By Wayne Shelton and Cynthia Geppert.

The case of Margo, introduced by Ronald Dworkin in 1993, described an individual with advanced dementia who would spend hours happily gazing at the same magazines, interacting in discrete experiential moments with those around her, and eating heartily. By all accounts, Margo was a happy individual. However, years earlier prior to her dementia, she made her wishes clear that if she developed advanced dementia, she did not want her life extended in any way, which raised a range of perplexing practical questions. If she contracted an easily treatable pneumonia, should she be denied simple, lifesaving, antibiotic treatment that would end her happy life? For that matter, should she be denied food and put on a morphine drip, consistent with her prior wishes?

The case of Margo, and the problems it generated, precipitated an intense, philosophical debate, about the nature of the evolving self and the boundaries of its moral authority in end of life decision-making for patients with advanced dementia. The heart of the debate has revolved around the relationship between individuals’ former rational or then self’s critical interests that reflect their essential life plans, and their current now self that happily lives in the immediacy of discrete moments driven by biological, experiential interests. Thirty years later, the debate continues, as the population both in the United States and globally is rapidly aging, which represents the biggest risk factor for the development of dementia.

The questions of how to appropriately care for individuals with advanced dementia and at the same time to follow their prior wishes as expressed in an advance directive present an urgent global healthcare challenge of providing quality healthcare to a booming population. Professional organizations have attempted to make clear recommendations for optimal end of life care for patients with advanced dementia and at the same time ensure that the care is provided is as consistent as possible with patients’ and families’ preferences and values. Yet, particularly in the United States, they sometimes walk a fine line in balancing the tension between the opposing values of honoring patient’s and surrogates wishes and preventing harm and providing benefit in the context of the shared decision-making that has become the ethical procedure for resolving these ethical conflicts. There is a growing emphasis on respecting patients’ advance directives as well as honoring their surrogates’ wishes for end-of-life care planning, using the model of shared decision-making. This approach can become ethically problematic if providers are expected not to feed a patient with dementia who is hungry, or on the other hand, comply with the wishes of a patient surrogate who expects contraindicated treatments be provided, such as inserting a G-Tube in a patient with advanced dementia.

These issues reflect a growing public awareness about dementia and the understandable fear that many aging people have of losing control of their lives and awareness of all that they hold dear, including family, friends, work, even their own identity. To prepare for this possibility about half of those over 60 take steps while they have capacity, some upon being given a diagnosis of dementia, to express in an advance directive their preferences for how they want future care provided when they lose capacity. Though an advance directive will increase the chances that unwanted, life-prolonging medical care will not be provided, an individual may live for many years during which time caregivers and providers will be making medical decisions at crucial points on that individual’s behalf.

A major impetus for writing our recently published JME article was that, as the bioethical and philosophical debate continued, we worried that many capable patients diagnosed with early dementia, as well as caregivers, and providers, may be left feeling unclear about the appropriate use of advance directives as they apply to patients with dementia, particularly around food and nutrition. Based on our reading of this debate, we hope our JME article will be helpful in providing some practical guidelines.

Paper: Limits of advance directives in decision-making around food and nutrition in patients with dementia

Authors: Wayne Shelton and Cynthia Geppert

Affiliations: Alden March Bioethics Institute, Albany Medical College, and University of New Mexico School of Medicine

Competing interests: None declared