Improving the End-of-Life Experience of Elderly Patients and Their Families: Policy and Practice Fall Short of Providing Comfort and Support
Eva Kahana, PhD, Editor-in-Chief
This editorial is dedicated to my late husband Boaz Kahana, and to older patients facing the end of life in acute care hospitals
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On November 6, 2020, I lost my husband, soulmate, and research collaborator of 58 years, Dr. Boaz Kahana. Boaz was an eminent scholar, a prize-winning and devoted teacher and mentor, and a prince of a man. He retired from his position as Professor of Psychology at Cleveland State University in December of 2019, less than a year before his death. During his brief retirement, he was completing a book for first-generation college students, studying foreign languages, and reading science magazines. He died at one of the premier hospitals in the US. He was 86 years old and a long term, 21-year survivor of Whipple surgery. He fought a valiant battle to survive. Our primary care doctor called me to offer condolences and told me that my “fierce advocacy” and involvement in Boaz’s care is likely to have extended his life.
As I introduce the second volume of the Journal of Elder Policy in the midst of grieving for Boaz and the persistent global trauma of COVID 19, I would like to draw on my life experiences to explore the liminal areas between old age, ill health, deficiencies in health care practices, and social supports as people approach the end of life. I will also briefly touch on challenges of bereaved elders. My major concern relates to the questions: How are policies, like those presented and discussed in the Journal of Elder Policy and others, translated into practices, and how do elderly individuals and their families experience prevailing practices?
The articles in this volume span a broad spectrum of late life challenges and policy solutions that might address these challenges. I am hoping in this editorial to relate them to the lived experience of nearing the end of life. I focus on our common vulnerability and common humanity, which transcend specific policy issues. Robert Binstock (1989) explained the complex interfaces between public policy and implementation. He noted that the hierarchical chains through which policies are carried out are extensive. In relation to health and social service programs, he suggested that it is the employee of the service organization who implements policies that are designed by policymakers and experienced by clients.
As the powerful waves of grief wash over me, suddenly the abstractions of intellectual inquiry about social policies fade into the background. It is only intimate memories and the desire to improve the dying and the bereavement experiences of other human beings that lift me up. I feel that it is useful to put the abstract and scholarly articles we publish in a human context of lived experience to fully appreciate their relevance and contributions. My comments in this editorial encompass both observations of my husband’s final days and my own experiences with being an elder coping with loss and the altered social status of widowhood.
Shortly after Boaz’s death and just before Thanksgiving, I experienced a shock when I received a well-meaning call from a volunteer, who was affiliated with a local community organization. She told me that as a recent widow, I was entitled to a free meal that could be delivered to me for Thanksgiving. While it is nice that this service exists, especially for older adults who may face food security issues during this pandemic, there was little empathy for my grief in this interaction. The focus was only on implementation of service delivery reflecting a social policy.
I thanked the caller and told her that I would not be needing this benefit and hung up the phone with tears trickling down my face. In my mind flashed vivid images of Thanksgivings past when Boaz and I invited to our home our domestic and international students who could not travel home for the Holiday. I remembered welcoming them in a spirit of gratitude as important guests in our home partaking in a homemade meal at a festive table. Not only did I lose my best friend and partner for almost 60 years, but my interaction with this service provider made me feel like I was reduced to a lonely charity case looking for a free Thanksgiving dinner.
As scholars, we advocate for better social policies for elders, but seldom think of what it feels like to be on the receiving end of entitlements. Do our policies take into account the rich life histories of older care recipients? Are emotional and spiritual needs considered by policy makers and service providers? How much respect do service recipients receive?
In his book Being Mortal (2014), Atul Gawande offers important insights about the disconnect between older adults’ needs and aspirations near the end of their lives, and health care providers’ understandings of those needs. During patients’ final stays at a hospital or nursing home, where most elders die, there is little communication about the fears, options, and desires of patients. Our policies have evolved to soliciting advance directives from patients, but we do little to ensure that they fully understand the implications of such directives.
In my husband’s case, a well-meaning palliative care doctor stopped by his room soon after his arrival to the hospital. The doctor made conversation about the science magazines that my husband was reading. As almost an afterthought, he asked my husband if, “in the unlikely event of his health further declining, would he still want interventions to extend his life?” The eternal optimist, Boaz replied, “Of course, I would want to get all the help I could get.” The doctor did not explain the nature of end-of-life interventions he had in mind, nor the likelihood of their success. When the time came to make final decisions, my sons and I opted against heroic measures to extend Boaz’s life. Many doctors do not explain that heroic measures may extend life, but they do not always provide quality of life for the time that the person is kept alive.
Boaz was hospitalized on the recommendation of our competent and caring primary care doctor to try to figure out what was causing the extreme fatigue and weakness that he had been experiencing for months. He died in the hospital 10 days later. It was good that during Boaz’s final hours, our sons and I were allowed to be with him. Up until that point, only I had been able to visit. During the pandemic, meaningful contact of hospitalized patients and family members has been curtailed. The hospital where Boaz was a patient only allowed one designated family member to visit due to understandable concerns about the spread of COVID-19.
My personal experience with an end-of-life crisis for my husband, and the way the hospital service system works is not unique to me. Many families over this past year have experienced close up the workings of the health care system during COVID-19. They too have confronted end of life decision-making within a system that aims at harmonizing services, but often misses the mark as bureaucratic structures and service policies prevent them from achieving the goals of compassionate care (Youngson, 2011; Kneafsey et al., 2016).
As we advocate for better social policies to protect elders, experts typically rely on logic and results of prior studies. The quality of medical care is seldom viewed through the patient’s eyes (Gerteis, 1993). Additionally, while qualitative studies exist for patient experiences, it does not seem that these studies are used as evidence for the development of policy—whether it is because they are based on “subjective” experiences or small study samples. In a sense, they are not viewed as rigorous research, despite providing a window into what it is like to be on the receiving end of healthcare practices and health policies. In the current climate of health care delivery, financial considerations and funding protocols play important roles. These evolving algorithms provide little incentive or even room for patient centered care (Constrand et al., 2014).
Medical care has increasingly less to do with caring for patients and more to do with efficient delivery of services with the patient, considered as the object of care delivery, rather than as a suffering human being (Salamon, 2008; Sweet, 2013). A person lying in an uncomfortable bed, hooked up to IV, unable to eat and too weak to use a regular bathroom, is reduced to being a passive recipient of care. Seriously ill patients are not in a position to ask questions and articulate their fears of abandonment when there are no family members present. Helping to maintain the human dignity and comfort of the patient, such as brushing teeth and having a well-groomed appearance, does not seem to be high on care providers busy do list (Henderson et al., 2009). In addition to being hungry and weak, Boaz also felt cold, particularly at night. I brought him sweaters, gloves and a hat, so he would be more comfortable. It was my task, before leaving in the evening, to help him put on the warm clothing. I wondered about the precarious the position of other lonely older patients hospitalized without access to family. Doctors and nurses are seldom willing or able to discuss patient fears, concerns, and comfort.
Boaz had undergone a successful procedure to place a pancreatic stent during the third day after his hospitalization and we felt optimistic about his recovery. This impression was reinforced by the physician’s demeanor. However, he encountered complications as they tried for five days to establish an artificial nutrition regimen. He was not provided any food by mouth during this period. He was clearly distressed, uncomfortable, and increasingly agitated. He whispered to me fearfully: How long will they starve me? I had no answers for him. I could only offer to check with his nurses and doctors. Indeed, doctors visited Boaz in teams of 4 or 5 specialists at a time. They largely conferred among themselves and different nutrition teams (IV vs. tube feeding), and appeared to each prefer their specific strategies. The doctors visiting gave little indication of Boaz’s prospects. They did not address him directly and no one inquired about the discomfort he was experiencing.
Boaz retained his mental acuity until his final moments. As he became too weak to talk I gave him paper and pen, so he could write down what he wanted. He would ask that I set his watch to the right time including the day. He wanted the dignity of being oriented to time. He wrote “Thursday,” the day before he died. He was reminding me what day of the week to set his watch to. This makes me think of the importance of protecting and ensuring dignity, close to the end of life.
There was no indication Thursday evening that Boaz’s condition worsened. I arrived Friday morning shocked to find various staff surrounding him. I was told to wait outside as they tried to suction out a pill that Boaz aspirated. My impression was that they had succeeded and I was not informed that his condition turned critical. A representative of Hospice came by later Friday morning and asked if I would like to take Boaz home so he could receive comfort care and spend time surrounded by family. Again, there was no mention of his imminent demise and I did not ask how long he had. I enthusiastically embraced the idea of bringing him home. Since he was now viewed as a hospice patient, our sons were allowed to visit. They both arrived expeditiously.
In the early afternoon, a physical therapist came by and did some maneuvers of Boaz’s body. During this process Boaz’s breathing became labored. Nurses rushed in and administered oxygen. They were followed by two doctors who let us know that Boaz has taken a turn for the worse and our only choice now was to take Boaz to intensive care and place him on a ventilator. We declined after calling his physician brother, as there appeared to be little, if any chance of recovery. The hospice nurse who offered home care earlier in the day never returned.
My sons and I spent the next few hours alone with Boaz, watching him drift in and out of sleep and holding his hand. One of his grandson’s played him the violin over zoom. When we noticed that Boaz stopped breathing we notified the nurses. Soon a doctor came in hurriedly and declared him to be deceased. We were left alone with our grief and the practical needs to make funeral arrangements. There was no familiar face of a caring doctor to address our grief.
The model of hospital and institutional care does not support patient desire for continuity of care with a trusted and familiar physician (Saultz & Lochner, 2005, Kahana et al., 1997). Even for patients who have a trusted long-term physician who is affiliated with the hospital that they enter, as my husband did, treatment is taken over by teams of “hospitalist” physicians who have little prior knowledge of the patient and are not in a position to offer meaningful support as patients and their families must confront the end of life (White & Glazier 2011). This fits well with recent literature about physicians’ loss of professional autonomy as they have turned into “providers” and their work has become mechanical, timed, and structured (Constand et al., 2014).
My late husband Boaz and I have written about patient preferences for end of life care (Kahana, Dan, Kahana & Kercher, 2004). In later work we addressed potential challenges faced by older health care consumers in gaining access to quality end of life care (E. Kahana et al., 2014). Our lived experiences, as Boaz neared the end of life, reinforced concerns about access that we previously articulated based on research perspectives. The emotional turmoil we experienced as we faced a beloved family member’s final hour were not addressed by any health care providers. We found that no one offered support to families who made the recommended choices against futile efforts toward extending life.
There were three of us, family members, in the hospital room with Boaz as he reached the end of life. All four of us are well-published PhD scholars who have studied health care. Yet we still encountered difficult problems within the system and could not achieve effective advocacy. We discovered that when faced with a health crisis like Boaz’s, it’s difficult to put one’s research into practice—especially when there weren’t any familiar nurses or doctors around to advocate for Boaz or just to explain the true nature of his condition.
There is a positive role that palliative care and hospice might play in the process of end-of-life care (Jennings et al., 2010). Unfortunately, there appears to be poor communication between teams of specialists providing traditional, intervention-oriented care and those offering comfort care in the hospital setting (Nolan & Mock, 2004). In our case, after we refused to put my husband on a ventilator, no physicians entered his room until after he passed away. Even though the hospital offered both palliative and hospice care, in practice these care options did not help us.
Having commented on our difficult bereavement experiences and our loss of a beloved elderly family member, I now turn to the solace that a new volume of the Journal of Elder Policy brings through the publication of creative efforts to better understand and hopefully improve elder policies.
What Our Current Issue Offers in Terms of Improving Policies for Older Adults
There are excellent insights offered about diverse components of elder policy discussed in the current issue. A number of papers touch upon treatment and health care of older adults as they near the end of life. The problems and potential of healthcare advocacy are considered by Gary Kreps. Planning for retirement and future-care are topics addressed by Silvia Sorensen and colleagues. Elder abuse is the topic of the paper by Georgia Anetzberger. The problems and prospects for treatment of elderly prisoners are discussed in the work of Tina Maschi and collaborators. Racial differences in retirement security are the focus of the paper by Richard Johnson. The broader societal context for segmentation of the life course is addressed by Dale Dannefer and his colleagues. All of these articles make important points that are relevant to older adults’ life experiences.
The paper by Gary Kreps addresses Health Advocacy and Health Communication for Elderly Health Care Consumers. Kreps notes the powerful role that health advocacy can have for older adults who are navigating the health care system. He explains that health advocacy (individual or organizational) can enhance patient satisfaction, quality of care, and improve health outcomes of older adults. He outlines important communication strategies that health advocates must develop to guide older consumers through their health care decisions. Kreps’ focus on health care advocacy is closely aligned with my personal observations about limitations in the delivery of end-of-life care in a hospital context. He points out that “many elderly health care consumers do not receive adequate advocacy support and have difficulty shaping health care policies and practices due to problems with ageism and power imbalances within health care systems that accord far more authority to health care providers and administrators than to consumers in the delivery of care. This limits elders’ participation and influence in health care.”
Georgia Anetzberger, in her article The Elder Abuse Policy Landscape in the United States, provides a thorough review of elder abuse related public policy in the United States. She showcases how elder abuse has evolved from being viewed as a social problem to a crime and medical syndrome. While policies have been put into place to combat elder abuse, Anetzberger points out both the important successes and shortcomings of such policies. The paper concludes with the argument that risk factors for elder abuse could be diminished if policies were in place to ensure the financial, medical, and social needs of older adults were met. Relating the concept of elder abuse to end of life experiences, one is confronted with a landscape of neglected patients often encounter close to the end of life. Explanations for interventions or for the lack thereof appear to diminish in frequency as the patient is increasingly perceived as an object of care, rather than a partner in care. Doctors and nurses often address the family member, rather than the patient, when request is made for explanations. This is what Boaz and I both experienced.
Perspectives on Aging Related Preparation (ARP) is discussed in an article prepared by Silvia Sörensen Rachel Missell, Alexander Eustice-Corwin, and Dorine Otieno. This article is focused on understanding both antecedents and consequences of aging related preparation (ARP) in the context of social policy. The authors differentiate planning in four different domains: retirement, housing, future care needs, and advance directives for end-of-life care. They note that even where elders consider general plans, concrete planning is rare. Many older adults disregard the possibility for increasing frailty and care needs. Advance care planning is more common, as it is mandated by the health care system. Community dwelling older adults report general plans for their future needs with no specific notion of how to implement these preferences. Only 1% to 15% report having concrete plans for their care (Black et al., 2008). The authors note that although advance directives are mandated, they are not well understood. This was certainly the case in Boaz’s hospital experience. Major barriers to aging-related preparation include insufficient internal and external resources. Structural barriers include existing policies that inhibit meaningful care planning. The authors provide recommendations for improved goal setting as useful individual strategies coupled with more age-friendly environments that provide structural supports for effective planning.
Aging in Prison is the topic of the article by authors Tina Maschi, Keith Morgen, Annette Hintenach, Adriana Kaye, and Karen Bullock. They provide an in-depth overview of the global aging prison population and the issues related to this group (e.g., poor health, early mortality, risk for dementia). This article proposes a paradigm shift from a competition and conflict approach that focuses on punishment and retribution, to a caring justice partnership (CJP) model which promotes a more compassionate response. The goal of Maschi et al.’s CJP model is to “promote, facilitate, endorse, and celebrate care for one another during life’s most testing moments and experiences.” The authors argue that this response is more humane for those who are older, disabled, and dying in prison, and has relevance for other communities such as those suffering from homelessness or natural or human-made disasters. Although it might appear that prisoners and seriously ill hospitalized patients have little in common, it is difficult to escape the fact that hospitals share attributes characterizing total institutions and manifest congregate, segregate, and institutional control features (Goffman, 1958).
Richard Johnson’s paper is concerned with The Black-White gap in financial security during retirement. He points to deficiencies in income protection for the poor and particularly racial minorities, who depend on Social Security primarily during their retirement years. More limited employment opportunities of younger blacks also result in financial insecurity in late life. Policy recommendations include shoring up social security and SSI payments. The author also calls for better opportunities for younger racial minorities to achieve home ownership and boost income to be better situated in their old age. Increasing minimum benefits would be desirable as this would help the neediest recipients. Additional measures that would require less financial investment by government include “ensuring that Blacks are treated fairly in credit, housing, and labor markets.”
Age-Differentiated vs. Age-Integrated: Neoliberal Policy and The Future of the Life Course by authors Dale Dannefer, Jielu Lin & George Gonos focuses on more macro-societal phenomena. The authors provide a detailed look at the differences between the age-segmented institutionalized tripartite life course and the age-integrated alternative proposed by Matilda Riley. Their paper examines the devastating impact that neoliberal social policies (e.g., deregulation of business, privatization of public services, tax cuts, and cuts to social welfare programs) have had on the components of the life course: education, work, retirement. Their paper walks the reader through policy changes that have the potential to rebuild the institutional life course in a way that would improve individual and group well-being. These changes include policies related to universal basic income, baby bond proposals, living wage requirements, progressive tax policies, and free college education. The reforms advocated by these authors offer a promise for improved medical care at the end of life as well.
Contextualizing essays in this volume of JEP as relevant to policy, practice and elders’ lived experiences
The articles presented in this volume of JEP call attention to both the depth and breadth of late life needs. While such needs require advances in policy and practice, they also entail simple notions of “common decency” in implementation of existing policies (Schorr, 1986). People who lack social capital, financial resources, and social supports face special problems in navigating challenges of ill health and navigating the health care system. Racial discrimination also puts older adults at special risk (Williams, Neighbors & Jackson, 2003).
The healthcare and service delivery systems become particularly challenging as personal vulnerability increases close to the end of life. My hope is that offering my personal reflections about end-of-life care and needs of the bereaved in this editorial will motivate readers to critically evaluate the essays published in this volume from the vantage point of elders who experience the policy initiatives discussed. Not only do older adults benefit from policies that meet their personal and social needs, but their lived experience needs to match the stated policy goals. To the extent that policy and practice implementation is inadequate, even the most well intended policies will fall short of improving quality of late life.
During the most vulnerable phases of life, formal services alone are likely to be insufficient and older persons depend on the informal supports of family and close friends. Based on the strong emotional bonds with these individuals, the vulnerable elder can be reassured that their dignity and needs will be respected. Members of informal support networks are also more likely to be familiar with values and preferences of the frail elder and can try to meet even unarticulated needs. Consequently, the elder in need and their family members can serve as useful guides to implementation of formal services and policies. Close to the end of life it is especially important that practitioners communicate with family members and significant others, since the elder may no longer be able to advocate for themselves.
Compassionate care is the concept most closely associated with providing responsive care close to the end of life. Compassionate care is considered to involve “a relationship characterized by empathy, emotional support and efforts to understand and relieve a person’s distress suffering and concerns” (Mannion, 2014, p.115). A systematic review of the literature Tehranineshat et al. (2019) found that compassionate care involves ethical and spiritual values of staff, effective communication, professional skills, and positive involvement with patients.
Healthcare environments play an important role in enabling doctors and nurses to deliver compassionate care (Christiansen et al., 2015). To understand the connection between policies to help vulnerable elders and the lived experience of service recipients, it is also important to consider perspectives, experiences, and autonomy of key health care providers (Friedberg et al., 2014). To the extent that physicians, nurses, and other health care professionals can work while maintaining professional autonomy, patients’ health care experiences are likely to be improved.
Educational programs for staff have been cited as promoting compassionate care, but they appear less important than the value placed on humanistic care by health care organizations.
As I noted earlier, my late husband Boaz was an optimist who believed that scientific research and devoted teaching can improve the world, specifically the lives of older people. I conclude this essay by echoing this optimism and expressing the hope that the essays published in the Journal of Elder Policy can ultimately contribute to improving older adults’ life experiences. As Boaz aptly put it, “we learn from every experience and need to put our learning to good use to help others.”
References
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Constand, M. K., MacDermid, J. C., Dal Bello-Haas, V., & Law, M. (2014). Scoping review of patient-centered care approaches in healthcare. BMC health services research, 14(1), 271.
Crawford, P., Brown, B., Kvangarsnes, M., & Gilbert, P. (2014). The design of compassionate care. Journal of clinical nursing, 23(23-24), 3589-3599.
Friedberg, M. W., Chen, P. G., Van Busum, K. R., Aunon, F., Pham, C., Caloyeras, J., ... & Crosson, F. J. (2014). Factors affecting physician professional satisfaction and their implications for patient care, health systems, and health policy. Rand health quarterly, 3(4).
Gawande, A. (2014). Being mortal: Medicine and what matters in the end. Metropolitan Books.
Gerteis, M. (1993). Through the patient's eyes: understanding and promoting patient-centered care. Jossey – Bass, San Francisco.
Goffman, E. (1958). Characteristics of total institutions. In Symposium on preventive and social psychiatry (pp. 43-84). US Government Printing Office.
Henderson, A., Van Eps, M. A., Pearson, K., James, C., Henderson, P., & Osborne, Y. (2009). Maintainance of patients’ dignity during hospitalization: Comparison of staff–patient observations and patient feedback through interviews. International journal of nursing practice, 15(4), 227-230.
Jeffrey, D. (2016). Empathy, sympathy and compassion in healthcare: Is there a problem? Is there a difference? Does it matter? Journal of the Royal Society of Medicine, 109(12), 446-452.
Jennings, B., Ryndes, T., D'Onofrio, C. A. R. O. L., & Baily, M. A. (2010). Access to hospice care: Expanding boundaries, overcoming barriers. Palliative Care: Transforming the Care of Serious Illness, 159-164.
Kahana, B., Dan, A., Kahana, E., & Kercher, K. (2004). The personal and social context of planning for end‐of‐life care. Journal of the American Geriatrics Society, 52(7), 1163-1167.
Kahana, E., Kahana, B ,Lovegreen L,.Kahana J ,,Brown,J &Kulle D. (2011). Health-care consumerism and access to health care: educating elders to improve both preventive and end-of-life care. Research in the Sociology of Health Care, 29, 173-193.
Kahana, E., Kahana, B., & Wykle, M. (2010). “Care-getting”: A conceptual model of marshalling support near the end of life. Current Aging Science, 3(1), 71-78.
Kahana, E., Stange, K., Meehan, R., & Raff, L. (1997). Forced disruption in continuity of primary care: the patients' perspective. Sociological Focus, 30(2), 177-187.
Kneafsey, R., Brown, S., Sein, K., Chamley, C., & Parsons, J. (2016). A qualitative study of key stakeholders’ perspectives on compassion in healthcare and the development of a framework for compassionate interpersonal relations. Journal of clinical Nursing, 25(1-2), 70-79.
Mannion, R. (2014). Enabling compassionate healthcare: perils, prospects and perspectives. International journal of health policy and management, 2(3), 115
Nolan, M. T., & Mock, V. (2004). A conceptual framework for end-of-life care: A reconsideration of factors influencing the integrity of the human person. Journal of Professional Nursing, 20(6), 351-360.
Salamon, J. (2008). Hospital: man, woman, birth, death, infinity, plus red tape, bad behavior, money, God, and diversity on steroids. Penguin.
Saultz, J. W., & Lochner, J. (2005). Interpersonal Continuity of Care and Care Cutcomes: a Critical Review. The Annals of Family Medicine, 3(2), 159-166.
Schorr, A. L. (1986). Common Decency: Domestic Policies After Reagan. Yale University Press.
Singer, P. A., Martin, D. K., & Kelner, M. (1999). Quality end-of-life care: patients’ perspectives. Jama, 281(2), 163-168.
Sweet, V. (2013). God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine. Penguin.
Tehranineshat, B., Rakhshan, M., Torabizadeh, C., & Fararouei, M. (2019). Compassionate care in healthcare systems: a systematic review. Journal of the National Medical Association, 111(5), 546-554.
Warren, M. G., Weitz, R., & Kulis, S. (1998). Physician satisfaction in a changing health care environment: the impact of challenges to professional autonomy, authority, and dominance. Journal of Health and Social Behavior, 356-367.
White, H. L., & Glazier, R. H. (2011). Do hospitalist physicians improve the quality of inpatient care delivery? A systematic review of process, efficiency and outcome measures. BMC medicine, 9(1), 58.
Williams, D. R., Neighbors, H. W., & Jackson, J. S. (2003). Racial/ethnic discrimination and health: Findings from community studies. American Journal of Public Health, 93(2), 200-208.
Youngson, R. (2011). Compassion in healthcare—the missing dimension of healthcare reform. Caregiver stress and staff support in Illness, Dying, and Bereavement, 49-61.
As I introduce the second volume of the Journal of Elder Policy in the midst of grieving for Boaz and the persistent global trauma of COVID 19, I would like to draw on my life experiences to explore the liminal areas between old age, ill health, deficiencies in health care practices, and social supports as people approach the end of life. I will also briefly touch on challenges of bereaved elders. My major concern relates to the questions: How are policies, like those presented and discussed in the Journal of Elder Policy and others, translated into practices, and how do elderly individuals and their families experience prevailing practices?
The articles in this volume span a broad spectrum of late life challenges and policy solutions that might address these challenges. I am hoping in this editorial to relate them to the lived experience of nearing the end of life. I focus on our common vulnerability and common humanity, which transcend specific policy issues. Robert Binstock (1989) explained the complex interfaces between public policy and implementation. He noted that the hierarchical chains through which policies are carried out are extensive. In relation to health and social service programs, he suggested that it is the employee of the service organization who implements policies that are designed by policymakers and experienced by clients.
As the powerful waves of grief wash over me, suddenly the abstractions of intellectual inquiry about social policies fade into the background. It is only intimate memories and the desire to improve the dying and the bereavement experiences of other human beings that lift me up. I feel that it is useful to put the abstract and scholarly articles we publish in a human context of lived experience to fully appreciate their relevance and contributions. My comments in this editorial encompass both observations of my husband’s final days and my own experiences with being an elder coping with loss and the altered social status of widowhood.
Shortly after Boaz’s death and just before Thanksgiving, I experienced a shock when I received a well-meaning call from a volunteer, who was affiliated with a local community organization. She told me that as a recent widow, I was entitled to a free meal that could be delivered to me for Thanksgiving. While it is nice that this service exists, especially for older adults who may face food security issues during this pandemic, there was little empathy for my grief in this interaction. The focus was only on implementation of service delivery reflecting a social policy.
I thanked the caller and told her that I would not be needing this benefit and hung up the phone with tears trickling down my face. In my mind flashed vivid images of Thanksgivings past when Boaz and I invited to our home our domestic and international students who could not travel home for the Holiday. I remembered welcoming them in a spirit of gratitude as important guests in our home partaking in a homemade meal at a festive table. Not only did I lose my best friend and partner for almost 60 years, but my interaction with this service provider made me feel like I was reduced to a lonely charity case looking for a free Thanksgiving dinner.
As scholars, we advocate for better social policies for elders, but seldom think of what it feels like to be on the receiving end of entitlements. Do our policies take into account the rich life histories of older care recipients? Are emotional and spiritual needs considered by policy makers and service providers? How much respect do service recipients receive?
In his book Being Mortal (2014), Atul Gawande offers important insights about the disconnect between older adults’ needs and aspirations near the end of their lives, and health care providers’ understandings of those needs. During patients’ final stays at a hospital or nursing home, where most elders die, there is little communication about the fears, options, and desires of patients. Our policies have evolved to soliciting advance directives from patients, but we do little to ensure that they fully understand the implications of such directives.
In my husband’s case, a well-meaning palliative care doctor stopped by his room soon after his arrival to the hospital. The doctor made conversation about the science magazines that my husband was reading. As almost an afterthought, he asked my husband if, “in the unlikely event of his health further declining, would he still want interventions to extend his life?” The eternal optimist, Boaz replied, “Of course, I would want to get all the help I could get.” The doctor did not explain the nature of end-of-life interventions he had in mind, nor the likelihood of their success. When the time came to make final decisions, my sons and I opted against heroic measures to extend Boaz’s life. Many doctors do not explain that heroic measures may extend life, but they do not always provide quality of life for the time that the person is kept alive.
Boaz was hospitalized on the recommendation of our competent and caring primary care doctor to try to figure out what was causing the extreme fatigue and weakness that he had been experiencing for months. He died in the hospital 10 days later. It was good that during Boaz’s final hours, our sons and I were allowed to be with him. Up until that point, only I had been able to visit. During the pandemic, meaningful contact of hospitalized patients and family members has been curtailed. The hospital where Boaz was a patient only allowed one designated family member to visit due to understandable concerns about the spread of COVID-19.
My personal experience with an end-of-life crisis for my husband, and the way the hospital service system works is not unique to me. Many families over this past year have experienced close up the workings of the health care system during COVID-19. They too have confronted end of life decision-making within a system that aims at harmonizing services, but often misses the mark as bureaucratic structures and service policies prevent them from achieving the goals of compassionate care (Youngson, 2011; Kneafsey et al., 2016).
As we advocate for better social policies to protect elders, experts typically rely on logic and results of prior studies. The quality of medical care is seldom viewed through the patient’s eyes (Gerteis, 1993). Additionally, while qualitative studies exist for patient experiences, it does not seem that these studies are used as evidence for the development of policy—whether it is because they are based on “subjective” experiences or small study samples. In a sense, they are not viewed as rigorous research, despite providing a window into what it is like to be on the receiving end of healthcare practices and health policies. In the current climate of health care delivery, financial considerations and funding protocols play important roles. These evolving algorithms provide little incentive or even room for patient centered care (Constrand et al., 2014).
Medical care has increasingly less to do with caring for patients and more to do with efficient delivery of services with the patient, considered as the object of care delivery, rather than as a suffering human being (Salamon, 2008; Sweet, 2013). A person lying in an uncomfortable bed, hooked up to IV, unable to eat and too weak to use a regular bathroom, is reduced to being a passive recipient of care. Seriously ill patients are not in a position to ask questions and articulate their fears of abandonment when there are no family members present. Helping to maintain the human dignity and comfort of the patient, such as brushing teeth and having a well-groomed appearance, does not seem to be high on care providers busy do list (Henderson et al., 2009). In addition to being hungry and weak, Boaz also felt cold, particularly at night. I brought him sweaters, gloves and a hat, so he would be more comfortable. It was my task, before leaving in the evening, to help him put on the warm clothing. I wondered about the precarious the position of other lonely older patients hospitalized without access to family. Doctors and nurses are seldom willing or able to discuss patient fears, concerns, and comfort.
Boaz had undergone a successful procedure to place a pancreatic stent during the third day after his hospitalization and we felt optimistic about his recovery. This impression was reinforced by the physician’s demeanor. However, he encountered complications as they tried for five days to establish an artificial nutrition regimen. He was not provided any food by mouth during this period. He was clearly distressed, uncomfortable, and increasingly agitated. He whispered to me fearfully: How long will they starve me? I had no answers for him. I could only offer to check with his nurses and doctors. Indeed, doctors visited Boaz in teams of 4 or 5 specialists at a time. They largely conferred among themselves and different nutrition teams (IV vs. tube feeding), and appeared to each prefer their specific strategies. The doctors visiting gave little indication of Boaz’s prospects. They did not address him directly and no one inquired about the discomfort he was experiencing.
Boaz retained his mental acuity until his final moments. As he became too weak to talk I gave him paper and pen, so he could write down what he wanted. He would ask that I set his watch to the right time including the day. He wanted the dignity of being oriented to time. He wrote “Thursday,” the day before he died. He was reminding me what day of the week to set his watch to. This makes me think of the importance of protecting and ensuring dignity, close to the end of life.
There was no indication Thursday evening that Boaz’s condition worsened. I arrived Friday morning shocked to find various staff surrounding him. I was told to wait outside as they tried to suction out a pill that Boaz aspirated. My impression was that they had succeeded and I was not informed that his condition turned critical. A representative of Hospice came by later Friday morning and asked if I would like to take Boaz home so he could receive comfort care and spend time surrounded by family. Again, there was no mention of his imminent demise and I did not ask how long he had. I enthusiastically embraced the idea of bringing him home. Since he was now viewed as a hospice patient, our sons were allowed to visit. They both arrived expeditiously.
In the early afternoon, a physical therapist came by and did some maneuvers of Boaz’s body. During this process Boaz’s breathing became labored. Nurses rushed in and administered oxygen. They were followed by two doctors who let us know that Boaz has taken a turn for the worse and our only choice now was to take Boaz to intensive care and place him on a ventilator. We declined after calling his physician brother, as there appeared to be little, if any chance of recovery. The hospice nurse who offered home care earlier in the day never returned.
My sons and I spent the next few hours alone with Boaz, watching him drift in and out of sleep and holding his hand. One of his grandson’s played him the violin over zoom. When we noticed that Boaz stopped breathing we notified the nurses. Soon a doctor came in hurriedly and declared him to be deceased. We were left alone with our grief and the practical needs to make funeral arrangements. There was no familiar face of a caring doctor to address our grief.
The model of hospital and institutional care does not support patient desire for continuity of care with a trusted and familiar physician (Saultz & Lochner, 2005, Kahana et al., 1997). Even for patients who have a trusted long-term physician who is affiliated with the hospital that they enter, as my husband did, treatment is taken over by teams of “hospitalist” physicians who have little prior knowledge of the patient and are not in a position to offer meaningful support as patients and their families must confront the end of life (White & Glazier 2011). This fits well with recent literature about physicians’ loss of professional autonomy as they have turned into “providers” and their work has become mechanical, timed, and structured (Constand et al., 2014).
My late husband Boaz and I have written about patient preferences for end of life care (Kahana, Dan, Kahana & Kercher, 2004). In later work we addressed potential challenges faced by older health care consumers in gaining access to quality end of life care (E. Kahana et al., 2014). Our lived experiences, as Boaz neared the end of life, reinforced concerns about access that we previously articulated based on research perspectives. The emotional turmoil we experienced as we faced a beloved family member’s final hour were not addressed by any health care providers. We found that no one offered support to families who made the recommended choices against futile efforts toward extending life.
There were three of us, family members, in the hospital room with Boaz as he reached the end of life. All four of us are well-published PhD scholars who have studied health care. Yet we still encountered difficult problems within the system and could not achieve effective advocacy. We discovered that when faced with a health crisis like Boaz’s, it’s difficult to put one’s research into practice—especially when there weren’t any familiar nurses or doctors around to advocate for Boaz or just to explain the true nature of his condition.
There is a positive role that palliative care and hospice might play in the process of end-of-life care (Jennings et al., 2010). Unfortunately, there appears to be poor communication between teams of specialists providing traditional, intervention-oriented care and those offering comfort care in the hospital setting (Nolan & Mock, 2004). In our case, after we refused to put my husband on a ventilator, no physicians entered his room until after he passed away. Even though the hospital offered both palliative and hospice care, in practice these care options did not help us.
Having commented on our difficult bereavement experiences and our loss of a beloved elderly family member, I now turn to the solace that a new volume of the Journal of Elder Policy brings through the publication of creative efforts to better understand and hopefully improve elder policies.
What Our Current Issue Offers in Terms of Improving Policies for Older Adults
There are excellent insights offered about diverse components of elder policy discussed in the current issue. A number of papers touch upon treatment and health care of older adults as they near the end of life. The problems and potential of healthcare advocacy are considered by Gary Kreps. Planning for retirement and future-care are topics addressed by Silvia Sorensen and colleagues. Elder abuse is the topic of the paper by Georgia Anetzberger. The problems and prospects for treatment of elderly prisoners are discussed in the work of Tina Maschi and collaborators. Racial differences in retirement security are the focus of the paper by Richard Johnson. The broader societal context for segmentation of the life course is addressed by Dale Dannefer and his colleagues. All of these articles make important points that are relevant to older adults’ life experiences.
The paper by Gary Kreps addresses Health Advocacy and Health Communication for Elderly Health Care Consumers. Kreps notes the powerful role that health advocacy can have for older adults who are navigating the health care system. He explains that health advocacy (individual or organizational) can enhance patient satisfaction, quality of care, and improve health outcomes of older adults. He outlines important communication strategies that health advocates must develop to guide older consumers through their health care decisions. Kreps’ focus on health care advocacy is closely aligned with my personal observations about limitations in the delivery of end-of-life care in a hospital context. He points out that “many elderly health care consumers do not receive adequate advocacy support and have difficulty shaping health care policies and practices due to problems with ageism and power imbalances within health care systems that accord far more authority to health care providers and administrators than to consumers in the delivery of care. This limits elders’ participation and influence in health care.”
Georgia Anetzberger, in her article The Elder Abuse Policy Landscape in the United States, provides a thorough review of elder abuse related public policy in the United States. She showcases how elder abuse has evolved from being viewed as a social problem to a crime and medical syndrome. While policies have been put into place to combat elder abuse, Anetzberger points out both the important successes and shortcomings of such policies. The paper concludes with the argument that risk factors for elder abuse could be diminished if policies were in place to ensure the financial, medical, and social needs of older adults were met. Relating the concept of elder abuse to end of life experiences, one is confronted with a landscape of neglected patients often encounter close to the end of life. Explanations for interventions or for the lack thereof appear to diminish in frequency as the patient is increasingly perceived as an object of care, rather than a partner in care. Doctors and nurses often address the family member, rather than the patient, when request is made for explanations. This is what Boaz and I both experienced.
Perspectives on Aging Related Preparation (ARP) is discussed in an article prepared by Silvia Sörensen Rachel Missell, Alexander Eustice-Corwin, and Dorine Otieno. This article is focused on understanding both antecedents and consequences of aging related preparation (ARP) in the context of social policy. The authors differentiate planning in four different domains: retirement, housing, future care needs, and advance directives for end-of-life care. They note that even where elders consider general plans, concrete planning is rare. Many older adults disregard the possibility for increasing frailty and care needs. Advance care planning is more common, as it is mandated by the health care system. Community dwelling older adults report general plans for their future needs with no specific notion of how to implement these preferences. Only 1% to 15% report having concrete plans for their care (Black et al., 2008). The authors note that although advance directives are mandated, they are not well understood. This was certainly the case in Boaz’s hospital experience. Major barriers to aging-related preparation include insufficient internal and external resources. Structural barriers include existing policies that inhibit meaningful care planning. The authors provide recommendations for improved goal setting as useful individual strategies coupled with more age-friendly environments that provide structural supports for effective planning.
Aging in Prison is the topic of the article by authors Tina Maschi, Keith Morgen, Annette Hintenach, Adriana Kaye, and Karen Bullock. They provide an in-depth overview of the global aging prison population and the issues related to this group (e.g., poor health, early mortality, risk for dementia). This article proposes a paradigm shift from a competition and conflict approach that focuses on punishment and retribution, to a caring justice partnership (CJP) model which promotes a more compassionate response. The goal of Maschi et al.’s CJP model is to “promote, facilitate, endorse, and celebrate care for one another during life’s most testing moments and experiences.” The authors argue that this response is more humane for those who are older, disabled, and dying in prison, and has relevance for other communities such as those suffering from homelessness or natural or human-made disasters. Although it might appear that prisoners and seriously ill hospitalized patients have little in common, it is difficult to escape the fact that hospitals share attributes characterizing total institutions and manifest congregate, segregate, and institutional control features (Goffman, 1958).
Richard Johnson’s paper is concerned with The Black-White gap in financial security during retirement. He points to deficiencies in income protection for the poor and particularly racial minorities, who depend on Social Security primarily during their retirement years. More limited employment opportunities of younger blacks also result in financial insecurity in late life. Policy recommendations include shoring up social security and SSI payments. The author also calls for better opportunities for younger racial minorities to achieve home ownership and boost income to be better situated in their old age. Increasing minimum benefits would be desirable as this would help the neediest recipients. Additional measures that would require less financial investment by government include “ensuring that Blacks are treated fairly in credit, housing, and labor markets.”
Age-Differentiated vs. Age-Integrated: Neoliberal Policy and The Future of the Life Course by authors Dale Dannefer, Jielu Lin & George Gonos focuses on more macro-societal phenomena. The authors provide a detailed look at the differences between the age-segmented institutionalized tripartite life course and the age-integrated alternative proposed by Matilda Riley. Their paper examines the devastating impact that neoliberal social policies (e.g., deregulation of business, privatization of public services, tax cuts, and cuts to social welfare programs) have had on the components of the life course: education, work, retirement. Their paper walks the reader through policy changes that have the potential to rebuild the institutional life course in a way that would improve individual and group well-being. These changes include policies related to universal basic income, baby bond proposals, living wage requirements, progressive tax policies, and free college education. The reforms advocated by these authors offer a promise for improved medical care at the end of life as well.
Contextualizing essays in this volume of JEP as relevant to policy, practice and elders’ lived experiences
The articles presented in this volume of JEP call attention to both the depth and breadth of late life needs. While such needs require advances in policy and practice, they also entail simple notions of “common decency” in implementation of existing policies (Schorr, 1986). People who lack social capital, financial resources, and social supports face special problems in navigating challenges of ill health and navigating the health care system. Racial discrimination also puts older adults at special risk (Williams, Neighbors & Jackson, 2003).
The healthcare and service delivery systems become particularly challenging as personal vulnerability increases close to the end of life. My hope is that offering my personal reflections about end-of-life care and needs of the bereaved in this editorial will motivate readers to critically evaluate the essays published in this volume from the vantage point of elders who experience the policy initiatives discussed. Not only do older adults benefit from policies that meet their personal and social needs, but their lived experience needs to match the stated policy goals. To the extent that policy and practice implementation is inadequate, even the most well intended policies will fall short of improving quality of late life.
During the most vulnerable phases of life, formal services alone are likely to be insufficient and older persons depend on the informal supports of family and close friends. Based on the strong emotional bonds with these individuals, the vulnerable elder can be reassured that their dignity and needs will be respected. Members of informal support networks are also more likely to be familiar with values and preferences of the frail elder and can try to meet even unarticulated needs. Consequently, the elder in need and their family members can serve as useful guides to implementation of formal services and policies. Close to the end of life it is especially important that practitioners communicate with family members and significant others, since the elder may no longer be able to advocate for themselves.
Compassionate care is the concept most closely associated with providing responsive care close to the end of life. Compassionate care is considered to involve “a relationship characterized by empathy, emotional support and efforts to understand and relieve a person’s distress suffering and concerns” (Mannion, 2014, p.115). A systematic review of the literature Tehranineshat et al. (2019) found that compassionate care involves ethical and spiritual values of staff, effective communication, professional skills, and positive involvement with patients.
Healthcare environments play an important role in enabling doctors and nurses to deliver compassionate care (Christiansen et al., 2015). To understand the connection between policies to help vulnerable elders and the lived experience of service recipients, it is also important to consider perspectives, experiences, and autonomy of key health care providers (Friedberg et al., 2014). To the extent that physicians, nurses, and other health care professionals can work while maintaining professional autonomy, patients’ health care experiences are likely to be improved.
Educational programs for staff have been cited as promoting compassionate care, but they appear less important than the value placed on humanistic care by health care organizations.
As I noted earlier, my late husband Boaz was an optimist who believed that scientific research and devoted teaching can improve the world, specifically the lives of older people. I conclude this essay by echoing this optimism and expressing the hope that the essays published in the Journal of Elder Policy can ultimately contribute to improving older adults’ life experiences. As Boaz aptly put it, “we learn from every experience and need to put our learning to good use to help others.”
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