Providing a model for the transformative work that is required going forward, The Crisis of US Hospice Care illustrates the potential of hospice for facilitating a new way of living our last days and for having the best death possible.

This article discusses the relationship between personal and professional qualities in hospice nurses. We examine the notion of self-esteem in personal and professional identity. The focus is on two questions: (1) what is self-esteem, and how is it related to personal identity and its moral dimension? and (2) how do self-esteem and personal identity relate to the professional identity of nurses? We demonstrate it is important that the moral and personal goals in nurses' life coincide. If nurses' personal view (...) of the good life is compatible with their experiences and feelings as professionals, this improves their performance as nurses. We also discuss how good nursing depends on the responses that nurses receive from patients, colleagues and family; they make nurses feel valued as persons and enable them to see the value of the work they do. (shrink)

Hospice care in the United States has undergone a remarkable transformation since it assumed its modern form in the late 1960s. It began as a movement driven by small organizations staffed with many volunteer providers focusing on comprehensive spiritual, palliative, and mental health services for a relatively small number of terminally ill patients, typically suffering from cancer. The idea behind hospice during its early days was that a terminally patient and his or her family made a decision to (...) focus on easing a patient’s pain and anxiety, making him or her more comfortable, rather than pursuing additional curative treatment. Because these objectives required a wide range of professional and non-professional skills, hospice care involved not only physicians and nurses, but clergy, social workers, volunteer caretakers, homemakers, and, of course, family members. The process of decision-making by the patient and his or her family was never uniform and never systematically studied. (shrink)

Americans are increasingly turning to hospice services to provide them with medical care, pain management, and emotional support at the end of life. The increase in the rates of hospice utilization is explained by a number of factors including a “hospice movement” dating to the 1970s which emphasized hospice as a tool to promote dignity for the terminally ill; coverage of hospice services by Medicare beginning in 1983; and, the market for hospice services provision, (...) sustained almost entirely by governmental reimbursement. On the one hand, the growing acceptance of hospice may be seen as a sign of trends giving substance to the death-with-dignity movement and the growing strength of end-of-life decision-makers and planners who integrate medical, community, family and spiritual networks. On the other hand, the precise relationship between the death-with-dignity and commercial processes driving hospice utilization rates are not well understood. On May 2, 2013, the U.S. Government intervened in a lawsuit brought by former hospice employees alleging that behind Vitas Innovative Hospice Care, the largest for-profit hospice service provider in the United States, lie an intricate web of incentives for patient intake nurses, physicians and marketers which not only drove hospice patients to use more expensive crisis care services, but influenced patient and family decisions as to whether or not to discontinue curative treatment. The corporate, investment, and regulatory history behind Vitas provides an important insight into the market realities behind Americans' embrace of hospice care and the risks to patient autonomy and health that accompany the commercialization of this ethically and morally complex health care service. (shrink)

Although housed in an anonymous Victorian house in San Francisco, California, the Zen Hospice Project is world renowned for its pioneering model of training hospice volunteers, providing direct services to patients, and offering educational programs to the broader public.

Non-fiction graphic novels about illness and death created by patients and their loved ones have much to teach all readers. However, the bond of empathy made possible in the comic form may have special lessons for healthcare providers who read these texts and are open to the insights they provide.

Although the overwhelming majority of terminally ill patients in Oregon who seek a physician's aid in dying are enrolled in hospice programs, hospices do not take a major role in this practice. An examination of fifty‐five Oregon hospices reveals that both legal and moral questions prevent hospices from collaborating fully with physician‐assisted death.

This book identifies and explores ethical themes in the structure and delivery of hospice care in the United States. As the fastest growing sector in the US healthcare system, in which over forty percent of patients who die each year receive care in their final weeks of life, hospice care presents complex ethical opportunities and challenges for patients, families, clinicians, and administrators. Thirteen original chapters, written by seventeen hospice experts, offer guidance and analysis that promotes best ethical (...) practice for hospice organizations and professionals. The book addresses common questions and issues faced by those who work in hospice care, a dynamic movement that, in only 30 years, has shifted from an all-volunteer care alternative at the end of life to a highly regulated industry in which over half of providers are for-profit enterprises in a very competitive health care marketplace. The chapters show how the history and philosophy of hospice care can inform the values and composition of care teams, the operations of inpatient units, and access to care for pediatric and long-term care populations. Various chapters propose frameworks for deliberating organizational approaches to ethical questions in changing regulatory and legal environments, including a model for hospice ethics committees. The final chapter outlines an expanded model of hospice as a community based, interdisciplinary, and holistic form of palliative care emphasizing advance planning, case management, and a flexible spectrum of services. This model can serve as a centrepiece for a new quality of life and social support approach, not only to terminal care, but also long-term care during the later stages of chronic illness and fraility. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others (FBO). A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and (...) has worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide (PAS). The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has (...) worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has (...) worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has (...) worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

This article presents empirical data on the limited availability of hospice and palliative care to the 6 million people of the English-speaking Caribbean. Ten of the 13 nations therein responded to a survey and reported employing a total of 6 hospice or palliative specialists, and having a total of 15 related facilities. The evolving socioeconomic and cultural context in these nations bears on the availability of such care, and on the willingness to report, assess, and prioritize pain, and (...) to prescribe opiates for pain. Socioeconomics and culture also impinge on what medications and modalities of care are routinely available for pain or other conditions and can challenge professionalism, empathy, and responsiveness to patients’ unrelieved pain. Although all respondents report having a protocol for pain management, hospice, or end-of-life care, their annual medical use of opiates is well below the global mean. The International Narcotics Control Board , which monitors such use, encourages Caribbean and other low- and middle-income countries to increase their use of opiates to treat pain, and to overcome both unfounded fears of addiction and overly restrictive interpretation of related laws and regulations. Contextual considerations like those described here are important to the success of policies and capacity-building programs aiming to increase access to hospice and palliation, and perhaps to improving other aspects of health and healthcare. Exploring and responding to the realities of socioeconomic and cultural conditions will enhance public and policy dialogue and improve the design of interventions to increase access to palliative and hospice care. Improving access to palliative and hospice care in the Caribbean demonstrates beneficence and helps to fulfill human rights conventions. (shrink)

This contribution is a report of a two months' participant observation in a Dutch hospice. The goal of the observation was to gain an overview of moral decisions in a hospice in which euthanasia, a tolerated practice in the Netherlands, is not accepted as an option. In an introduction, the development of palliative care in the Netherlands will be briefly presented. Subsequently, various moral decisions that were taken during the participant observation are presented and analysed by means of (...) case reports. Attention is especially drawn to decisions that directly or indirectly relate to euthanasia. These moral decisions will be clarified in the light of the philosophy behind the concept of palliative care as it has evolved since the foundation of St Christopher's Hospice, London in 1967. (shrink)

Medicine often views hospice care as “giving up,” which results in a reduced quality of end-of-life care for many patients. By integrating a theology of the Sabbath with modern medicine, hospice becomes a sacred and valuable way to honor the dying patient in a comprehensive and holistic way. A theology of Sabbath as “Sacredness in Time” can provide the foundation for a shift in understanding hospice as a legitimate care plan, which shifts the focus from controlling and (...) manipulating space for the body, to rest and enjoyment of time for the whole person. First, I explore vitalism and its negative effects on the institution of hospice. Second, I address the main misconceptions and biases surrounding hospice in order to establish hospice as an appropriate option for the terminally ill. Finally, I argue for a shift away from sacredness in space (as seen in vitalism) to sacredness in time. (shrink)

This book review essay discusses The Crisis of US Hospice Care: Family and Freedom at the End of Life (2019), by Harold Braswell.

Narrative Medicine in Hospice Care argues that the models of selfhood and care found in the work of Paul Ricoeur can serve as a framework for clinicians, caregivers, and end-of-life patients regardless of the patients’ verbal and cognitive capabilities.

Good nursing is more than exercising a specific set of skills. It involves the personal identity of the nurse. The aim of this article is to answer two questions: (1) what kind of person should the hospice nurse be? and (2) how should the hospice nurse engage in caring conversations? To answer these questions we analyse a nurse’s story that is intended to be a profile of an exemplary hospice nurse. This story was constructed from an analysis (...) of five semistructured interviews with hospice nurses, based on the ‘ethics of the caring conversation’, which is inspired by the ethical perspective of Paul Ricoeur. The research questions concentrate on the norms of respect, responsibility and reciprocity, which are integral parts of the ‘ethics of the caring conversation’. (shrink)

Recent studies suggest that terminally ill African Americans’ care is generally more expensive and of lower quality than that of comparable non-Hispanic white patients. Scholars argue that increasing hospice enrollment among African Americans will help improve end-of-life care for this population, yet few studies have examined the experiences of African American patients and their loved ones after accessing hospice care. In this article, we explore how African American patients and lay caregivers evaluated their hospice experiences. Drawing from (...) 39 in-depth interviews with 26 participants, we use a modified version of Bute and Jensen’s (2011) narrative typology to organize patients’ and caregivers’ stories into three general categories: narratives of satisfaction, narratives of regret, and narratives of ambivalence. Building from these categories, we discuss the implications of this research for understanding hospice experiences, promoting hospice access, and improving end-of-life care for marginalized populations. (shrink)

It's a chilly winter night outside, but very warm inside the hospice guest house. All of the people gathered here have wished one another “Happy New Year” and settled on cushions in the big meeting hall. Both fireplaces are lit, and the many little white cards with the names of each person who died last year are arranged on the mantels over the fireplaces and on a table in the center of the room. Paul, our teacher for the evening, (...) says a few simple and wise words about impermanence and about being of service and then explains tonight's process: we, the volunteers in attendance, will pick up the cards, either by choosing a specific patient's name or at random, and take them one by one to the fires, dropping them in and saying something about each deceased person. The idea is to hear a litany of names being remembered and honored and sent onward as volunteers flow steadily to and from the fireplaces. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Comment on Hospice of Washington's PolicyJohn A. Robertson (bio)The recent history of medical ethics may accurately be described as a history of coming to terms with personal autonomy and informed consent across the range of medical practice. Nowhere has this recognition been more important than in decisions to withhold or withdraw life-sustaining medical procedures from terminal and chronically ill patients.Despite the widespread acceptance of autonomy in these decisions, (...) many people—physicians, families, and policymakers—have balked at extending it to the withdrawal of artificially supplied fluids and nutrition. The symbolic connotations of food and water have led some persons to perceive cessation of medically-supplied fluids and nutrition to be a cruel, barbarous act, rather than the merciful respect for the dying patient that such withdrawal usually represents.Two recent events might help resolve the controversy, and ensure that decisions about artificial fluid and nutrition are handled like any other medical intervention—according to patient and family choice and patient welfare. One event is the Supreme Court decision in Cruzan (Cruzan v. Director of Missouri Department of Health, 110 S.Ct. 2841, 1990). Although the Supreme Court upheld Missouri's constitutional power to require artificial nutrition for a patient in a persistent vegetative state, its decision was not based on the symbolic importance of artificial fluids and nutrition. No Supreme Court justice saw a significant difference between medically-supplied nutrition and hydration and other medical interventions, thus allowing them to be discontinued either directly or by advance directive on the same basis as other medical interventions.The second event is the publication of the statement of "Philosophy Regarding Medical Intervention to Supply Fluids and Nutrition" by Hospice of Washington (or similar statements by other organizations). This statement is useful and important because it removes the issue of food and water from its symbolic overlay [End Page 139] and places it in the real context of dying hospice patients. It makes clear that the overriding consideration should be benefit to the patient "in accord with the patient's wishes or those of the appropriate surrogate(s) for the patient." Depending on those wishes and their impact on the patient, this position may or may not involve medically-supplied fluids and nutrition.This statement is also helpful in showing the medical complexity of such decisions in terms of their actual effect on dying patients. Rather than an either/or position, it recognizes that fluids may harm a dying patient by increasing discomfort, and that "persons near death do not ordinarily tolerate substantial volumes of enteral feedings." Thus rather than adhere to a symbolically-based position about the meaning of food and water to a dying patient, the important thing is to look to that patient's needs and give fluids or not, as the patient's wishes and situation demand.Fortunately, the law in most jurisdictions will recognize such a position. In those few jurisdictions that have made a fetish of artificial fluids and nutrition, the law should be changed, for the HOW statement makes clear that such a position may actually end up harming dying patients. Patient welfare should be privileged above all else, and patient welfare may often entail that fluids and nutrition not be medically supplied. Even then, however, caregivers will look to patient comfort and remedy dry mouths and lips with lubricants and ice chips.The HOW statement is, in my view, a very useful guideline not only for hospices but for hospitals, too—for any situation in which a patient is terminally ill and soon to die. A somewhat different set of issues arises, however, when the patient is chronically ill and incompetent, and will survive for long periods with medically-supplied fluids and nutrition. Recognition of patient rights in those situation should also permit cessation of fluids and nutrition on the same basis that respirators, antibiotics, and other life-sustaining measures may be withheld. But the withholding of medically-supplied fluids and nutrition from a patient who no longer has interests in surviving in an extremely debilitated condition raises different issues from withholding fluids that could cause such discomfort and nutrition when the patient is imminently dying. In either case, patient... (shrink)

Proposals to legalize assisted suicide challenge hospice's identity and integrity. In the wake of Measure 16, Oregon hospice programs must develop practical policies to balance traditional commitments not to hasten death and not to abandon patients with dying patients' legal right to request lethal prescriptions.

A request to admit a hospital inpatient with motor neurone disease to the hospice generated unusual unease. Significantly, withdrawal of ventilation had already been planned. The presumption that ventilation would be withdrawn after transfer presented a dilemma. Should the hospice accept the admission? If so, should the hospice staff stop the ventilation, and then when and how? Debate centred on the continuity of best interests and the logistics of withdrawing ventilation. The factors making the request contentious identified (...) competing interests within hospice admission decision making that could detrimentally impact on patient care. (shrink)

Now in its second decade in the U.S., hospice has moved from a fringe alternative led by an idealistic group of volunteers and professionals to a mainstream, industry‐like approach to the care of the terminally ill. Success has brought uniformity and fiscal constraints, but the commitment to “low‐tech, high‐touch” care has not changed.

연명의료결정법이 법제화되어 시행되고 있다는 점에 착안하여 필자는 인간다운 죽음, 품위 있는 죽음이 시대의 중요한 쟁점임을 강조하면서 출발한다. 그렇다면 인간다운 죽음이란 무엇인가. 인간의 존엄성을 지키며 죽음을 맞이할 수 있는 인간다운, 품위있는 죽음이란 무엇인가. 이 물음은 결국 육체에만 집중되는 육체집착적 치료를 비판하고 있는 것이며 이러한 요인이 오늘날 무의미한 연명의료의 원인임을 규명한다. 그렇다면 연명의료결정법의 시행으로 인간다운 죽음은 실현될 수 있는가. 이러한 문제의식 하에 필자는 첫째, 현재 시행 중인 연명의료결정법의 주요 내용을 살펴본 후 연명의료 중단대상 환자 범위를 통한 그것의 문제점을 고찰하고자 한다. 그 과정에서 (...) 연명의료 중단대상 범위를 임종과정 환자로 제한시킴으로써 무분별한 연명의료중단의 확산을 방지하고, 또한 그것이 소극적 안락사의 간접적 허용과 구별시키기 위해서라는 점을 도출해낸다. 둘째, 그렇다면 연명의료중단 대상에 포함되지 않는 환자는 어떻게 인간다운 죽음을 실현시킬 수 있는가. 이에 대한 논의를 필자는 연명의료결정법의 또 다른 한 축인 ‘호스피스 완화의료’에서 논의하고자 한다. 셋째, 우리가 호스피스 의료를 호스피스 돌봄 또는 호스피스 활동이라고 명명하는데, 필자가 지정하는 호스피스 철학이라는 하나의 패러다임이 과연 연명의료결정법의 호스피스 완화의료에서 얼마나 유효한가를 고찰하는데 있다. 결국 연명의료결정법은 한편으로는 죽을 권리 대신 생명 종료 시점을 결정할 권리로서 죽음에 임박한 상태에서 인간으로서의 존엄과 가치를 지키기 위하여 연명치료의 거부 또는 중단을 결정할 수 있는 자기결정권의 인정임을 강조하는데 그 의미가 있다. 그리고 다른 한편으로는 우리나라 근대의료가 도외시했던 환자의 ‘주체성’에 대한 새로운 관심을 불러일으키며, 환자의 주체성이 어떻게 실현될 것인지를 중요한 과제로 촉발시켰다고 필자는 판단한다. 종래의 의료가 삶의 연장에 중점을 둔다면 연명의료결정법은 환자를 단순한 치료의 대상이 아닌 치료의 주체로, 즉 ‘치료의 대상에서 치료의 주체에로의 전환’ 이라는 패러다임 전환의 돌파구를 마련했다고 생각한다. (shrink)

As artist-in-residence at the Zen Hospice Project Guest House, Wendy MacNaughton experienced firsthand how difficult it is to know what to do when we're sharing final moments with a loved one. In this tenderly illustrated guide to saying goodbye, with a foreword by renowned physician and author BJ Miller, MacNaughton shows how to make sure those moments are meaningful. Using a framework of "the five things" taught to her by a professional caregiver, How to Say Goodbye provides a model (...) for having conversations of love, respect, and closure: with the words "I forgive you," "Please forgive me," "Thank you," "I love you," and "Goodbye," each oriented toward finding mutual peace and understanding when it matters most. How to Say Goodbye features MacNaughton's drawn-from-life artwork from both the Zen Hospice Project Guest House and her own aunt's bedside as she died, each paired with hospice caregivers' gentle advice on creating a positive sensory experience, acknowledging what you can't control, and sharing memories and gratitude. A poignant guide to embracing the present and deepening relationships during great vulnerability, How to Say Goodbye shows that just as there is no one right way to live a good life, there is no one right way to say goodbye. Whether confused, scared, or uncertain, this book is a starting point. (shrink)

Many advances in public health and medical technology have contributed to the improved wellbeing and overall longevity of Americans. Such benefits, however, have been offset by a change in the nature and prolongation of the dying process. Daniel Callahan offers a challenge to caregivers in his observation of violent death by technological attenuation, and he sets an agenda to identify a more appropriate approach to the needs of the dying.Over the past quarter century, hospice has increasingly been used as (...) a resource for care at the end of life. However, according to 1995 estimates by the National Hospice Organization, hospice care presently accounts for only about 15 percent of the care of terminally ill patients in the United States. We will review issues of access and use of hospice services and examine the various institutional, professional, societal, and cultural barriers to hospice principles of care, and consider various options to promote optimal care at the end of life. (shrink)

Many advances in public health and medical technology have contributed to the improved wellbeing and overall longevity of Americans. Such benefits, however, have been offset by a change in the nature and prolongation of the dying process. Daniel Callahan offers a challenge to caregivers in his observation of violent death by technological attenuation, and he sets an agenda to identify a more appropriate approach to the needs of the dying.Over the past quarter century, hospice has increasingly been used as (...) a resource for care at the end of life. However, according to 1995 estimates by the National Hospice Organization, hospice care presently accounts for only about 15 percent of the care of terminally ill patients in the United States. We will review issues of access and use of hospice services and examine the various institutional, professional, societal, and cultural barriers to hospice principles of care, and consider various options to promote optimal care at the end of life. (shrink)

Questions on what it means to live and die well are raised and discussed in the hospice movement. A phenomenological lifeworld perspective may help professionals to be aware of meaningful and important dimensions in the lives of persons close to death. Lifeworld is not an abstract philosophical term, but rather the opposite. Lifeworld is about everyday, common life in all its aspects. In the writings of Cicely Saunders, known as the founder of the modern hospice movement, facets of (...) lifeworld are presented as important elements in caring for dying patients. Palliative care and palliative medicine today are, in many ways, replacing hospices. This represents not only a change in name, but also in the main focus. Hospice care was originally very much about providing support and comfort for, and interactions with the patients. Improved medical knowledge today means improved symptomatic palliation, but also time and resources spent in other ways than before. Observations from a Nordic hospice ward indicate that seriously ill and dying persons spend much time on their own. Different aspects of lifeworld and intersubjectivity in the dying persons’ room is presented and discussed. (shrink)