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)

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)

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.

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)

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.

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)

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.

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 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 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)

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)

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.

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

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)

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.

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)

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)

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)

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)

There is disagreement among physicians and medical ethicists on the precise goals of Hospice and Palliative Medicine (HPM). Some think that HPM's goals should differ from those of other branches of medicine and aim primarily at lessening pain, discomfort, and confusion; while others think that HPM's practices should, like all other branches of medicine, aim at promoting health. I take the latter position: using the ars moriendi to set a standard for what it means to die well, I argue that (...) if HPM's practices were to aim at mitigating suffering with little regard to promoting health, some patients would die worse deaths than if HPM's practices were to aim at health. According to the ars moriendi, flourishing at the end of one's life requires that one exercise her agency and pursue the goods most important to her. On this view, HPM's practices should promote patients’ health to enable them to pursue these goods. (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.

As I write, I hear that Dr. Jack Kevorluan has delivered another victim to the emergency room of his local Michigan hospital. Why do physicians and terminally ill patients feel we need to change the law with respect to assisted suicide when a rogue pathologist, who has been stripped of his medical license, is allowed to pursue his appetite for providing his clients with inhalation treatments of carbon monoxide gas? If no court will convict this outlaw, what makes the physicians (...) and patients who brought Compassion in Dying v. State of Washington and Quill v. Vacco fear that any court would ever convict a licensed physician of assisting in a suicide when he/she writes one of her established patients a prescription for a short-acting barbiturate? Moreover, it is not even clear that laws against assisted suicide in most jurisdictions were ever intended to apply to the actions of licensed physicians. Nonetheless, the plaintiffs in the Second and Ninth Circuit Courts of Appeals were clearly seeking some kind of redress, some kind of protection from potential legal claims they feared might be made against them. (shrink)

As I write, I hear that Dr. Jack Kevorluan has delivered another victim to the emergency room of his local Michigan hospital. Why do physicians and terminally ill patients feel we need to change the law with respect to assisted suicide when a rogue pathologist, who has been stripped of his medical license, is allowed to pursue his appetite for providing his clients with inhalation treatments of carbon monoxide gas? If no court will convict this outlaw, what makes the physicians (...) and patients who brought Compassion in Dying v. State of Washington and Quill v. Vacco fear that any court would ever convict a licensed physician of assisting in a suicide when he/she writes one of her established patients a prescription for a short-acting barbiturate? Moreover, it is not even clear that laws against assisted suicide in most jurisdictions were ever intended to apply to the actions of licensed physicians. Nonetheless, the plaintiffs in the Second and Ninth Circuit Courts of Appeals were clearly seeking some kind of redress, some kind of protection from potential legal claims they feared might be made against them. (shrink)

Perinatal hospice is a novel form of care for an unborn child who has been diagnosed with a significantly life-limiting condition. In this book, Aaron D. Cobb develops a virtue-based defense of the value of perinatal hospice. He characterizes its promotion and provision as a common project of individuals, local communities, and institutions working together to provide exemplary care. Engaging with important themes from the work of Alasdair MacIntyre and Robert Adams, he shows how perinatal hospice manifests virtues crucial to (...) meeting the needs of families in these difficult circumstances. As a work of applied virtue ethics, this book has important normative, social, and political implications for the creation and development of structured programs of care. It grounds the view that communities ought to devote resources to ensure that these programs are widely available and to develop social structures that promote awareness of and accessibility to these forms of care. A Virtue-Based Defense of Perinatal Hospice will be of interest to philosophers working in bioethics and applied virtue ethics, as well as scholars in the fields of neonatology, nursing, palliative and hospice care, and counseling who are interested in the study of perinatal hospice. (shrink)