Mrs. F, seventy‐five, was diagnosed with Alzheimer's. She and her spouse often discussed how to handle the progression of the disease. She was adamant about not coming to the point where she would be unable to recognize herself, her husband, or their son and daughter. The manner she chose was voluntarily stopping eating and drinking (VSED), and she chose a specific date on which to carry out her plan. She asked her husband to promise, should she ever waver and request (...) nutrition or hydration, to remind her of the reasons she had chosen for pursuing this path.Mrs. F's ability to function was beginning to wax and wane. Sometimes she was her old self, and sometimes she had no recollection of her past identity. After she voluntarily stopped eating and drinking, the couple's promise created a dilemma for her professional caregivers. She asked for food and drink. Her husband and family reminded her of the reasons she had chosen VSED: “Remember, you didn't want to live in a nursing home, and you didn't want us to be responsible for caring for you at home. You believe that stopping eating and drinking will allow you to die with dignity.” Although they also asked Mrs. F, “What do you want to do?” the family asked the professional caregivers to respect her original choice to stop eating and drinking. Mrs. F still evidenced decision‐making capacity but often did not recall having chosen VSED. She again requested food and drink, from family and the professional caregivers.Can VSED be carried out for a patient whose advanced dementia makes disciplined voluntary action difficult? (shrink)

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 chapter introduces readers to the aims and scope of the book. Readers are given the social and scholarly context in which the book emerges. The introduction suggests that the history and philosophy of hospice care contain moral values that can be resonant or dissonant with larger social values, giving those who work in hospice organizations an important place in the national discussion about terminal care. Finally, it offers a brief explanation of the goals of each chapter in the book.

There is a growing movement to increase access to palliative care by declaring it a human right. Calls for such a right—in the form of articles in the healthcare literature and pleas to the United Nations and World Health Organization—rarely define crucial concepts involved in such a declaration, in particular ‘palliative care’ and ‘human right’. This paper explores how such concepts might be more fully developed, the difficulties in using a human rights approach to promote palliative care, and the relevance (...) of such an enterprise to public health ethics. (shrink)