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Defining Death: One Size Fits All?

photograph of rose on tombstone

In 1844, Edgar Allen Poe published a short story titled The Premature Burial. The main trope at play in the story was the common Victorian fear of being buried alive. The main character suffers from a condition which causes him to fall into catatonic states in which it is difficult to detect breath. The body exhibits little to no motion. In response to his all-consuming fear, he designs a coffin that will allow him to alert the outside world through the ringing of a bell if he is confused for dead and accidentally buried alive.

Determining when death has occurred is not an easy matter, either historically or in the modern age. In some cultures, family members would wait until putrefaction began in order to bury or otherwise perform death ceremonies with the bodies of their loved ones, just to make sure that no one was being disposed of who was, in fact, still alive. As time progressed, we used the presence of circulatory and respiratory functioning to determine that someone was alive. The modern world presents a new set of puzzles: we are able to keep the circulatory and respiratory function going indefinitely with the help of medical technology. When, then, is a person dead?

The way that we answer this question has significant practical consequences. Hospitals are frequently low on beds, personnel, and other resources, especially during outbreaks of disease. Patients can only permanently vacate those beds when they are well enough to leave or when they are dead. We also need to be able to harvest certain organs from donors, which can occur only after the patient is dead.

What’s more, it would be unusual if there was variation among definitions of death across the country. The result could be that a person is dead in one state and not in another. In response to this concern, in 1981, the Presidential Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research arrived at the following definition which they expressed in the Uniform Definition of Death Act: An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination must be made in accordance with accepted medical standards.

Since the time that the Commission took up the issue, this definition has faced a range of objections from all sides. No one is particularly bothered by the first criterion, but the second is the source of much debate. Some object that the Presidential Commission requires too much for a person to be considered alive; they argue that it is not the case that the entire brain must cease to function, only that the higher brain has irreversibly stopped working. They reason that it is the higher brain that is responsible for the characteristics that make an entity a person: consciousness, personality, memory, a sense of psychological continuity, and so on.

Others argue that the Commission has not gone far enough, in other words, they argue that a person who is kept alive on a ventilator is still alive, even when they have no brain function of any kind. It is possible for the body to do things while kept alive on a ventilator that only living bodies can do; among other things, bodies can go through puberty, carry a fetus to term, grow taller, grow hair, and so on. Some argue that to call such bodies “dead” is just demonstrably inaccurate.

It seems that our social conception of death has a crucial metaphysical component. Most cultures with advanced medical technology don’t tend to wait to declare a person dead until they start to decay. It’s worth asking — what, exactly, is it that we are trying to preserve when we categorize a being as “alive”? Are we being consistent in our standards? Under ordinary conditions, we wouldn’t hesitate to say that grass, clams, or coral reefs are alive (when they are). Would we use the same standards to determine when these organisms are no longer alive that we would use to determine whether a human person is no longer alive? Some argue that testing for the biological functions that give rise to personhood is the right approach when it comes to determining the status of a human being. Are humans the only organisms to whom we should apply that test?

Questions about death are philosophically compelling to reflect on in the abstract, but they are also practically important for everyone. The decision that someone is dead has significant consequences that will inevitably be devastating to some people. Consider the case of Jahi McMath and her family. In 2013, Jahi underwent a standard procedure to get her tonsils removed; she experienced severe blood loss which led to significant brain damage. She was declared brain dead on December 12th, 2013, three days after the procedure. Jahi’s family fought to overturn the diagnosis, but a judge agreed with the hospital that Jahi was brain dead. The family did not give up, but transferred Jahi to a private facility for care where she was connected to life-sustaining technology for almost four years. Jahi was declared dead in June, 2018; the cause of death listed on her death certificate was “complications due to liver failure.” Jahi never regained consciousness.

Jahi’s mother sold her house and spent all the money she had to pay for Jahi’s care, and she does not regret doing so. She appreciated the opportunity to watch Jahi change and grow, commenting to reporters, ““She grew taller and her features started to change and she went through puberty and everything. And I know for sure, dead people don’t do that.”

According to the Uniform Definition of Death Act, Jahi died in 2013, not in 2018. Not everyone agrees with the standard established by the act. People have different religious, cultural, and philosophical understanding of when death occurs. That said, a person isn’t alive simply because there is someone willing to insist that they are — Julius Caesar and Elizabeth I are dead regardless of anyone’s protestations to the contrary. The time and resources of medical professionals are limited. When someone believes that the life of someone they love is at stake, they may be willing to pay any amount of money in order to keep hope alive. Liberal democracies allow for pluralism about many things. Should the definition of death be one of them?

Life, Death, and Aging: Debating Radical Life Extension

photograph of grandmother and grandson under blankets with a book laid down

An article from The Atlantic has resurfaced in the last week, sparking new discussions about the impact of healthcare on our end of life desires and decision-making. In 2014, Ezekiel J. Emmanuel articulated his reasons for wanting to die at 75 in a provocative op-ed. In 2019, he confirmed that his position has not changed. Emmanuel’s worry is that,

It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

When polled in 2016, over half of people in the U.S. would not want to adopt enhancements that would enable them to live longer, more healthy lives. While 68% of those polled responded that they thought “most people” would “want medical treatments that slow the aging process and allow the average person to live decades longer, to at least 120 years,” only 38% of respondents said that they personally would want such treatments. In this same poll, 69% were almost in agreement with Emmanuel, that their ideal lifespan would be 79-100 years (only 14% said 78 or younger, and Emmanuel is actually in this small camp). There are many considerations that go into this preference.

One motivation against life extension is thinking that we are only deserving some natural amount of time on this earth, perhaps in order to fulfill a religious or spiritual commitment to “move on.” Over half of the respondents in the Pew survey considered treatments that extend life to be “fundamentally unnatural.” The distinction in bioethics between “treatment” and “enhancement” could be playing a significant role here; it is easy to justify intervention to make someone whole, to restore or to ensure a state of health. Such interventions are deemed “treatment,” and are more easily covered by insurance in the U.S. “Enhancements,” on the other hand, make one better than well, or do not have wellness as an aim. Of course, there are gray areas in medical interventions that don’t fit neatly into one or the other of these categories. Obstetrics, for example, doesn’t aim to treat an illness, but nor does it seek to “enhance” the future parent.

For many, considering a life without an end point is disorienting in the extreme. Philosophers from Martin Heidegger to Bernard Williams were committed to the idea that death – a final conclusion – is necessary for bringing meaning to life. If life’s meaning is similar to the meaning that a story’s narrative has, then we may think of it as consisting of stages, with different stages shaping the import and significance of the events that came before. If a life were to go on indefinitely, it could undermine the ability to shape a narrative or derive purpose in each stage. Radically or indefinitely delaying the conclusion can be seen to thus diminish or undermine the meaning in one’s life.

For many, the considerations against life extension are grounded less in theory and more in practice. If lives are indefinitely extended, this will increase the elderly population. The potential additional strain on environmental and social resources of the additional population could be cause for concern (a la Malthus). The impact on the economy, if living a longer life means staying in the workforce longer, could mean that young people have a harder time entering the workforce when competing with workers that have decades of experience. If those who extend their lives do not remain in the workforce, then different social pressures would arise – supporting a booming retired population, for instance. Regardless of the labor considerations, an extended lifespan could alter the shape and meaning of relationships. Marriages that previously consisted of a commitment of less than 50 years now may seem like unrealistic arrangements if people can anticipate living another 50 years past the average lifespan today.

Further, the practical considerations for and against radical life extension are enmeshed in our current understandings of health care, aging, and dependence. Our worries of becoming a burden to our loved ones should our health conditions require some degree of dependent living is contingent on governmental structures not providing support, either directly to those living with conditions of dependence or to those who will care for them. The way we consider the connection between dependence and burdening is also wrapped up in the way we value IN-dependence.

In the end, the theoretical question regarding the morality of extending the average human lifespan is inextricably tied to the realities of the social and political systems in which we live.

Marieke Vervoort and Deciding How to Die

On Tuesday, October 22nd, Belgian Paralympian Marieke Vervoort ended her life. She had signed papers eleven years prior gaining authorization to decide when to end her life, as medical aid in dying is legal in Belgium. Vervoot had a degenerative spinal disease that caused intense pain and interfered with her ability to sleep, sometimes limiting her rest to minutes a night. She won multiple Olympic medals for wheelchair racing: gold and silver medals at the 2012 London Olympics, and more in Rio de Janeiro. In interviews she explained how participating in sports kept her alive, and how the intensity of her pain could at times make those around her pass out.

Vervoot expressed that without the authorization papers she obtained over a decade ago, she would have chosen to die sooner. “I’m really scared, but those papers give me a lot of peace of mind because I know when it’s enough for me, I have those papers,” she said. “If I didn’t have those papers, I think I’d have done suicide already. I think there will be fewer suicides when every country has the law of euthanasia. … I hope everybody sees that this is not murder, but it makes people live longer.” Vervoot’s statement suggests that allowing people to make their own determinations regarding ending their lives is actually a way of valuing life – not only out of respecting their autonomy (their ability to make choices regarding their own life paths), but also offering encouragement and protection.

This attitude towards aid in dying is consistent with cases in the US, though there are important distinctions in the law between Belgium and the states where physician aid in dying is legal. The US requires a person to have a terminal illness, assessed by two diagnosing physicians, in order to be considered a candidate for aid in dying. However, the trend of patients going through the process of seeking aid in dying, but ultimately looking for something more complex than to die immediately bears true: a full one-third of the patients in Oregon and California do not end up taking the prescribed medication after going through the procedures of procuring aid in dying. This tendency is attributed to the importance of having control over the manner in which you die, for which having the option (rather than following through) is sufficient.

In California and Oregon, “pain” does not make the top three reasons that a patient reports seeking aid in dying; “autonomy” typically tops the list. As for people in all stages and conditions of life, having control over the narrative and shape of one’s life is critically important. One of the principal harms of illness is that it can take so much of this control away from a person.

It has been twenty years since Oregon adopted its Death with Dignity Act, and now most Americans support physician aid in dying. The characterization of these policies, now passed in nine states (plus DC), as “deciding how to die” plays a significant role in the public discussion. But this support is only currently available for patients who are terminal, not patients like Vervoot.

The difference between cases like Vervoot’s and cases that are legal in the US is the presence of a terminal diagnosis. This constraint restricts aid in dying from being available to those patients with dementia or with other degenerative conditions, like Vervoot or actor/comedian Robin Williams.

There are a cluster of cases that raise worries about broadening aid in dying policies to include patients beyond those with terminal diagnoses. Cases where individuals are not getting sufficient treatment, and therefore they may have a reasonable chance at a good or worthwhile life (by their own standards). And yet, the healthcare system’s not providing such options cause justifiable concern among disadvantaged groups. In such cases, a patient may opt to end their life due to injustices present in the healthcare system rather than an objective terminal diagnosis.

It is telling that the policies in the US are promoted by groups with names like “Death with Dignity”; the effects of illness on terminal patients’ lives are the focus of the discussion, empowering patients to make decisions about the end of their lives in the face of degenerating conditions and abilities. However, the very conditions said to be threatening patients’ “dignity” can be the very same conditions that differently abled individuals live with every day. For this reason, some disability rights advocates find some aid in dying discourse demeaning for people that judge their lives to be meaningful and fulfilling while also living with conditions that require significant interdependence and care: “Some right-to-die activists have written about assisted dying as an antidote for indignity that occurs at the end of life, such as needing help to dress or use the bathroom. If you’re a person with functional limitations, that’s a real slap in the face,” says Carol Gill, PhD, APA working group member and professor of disability and human development at the University of Illinois at Chicago. The stigma of living a dependent life alters doctors’ and patients’ assessments of the quality of life, and so rather than providing resources to reduce the burden of the “debilitating” conditions, physicians sometimes offer aid in ending life: “There are no assisted-dying laws that guarantee those resources, and that feels discriminatory to a lot of people with disabilities,” she says.

Practical considerations must inform the moral ones in cases like these, and the reality of healthcare disparities in the US make the question of physician aid in dying worrying for many. If patients are more likely to seek aid in dying because their health needs are not being met, this presents a real justice concern because health care resources are not being distributed equitably or anywhere near sufficiently. These factors for choosing aid in dying will weigh more heavily for disadvantaged groups, and facing the decision to hasten death could be less of an empowering narrative than the one Vervoot tells (she said it gave her control and put “my own life in my hands”). These concerns regarding vulnerable populations and the value-laden judgments regarding which lives are worth living even count against the policies allowing aid in dying that the US has passed.

There are a variety of conditions that could interfere with someone’s ability to live what they deem to be a worthwhile life. Both psychological and physical conditions can bring about such states, and terminal and non-terminal conditions may meet this standard. The relevant distinction may turn on whether reasonable hope of treatment exists or not. As we have seen, there are a number of practical difficulties to determining which cases fit into which category, especially given the inadequate care currently on offer and the unjust distribution across vulnerable populations.

In Caring for Dementia Patients, Testing the Limits of Patient Autonomy

Image of a caretaker wheeling an elderly person in a wheelchair.

NPR recently reported on a new advance directive (AD) form developed by a New York end-of-life agency. This AD enables patients to express in advance the preference that they would not want to be given food or water, should they be diagnosed with severe dementia. This AD broaches new territory, as the patient’s decision, as expressed on the form, implies that they would not want to be given any food or water, even if they were still cooperative in eating food and appeared to want it. Such a possibility has not yet been formalized in an AD for dementia patients.

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