- Earl Warren
Is it ethical to tell a person with dementia, who is agitatedly looking for his long-deceased wife, that she went to the store and will be back soon? If a person with dementia declines to take her medicine, is it ethical to crush it up and mix it with her applesauce? Is it ethical to use GPS technology to track a person with dementia who has a history of getting lost? If a person held strong views on an issue before the onset of dementia, and now has contrary views, which should be honored from an ethical perspective? Does the law provide the same answers to these questions? Should it? And how do ethical and legal responses to these quandaries vary in different countries?
This is just a sampling of the complex questions dissected in the ambitious book The Law and Ethics of Dementia, a collection of essays edited by Professors Charles Foster and Jonathan Herring of the University of Oxford and Professor Israel Doron of the University of Haifa. The authors of the essays — which include clinicians, lawyers, and ethicists — are from different parts of the world although the United States, United Kingdom, and Israel are most heavily represented. Although the topics are weighty, the book is surprisingly accessible and is a fascinating read for Elder Law attorneys interested in ethical analyses of issues that arise when representing people with dementia and their families.
The book is divided into three primary sections. Part I, a comprehensive primer on dementia, includes discussions of the various types of dementia, how they are diagnosed, and the genetics, demographics, and clinical management of dementia. Part II consists of essays about the ethics of dementia and ethical analyses of the types of questions mentioned above. Other issues examined include sexuality and dementia, the ethics of research on patients with dementia, filial responsibilities for providing care, and how a society should allocate scarce resources given the explosion in the number of people with dementia. Part III examines these issues through the perspective of the law.
The book concludes with two shorter sections. The first explores social aspects of dementia such as discrimination, abuse and neglect, driving, and voting. The final section contains moving and highly personal essays by people with dementia and their care providers.
As the editors note in their preface, lawyers who confront these issues haven’t read the ethicists, and the ethicists haven’t read the lawyers. Neither has read the doctors, and the doctors have not read the lawyers or the ethicists. The value of this book lies in bringing these interdisciplinary perspectives, by authors from different countries, together in a single, comprehensive volume. As the editors put it, “Details of drug doses rub shoulders with Kant. That’s how it should be.”
Some of the most interesting essays focus on personhood. These essays ponder, for example, whether personhood survives the onset of dementia or, to put it differently, whether a person’s identity changes with dementia or whether he or she remains essentially the same person. One author provides an example of a person with dementia who was a lifelong conscientious objector. Should that person be removed from a Veteran’s Day celebration in the nursing home where he lives? What if he appears to derive pleasure from the celebration? Another author discusses a lifelong observant Jew who, after the onset of dementia, insists on eating the sausages he sees others enjoying at mealtime. Yet another author queries whether a person, while competent, can legitimately direct the type of care she wants to receive when she is no longer competent. One essay describes these types of ethical dilemmas as “Ulysses contract[s],” after the hero who made his crew tie him to the ship mast with the condition that they not heed his pleas to be released when seduced by the songs of the sirens.
One author emphasizes that, when working through problems related to personhood, it is important to always reaffirm the essential humanity of individuals with dementia. Whatever changes dementia brings about in a person, the person’s humanity, and therefore claim to some form and extent of autonomy, remain.
A fascinating essay compares the approaches to euthanasia and assisted dying in the Netherlands, the United States, and Canada. The Netherlands, where physician-assisted euthanasia is legal if certain conditions are satisfied, has the most permissive approach. But even in the Netherlands, physician-assisted euthanasia is not permitted if the patient has dementia and cannot give meaningful consent, which is similar to the assisted dying laws in Canada and the few states in the United States that have such laws. The author argues that, contrary to concerns that the permissive approach in the Netherlands could lead to the slippery slope of involuntary euthanasia, research shows that few breaches of the protocol occur. In 2010, a citizens’ initiative in the Netherlands called “Out of Free Will” proposed that people age 70 and older who are tired of life should have the right to end theirs with physician assistance. The initiative failed despite support from some prominent Dutch physicians, government ministers, and lawyers.
Another author surveys the laws addressing euthanasia and assisted dying in 39 countries all over the world. Even though most countries do not permit euthanasia or assisted dying, the trend is toward more liberality. All jurisdictions that allow some form of euthanasia or assisted dying require voluntary and informed consent. The essay includes a chart summarizing the laws in the different countries.
An interesting topic addressed in several essays is surrogate decision-making under the Mental Capacity Act (MCA) in England and Whales. Unlike in the United States, under the MCA decisions are based on a person’s best interest without a substituted judgment inquiry of what the person would want under the circumstances. Moreover, different people make different types of surrogate decisions under the MCA. For example, care providers make day-to-day decisions, while doctors and health care providers make medical decisions. If the decision concerns serious medical treatment, a hospital stay longer than 28 days, or placement in a nursing home, the law requires that an Independent Mental Capacity Advocate be appointed to advocate for the patient’s best interest. The United Kingdom allows people to sign advance directives; however, such instruments are used less frequently there than in the United States. Research in England shows that, for a variety of reasons — including agents inaccurately interpreting directives and doctors’ reluctance to follow a directive if it deviates from their opinion of what is in the patient’s best interest — advance directives are often not followed.
The chapters on technology are also intriguing. In an ethical sense, technology is neutral. But ethical issues arise in the context of dementia when, for example, technology is used for surveillance, tracking, or monitoring of a person, thus triggering privacy and autonomy issues. These ethical concerns must be balanced against the benefits of safety, protection, and increased liberty; for example, the ability for someone with dementia to live at home with sensors or for someone who gets lost easily to go for walks with GPS monitoring. Unfortunately, technology also has the potential to depersonalize care, decrease contact by human care providers, and can be used to achieve cost savings rather than what is best for the individual. Similarly, when considering the use of such technologies, the interests of the person with dementia and those of the care provider might not align. One author observes that reflection in the ethics literature, and developments in the law, tend to lag behind technological advancements.
Several essays discuss why ethics and the law are not always congruent. One author notes that, even in cases that involve generally accepted ethical principles, there is often a lag between the evolution of such principles and the development of applicable laws. Moreover, ethical obligations typically exceed legal duties. Thus, achieving congruence between the law and ethics regarding a given quandary in a given jurisdiction is always a work in progress.
The Law and Ethics of Dementia is not a book for anyone seeking easy answers. In fact, many of the authors refrain from offering explicit answers to the difficult questions they analyze. Instead, they raise the questions, the ethical and legal issues implicated, the different approaches to answering the questions, and the pros and cons of each approach.
The book concludes with moving personal essays from people with dementia, their loved ones, and their care providers. In one essay, a woman caring for her husband with advanced Alzheimer’s disease discusses her ethical quandary of telling her husband — with whom she had always been open and honest — “economical” lies such as why the nice new “friend” (a private care provider) wanted to visit him every week. She also writes about going through the stages of denial, anger, sadness, and then some sort of acceptance when a loved one suffers from dementia.
Another spouse writes about how part of her died when she took her husband to a nursing home. She movingly describes the insult of having to sew name tags on her husband’s clothes, as if sending a child to school for the first time.
One essay in this final section of the book is written by a successful businessman who, upon being diagnosed with Lewy body dementia, became a writer, lecturer, and leading advocate in England for people with dementia. The author, who is writing his memoir, concludes his essay with an excerpt from the song “This Is My Life,” by the Welsh singer and songwriter Dame Shirley Bassey:
This is my life
And I don’t give a damn for lost emotions
I’ve such a lot of love I’ve got to give
Let me live
Let me live
This is my life
This is my life
This is my life.
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