Hastings Center Report最新文献

This introduction to the special report “Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives” explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age-associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists of five essays, a consolidated set of recommendations from these essays, bibliographies, and other resources. The first essay is a landscape review written for health care professionals to support discussion, debate, and deliberation within professional societies and networks concerning a patient's voluntary choice to hasten their own death in the context of a dementia diagnosis. The landscape review is followed by three essays that suggest how several familiar concepts within care for persons with serious illness should be rethought to better support advance care planning, physician-patient conversations, and access to community-based palliative care and hospice when a person is facing dementia. The final essay presents a bold, practical argument for supporting better lives for people facing dementia, and for dementia caregivers, through primary care, the usual source of care for people with dementia.

Taking steps to build a more dementia-friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they might consider a “good life” with dementia. Specific proposals, such as payment for dementia care managers and new systems to support high-quality, symptom-based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia.

This special report is the major product of a grant-funded Hastings Center research project, codirected by Nancy Berlinger and Mildred Z. Solomon, that began with a set of questions about decision-making by individuals facing the dementia trajectory. These questions were explored through multidisciplinary discussions held during the project's research phase, from 2019 to 2021. The landscape review in this report responds to these questions in a format designed to support discussion within professional societies. Other essays consider how familiar narratives, practices, and policies could be improved to support better lives for people living with dementia and for dementia caregivers.

This report speaks to the concerns of the practitioner or team in primary care, long-term care, or hospice that is responsible for the care of patients facing dementia. These practitioners often work outside of hospitals and have limited opportunities for ethical reflection on challenging cases related to dementia. We aim for this report to be useful to these practitioners and also to research communities by drawing attention to understudied topics.

Berlinger and Solomon coedited this report with Emily A. Largent and Mara Buchbinder. The four of them and Cindy L. Cain, Barak Gaster, Jane Lowers, Thaddeus M. Pope, Timothy E. Quill, and Matthew K. Wynia each coauthored one or more papers in the report. The authors and editors of this report (see the “Editors and Authors” section for brief biographies) are solely responsible for the content of the papers and for the recommendations, which are consolidated from the papers.

The authors and editors are grateful to the anonymous peer reviewers of this report and to these colleagues who participated in in-person and videoconference discussions during the project's research phase: Peggy Battin, Dena Davis, Kate de Medeiros, Chris Gastmans, Adira Hulkower, Jason Karlawish, Eva Kittay, Joanne Lynn, Paul Menzel, Debjani Mukherjee, Tia Powell, Ben Sarbey, Katie Savin, Helene Starks, Janelle Taylor, Ross Upshur, and Liz Weingast.

Sana Baban, Isabel Bolo, Bethany Brumbaugh, Aashna Lal, and Briana Lopez-Patino supported this research as project manager–research assistants. Emma Clark and Lauren Schuck served as project interns.

This special report was made possible by the visionary support of The Robert W. Wilson Charitable Trust, which has generously supported The Hastings Center's research on bioethics for aging societies since 2016. It is dedicated to the memory of Robert W. Wilson. Bob gave great thought to the consequences of aging and illness, and to his own death. The questions he faced as an older adult are some of humanity's deepest questions. Robert Wilson's own story has inspired our work; his philanthropy made this work possible.

This essay looks closely at metaphors and other figures of speech that often feature in how Americans talk about dementia, becoming part of cultural narratives: shared stories that convey ideas and values, and also worries and fears. It uses approaches from literary studies to analyze how cultural narratives about dementia may surface in conversations with family members or health care professionals. This essay also draws on research on a notable social effect of legalizing medical aid in dying: patients may find it easier to bring up a range of concerns, regardless of whether they have any interest in hastening their own death. The essay proposes that health care professionals rethink an idea prominent within their own culture: that conversations about the end of a person's life are inherently difficult. This framing may make it hard for people facing dementia to bring up their concerns about what lies ahead. We suggest a different way to think about these conversations, using the metaphor of “opening the door” to represent inviting a patient to bring up issues of deepest concern.

The Hastings Center addresses fundamental ethical and social issues in health care, science, and technology. Through our scholars’ writing and speaking, and through the work of the many other people who participate in our projects or submit articles to our publications, we shape ideas that influence key opinion leaders, including health policy-makers, regulators, lawyers, legislators, and judges. Our analyses also deeply influence professional practice: from end-of-life care to psychiatric practice to immigrant health care, we have helped to shape the standards of practice adopted by physicians, nurses, and lawyers. Founded in 1969 by philosopher Daniel Callahan and psychoanalyst Willard Gaylin, The Hastings Center is the oldest independent, nonpartisan, interdisciplinary research institute of its kind in the world.

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ON THE COVER: Envisage, by Deidre Scherer, 1993, thread on fabric, 19 × 17 inches.

Courtesy of the artist. dscherer.com.

Pushing back on policies favored by dying patients is a challenging endeavor, requiring tact, engagement, openness to bidirectional learning, and willingness to offer alternative solutions. It's easy to make missteps, especially in the age of social media. Holly Fernandez Lynch shares her experience learning with and from the amyotrophic lateral sclerosis (ALS) community, first as a caricature of an ivory tower bioethicist and more recently as a trusted advisor, at least for some. Patient-engaged bioethics doesn't mean taking the view that patients are always right, but even when disagreement continues, progress is possible if academics and patients recognize the unique expertise each has to offer.

In the article “Fifty Years of U.S. Mass Incarceration and What It Means for Bioethics,” Sean Valles provides an important reminder of the consequences of mass incarceration in the United States and identifies potential roles for bioethicists in addressing this system. My limited view—that of a physician who conducts court-ordered investigations and monitoring of health services behind bars—is that the ongoing failure of most academic and professional organizations to be more effective in this much-ignored area stems from the lack of leaders and staff who have been directly impacted by mass incarceration. As conditions behind bars worsen, and a new war on drugs recoils the spring of mass incarceration, there is a pressing need to train, recruit, and promote people who know the realities of the criminal (and immigration) justice system and its impact on health and well-being. This step can bring a more powerful engagement of bioethics regarding housing, employment, and health care and policing, as well as the numerous and harmful elements of jails, prisons, and detention settings. I provide examples of partners I learn from in this arena, as well as some discrete and technical areas for possible investigation.