Special report reviews options, analyzes care inequities, and makes recommendations

A new Hastings Center special report considers how America’s aging society responds to the needs and concerns of people facing dementia. New therapies that may slow progression of this terminal condition have begun to emerge, but there is no intervention to prevent or reverse it.

 “Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives” is the major product of a Hastings Center research project, codirected by Hastings senior research scholar Nancy Berlinger and President Emerita Mildred Z. Solomon. Berlinger and Solomon are editors of the special report, with health policy and dementia research expert  Emily A. Largent of the University of Pennsylvania’s Perelman School of Medicine and medical anthropologist Mara Buchbinder of the University of North Carolina School of Medicine.

“The report offers health care professionals and professional societies a framework for discussion, debate, and deliberation about issues not fully covered by existing guidance on decision-making concerning medical treatments and technologies for other age-associated conditions,” says Berlinger. “The report also speaks to the choices an aging society makes, through health and social policy, that support or undermine the experience of living with dementia.”  Its recommendations--for policymakers, research funders, and others--include how to reduce the financial hardships and social isolation associated with this diagnosis.

The editors’ introduction explains how dementia--a strongly age-related, terminal condition currently affecting 6.7 million people and 11 million mainly unpaid family caregivers in the U.S.--shapes individual lives over years, revealing inequities in how dementia care is financed.

A landscape review, “When People Facing Dementia Choose to Hasten Death: The Landscape of Current Ethical, Legal, Medical, and Social Considerations in the United States,” discusses options for hastening death in the context of terminal illness, clarifying their legal status, how medical personnel are involved, and how certain provisions do, do not, or may apply to people facing dementia. These issues include professional involvement in the care of terminally ill patients who are considering voluntarily stopping eating and drinking (VSED), an emerging topic in health law and health care practice. “Recognizing that professional practice standards for such situations are evolving, unsettled, or unclear, our goals for this review are to describe what is known, to identify open questions, and to serve as a resource for discussion and debates on professional ethics,” write authors Emily A. Largent, Jane Lowers, Thaddeus Mason Pope, Timothy E. Quill, and Matthew K. Wynia.

Three essays reconsider familiar ways of thinking and talking about decision-making and care concerning people nearing the end of life to better reflect the needs and concerns of people facing dementia. For example, “Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis” takes a critical look at the “six-month rule.” The idea that terminal illness is measurable as a six-month prognosis is reflected in eligibility criteria for Medicare hospice coverage and in other ways of thinking about “end of life” needs, choices, and financing. Cindy L. Cain and Timothy E. Quill argue that six months is not a meaningful marker for people with dementia, concluding that “we, as a society, need to imagine how resources, including resources financed by the Centers for Medicare and Medicaid Services, can be better deployed on behalf of people living with dementia and on behalf of their families, who are often unjustly burdened with unreimbursed costs and with the direct management and provision of care.”

Other essays rethink “difficult conversations” and “advance directives” to be more inclusive of the dementia trajectory, drawing on insights from research and practice.

In the final essay, “What Makes a Better Life for People Facing Dementia?” Barak Gaster and Emily A. Largent offer a bold yet practical argument for aligning primary care for people facing dementia with health and social policy changes supportive of living with dementia and of dementia caregiving. This essay draws on the insights of the “dementia-friendly” movement and on the authors’ clinical and research knowledge of people facing dementia, and it reflects primary care and noninstitutional settings as the usual site of care for Americans living with dementia. This essay offers examples of promising programs in the U.S. and the policy barriers to expanding them.

The report includes 10 recommendations for policymakers, research funders, clinical and legal practitioners, and professional societies. These recommendations include calls to:

• Repair gaps in the public financing of dementia care services and supports through the Centers for Medicare and Medicaid Services to reduce unfair cost burdens associated with dementia relative to other age-associated terminal illnesses.
• Develop appropriate evaluative metrics for programs supportive of people living with dementia, given that health care cost savings or restored physiological function may be unattainable due to disease progression and increasing care needs.
• Study requests for VSED by people facing dementia to inform the development of ethical guidance for health care professionals, family caregivers, and other care workers on how to manage these requests.
  

The full open-access report is available here.

This special report was made possible by a grant from The Robert W. Wilson Charitable Trust, which has generously supported The Hastings Center’s research on bioethics for aging societies since 2016.