Is Death a Goal of Care?
Is Death a Goal of Care?
Notes from a Family Meeting, Vol. 2, No. 4
I occasionally care for people who want me to help them die. It’s not common but it happens. They’re usually in extremis, in the hospital or hospice, and want “a shot” or “something extra” to expedite their death. Sometimes they’re very direct: “I want to take something to end it more quickly, like they do in Oregon.” Sometimes it’s the family members who ask. They lament that we treat our pets better when we euthanize them than how we treat our dying loved ones who linger in this transitional state of dying.
You’ll remember that the goals of care are longevity, function, and comfort. Death doesn’t fit in any of those, but it’s becoming more popular for clinicians to participate, either directly or indirectly, in ending their patients’ lives. So, what does death have to do with the goals of care?
Death can be a means to an end - like relieving symptoms or preserving autonomy - and so it becomes a medical tool. It can also be a separate goal pursued for its own sake. Given the rising popularity of assisted suicide and euthanasia (ASE), should we recognize death as the fourth goal of care? Even setting aside the controversial practices of ASE, should we aim for death in other circumstances - e.g., in withdrawing or withholding life-sustaining therapies? I’ll provide some thoughts here, recognizing that the circumstances that raise these questions are drenched in suffering. My words here are insufficient for those circumstances. I share this perspective instead as a reasoned justification for not including death among the goals of care as I understand them. Also, when we talk about ASE, it’s important to separate the question of whether one should take their own life from the question of whether society should support it, and whether medicine as a profession should underwrite it. I’m addressing the latter questions here. An appeal against suicide to those considering it is something else entirely.
Death as a Tool
ASE is commonly advertised as a means of achieving symptom relief when all other measures have failed. The majority of patients in Oregon who avail themselves of this practice are enrolled in hospice, which means they have access to the service that should, in theory, provide optimal end of life care. Hospice isn’t ideal though, particularly for those without symptoms like cancer pain - people with hematologic malignancies, neurodegenerative disorders, heart failure, and so on. It’s possible that hospice is failing in its mission which leads folks to want to use death to fill in the gaps in symptom management.
But we also know the most commonly cited reasons for choosing ASE are unrelated to symptom management. They’re things like preserving autonomy and dignity. Dignity is a nebulous concept, but the pairing of autonomy and dignity shows that one facet of dignity for some is autonomy itself. Death is an instrument to restore, preserve, or at least express dignity through autonomy.
There are several problems with using death as a medical instrument.
ASE is a medical intervention to address existential and social issues. I hesitate to even say these are existential and social problems. Is it a problem that we are dependent creatures from start to finish? Is it a problem that the experience of illness causes us to refine our understanding of human dignity? Is it a problem to reckon with our limits, individually and collectively? But insofar as any of this is problematic, it’s made so because of a society that denigrates frailty and dependence. Why should we deploy any medical intervention, let alone death, to address these existential and social issues?
Human history is replete with cautionary tales of using death as a means to achieve some valued end. Generally the caution is: don’t do it. Whether it’s in warfare, assassination, murders of passion, genocide, or eugenics, death masters those who attempt to master it. Those who live by the sword, die by the sword. Why should the use of death now end up any different than any other time we’ve used death for some other purpose? In thinking about the power of most major technologies, Gerald McKenny observed, “...the very technology that originates in the effort of the modern subject to bring the external world under his power ends with the power of technology to recoil back and destroy or radically refashion the very subject whose power it is.” Think about how formative technologies like the ventilator, the internet, social media, the automobile, and benzodiazepines have been. Death would be no different, except its influence would be even greater.
Death has no place among other medical interventions. How do we weigh its burdens and benefits as a society when considering things like, say, cost?1 Do clinicians ever recommend death like they would recommend chemotherapy or surgery? Should insurance companies offer it as an option instead of another expensive therapy? These questions are up for debate, but they reveal what I believe to be an insurmountable problem: death is too unique to be included among those things we use as medical interventions. It’s incomparable to anything else we offer in medicine.
We can’t say we’re helping someone by using death. This is a procedural concern about informed consent. Against what standard do we compare living? None of us have any experience of being dead. We have no data on what it’s like to be dead. No one has reliably reported back. Because of that, we can’t counsel people by saying their death would be preferable to living. We can assume, sure, but are assumptions sufficient for informed consent?
Safeguards for ASE are unwieldy. Such safeguards are attempts to protect society from re-enacting the egregious horrors of the early twentieth century, in which societies determined which lives were unworthy of life (lebensunwertes leben in German, though eugenic practices were popular in America too). These safeguards don’t avoid the problem, though, but just push it back a step: rather than the bureaucracy making that determination, now each individual does so. This is why the phrase still persists today in the form “life not worth living.” We don’t live in a vacuum and our evaluations and decisions meet together in the commons to make our culture. What results is a culture that continues to make evaluations about which lives are worth living. The safeguards that do exist only lull us into neglecting the fact that there can be no safeguard against this cultural transformation. “The risk of institutionalizing [ASE],” observed Fredrik Svenaeus, “is that an increasing number of human suffering situations will be viewed as irrational in the sense that they should better be avoided by way of ending them rather than continuing them if we have the choice.” David Velleman expressed a similar concern:
…if others regard you as choosing a state of affairs, they will hold you responsible for it; and if they hold you responsible for a state of affairs, they can ask you to justify it. Hence if people ever come to regard you as existing by choice, they may expect you to justify your continued existence. If your daily arrival in the office is interpreted as meaning that you have once again declined to kill yourself, you may feel obliged to arrive with an answer to the question ‘Why not?’
We have moved from ASE for the terminally ill, to those with irremediable suffering without terminal illness, to mental illness, to those merely tired of living. This is no slippery slope; it’s already happening, and so why shouldn’t it continue on this trajectory? Safeguards are also increasingly seen as mere obstacles to further expanding the indication for ASE.
Withholding or withdrawing life-sustaining therapies (LSTs) with the intention of ending someone’s life paves the way for ASE. This is a problem for those who are unreflective in their practice but consciously oppose ASE. There are clear ethical and legal differences between ASE and withdrawing or withholding LSTs; I won’t repeat those arguments here. But, in practice, many people make decisions about LSTs with the intention to die (“Let’s stop dialysis - I can’t take this and want to die,” “Dad never would have wanted to live like this. Stop the ventilator so he can die,” etc.). Clinicians may even construct the architecture of the decisions with death in view: “We can stop the ventilator so that she can die, or we can keep working to keep her alive.” This blurs the distinction between ASE and withholding and withdrawing LSTs, and has a formative influence on the thinking of both clinicians and patients (and their families). If both practices intend death, what’s the difference after all? By the time the shadow of formal debate about ASE falls on a community, they may have been using death as an instrument for some time and it won’t seem like such a leap to practice ASE.
Death as an End
No pun intended. By “end,” I mean the purpose toward which our medical interventions aim. For example, if someone requests that we stop a ventilator so they can die, the end at which they’re aiming is death and the means by which they’re going to achieve it is stopping the ventilator. Withholding and withdrawing LSTs, as I mentioned before, is akin to ASE only when death is intended. This is where death would take its seat as a “goal of care.”
There is one major problem with aiming medical interventions toward death. Death isn’t healthy, and the end of medicine is health. The goals of care as I’ve framed them (longevity, function, and comfort) don’t exhaust what health is, but medicine aims at these goals in order to support health. We know what medicine is not because it merely acts on the body (tattoo artists also do that) but because it aims at health. Death is an entirely different end from health. It’s mutually exclusive with health. One cannot have both health and death at the same time. Aiming at death fundamentally alters the practice of medicine.
“But wait!” You might object, “Death can be a part of health!” One’s death can bring a coherent, even peaceful, conclusion to the whole of one’s life. We can’t say that a corpse is healthy, but insofar as medicine aims to restore a bit of the wholeness of life, it can do so by ending the life of someone who sees more wholeness in the conclusion of their life than in continuing to live as they are. “He died like he lived,” we might say, “In control.”
Even still, death is not just a change in the content of one’s life. Death changes the whole context of one’s life. Even that sentence strains intelligibility, for it’s no longer “life” after one is dead. So drastic is this contextual change that life is extinguished. Everything moves to the past tense. The one once addressed as “Joe” is now “Joe’s body.” Joe is elsewhere (or nowhere, if you’re inclined to believe that). There’s nothing else in medicine that intends this kind of contextual change. That should give us pause, because such a practice change could induce a paradigm shift in medicine. Is it a shift we want? Will there be unanticipated outcomes? If we take health as the good at which medicine aims, then everything done (i.e., longevity, function, comfort) occurs both in pursuit of and in the context of health. Death is something different; it is not a part of health. That can be true even as we seek to find healthy ways to cope with the fact that we will eventually die. We can be ready to die, even find peace in dying, while not intending it.2
Once we allow for death as an end of medicine, though, why not other ends - e.g., commodification of the human body and its parts, behavioral management outside the clinical context, and transhumanist aspiration? Those are legitimate questions and each calls for a response I can’t provide here. But moving beyond health means that medicine then becomes “open access” for these other purposes; why should it not?
Or perhaps medicine has no particular end except whatever the user wants. That’s what Principles of Biomedical Ethics seems to imply. The pre-eminent text in modern bioethics offers no discussion on the aims of medicine. Beauchamp and Childress see no need to ask about the nature of health either. As meager as most clinicians’ ethical training is, the four principles comprise most of it, and with no orientation toward what the four principles are for.
Whether it’s expanding the ends of medicine to other purposes, or making it totally “open access,” when we start banging on all sorts of things with our medical hammer, we may hit a few nails, but we’re likely to break a lot of precious things too. How?
Farr Curlin and Christopher Tollefsen, in The Way of Medicine, argue that an unfocused profession (either in its lack of definition or in aiming for too many ends) becomes ineffective: “…insofar as physicians use the technological powers at their disposal to pursue a wide array of outcomes, they necessarily become less expert and skilled at pursuing their patients’ health.” We see this in the practice of highly skilled sub-specialists who struggle to intervene in ways that support their patients’ health. Patients walk away from those clinicians, frustrated, suspicious, and confused. They feel treated like a number, or that their real concerns weren’t addressed. Fragmented, reductionistic medicine, despite being physiologically “successful,” can ironically yield bad outcomes for someone’s health. To the extent that we laud these sub-specialists, it’s because we usually need their expertise when our lives are on the line. They’re really good at using technology to save lives and our bodies are remarkably resilient in enduring the burdens of many medical interventions. I’m not turning my nose up at that! But most of medicine (two-thirds of it, if you go by the goals of care) is about more than living longer, and practicing to support all those three goals is challenging, if not impossible at times. A patient may be grateful to be alive and suffer the affliction of their treatment at the same time. So, if the clinician succeeds in one sense only to fail in the more profound sense, it’s because they may have seen their patient as the bearer the organ or disease of interest. Health wasn’t in view at all.
That doesn’t mean that if someone prioritizes function or comfort over longevity, they intend their own death, or that they would prefer death to living under the terms and fallout of a medical intervention. One can choose something while still lamenting the loss of the path not chosen. One can have a comfort-focused plan of care, for example, and not intend their own death.
Curlin and Tollefsen also observe that, “…without a clear focus on a common recognized good, it is not possible to engender the social commitments and cooperation necessary for an appropriately capacious practice of medicine.” This is the position in which we, as a society, find ourselves regarding ASE. The disagreement here signals deeper presuppositions about the purposes of medicine that may eventually make practicing together impossible. As medicine offers a less coherent profession, society comes to distrust the institution and the institution itself becomes less formative for its trainees in the ways that are required to pursue health.
That second point warrants more development. If we have an unclear focus on the good we’re pursuing as a profession, or if we want to try to pursue multiple, competing goods, we’ll struggle to cultivate the virtues necessary to practice medicine well. “Virtue” isn’t a word often used in modern medicine, but it’s necessary as Alasdair MacIntyre recognized, “A virtue is an acquired human quality the possession and exercise of which tends to enable us to achieve those goods which are internal to practices and the lack of which effectively prevents us from achieving any such goods.” He’s also got a complex definition for “practice,” but suffice it to say, medicine qualifies as one. An internal good of medicine is something like health. An external good might be money or prestige. So we need virtues to help us see and pursue health. He goes on:
The virtues find their point and purpose not only in sustaining those relationships necessary if the variety of goods internal to practices are to be achieved and not only in sustaining the form of an individual life in which that individual may seek out his or her good as the good of his or her whole life, but also in sustaining those traditions which provide both practices and individual lives with their necessary historical context. Lack of justice, lack of truthfulness, lack of courage, lack of the relevant intellectual virtues - these corrupt traditions, just as they do those institutions and practices which derive their life from the traditions of which they are the contemporary embodiments.
To distill it down, we need virtues to achieve the good toward which we aim, to engage in the relationships that help us pursue that good, and to cultivate the traditions that sustain (and are sustained by) those virtues. This is why MacIntyre also observed, “I can only answer the question ‘What am I to do?’ if I can answer the prior question ‘Of what story or stories do I find myself a part?’” Our actions can only make sense, and therefore can only be ethical (or not), in the context of the story (community + tradition) that contains them.
Insofar as one believes that all you need is the right knowledge applied to the right processes to foster health, then to that extent you reduce humanity (and the individual person before you) to “mere matter in motion.” But no clinician really operates this way. Most recognize we need other qualities apart from medical knowledge - clinical judgment (i.e., wisdom), compassion, honesty, courage, and so on.
People who want to use medicine to end lives and those who don’t, although they live and work together, are telling different stories. If we belong to different stories, and we pursue different ends, then we will cultivate different virtues to achieve those ends. I’ll save exploring those virtues for another time, but I think those who pursue health and those who pursue death will look similar in many ways for now, because even those clinicians who use medicine to end the lives of their patients were raised in a tradition that sought health nearly all of the time. We may not see a greater schism between the two groups for another generation or two.
Coping with Life
Despite an increasing capacity to change so much about ourselves, we still end up needing to cope with the fact that most of our lives are given to us. Whether you believe in a deity or not, you nevertheless receive most of your life by being born into a family you didn’t create, a country you didn’t found, a history you didn’t live, and a story you didn’t write. People debate nature versus nurture all the time, but skip over how both sides presume we receive most of what we have. Not that we don’t have agency, but that agency isn’t aseity. We are contingent.
Coping with those things we can’t change, don’t want to change, or don’t even know are changeable, presupposes that we’re going to take life on its own terms. Coping is the living we do in the face of the limits of our humanity: our mortality, dependency, vulnerability, and frailty. Medicine is one of those ways of coping, and its purview is health. “Coping” is probably the right word here because medicine remains limited; medicine doesn’t fundamentally alter those things that are given to us in our humanity. But using medicine to bring about death isn’t just a new use of medicine. One tragedy of ASE, and suicide more broadly, is that it refuses the givenness of life. Insofar as it is a mark of our humanity to consciously cope with the human condition, refusing its givenness is dehumanizing. This has nothing to do with changing our circumstances (breaking the bonds of slavery, moving to another country, taking on a new diet); that’s all living. The givenness of life is our humanity itself, it all its possibility and limitation.
This is the warning of so many stories whose tragic characters try to evade or transcend our human limits. Icarus flew too close to the sun with his wax wings and plummeted to his death. Gollum groped after the One Ring, dying years after he lost his soul to greed. Darth Vader siphoned strength from the Dark Side of the Force, burning a hole through his heart. Adam and Eve seized autonomy from God through disobedience and were instead fatally enslaved to sin. Victor Frankenstein sought life after death through the clandestine wonders of vivisection and created a monster. Big Brother grabbed power through deception and might, crushing the human spirit. The world controllers grabbed power through pleasure and inanities, stupifying the human spirit. This story is told over and over again in innumerable variations: attempts to turn the tables on our human condition ultimately harm, if not outright destroy, us. ASE is a strange attempt to turn those tables, because it doesn’t avoid death. But it does try to use death as a tool to avoid other parts of the human condition. In so doing, we grab more power than we can handle.
This question of whether one should end one’s own life is ancient. The medical response to the question has just now, over the past century or so, begun to blossom. Clinicians are eager to help those who suffer, and yet sometimes all we can do fails to alleviate suffering because suffering is more than a medical phenomenon. Eventually, all we can do will fail to help folks live longer and better. In the face of such failure, ASE is an attempt to wrest back control, for both the clinician and the patient. But death is unwieldy. We’ll hurt ourselves and others with it. The bloom may look like compassion, but its odor is poisonous. Death can’t be a goal of care.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“Applying syndemic theory to acute illness”
The authors define syndemic theory as a tool that “describes synergistically related, clustered epidemics that arise from harmful social conditions, provides a helpful framework for understanding these complex relationships” and can thus has a role for “clinical care, research, and health policy.” As a psychiatrist, I had never heard of this before, but it’s how mental health clinicians think about mental health by default. You can’t talk about someone’s depression without talking about their socioeconomic status, family, other health conditions, and so on. This helps clinicians and researchers take a step back from super sub-specialization and focus more on diverse teamwork in tackling complex (sometimes wicked) problems in healthcare.
Neha Kayastha and Thomas LeBlanc briefly review the evidence supporting outpatient palliative care for patients with cancer, the barriers facing outpatient palliative care, and point to a path forward. Technical interventions (like training more specialists, educating oncologists in primary palliative care, and improving guideline recommendations) are important. So are shifts in thinking. Cancer care isn’t about improving progression-free survival or getting a radiologic response. It’s about helping people live well for as long as they can.
“When my wife developed Alzheimer’s, the story of our marriage kept us connected”
A beautiful testament to life together amidst hardship and joy. The “medical stuff” is there but not as prominent as everything else. We clinicians walk into these stories and may even be unnamed characters. Although hospitals and clinics are sites of great drama and feel like our turf, the stories belong to the people we’re trying to help.
“Why choose mystery over ideology?”
Margarita Mooney Suarez observes, “What students are missing in education today are awe, curiosity, and contemplation. The beginning of education is not changing the world, but being attentive to all of reality, including its symbolic dimension.” Medical students and residents are some of the most utilitarian learners around: will this be on the test? Or, as students become interns, how will this help the patient? And as interns become residents, how will this help the patient get discharged? She goes on to write, “Beauty is the door that opens onto that greater reality. Without experiences of beauty to draw us into contemplation, education risks becoming purely cognitive and functional and culture becomes desiccated.” What does it mean that most medical students’ introduction to the human body is the cadaver, an encounter that requires them to overcome revulsion rather than embrace clinical practice with awe?
“Physician-assisted suicide and the autonomy myth”
Ronald Pies and Cynthia Geppert put to rest the myth that availing oneself of physician-assisted suicide (PAS) is an exercise of autonomy: “…PAS legislation is an example of extreme heteronomy—ie, handing over power and authority to others.” As the authors observe elsewhere, “…current PAS statues [sic] create a superficial ‘pseudo-autonomy’ that is, at best, cosmetic in nature. Procedural boxes may be checked, but the underlying conscious and unconscious motives of those involved are virtually ignored.” Of course, this argument isn’t sufficient to resist suicide (assisted or not) as a practice; in fact, it could just as well support the provision of lethal medications over-the-counter to bypass all the infringement upon one’s autonomy. But what this argument does do is require another justification for PAS than the mere actualization of one’s autonomy.
Jeff Bishop briefly reviews a history of the traditional view of ethics that intention matters in action. This is critical for understanding why killing a patient and allowing them to die may be ethically different. Because our modern understanding of the world has been drained of meaning and purpose (“formal and final causes,” in the Aristotelian language Bishop uses), we have nothing else to guide us except material consequences (“efficient causes”). Death is meaningless and, ironically, life becomes meaningless as well. This undergirds the support for AES, in which it doesn’t matter if one dies from an illness or at the hands of one’s physician.
“What’s in a word: the distancing function of language in medicine”
David Mintz wrote about how the language is an unwieldy but necessary tool in the clinical relationship nearly thirty years ago. The nuances of language development are beyond me, but Mintz observed that, whether it’s through identification (“She’s schizophrenic”) or metaphor (“We need to fight this cancer”), language, and medical language specifically, distances clinicians from patients. This is a problem if we consider that the essence of healing beyond physiologic restoration is found in the relationship with one’s healer. These lessons still haven’t penetrated medical education, even with advocates like Rita Charon continuing to bear the torch.
“We can’t just follow the science”
Sometimes when you say things out loud, they seem so obvious that it’s amazing anyone could believe otherwise: the Emperor has no clothes! So it is with Frank Miller’s essay in which he observes we need more than mere science to make decisions about what to do, specifically regarding the pandemic. If we can’t just follow the science (I agree), then of course it’ll be ineffective in persuading others with whom we disagree across the freedom-security spectrum. There are two unfortunate problems with his brief essay: first, it’s published in a place where nearly all the readers already agree with him and won’t learn anything new from he has to say. Second, and more formidably, it’s ironic that Miller ends the essay implying that those who disagree with him just aren’t following the science.
Parting Thoughts
Part of our inheritance from this period, in which successful medicine was successful applied science, is a view of the patient as essentially either an object for or an exemplification of the results of scientific research. Viewed thus, the patient is no longer envisaged as a whole person, but only as a body; and the body itself is envisaged as a collection of parts and subsystems, each of which may fruitfully be studied in isolation from the rest. According to this view of medicine, the physician reenacts with the parts of the patient’s body what the scientist had first achieved on the laboratory bench, and it follows that the specific complaints uttered by the patient and the care of the patient are not really part of the genuine practice of medicine at all.
Alasdair MacIntyre, “Medicine Aimed at the Care of Persons Rather Than What…?” In, Changing Values in Medicine
Regarding cost specifically, it’s a commonly voiced concern that people will be preferentially shunted toward ASE when their conditions become too expensive to manage by other means. That’s a concern that hasn’t been empirically supported, but why wouldn’t it become a reality in a world that is overrun with healthcare debt and makes arguments for why people have a duty to die?
Some religious traditions see death as a release from the suffering of life and an entry into a better afterlife. While death as a doorway might be welcomed, death still isn’t ultimately good. It isn’t the end, but only a passageway through which one attains greater life (and health). An atheist may also welcome death without intending it, recognizing that their life is limited and must eventually end.