The Political Intentions at the End of Life
Notes from a Family Meeting, Vol. 4, No. 7
I didn’t go to medical school to become a warden.
That’s what it can feel like sometimes working as an inpatient psychiatrist, caring for involuntarily committed patients who are psychotic, manic, suicidal, and, in general, don’t want to receive your care. The whole enterprise is predicated on recognizing that people with severe mental illness can become so impaired that they might harm themselves or others. In the state where I worked, the definition of harm is pretty broad: not just suicidal thoughts and actions, but personal neglect that could harm oneself could meet that definition too.
Some days, nearly every patient I saw was in the hospital against their will. Some didn’t know where they were, but others did and hated it. Despite my training in psychiatry, I wasn’t emotionally prepared to experience this kind of relationship with my patients day after day. Some people would get well enough to discharge, only to show up in an emergency department a week or two later.
Society doesn’t provide great support to suggest any of this really mattered. Mental health care is underfunded, law enforcement misunderstands mental health crises (sometimes with fatal consequences), and the general perception of inpatient mental health treatment is still formed by One Flew Over the Cuckoo’s Nest. The twin challenges of caring for patients who didn’t want treatment in a culture that appeared ambivalent about treating them eroded whatever youthful optimism I brought to work on the first day.
I don’t work in inpatient psychiatry anymore, but questions remain. Why save someone from suicide? Should society permit, approve, or even assist in ending the lives of people who want to die? At the extreme end of suicide prevention is involuntary hospitalization (and even one-to-one attendance beyond that, a total lose of privacy). Is that a good thing? Are the same values that once undergirded suicide prevention still valid today? And how does all this relate to other forms of suicide, like assisted suicide, and euthanasia?
Asking the Right Question
So much of the conversation around assisted suicide and euthanasia (ASE) isn’t careful to parse out two major issues: the question of whether one should end one’s own life, and the separate question of whether society should permit, approve of, or assist their choice. The former question is ancient. It has strings attached to The Big Questions, like what makes for a good life. The latter question, in its medical form, is younger, maybe a century or two. It has strings attached to some of those Big Questions, as well as other, field-specific questions, like what is medicine for.
Because suicide is medicalized in the Western world, desiring it has been de facto associated with some kind of mental illness. History shows that’s not always the case (e.g., the state-mandated suicides of Seneca and Socrates; the honor-bound seppuku of samurai; the grief-stricken sati of Indian widows). However, in our present age, the vast majority of people who die by suicide were either known to have a mental illness before hand, or were discovered to have a mental illness after the fact via “psychological autopsy.”
Our main impetus for suicide prevention, then, has been grounded on the two beliefs that people who want to die by suicide aren’t acting autonomously, and that suicide itself is not good. As more jurisdictions begin to legalize ASE for mental illness we see that the former belief motivated more suicide prevention than the latter. This also means that mental health clinicians, regardless of whether ASE is legal for mental illness, have taken a step back from judging the value of suicide itself and limit themselves instead to the more clinical determination of whether a person is acting autonomously.
This dovetails with modern medicine’s enchantment with respect for autonomy, and broader society’s grounding in liberalism.1 The state grants coercive power to psychiatrists and other mental health professionals because in cases where suicide prevention is required, the state interest in preserving life trumps a non-autonomous desire to die.
But what if the desire were autonomous? This is so-called “rational suicide,” which includes ASE. Only a few (~1%) are referred for psychiatric evaluation when they request assisted suicide (AS) in a state like Oregon. Untreated mental illness can, in the United States, disqualify someone from receiving AS, but it seems the majority of folks who request it don’t have such impairments.2
The major difference between whether society views one act as permissible and another as impermissible is whether it’s undertaken autonomously. The presupposition here is a hallmark of liberalism: this is my life and no one should coerce me to do anything unless I might harm someone else. If I know what I’m doing, I should be left alone to do it. Some people might push further to argue that the state has a responsibility to facilitate certain projects of mine, but at the very least, no one should interfere. In the United States, the judicial history of medical decision-making traces this path, although, unlike Canada, our Supreme Court has found no constitutionally protected right to ASE.
In the case of ASE, it’s not only that this is an autonomously chosen act, but that it’s undertaken for proportionately grave reasons (e.g., intractable suffering). Jeremy Davis and Eric Mathison have argued that such a requirement collapses into respecting autonomy anyway: “…the suffering condition is fundamentally subjective: whether or not it is satisfied turns on the patient’s judgements of what she finds tolerable.” Therefore, the only qualifying criterion for ASE should be that it’s autonomously undertaken. For those who support ASE at all, though, this has the consequence of relegating those who can’t autonomously request it (e.g., children, people with cognitive impairment, people with severe mental illness) to the very suffering they intend ASE to address. This is what’s helpful about Davis and Mathison’s argument in favor of the autonomy only view. ASE, at root, isn’t about assuaging suffering, but sustaining the project of liberalism by ensuring individuals have the tools needed to carry out their projects (in this case, to efficiently end their own lives). ASE is first a political instrument before it’s ever a medical intervention.
Davis and Mathison’s autonomy only view has problems that I won’t wade into here, but if one sticks with it, then traditional methods of suicide prevention remain unscathed. People who threaten to kill themselves in the throes of untreated mental illness aren’t behaving autonomously and therefore can be prevented for acting on their desire. But this isn’t what’s proposed in some countries like Canada, where ASE for mental illness is being considered, or Belgium, where it’s legal. In these societies, the basis of suicide prevention is confused and even subverted.
What We Do With Our Bodies
Liberalism has very little to say about what we should do with our bodies and our health. That’s the whole idea: It’s up to you to infuse the otherwise meaningless matter of your body with subjective meaning because you own your body. There is nothing more substantial than whatever the owner of the body chooses to give it. If this body is merely a possession, it can be dispensed at will. The law (in the USA anyway) still has an interest in preserving life and continues to provide a basis for suicide prevention, but has also sown the seeds to ensure people can intend their own deaths in a number of other ways (e.g., intending to die by withdrawing a life-sustaining therapy). In jurisdictions where AS has become legal in the United States, the legislative grounding for those laws is the autonomous request of the patient, safeguarded also by criteria for a terminal illness and intractable suffering.3
There are some historical parallels here. Reflecting on examples of suicide during the Roman Empire, David Clarke wrote:
“What seems paramount in the example of the Romans is their desire to be in control of their death and to face it nobly. This can be understood in the context of their previous privileged status and their frustrated feelings of entitlement and power. However, rather than being a rational suicide, it seems more to be a ‘rationalisation’ of suicide that attempted to dull the pain or shame of life with a glorification of mental superiority and control over life and death. Where there is little substantial dignity, death provides the final opportunity for its expression.”
In modern terms, such “previous privileged status” is the liberty possessed by an autonomous person navigating their life before they were stricken by whatever has led them to this decision. It could also even be the thwarted promise of such liberty that they never possessed in the first place. In either case, the entitlement is that which liberalism promises: to not be bothered as one conducts one’s own business, and in many ways to be helped in doing so as long as it doesn’t harm others.
In Ancient Rome as well as the modern West, ASE becomes not only a medical procedure like, say, prescribing an anti-hypertensive, but also a means of expressing value. By choosing to die, one pre-empts any further loss of capacity to choose. The one acting can express what liberal societies honor: the choice of the autonomous agent. Therefore, this isn’t merely “being left alone” but manifesting a particular understanding of the good in one’s own living and dying. That act both expresses the values of one’s society and also contributes to a society that affirms such value.
Values in a liberal society come from somewhere. They aren’t autonomously chosen but are inherited and cultivated. Even when individuals affirm what they value, you could always argue they would affirm something else had they been raised in different circumstances. The relationship between the individual and society is unbreakable. That isn’t to say one should be elevated above another; in fact, it’s to say the opposite: they’re not necessarily in tension (though they often are), but rather the flourishing of one contributes to the flourishing of the other. A cost born by one is also born by the other.
Daniel Callahan lamented this cost when he described liberalism’s inability to answer deep, important, unavoidable questions in bioethics like what are the proper goals and uses of medicine, what are realistic expectations for our health, what do we want to make of ourselves as human beings, and what kind of lives ought we aspire to live. As Callahan wrote, “Liberal individualism’s greatest weakness is what is often thought its greatest strength: eschewing a public pursuit of comprehensive ways of understanding the human good and its future.” This is a problem because
“The inescapable reality of the kinds of changes that biomedical progress introduce is that they affect our collective lives, our social and educational and political institutions, as well as those tacitly shared values that push our culture one way or another. As an individual, I need to make choices about how I will respond to those changes. But more important, we have to make political and social decisions about which choices will, and will not, be good for us as a community, and about the moral principles, rules, and virtues that ought to be superintend the introduction of new technologies into the societal mainstream.”
Talk like this can make any person living in the modern West a little squeamish. Specters of dictatorship haunt these ruminations. Callahan continued:
“The greatest fear of liberal individualism is authoritarianism. But that fear, reasonable enough, fails to take account of the fact the power of technology, and the profit to be made from it, can control and manipulate us even more effectively than authoritarianism. Moral dictators can be seen and overthrown, but technological repression steals up on us, visible but with an innocent countenance, and is just about impossible to overthrow, even as we see it doing its work on us. Liberal individualism makes this scenario more easily possible, and that is why it is not a tolerable guide to the sensible use of medical knowledge and technology.”
One need only look as far as Facebook, the electronic medical record, spiraling healthcare costs, and the loneliness “epidemic” to see that merely leaving people to their own devices hasn’t yielded a society of flourishing. It’s a form of abandonment wherein they lack the sociocultural scaffolding to not only resist technological authoritarianism (about which I’ve written before) but also to cultivate a deep sense of purpose and community. What replaces these things is a reliance on one’s capacity to express whatever values of society they have at hand. For our society, the chief value is individualism. If one is unable to express this, death is ready at hand to give final expression to it and avoid becoming a burden, the greatest sin of such a society.
If ASE is a political act, then what are the political circumstances surrounding it? I already discussed a few as framed by Callahan. Mark Button helpfully draws out the “political approach” to suicide that we can extrapolate to ASE. He writes that “the ‘social facts’ of suicide (the patterns and trends of suicide rates in certain populations) also tell a political story - a story (or a series of stories) that is frequently punctuated by marginalization, persistent neglect, cultivated indifference, and bad faith. … An organized political approach to suicide would not allow a society and its major institutions (legislative bodies, the health care industry, schools and universities, mass media, etc.) to characterize suicide as a strictly personal or family problem because such an approach would start with the acknowledgment that suicide is also a collective burden of social justice tied to the distribution of primary goods within a political system.”
I doubt AS in the United States has deep roots in “marginalization, persistent neglect, cultivated indifference, and bad faith,” but it does have its roots in a fear of losing autonomy, of losing dignity (subjectively defined), of perceived burdensomeness. ASE in other countries, where people can avail themselves of it for a broader set of reasons, may be more akin to suicide as psychopathology and thus may share more of its etiologies. But Button’s main point is that because social factors are play in driving people to choose suicide, this is not merely a personal issue, but a political one, and thus one of justice.4
This is just the issue which Kayla Wiebe and Amy Mullin distort in their essay on whether decisions, particularly a choice for ASE, under unjust social circumstances can be meaningfully autonomous. They define such circumstances as those “in which people do not have meaningful access to a range of options to which they are entitled.” Their perspective is grounded in the notion that “not allowing people to access [ASE] because their request is driven by unjust social circumstances, when those circumstances show no short-term chance of improving, succeeds only in causing further harm.” They define harm as “the subjective experience of ‘having enduring and intolerable physical or psychological suffering’ due to an incurable illness, disease or disability.” Notice, then, that while harm befalls someone because of illness, disease, or disability, that harm is exacerbated (or a separate harm is caused) if ASE isn’t offered to them. But this latter form of harm isn’t the harm of “incurable illness, disease or disability.” It’s a political harm; a harm to one’s liberty. It’s withholding what someone is owed.
They deal with several arguments against ASE under unjust circumstances. They argue that “the fact that someone’s options have been restricted is insufficient to reduce autonomy, because oppressed persons can and often do retain capacities and self-regarding attitudes necessary for autonomy…” They also admit that “it is not feasible to expect medical professionals to assess the extent to which the person in their care has had their options restricted because of oppression and neither is it directly relevant.” Clinicians “are likely to overreach and behave paternalistically” if they attempt to do this.
When someone opts for ASE under unjust circumstances, “it is an indictment of the options available, not of the status of their autonomy, given the options they have to work with.” Perhaps, though, they’ve internalized ableism? “…operating on the default assumption that people with disabilities have interalised such a downgraded sense of self-worth such that their testimony regarding their own experience is doubted constitutes another kind of ableism in the form of epistemic injustice. … When people living with disabilities state that their quality of life is intolerable to them due to a lack of access to care they ought to have, the ethically sound response is to criticise the social conditions that have downgraded their quality of life, not question their self-reflexive attitudes or how authentic or legitimate their evaluation of their quality of life is.”
Ultimately, the authors argue that “any assessment of [a patient’s] autonomy should focus on whether there has been a loss of those capacities and attitudes, and not simply on evidence that their options have been restricted due to oppression, or that they live in a society that devalues them and so they might have internalised oppressive attitudes.” This is similar to understanding that although someone might have a mental illness, they may still have all their capacities for decision-making.
Their argument is nuanced and I haven’t covered all its facets. I wanted to examine some parts of it to demonstrate how these questions of justice are inextricably bound up in permitting, assisting, and approving suicide and ASE. Wiebe and Mullin take for granted the autonomy only view; indeed, they take it to the extreme. In a society that disarms, oppresses, and neglects its most vulnerable, the only recourse of the autonomous individual may be suicide. To deprive them of that final act is to exacerbate the injustice that drove them to consider it in the first place.
Ironically, while Wiebe and Mullin argue that such a choice is an indictment of unjust circumstances, choosing ASE affirms the overly liberalized society that makes such conditions possible. As Callahan argued, it’s when liberalism runs unrestrained from any communal commitments that we wind up with individual decisions aggregating into social harm. Just like the public might allow a park to fall into disarray (the tragedy of the commons), so too we’re blind to any possibility of the common good. By facilitating the political act of ASE, we allow the common good of our health to fall into disarray. Furthermore, if we consider ASE to be a technology (and it most certainly is), we can start to understand how it can reach authoritarian influence over our decision-making, living, and dying. It’s not merely a neutral instrument, but something born of values and, when used, meant to affirm those values.
But in our society, my values can’t trump your values and vice versa. “Keep your religion out of politics” is a common outcry. Kevin Quinn observed that, “The liberal state seeks neutrality not with respect to questions of the right or of justice, but with respect to judgments about what makes a life good or valuable.” What this means is that liberal society expects its citizens to bracket personal values away from political action. This also leads to a challenge “in forging a link between individual ethics and community politics, in recognizing that liberals ought to connect their own conceptions of the good and the ethical with a political conception of equality and justice.” This is most apparent when trying to determine what’s permitted and promoted: “It is impossible to allocate health care resources, either among competing societal needs or within medicine to particular patients or categories of treatment, without appealing to some notion of the good, or to what gives value to life.” What liberalism allows is for those with personal values that most accord with it to smuggle in their view of the good while barring others from doing the same. It’s not that the common good doesn’t exist; it’s that what is shared in common isn’t formally acknowledged. Our life together haunts us because of what it threatens to do to our conceptions of autonomy, but it may be the only thing that saves us from ourselves.
Can We Say ASE Is Wrong?
In permitting ASE, both the state and the profession of medicine affirm that taking one’s own life is a reasonable response to one’s circumstances - sometimes whatever they may be, but at least in response to certain circumstances (e.g., terminal illness). Couched in such a societal response may be judgments about what lives are worth living. Even if no such judgment is explicit, it affirms that this is how liberty can be used: to express, in a final way, that one is autonomous. Even for those who would choose it because of intractable symptoms (a much smaller proportion than those who choose it because they have lost or will lose autonomy), their choice is no longer constrained by any limits. The thing that absolves their choice of moral evaluation is that it was autonomously chosen.
I might go so far to say, because others go this far, that promotion of ASE asserts that this is how liberty should be used, for this is “death with dignity.” Despite its prominence in discussions around end of life care and ASE, “dignity” is a nebulous concept. Because of that, one can only infer some of its meanings. For example, “death with dignity,” when applied to ASE, means that the circumstances surrounding one’s death are chosen and your disease or suffering hasn’t yet forced you into total, unchosen dependence. It’s undignified to suffer and to be dependent. But there may be other meanings of dignity.
Daniel Sulmasy helpfully collects some items dignity might represent:
Social worth. Thomas Hobbes wrote that “the public worth of a man, which is the value set on him by the Common-wealth, is that which men commonly call dignity.” What follows is that those who cannot contribute to society lose their dignity; they have no “public worth.”
Freedom. The loss of freedom is a major concern for people nearing the end of their life, and the basis for so-called “death with dignity.” Sulmasy writes, “Human freedom is respected because human beings have dignity, and not the other way around. To believe otherwise is to suggest that those who have lost control of certain human functions or have lost or never had the freedom to make choices, have no dignity.”
Pleasure and pain. This is another concern many people facing the end of their lives. Sulmasy asserts that this is an “anemic account of human dignity,” assuming the reason is too obvious to argue. Pain cannot degrade dignity nor can pleasure or comfort increase it.
Subjective. Maybe we can each define dignity for ourselves. Yet “human dignity either means the same thing for all human beings or it has no moral meaning at all.” Furthermore, “to say that human dignity is subjective is to claim that one person can never reliably recognize the dignity of another person, because the other person’s dignity depends upon that person’s subjective mental states, which are potentially subject to constant flux.”
What if instead, to Peter Singer’s horror, “human beings have dignity simply because they are human beings?” What this means, according to Sulmasy, is that:
“Everyone, by definition, has dignity. Dignity is thus supremely democratic.
Dignity is truly inalienable. No person and no circumstance can take dignity away from any human being.
Dignity is also truly qualitative. It does not admit of degrees. It is the same for everyone.”
Of course, this is just one guy writing a paper about this. This is why determining the content of dignity can’t be an individual assertion but a communal project. Are we going to recognize or authorize dignity? Are some people in and others out? What grounds our laws, rights, and duties? Is human dignity axiomatic or not?
That isn’t to make light of the worst the world can throw at us. Sulmasy laments:
“Disease humiliates us. Death humiliates us. But these assaults are disturbing precisely because they raise the question of whether human life ultimately has any meaning or value, any dignity.”
Stanley Hauerwas answers, “Medicine is but a gesture, but an extremely significant gesture of society, that while we all suffer from a condition that cannot be cured, nonetheless neither will we be abandoned.” We can testify to the dignity present in each and every person. That isn’t an addendum to medical care, but the basis for it. It provides a way to orient our collective will when we begin to consider politically contentious issues like ASE. It motivates us to care for those who may not even care for themselves, as in the case of suicide prevention. This helps to orient a living medicine. The political act of ASE dehumanizes and degrades; living medicine is a political response to such dehumanization and degradation.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“My doctor said I had 16 months left to live. I’d be dead right now if I had listened.”
One of the appeals of personal narrative is that it’s irrefutable. It’s not an argument; it’s a story. And what a good story this is: a woman with metastatic melanoma whose oncologist believes she doesn’t have long to live far exceeds the prognosis and is still alive and well to write this article today! That’s wonderful. Two things about this provide some insight for other clinicians though: the life expectancy of “16 months” suggests the oncologist is either just pulling a life expectancy out of a hat or else trying to directly translate a prognosis from a trial. No one can provide that specific of a life expectancy that far hour. Heck, I’ve told a family their loved one has “hours to days” for longer than hours to days. People surprise us. Second, these are the stories that are not only told in the popular press but in living rooms and around kitchen tables: don’t believe your doctor, you need to fight for your life, and clinical trials are the way to do it if other options run out. The therapeutic misconception is really, really strong here. Particularly for early phase trials, there’s no expectation of benefit. About 1% of phase 1 trials use agents that ultimately go on to be approved. This woman’s story is amazing, yet so rare that her counsel will likely divert many people away from hospice during the last weeks and months of their lives and into greater disappointment.
“Let’s shift how palliative care teams are measured and valued”
Recognizing that surrogate markers can’t measure all the nuance in patient encounters with palliative care clinicians, Chris Jones and Phillip Rodgers recommend abandoning the relative value unit (RVU). It’s not sustainable to stay with it, but leaving it will be challenging: numbers are easily portable around bureaucracies like nothing else, leading to easy gamification. I honestly don’t have a great answer except to observe that not everything that matters can be measured, and not everything that can be measured matters.
Closing Thoughts
“The capacity to give one's attention to a sufferer is a very rare and difficult thing; it is almost a miracle; it is a miracle.”
Simone Weil
Philosophically understood - not of the partisan variety of “liberal” vs “conservative.”
This is remarkable because they almost always would be referred for such evaluation if they were endorsing suicidal ideation in any other way or context. This suggests to me both an ideological underpinning to these evaluations as well as a bias. There’s a saying in medicine: “geography is destiny.” If you complain of chest pain to a cardiologist, that will shunt you down one path; if you do so on an inpatient psychiatric ward, you’ll be shunted down another path. The same goes if you request suicide from a clinician who is inclined to help you end your life.
These safeguards are increasingly viewed as barriers to access. Why should someone who doesn’t have a terminal illness be discriminated against? They may suffer for longer than someone who will die in a few months. So, too, the criterion about intractable suffering is problematic: who is the physician to judge what level of suffering is acceptable to me? So far these criteria remain in United States laws, but they’re increasingly challenged in the courts and in the bioethical literature.
This touches on healthcare more broadly considered too. Healthcare isn’t just about medical interventions and clinical decisions; it’s also a way of living together, a political institution. Why do some people choose to exhaust every possible therapy while others set limits on what they’re willing to accept? Why do some want cosmetic surgery and others don’t? Why do some want psychotherapy and others an SSRI? Viewed through the lens of liberalism, these are personal choices informed by personal motivations. Viewed differently, though, these are choices born from particular cultures and they go on to inform the development of those cultures. Whether such choices allow for flourishing in any capacity cannot be answered by merely saying it’s someone’s “personal choice.”