Guest Post: David Gibbes Miller, Rebecca Dresser, Scott Y H Kim
Paper: Advance euthanasia directives: a controversial case and its ethical implications

Dutch law allows advance directives to authorize euthanasia for people who can no longer make a voluntary and well-considered choice to end their lives.  People make advance euthanasia directives (AEDs) with the goal of protecting themselves from the burdens of living with dementia.  But it’s become apparent that AEDs don’t always work as they should.  Stories in the media describe troubling cases of euthanasia based on AEDs, as well as other contentious cases in the Netherlands[1] and Belgium involving euthanasia for people with dementia.

A 2016 case involving a woman with Alzheimer’s disease (we call her Mrs. A) highlights many of the issues that make AEDs controversial.  A close look at the Dutch euthanasia review committee’s report on the case reveals gaps between the legal standards governing AEDs and the realities of AED application.  The report also exposes weaknesses in the Dutch oversight system.

The committee gives a detailed account of the disturbing circumstances surrounding Mrs. A’s death.  According to the committee, the language in Mrs. A’s AED was ambiguous, failing to constitute a clear request for euthanasia.  Her doctor performed the procedure without telling Mrs. A that she was about to die.  Although the doctor gave her sedatives, Mrs. A “tried to get up” in the midst of the procedure.  Family members then restrained her so that the doctor could complete the euthanasia.

The committee focused on the doctor’s failure to meet two legal requirements: advance euthanasia requests must be voluntary and well-considered; and euthanasia must be performed with “due medical care.”  In an unprecedented action, Dutch prosecutors have opened a criminal investigation into the case.  Their findings should supply more guidance on the requirements for legal euthanasia based on AED requests.  Our own analysis points to three features of the Dutch system that deserve further attention.

First, the case illustrates how difficult it is to prepare a thoughtful AED.  It’s hard to imagine what it would be like to live with dementia, much less to know when life would become bad enough to make death a welcome alternative.  Putting one’s wishes into clear instructions is another challenge.  Compounding these problems, empirical data suggest that people often prepare AEDs after a dementia diagnosis.  Cognitive decline could compromise their capacity to perform the already difficult task of making an AED.

Second, Mrs. A’s case reveals weaknesses in AED oversight.  Although physicians must consult outside doctors before providing euthanasia, there is no requirement for consultants to be part of the AED preparation process, which is when people actually express their euthanasia requests.  At that point, just one doctor is responsible for evaluating the person’s decision-making capacity and understanding, as well as the clarity of the advance instructions.  Mrs. A’s case also demonstrates the limitations of a retrospective review system.  Errors and abuses in AED application will be uncovered only if doctors report all the relevant details.  Mrs. A’s doctor was quite forthcoming (she reported that she was trying to set a precedent for future euthanasia of patients with dementia), but other publicized cases suggest that not all doctors are as open about the circumstances in which euthanasia occurs.

Third, Mrs. A’s case raises concerns about the power of individual doctors to control the euthanasia process.  Her doctor was free to make her own judgments about whether euthanasia would promote Mrs. A’s autonomy and interests, as well as whether deception and coercion of the patient were justified.  We find it concerning that the physician was free to act on her own, rather than going through a more formal process to determine how to proceed.

Mrs. A’s case also raises more fundamental philosophical questions about euthanasia for patients with dementia—how to resolve conflicts between the instructions in an AED and the welfare of the person with dementia, when someone can tell a person with dementia is suffering intolerably, and whether family and other outside interests should influence decisions to end the life of a person with dementia.  These questions will undoubtedly be the subject of ongoing debate.

At the same time, the ethical debate should expand to address problems apparent in existing assisted death policies.  Mrs. A’s case illustrates challenges in constructing rules that both permit euthanasia for people with dementia and uphold requirements for voluntary, well-considered, and clearly expressed assisted death requests.  Mrs. A’s case also shows that systems could be designed to protect patients with dementia better than the Dutch system seems to do.  As other jurisdictions move forward with creating their own assisted death rules, we hope that officials will learn from cases like Mrs. A’s, constructing systems that achieve adequate protection for people living with dementia.

[1] Dr. Trudo Lemmens’ English translation of this article is available here.