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)

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 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 (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)

Over the last century, and especially since the publication of the Belmont Report in 1978, respect for persons, as exemplified by respect for autonomous decision-making, has become a central tenet in the practice of medicine. The authority of cognitively competent adults to make their own healthcare decisions is enshrined in both law and practice in most advanced industrialized nations. The right to consent to or to refuse medical interventions is virtually absolute, but is contingent on the provision of materially relevant (...) information about the benefits and burdens or risks of the proposed treatment as well as the freedom from coercion by others, especially healthcare personnel. This power also extends to the kinds, amounts and details of the proposed intervention, including the option to decline to hear anything, if one so chooses, assuming that this is a rational choice. This respect transfers to other competent individuals who are authorized as surrogates to decide for those who have temporarily or permanently lost the capacity to make their own healthcare decisions. (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)