Medical Ethics Issues in Dementia and End of Life

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GERIATRIC DISORDERS (JA CHEONG, SECTION EDITOR)

Medical Ethics Issues in Dementia and End of Life William Allen 1

# Springer Science+Business Media, LLC, part of Springer Nature 2020

Abstract Purpose of Review I review ethical and legal challenges for end of life (EOL) care in dementia. Is access to hospice care for dementia patients impacted by Medicare’s terminal prognosis requirement? Are dementia-specific advance directives warranted? How does state legislation affect dementia patients’ EOL options? Should dementia patients’ be able to refuse orally ingested food and fluids by advance directive? Recent Findings The difficulty of predicting time to death in dementia inhibits access to Medicare hospice benefits. Efforts have been made to create dementia-specific advance directives. Advance refusal of artificial nutrition and hydration are common, but the issue of oral ingestion of food and fluids by dementia patients remains controversial. Summary Medicare’s hospice benefit should be made more accessible to dementia patients. State advance directive threshold definitions should be broadened to include dementia, and capacitated persons who refuse in advance orally ingested food and fluids should have their choices honored. Keywords Dementia-specific advance directives . Refusal of orally ingested food and fluids . Comfort feeding only . Definitions of terminal . Palliative care in dementia . Voluntary stopping eating and drinking . Best interest standard . Self-discrimination

Introduction According to the World Health Organization, 50 million persons worldwide have dementia, 60–70% of whom have Alzheimer’s disease. Without breakthroughs in treatment, the population of persons with dementia worldwide is expected to increase to 82 million by 2030 and 152 million by 2050 [1]. This will create a substantial burden on persons with dementia, their loved ones, caregivers, healthcare providers, and the institutions in which they are cared for. Among the types of care that can be challenging for dementia patients and their providers is care at the end of life. Advance care planning (ACP) can be very helpful for patients and families at the end of life, but there are some special issues and challenges for persons with dementia (PwD). Since many terms in this article will be repeated and abbreviated, Table 1 contains a

This article is part of the Topical Collection on Geriatric Disorders * William Allen [email protected] 1

Department of Community Health and Family Medicine, University of Florida College of Medicine, Gainesville, FL 32610, USA

convenient list of these terms and the abbreviations used for them throughout the rest of the article.

Gauging Decisional Capacity as It Progressively Declines The most common tool for staging progressive deterioration has been the Global Deterioration Scale (GDS), which ranges from stage 1, in which symptoms are not obvious, to stage 7, in which severity is profound [2]. These conceptually descriptive stages, however, have been insufficiently validated. Eisdorf et al. showed that