Death at 29 or 75: Are Manifestos Commitments to Die?

By Kelsey Berry

The news media has been reporting on the role and means of one’s own death more frequently recently, buoyed along by manifestos (Ezekiel Emanuel’s “Why I Hope to Die at 75”, Brittany Maynard’s “Compassion and Choices” Campaign) that have caught the attention of a diverse audience. These declarations are perhaps more connected to one another than we may think.

Just last week on this blog, Lauren Taylor authored an excellent post on new public figure Brittany Maynard – the terminally ill 29-year old woman who relocated to Oregon for access to its death with dignity law, and to end her life with a prescription for a fatal medication. Maynard’s story seems to have struck a chord in part due to her youth. She is the youngest advocate currently featured on the website of Compassion and Choices, the largest organization advocating for end-of-life options in the US (the next youngest is 57 years old). She is also a well-educated, well-traveled, well-spoken individual, supported in her choices by her immediate family and physician. When Maynard states that the remainder of her life, if allowed to come to a natural end as a result of her cancer and without the help of medical intervention, will not be of value (and will actually be of great disvalue) to her, we are inclined to believe her evaluation – and perhaps even the normative implications that Maynard claims should follow.

Another public figure recently claimed that a particular part of life is not of (sufficient) value to him in order to keep living it, either. In September, Dr. Ezekiel Emanuel, director of the Clinical Bioethics Department at the U.S. National Institutes of Health and head of the Department of Medical Ethics & Health Policy at the University of Pennsylvania, published his essay “Why I Hope to Die at 75” in The Atlantic. The part of life he wishes to avoid? An old age marred by disability, functional loss, and relinquishment of the values and expectations of a younger individual. He proposes to adopt (for himself only) active rejection of life-sustaining and life-prolonging heath care, beginning at age 75. The effect? Ideally, death from infection untreated by antibiotics — it’s “quick and painless.” 

Are these cases, and manifestos, similar? Each case concerns the acceleration of death and offers judgments about what is valuable. Yet, proposed mechanisms of death and the arguments each rally in support of their respective positions differ. Among the most notable differences though is the context in which the manifestos are voiced, and their reception: Whereas Emanuel’s plan of action is protected by constitutional law, Maynard’s is consistent with the law in just 5 states; and whereas public sentiment seems to have rallied around Maynard, it presented as largely skeptical of Emanuel’s position.

Which ethical concerns underly the legal framework and the variation in reception for these cases? To answer the question, we need to dig a bit deeper than just the similarities and dissimilarities listed above. I’ve put together a table teasing out some potentially relevant considerations, and capturing the apparent facts and claims from each manifesto. Below the table, in lieu of answering the question I posed (that’s what the comment section is for), I’ll mention three more considerations raised by these cases, including the implications of making a public commitment to die. But first — which relevant considerations have I omitted in the table below? Do you have a perspective on how the details in either case relate to permissibility, or may inform the legal framework or public sentiment?

Maynard Emanuel
Desires to die No Yes, at age 75
Greater good sought Avoidance of disability and prolonged death associated with diagnosis; Seeks death that meets certain criteria for goodness Avoidance of disability, functional loss, and change in values and expectations for life associated with aging; Seeks (only) life that meets certain criteria for goodness
Proposed means to greater good Administer prescription medication to oneself Refuse life-sustaining and life-prolonging health care
Will die imminently if proposed means are not undertaken Yes No
Hypothetical alternative to proposed maxim No provision of life-ending medication to patient Forcing treatment on patient
Prospect of life of value to oneself if proposed means are not undertaken Maynard’s assessment – no Emanuel’s assessment – no
Voluntary, informed choice Yes Yes
Intending/Foreseeing Death, Active/Passive Killing/Letting Die* Intending, Active, Killing Foreseeing, Passive, Letting Die
Primary arguments reference Autonomy & choice over the conditions of one’s death; rights-based The goodness of ongoing life (relative to preceding life), for the subject himself
Palliative care? Unaddressed, presumed inconsistent (in its current form) with Maynard’s conception of a valuable life Desired, believed consistent with a good, compassionate death free of suffering
If we universalized their approaches… Physician-assisted suicide is legal. Freely choosing, competent adults rejoice; concern is raised for the vulnerable in society The over-75 would voluntarily refuse curative therapy. Stressed resource allocators rejoice, other effects are indeterminate.
Actual policy recommendations, per the respective manifestos Legalize physician-assisted suicide (… in certain cases?) Discard life expectancy as a measure of the quality of health care, Increase research addressing age-related morbidity

*With particular reference to Francis Kamm’s Chapter “Conceptual Issues Related to Ending Life” in 2013’s Bioethical Prescriptions, Oxford University Press

As promised, here are three additional considerations raised by these cases. The first two extend Taylor’s adept read of the commentaries on Maynard’s case:

(1) What role does the quality of palliative care available to us play in forming our preferences for the conditions of our deaths, and the value we ascribe to lives lived with some disability? Do Maynard and Emanuel’s respective views depend in part on their beliefs (true, or mistaken) about palliative care in the US?

(2) One must be a resident of Oregon in order to use its Death with Dignity law – the same holds for the laws in Washington and Vermont. Is this an instance of rationing services we would rather not provide by imposing extreme levels of inconvenience on the patient?

(3) Maynard and Emanuel have set in motion some particularly powerful precommitment devices by releasing their manifestos. Americans expect Maynard to take her life on November 1, and Emanuel to reject diagnostic tests beginning in 2027. Are these expectations useful in enabling each figure to exercise her or his will, or might they count as coercive elements that impede decision-making in critical moments? Further, what is to become of Maynard’s wishes if she loses the capacity to administer the fatal medication ahead of November 1? Emanuel was able to put in place a detailed advance directive in the event that he is no longer capable of refusing care later in life. But, as far as I know, Maynard does not have an option legally available to her that will ensure her life is ended by medical intervention, if she does not do it herself.

Here’s hoping that some comments will continue the discussion on these interesting cases.

kelseyberry

kelseyberry

At the conclusion of her fellowship year, Kelsey Berry was a PhD candidate in health policy and ethics at Harvard University. She holds a BA in political philosophy and neuroscience from Princeton University. Kelsey's research interests include theories of justice in global health, partiality and fairness in resource allocation, and ethical issues in the health of vulnerable populations. Kelsey was a 2014-2015 Student Fellow at the Petrie-Flom Center, during which she worked on a research project entitled "Rights and Duties Against Conditional Funding Agreements in Global Aid." The paper presents a normative argument for holding global health development assistance channeled through non-governmental organizations to standards of egalitarian justice, and assesses PEPFAR's "anti-prostitution pledge," which was challenged in a landmark 2013 Supreme Court case, relative to these standards. Kelsey's other work includes empirical research on issues in mental health policy, like assessing progress in achieving equitable insurance coverage for mental health disorders subsequent to the 2008 federal mental health parity law and the Affordable Care Act. She planned to continue such work with the Department of Health Care Policy at Harvard Medical School, and on a 2015-2016 training grant with the National Institute of Mental Health.

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