EXECUTIVE SUMMARY

Court challenges and resistance are expected for recently developed dementia-specific advance directives despite strong demand voiced by patients, family, and providers. Some concerns include the following:

• Clinicians are concerned about whether directives will stand up to legal scrutiny.

• Patients want to be sure that long-term care clinicians adhere to the directives.

• Recent legal cases suggest that absent a completed directive, judges will not support withholding hand-feedings.


Recently developed dementia-specific advance directives spotlight multiple unresolved ethical and legal issues for patients, families, and providers.

“The numbers of people worried about dementia is very high,” says Barak Gaster, MD, a professor of medicine at the University of Washington in Seattle.

Many people have very clear wishes about what medical interventions they would want for themselves if they developed advancing dementia. “It is a striking gap that standard advance directive forms are silent on this question,” says Gaster.

With about one-third of people over the age of 85 now living with dementia, it has become the most common reason people lose the ability to guide their own care. The number of people living with dementia is expected to triple in the coming years.1

“There will likely be increasing awareness of the need to provide simple ways for people to communicate their preferences for life-prolonging medical care if they develop advancing dementia,” says Gaster, lead author of a recent paper on this topic.2

A new dementia-specific directive allows people to specify the level of care they wish to receive if diagnosed with various stages of dementia. Gaster, one of the tool’s developers, says, “There has been tremendous interest in the tool. This clearly strikes a nerve for many people.” The tool has been downloaded more than 100,000 times, with downloads continuing at a rate of more than 500 weekly. (The free tool can be found at: https://bit.ly/2pQdt0M.)

“As far as its legal standing is concerned, it is best thought of as a standalone document designed as a communication tool to one’s health proxy or as ... an addendum to be attached to someone’s standard state-specific advance directive,” says Gaster.

End Of Life Choices New York’s dementia directive allows people to stipulate in advance that they do not want to be hand-fed if they develop severe dementia. (For more information, visit: https://bit.ly/2QJuXHt.)

“There is a great deal of interest in this directive, from all types of audiences,” reports Judith Schwarz, RN, PhD, the group’s clinical director. The document offers the option of assisted hand-feeding if a patient allows it during the final stages of the disease or to stop all assisted eating and drinking even if a patient seems willing to accept it. Palliative care is provided once all oral feedings are stopped.

Schwarz expects to see growing public awareness drive change. “My work has arisen directly from patients with early diagnoses of dementia,” she says. “They wanted to know what they can do legally to prevent the worst kinds of insults, the final months and years, this godawful disease imposes.”

Caregivers are understandably concerned about their perceived duty to feed frail, vulnerable elderly patients who appear to want to eat. “Our directive is very specific about stipulating that even if the mouth opens when touched by a spoon, it does not mean the patients want to be fed or that they have changed their mind,” says Schwarz.

One as-yet-unresolved legal question is whether hand-feeding is considered healthcare or ordinary care that is required to be given to all people. Some state regulations stipulate that hand-feeding must be provided. “It’s clearly a work in progress. This is not settled one way or another,” says Schwarz. “The directive has not yet faced judicial review. But it will for sure in the future.”

Another significant difficulty arises when patients become residents of long-term care facilities. “Long-term care clinicians are unfamiliar with such documents and are, of course, risk-averse,” says Schwarz. One case currently in litigation involves a patient who currently has decision-making capacity, but will inevitably lose cognitive function in the near future. The patient wants to be sure that the long-term care clinicians will honor her choices in the dementia directive.

“We already have a number of lawyers who have offered their services pro bono when such legal challenges are brought,” says Schwarz. Additional court challenges from family members, where long-term care administrators refuse to honor the dementia directives, are likely to crop up.

Recently, Schwarz met with about 50 ethics committee members. “Clinicians are, of course, seeing many patients with advanced dementia whose families are very sure they would not want to be spoon-fed any longer,” says Schwarz. Recent legal cases suggest that absent a completed directive, judges will not support withholding hand-feedings.3,4

“Members of ethics committees can — and should — bring moral clarity to these discussions,” says Schwarz.

Many clinicians express concern about whether the directive would stand up to legal scrutiny. Schwarz notes the evolution of how patients’ autonomy has been treated by the courts over the years: “There was a time when to take someone off a ventilator was considered murder.”

Although the legalities involved are complex, Schwarz asserts that the ethics are not: “At its heart, it’s like any other advance directive. It’s a very simple, autonomous choice that some people would like to make.”

REFERENCES

1. Prince M, Wimo A, Guerchet M, et al. World Alzheimer report 2015 — the global impact of dementia: an analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International, 2015.

2. Gaster B, Larson EB, Curtis JR, et al. Advance directives for dementia: Meeting a unique challenge. JAMA 2017; 318(22):2175-2176.

3. Bentley v Maplewood, 2015 BCCA 91.

4. Carter T. Oregon law requires Alzheimer’s patient be spoon-fed despite advance directive. ABA Journal, Sept. 20, 2016. Available at: https://bit.ly/2d02UC0.

SOURCES

• Barak Gaster, MD, Professor of Medicine, General Internal Medicine, University of Washington, Seattle. Phone: (206) 598-3575. Email: barakg@uw.edu.

• Judith Schwarz, RN, PhD, End of Life Choices New York. Phone: (212) 726-2015. Email: judy@endoflifechoicesny.org.