of Sociology, Humanities, Applied Social Science, Nursing and Medicine Director, Elderly Care Research Center, Case Western reserve University. Dr. Kahana has graciously permitted the sharing of the transcript of her presentation below. Please cite this work accordingly.


I am honored to have been invited to join you today as you start a dialogue among various NIH agencies regarding end-of-life issues. Your interest group can become highly instrumental for bringing together new advances in the field of end-of-life research coming from different disciplines.

It is now increasingly understood that creative ideas thrive through boundary spanning initiatives (Ernst & Yip, 2009). I would like to use our time together to engage, and even challenge, some of the prevailing concepts and approaches in the field of end-of-life and palliative care. I will do this by focusing on key unanswered questions and needed areas of inquiry rather than emphasizing specific findings that you could readily read in the literature. I will also share with you some anecdotes that humanize the abstract concepts characterizing theoretical and research initiatives in the field.

I will begin my presentation by reviewing three funded studies conducted at the Elderly Care Research Center that have led up to our current RO1 project, “Elders Marshalling Responsive Care and Enhancing Quality of Life in the Final Years”, funded by NINR. Slide 2 lists these four funded studies.

NIH Funded Studies at ECRC Informing Our Approaches to End-of-life Care.


1. Adaptation to Frailty among Dispersed Elders (NIA Merit Award 1989- 2000)

The study of Adaptation to Frailty among Dispersed Elders is an ongoing 20-year longitudinal study of healthy older adults. The goal of the study is to unravel adaptations to increasing frailty among healthy older adults. We started out studying 1000 elders who relocated to the Sunbelt and were living independently in Florida retirement communities. Subsequently, we added a sample of 800 urban, residentially stable older adults living in Cleveland Ohio. Later we added two more study locations. We studied an intergenerational planned community in Celebration, Florida and later expanded the study to Miami, Florida. In Miami we could consider ethnic diversity by looking at Hispanic, African-American and Caucasian elders.

Results. Our study of successful aging has helped us identify the value of older adults taking proactive action on their own behalf. We learned both about the resilience and the wisdom of these elderly. We also learned that as older adults get closer to the end of life, based on age related risk factors, they do not seem to fear death. Indeed, a very small proportion mention the fear of dying as a major fear, or the desire to live longer as an major hope. Nevertheless, elders do fear frailty and suffering close to the end of life.

In discussing their hopes for the future, even the very old mentioned plans for future activities, such as trips or new purchases. Our longitudinal study supports the value of proactivity, reflected in health promotion, planning for future activities, and marshalling support as contributing to maintenance of psychological well being and social activities. Future orientation is very important in predicting well being among this sample, even if they have a foreshortened future (Kahana & Kahana, 2003; Kahana, Kahana, & Zhang, 2005). A key contribution of this study was to offer formulations about proactivity as a cornerstone of successful aging.

2. Health Care Partnerships and Self Care of Older Adults (NIA 1999-2004).

This study emphasizes the role of doctor, patient and family involvement in care of the aged. We sought a better understanding of health care partnerships that emerge as older adults encounter the cascade of disability reflected in increasing chronic illnesses, physical impairments, and functional limitations (Verbrugge & Jette, 1994). This study was based on interviews with older adults, their primary care physicians and family members who played a major role in health maintenance. In this research we inquired about advance directives based on questions posed to elders, their primary care doctors and family members.

Results. A majority of our 231 respondents, whose physicians and family members participated in this study, prepared advance directives (60%). Those who discussed end-of-life issues most often did so with family members and particularly spouses. Among different types of advance directives, the most common was a living will (84%), followed by durable power of attorney (32%). It is notable that about one-quarter (24%) of the sample made no end-of-life care plans.

Few respondents (15%) discussed their advance directives with their physicians. Primary care physicians whom we interviewed confirmed this pattern, as they were generally unaware of advance directives prepared by their patients. Only 28% of physicians whose patients reported having made advance directives were informed about their patient’s wishes. Furthermore, about a third of physicians whose patients did not provide advance directives, were under the mistaken impression that such plans existed. In contrast, family caregivers were far more likely to be well informed about their relative’s advance directives. The vast majority (82%) were familiar with the patient’s end-of-life plans.

Thus, our findings suggest insufficient heath communication between elders and their health care professional. There is little evidence of effective health care partnerships close to the end of life (Kahana, Dan, Kahana, & Kercher, 2004). It is also important to recognize that different factors may be salient to patients, family and health care providers near the end of life (Steinhauser, Christakis, Clipp, McNeilly, McIntyre, & Tulsky, 2009).

3. Health Communication in Cancer Prevention and Care (NCI 2004-2010).

This study explores structural and personal influences on effective health communication in late life. It aims to understand health communication relevant to the very old, including those close to the end of life.

Results. This study has pointed to the reluctance of many older persons to take the initiative, to ask questions, and speak up to their doctors. We also learned that those elderly who are active health care consumers receive better care from their physicians than do passive patients (Kahana, Cheruvu, Kahana, Kelley-Moore, Sterns, Brown King, Kulle, Speck, & Stange, in press). Interestingly, older adults who were reluctant to speak up on their own behalf, recommended that other cancer patients take a more active stance and become bold advocates (Kahana, Kahana, Kelley-Moore, Adams, Hammel, Kulle, Brown, & King, 2010).

Based on these research findings, we decided to engage in translational research. We proposed an educational intervention to enhance communication skills among elderly persons and particularly, the underserved, many of whom utilize services of Area Agencies on Aging (AAA). In a randomized clinical trial, we hope to evaluate the efficacy of our educational intervention with patients relative to an attention control group focused on civic engagement. Our application received a favorable review with assignments to NCI and NIA, and is currently awaiting funding.

4. Elders Marshalling Responsive Care in the Final Years of Life (NINR 2007-2012).

This study focuses on “care-getting” by actively marshalling responsive care near the end of life. Our interest in end-of-life research has been a natural outgrowth of the aging of our original sample. As respondents in our longitudinal study were increasingly lost to mortality, we became interested in perspectives on the end of life among representative samples of older adults. As we familiarized ourselves with the literature on end-of-life issues, we noted that much of the knowledge about the end of life is based on the healthcare literature focusing on terminally ill patients. Prior to undertaking our current study of the final years of life, we realized that much could be learned about the end of life by considering perspectives of older adults who confront varying trajectories as they approach this period of life. We recognized that a substantial portion of our very elderly sample is likely to die in the course of our four-year follow-up. We would thus be able to compare life experiences of respondents who will die in the course of our study with those of long-term survivors.

Having developed an interest in end-of-life care, we were surprised to note that experts in gerontology paid relatively little attention to end-of-life issues. We realized that the end-of-life literature is linked to separate diagnostic categories such as cancer, and more recently dementia and heart disease (Keating, Landrum, Guadagnoli, Winer, & Ayanian, 2007; Van der Steen & Deliens, 2009; Lorenz et al 2008; Woo et al 2010; Selman et al 2007). We had a sense that successful aging is viewed by many as a self-contained phenomenon, not punctuated by the individual’s demise. We also noted with interest that one of the groups with the greatest concern for improving care at the end of life was found in the field of nursing (Hansen et al, 2009). It is based on this understanding that we incorporated theoretical orientations from nursing into our research on the final years of life.

Preliminary Results. In the initial study waves of our ongoing research, we listened to the voices of our elderly respondents in order to identify their perspectives on the final years of life. Today I am reporting data based on 512 Cleveland area participants who completed interviews during the first study wave of our NINR funded ongoing study.

Some interesting patterns emerged from respondents’ discussions of the approaching end of life. Some of these themes echoed findings in our initial “Adaptation to Frailty” study, which was based on a younger sample. Important themes in our current study include lack of fear by the very old about impending death, and a strong desire to remain connected to significant others in their lives.

Elderly participants in our study did not appear to be greatly preoccupied with their impending mortality. Only 11% made reference to a general fear of death. In regard to fears of the future, the majority of responses related to concerns about others, including mankind in general.

In discussing preparations for the end of life, the focus was not as much on their preferences, fulfillment or comfort, but on their desire to care for the people they felt close to or responsible for. Respondents reported making plans for end of life care so that their families would not be burdened. They also made funeral arrangements to leave their loved ones with minimal worry of financial responsibility. The importance of connectedness and spending time with the people who mean the most to the dying person is emphasized in recent publications (Casarett, 2010).

These responses do not lend support to the idea of disengagement, which assumes that a desire by the very old to focus away from other people, in order to contemplate their own mortality. These findings may also be interpreted as consistent with the philosophy of the hospice movement that aims to engage even the dying in meaningful living until the end of their days.


Key Issues Addressed in the Literature

As I reviewed the recent literature on end-of-life care, I noted several continuing and emerging trends. There is continuing emphasis on advance directives and planning for end-of-life care (Perkins, 2007; De Boer, Hetogh, Droes, Jonker & Eefsting, 2010; Detering, Hancock, & Reade, 2010; Glass & Nahapetyan, 2008) and a growing concern about the appropriateness of hospitals as the settings where many individuals die (Detering et al, 2010). Increased attention has been directed at examining issues of access to different end-of-life care locations (Hallenbeck 2008; Miller & Han, 2008). There is also evidence supporting the importance of coordination between patients, health care providers and family members in managing the end of life (Cartwright, Miller, & Volpin, 2009; Engelberg, Downey, Wenrich, et al 2010). Additionally, there is a growing recognition regarding the value of palliative care and recognition of the limited use of such services within the health care system. Expansion of hospice care to long-term care facilities has also received increasing attention (Levy, Morris, & Kramer, 2008; Keating et al, 2007; Hallenbeck, 2008).

In an effort to come up with new solutions to problems in implementing high quality care at the end of life, the literature has focused on a relatively limited array of conceptual approaches. Indeed, there is disproportionate emphasis on the final days or hours that patients likely spend in hospital settings close to the end of life. The value of personal autonomy is generally lauded in the end-of-life literature, but there is unidimensional focus on advance directives as the key avenues for exercising patient autonomy. Thus one may easily lose sight of the complexity of the processes and the extended temporal dimensions relevant to maintaining quality of life close to the end of life and achieving a good death. Focusing on patients’ lived experience of the final years of life may be the best way to understand the complexity.

Although it is well known that old age and dying are closely linked phenomena, there is relatively little research linking the two constructs. Marshall (2005) argues that aged persons have a growing awareness of the finitude of life and reflect on their lives with the realization of impending death. He notes that elderly people want to assume control and responsibility for the life that was lived and the life that is ending.

The diverse orientations of our research relevant to end of life allowed us to consider fresh perspectives without exclusively relying on established frameworks and orientations. This “Alice in Wonderland” orientation has also enabled me to share some of my personal observations about the differing perspectives of patients, families and professional caregivers when it comes to dealing with the end of life.

It is notable that in the study of end of life, personal narratives are often interspersed in the scientific literature. This may be necessary because of the emotionally charged nature of the subject. It is ironic that all of us must recognize our own inevitable mortality and yet we cannot know what awaits us after death. There are no survivors to offer personal wisdom similar to the role played by cancer survivors at scientific conferences.

Lived Experience: A Challenge to Prevailing Practices

My own personal anecdotes come from my up-close observations of the final years of my late mother, Sari Frost. She died about ten years ago at the age of 85 in a high quality, not-for-profit nursing home. Her struggles and experiences are quite typical of the challenges faced by many older adults as they approach the end of life. They also call into question many of our current practices in caring for patients close to the end of life. Her reactions to prevailing treatment practices illustrate the need for a paradigm shift in offering “caring,” rather than just medical care, close to the end of life (Watson, 1996).

My initial anecdote aims to emphasize the complexities of advance directives. It is generally agreed upon that advance directives are a necessary and desirable way to influence and possibly curtail medical care close to the end of life. Recent literature has demonstrated that in spite of mandated efforts to obtain advance directives, especially from patients in long-term care facilities, such directives are not regularly implemented (Lynch, Mathes, & Sawicki, 2008; Perkins 2007). It is only very recently that more fundamental questions have been raised about the value and meaning of advance directives.

My mother Sari was diagnosed as a diabetic at the age of 75. She developed circulatory problems and required amputation of her leg at age 80. She refused to give permission for the amputation arguing that her life would not be worth living as an amputee. She made it clear that she was ready to die. At the time, she was a distraught cognitively intact, bright and opinionated woman. As her daughter, I felt that her wishes expressed both verbally and in writing should be honored.

I do not know what transpired in the operating room, but after many frantic phone calls and psychiatric consults she did have her leg amputated. The physician who had known her for a number of years indicated that he was convinced that she really wanted to live but could not accept the specter of becoming an amputee.

After her amputation, Sari was in a good frame of mind and thanked profusely everyone who did not listen to her. She felt she survived in spite of herself and that she had much to live for. While still in the hospital, she decided that she did not want the home health services offered that were predicated on her being homebound. Instead, she called the Hungarian church and asked to find a personal aide who could take her shopping and help her cook for our family from her wheelchair. We had many subsequent conversations about the fact that prior to being faced with the awful prospect of amputation she could not know that life could be worth living in the aftermath. She was convinced that she was at the end of life.

Of course it is important to realize the distinction between prospects of living as an amputee, where a meaningful life is still possible from the prospects of living in a vegetative state. Nevertheless, the question is still unanswered regarding the knowledge of what we would want in a future situation that we cannot fully comprehend in advance of its occurrence.

I want to now turn to our next encounter with advance directives regarding end-of-life issues. Sari was able to live a very meaningful life in our home for three years after her initial amputation. She did suffer a number of mini strokes during this time and exhibited relatively mild signs of dementia. Her circulatory problems continued and she required a second amputation that resulted in her placement in a nursing home.

Sari was given about three months to live at the time of her admission. To everyone’s amazement she lived for two more years. Once again, estimates of when the end of life would occur were inaccurate.

Sari detested living in the nursing home, although she appreciated my twice-daily visits during her nursing home stay. As I arrived one day to see her, she produced a crumpled piece of paper from under her pillow. She told me that she had been asked to sign this and that it has something to do with death and possibly money. She insisted that we needed to consult a lawyer prior to signing such a contract that could put her life in danger. It was unclear whether limited knowledge of English or dementia interfered with full comprehension of the advanced directives she was asked to sign. However, I can tell you that I too found it difficult to understand what she was agreeing to. The notion of advanced directives is commendably directed at enhancing autonomy as patients approach the end of life. However, in practice patients seldom experience the full benefits of these initiatives (Lynch et al 2007; Perkins 2008).

Close to the end of her life, Sari left us with one more lesson to ponder. Her condition was generally deteriorating as her dementia progressed. One day, when I came to visit, she was in bed and running a fever. I was told that the doctor wanted to come by and talk with me during my visit. The doctor, a kindly older geriatrician, came by and standing at Sari’s bedside, told me that she had a severe urinary tract infection and that he was hesitant to transfer her to the hospital. He put his arm on my shoulder and noted the poor quality of my mother’s life. He suggested that this might be a good time to let go and protect her from further, ultimately futile interventions. The doctor was persuasive. I became teary-eyed and nodded my head. I said, “Okay let's not take her to the hospital.” At this point, totally unexpectedly, Sari opened her eyes and announced in a clear voice "I want to get better, take me to the hospital”. So I did follow her request, with the doctor standing by and shaking his head.

How does this final anecdote inform our understanding of the recent literature on end of life? One of the clear recommendations in this literature relates to not transferring demented elders from nursing homes to acute care hospital settings (Van der Steen & Deliens, 2009). This is framed as diminishing the suffering at the end of life and seldom referred to as a cost-saving measure. Sari’s story points to the complexity of this picture. The three days that she spent at University hospitals of Cleveland became the highlight in her life near the end of her life. She enjoyed the attention of the nurses, the dignity with which she was treated and the fact that they did not treat her as an incontinent patient as they did in the nursing home. During this hospital visit we discovered that, in fact, she was not incontinent, but required a great deal of effort to be toileted.

While in the nursing home, she consistently failed to correctly identify the place of the residence stating that she was in a department store or at the railroad station. After arriving at the hospital she announced to a visitor that “they are taking very good care of me" at University hospitals. Her infection cleared up and she did not want to go back to the nursing home. She lived three more months after this end-of-life hospitalization.

Looking at the situation in an unimpassioned way, a reasonable argument could be made that funds would have been saved by the health care system had she been allowed to die three months earlier without this final hospitalization. But, it would be hard to argue that she would have been better off.

Let me summarize how this anecdotal information I shared reflects on current controversies in the end-of-life literature. The lived experience of patients and families raises some challenging questions about the end of life, for example:

• Can individuals predict at earlier points in their lives what would be in their best interest during critical periods when decisions about their end of life are being made?
• Do elderly patients or patients with low health literacy adequately understand advance directives that they sign?
• Does the effort to limit hospital placements for elderly and demented patients at the end of life always benefit the patient?
These are just some of the questions that illustrate the complexity involved in bureaucratizing end-of-life care and decision making. Even as we make strides in research and interventions to improve end-of-life care, we must keep in mind that openness to considering unique needs and desires of each individual and maintaining empathy trumps specific regulations.


Let me now turn to the final component of my discussion that is more directly related to the challenges patients face as they near the end of life. Those of you who had the chance to glance at the publication I forwarded will recognize that this is the central theme of the conceptual framework that we developed for our currently funded end-of-life study.

In the previous section of my paper, I emphasized the continuing need for human connectedness and for mattering among older adults who live in nearness to death. Much of this connectedness was expressed by our respondents in terms of their desire to have agency in their lives, even close to the end and to shield their close family members from burdens associated with their dying. Nevertheless, a major adaptive task facing those close to the end of life relates to playing a meaningful role in receiving good care. Interestingly, while there is a vast literature on care giving, far less is known about patient involvement in care-getting. Following the theme of our discussion on the importance of human connectedness to the very end of life, I would like to have us turn our attention now to our model of proactive care-getting. The following are excerpts from our previously published paper, ““Care-Getting”: A conceptual model of marshalling support near the end of life (Kahana, Kahana & Wykle, 2010).

Care-Getting in the Framework of the Stress Paradigm

Understanding of the maintenance of good quality of life among the aged close to the end of life has been limited by lack of systematic theoretical attention to this challenging period of the life course. In our study of the final years of life, we synthesize orientations from the fields of gerontology, nursing, psychology, and sociology to further conceptual development in this critical area. We build on a stress theoretical framework (Pearlin, 1989) to help us understand the unique challenges faced by old-old adults as they encounter the final phases of life. During this period of increasing frailty, a major developmental task involves “Care-Getting,” or marshalling informal and formal support that allows for the maintenance of comfort, psychological well-being, and a sense of being cared for (Nolan & Mock, 2004).

Gerontologists study aging and old age, leaving the end of life to be the domain of a separate field of study related to death and dying (Kastenbaum, 2000; Kübler-Ross, 1969). Accordingly, during the final phase of life Erikson proposes a stage of “integrity” that denotes successful psychological assimilation of earlier life stages (Erickson, 1997). Tornstam (1997) addresses the issue of legacy in his framework on gerotranscendence.

Theorizing about maintenance of the self in late life underscores the abiding desire of human beings to maintain their long established identity, retain autonomy, and garner respect from their social environment for their values, preferences, and cultural diversity (George, 1999). Throughout much of adult life and well into healthy old age, this identity can be autonomously maintained. The final years of life pose a challenge to this self reliant, autonomous identity, as aged persons facing frailty and social losses must increasingly be cared for by others (Wykle, 2005). This developmental challenge and its successful resolution present

The proposed “Care-Getting” model for understanding maintenance of good quality of life at the end of life is depicted in Slide 4. It is anchored in our previously articulated proactivity based model of successful aging (Kahana & Kahana, 1996, 2003).

This stress theory based model emphasizes the normative nature of health related stressors and social losses in old age. We propose that older adults must adapt proactively to insure that they can maintain good quality of life even as they face physical impairments due to chronic illness, encounter acute health events, and deal with a shrinking social network. The “Care-Getting” model presented here emphasizes the role of proactive initiatives for using informal and formal social resources close to the end of life. Successful care-getting helps older adults secure advocates who can represent their values and wishes even when they can no longer do so for themselves.

Three categories of quality of life outcomes are particularly salient close to the end of life: physical discomfort/suffering, burden of illness and disability, and psychological distress/well-being (Components C, D, and E).
the key adaptive task of proactive “Care-Getting” during the final years of life.

[Note: we are unable to provide you with the graphic "Conceptual Model of Care-Getting for Elders in the Final Years" presented by Dr. Kahana at this lecture. Interested readers should consult: Kahana, E., Kahana, B., & Wykle, M. (2010). "Care-Getting": A conceptual model of marshalling support near the end of life/ Current Aging Science, 2, 71-78.]


The final stage of life is often characterized by severe symptoms, as well as dependence on others for coping with daily life (Twycross & Lichter, 1993). It is at this point that sensitivity and responsiveness of health care providers to patient preferences and needs becomes most challenging as well as most important. While advance directives may reflect personal patient preferences, health care providers must also remain sensitive to the cultural values of patients and their families and to subtle communications about changing needs (Nolan & Mock, 2004).

During the final stage of life, care is focused on comfort, while ‘cure’ remains primarily the focus of medical therapy. For older adults suffering from many co-morbidities, treatment may have to be continued even while comfort needs increase in priority. Care in the final stage focuses on understanding psychological needs and providing optimal comfort to the patients. Supportive care emphasizes the individual’s wishes and needs. At the same time, for some older adults, life extension can remain an enduring desire (Singer, Martin & Kelner, 1999).
The proposed proactive “Care-Getting” model is aimed to generate research that is needed, prior to developing future interventions to enhance the quality of older adults’ lives during the final years and months of life. Our conceptualization holds the potential for understanding aspects of planning, health care consumerism, and marshaling social support, that older adults and their families could be trained to engage in, to help promote patient responsive or patient centered care. This can lead to interventions that empower elderly health care consumers to take initiative and be assertive as they manage their health care. Patient-centered interventions can complement educational interventions which are aimed at sensitizing health care providers to the special needs of older adults during the end-of-life. Our focus on diverse concerns of older adults near the end of life, including spirituality as a resource, and meaningfulness as an outcome, can lead to culturally sensitive or humanistic interventions in the future that are relevant to improving care around the globe.

CONCLUSIONS AND IMPLICATIONS FOR PRACTICE AND POLICY

I would now like to briefly outline the implications of our paper for practice and policy in the field of end-of-life care.

In my presentation, I have argued for expanding the temporal context of end-of-life care. It is important to note that salient decisions relevant to the end of life may be legitimately made long before the final days or months of living. Indeed older adults who opt out of cancer screening in areas such as prostate cancer may be making significant decisions to reduce or curtail invasive treatments.

A second important point relates to the paradigm shift, from leaving the responsibility for advocacy and communication near the end of life, to physicians and other health care professionals. Given the failures of the current health care system, it is important for patients and their family advocates to be informed, and to take initiatives toward ensuring responsive health care close to the end of life. I propose that formal health care advocates and agencies, including the NIH, support both patient education and provider education efforts to improve care close to the end of life.

I support recommendations for expanding the definition and time frame for palliative care. This can result in removing unnecessary stigma and expanding substantive benefits to patients regarding comfort and a more hospitable health care environment.

I recommend that we think outside the box regarding empowerment of patients during the final period of their lives. This involves risk-taking by presenting patients with real choices in areas that are meaningful to them.

I invite us to re-examine our orientation to diversity in order to ensure that patients can define culturally meaningful practices rather than assumptions being made about preferences of any racial, ethnic or religious group in ways that could lead to stereotyping their preferences for end-of-life care.

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