Is A Life Worth Living Today?
Notes from a Family Meeting, Vol. 3, No. 10
As we come to the end of 2022, I wanted to express my appreciation to you for joining me on this adventure. Notes from a Family Meeting has provided me a place to explore ideas and engage conversations, and I hope you’ve found it helpful too. Starting with this issue, readers will now be able to comment directly below each newsletter. I originally wanted folks to carry the conversation elsewhere, but I’ve realized social media is a tenuous venue in which to sustain digital conversations. So if you want to share your thoughts, please do! I look forward to hearing from you. As always, you can also email me by replying to the issue that arrived in your inbox.
“I don’t want to die, but I don’t want to be homeless.”
Les Landry sees no other option to deal with his poverty except to end his life. The difference between him and many patients I saw as a psychiatrist is that he’s received approval by the state to do it.
So it was, also, for a woman who featured in an advertisement glorifying assisted suicide and euthanasia (ASE).1
Alan Nichols was euthanized despite concerns raised by his family. This echoes the experience of a family in Belgium, where a woman slipped away from her family through euthanasia.
Brittany Maynard, dying from a brain tumor, lamented, “The worst thing that could happen to me is that I wait too long because I’m trying to seize each day but that I somehow have the autonomy taken away from me because of my disease.”
These are just a few of the stories that give human faces to data like those outlined in this chart from the Third Annual Report on Medical Assistance in Dying in Canada. These data line up with the usual reasons why people avail themselves of ASE elsewhere:2
Nearly all of these reasons distill down to an evaluation that I hear often in my work.
“Doc, if I can’t work, that wouldn’t be a life worth living to me.”
“If I can’t take care of my basic needs, I wouldn’t want to live.”
“I’d rather be dead than burden my family.”
These sentiments spring from tragic mixtures of suffering, fear, and love. My heart breaks as I listen to people try to hold together the story of their lives against the threat of annihilation - either of their lives, their identity, or their roles. So my initial reaction isn’t to argue with them; it’s to lament with them.
But when I step away, my heart then troubles my mind. That it’s possible for a life to be unworthy of living seems so obvious. But if we peek closer, we see that it’s actually a trap door over a warren of presuppositions:
An individual life has measurable worth.
We can measure a life’s worth.
Once a life’s worth is measured, it’s worth can be communicated to others, or at least the evaluation should be honored by others. That is, the evaluation makes cultural sense.
Knowing a life’s worth provides actionable information (i.e., to decide whether to continue living or not).
Choosing death is a live option; in fact, to evaluate the worth of one’s life is to be forcibly brought to the choice. Living by default is no longer an option.
Death is a tool (for what else would you do with a worthless life except to discard it?).
One chooses to live in light of the worth of one’s life.
A life’s worth is objective and can be determined by others. Or, this belief may presuppose that a life’s worth is subjective and can only be determined by the one living such a life. But the belief itself provides no help for us to discern whether it should be objectively or subjectively appraised.
Remembering the atrocities committed by the Germans in their experiments and euthanasia programs, Leopold Alexander wrote in 1949:
“Whatever proportions these crimes finally assumed, it became evident to all who investigated them that they had started from small beginnings. The beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the acceptance of the attitude, basic in the euthanasia movement, that there is such a thing as life not worthy to be lived. This attitude in its early stages concerned itself merely with the severely and chronically sick. Gradually the sphere of those to be included in this category was enlarged to encompass the social unproductive, the ideologically unwanted, the racially unwanted and finally all non-Germans. But it is important to realize that the infinitely wedged-in level from which this entire trend of mind received its impetus was the attitude toward the nonrehabilitatable sick.”
The connection between our modern use of the phrase “a life not worth living” and the so-called “lebensunwertes leben” (lives unworthy of life) is unsettling, but the fact that the former phrase is so commonly used suggests that a connection just isn’t obvious to most people. Of course, back then, the state made the determination about whose life was worth living. Today, we not only allow but promote the individual’s capacity to evaluate the worth of their own life - in certain medicalized circumstances. The belief has changed hands, but we haven’t tamed its power. What happens then?
Alexander’s words are worth reflection because, first, he captures how a small belief can grow into something with immense cultural power, and second, his comments regard a belief about how we attend to others, particularly those who might have a claim on us (e.g., “the nonrehabilitatable sick”).
So Small a Belief
We know the belief that a life might not be worth living is dangerous in the hands of tyrants. Can it also be that it’s dangerous in the hands of an older woman who just wants to do right by her family in her advance care planning, or in the hands of mournful parents making heart-wrenching decisions about their child, or in the hands of a nauseous young man who’s just trying to balance his life against his suffering?
Alexander would probably answer yes, arguing that this little belief is the destroyer of civilizations:
“The ease with which destruction of life is advocated for those considered either socially useless or socially disturbing instead of educational or ameliorative measures may be the first danger sign of loss of creative liberty in thinking, which is the hallmark of democratic society. … The destructive principle, once unleashed, is bound to engulf the whole personality and to occupy all its relationships. Destructive urges and destructive concepts arising therefrom cannot remain limited or focused upon one subject or several subjects alone, but must inevitably spread and be directed against one’s entire surrounding world, including one’s own group and ultimately the self. The ameliorative point of view maintained in relation to all others is the only real means of self-preservation.”
Alexander’s perspective was of course informed by the state-imposed killing of people against their will, but the destructiveness of this belief isn’t limited by who holds it. The belief informs action, and it also transforms culture - or, in this case, deforms and destroys culture. People believing, together, that certain lives aren’t worth living teach one another what kinds of choices are acceptable to make for themselves.
Alexander’s words echo in those of Jacques Ellul:
“Technique cannot be otherwise than totalitarian. It can be truly efficient and scientific only if it absorbs an enormous number of phenomena and brings into play the maximum of data. In order to coordinate and exploit synthetically, technique must be brought to bear on the great masses in every area. But the existence of technique in every area leads to monopoly.”
Our attempts to optimize life for the sake of efficiency (what Ellul calls “technique”) can’t be contained. You can’t optimize one little aspect of a process because everything is connected. In order to optimize your work, for example, you must optimize your sleep, exercise, diet, vacations, families, and so on.
Once you couple the belief that a life can be unworthy of living with a society that strives for efficiency with technique, you eventually wind up with the efficient discarding of inefficient lives. Even if the people are choosing it for themselves, it’s because their culture taught them to do so. Ellul couldn’t help but bring these reflections together:
“Once the means becomes a matter of technique it knows no bounds. It applies itself indifferently to all objects and recognizes no rule except technical laws. It has no concern with value judgment. It can be nothing but an instrument that functions well. And it is true that value judgments (good or bad, just or unjust) normally concern the end and not the means. As a result, the technical process finds itself free of all ideological or moral obstacle. It functions entirely like a machine, without any external value to trouble its well-functioning cogs and pistons. It is sometimes the case that the technical results, such as concentration camps, make ordinary people recoil in horror, but this is simply because they have been outside the technical means’ operations. A Russian communist does not recoil from camps in Siberia, or a Nazi from extermination camps. When the practice has spread throughout the world, when we are all within the mechanism of this ‘means,’ no one will be appalled any longer.”
He goes on to describe how these means can get out of their human masters’ control, which happens in medicine all the time already. That we think, this time, we can handle our tools rightly is a testament to our evergreen hope in technology to free us from the constraints of our moral failings and natural limitations.
But there has been a significant ethical development since the 1930s and 1940s: respect for autonomy is now enshrined in medical ethics. In theory, this fortifies the individual’s dignity against abuse for the sake of science or social hygiene. In practice, it really has taught clinicians and scientists to honor individuals.3 But it’s not sufficient, as investigative journalism has revealed in nursing homes and hospices, or in other areas like phase I trial enrollment, clinician recommendations anchored on biased judgments about quality of life, and epistemic injustice in chronic pain. The list goes on, but that long list isn’t the focus here. Respect for autonomy doesn’t protect people against the abuses of ASE in the way we’d hope because it actually imbibes the rationales about which Alexander and Ellul warned, empowering the individual to be the judge of their own worth in ways that usher them to the conclusion that their life isn’t worth living. As I’ve written elsewhere:
“What is our culture like? What repertoire for dying does it offer us? It is a culture that glamorizes youth and the untethered autonomy of the individual. Aging is the story of losing vitality, control, and dignity — of increasingly burdening our loved ones and our medical system to care for us until we die. Some have even argued for a “duty to die” of those with chronic illness whose lives are being medically prolonged but who can no longer take care of themselves. Human dignity, by this reasoning, is not unconditional. Only the autonomous have it. Those who are dependent on others no longer do, and are therefore no longer deserving of our care.”
By respecting autonomy in this way, we disempower ourselves of the very agency that allows us to choose meaningful ways of living. We, as a culture, foist upon ourselves a need to evaluate the worth of our own lives. As David Velleman wrote:
“Once a person is given the choice between life and death, he will rightly be perceived as the agent of his own survival. Whereas his existence is ordinarily viewed as a given for him - as a fixed condition with which he must cope - formally offering him the option of euthanasia will cause his existence thereafter to be viewed as his doing.
The problem with this perception is that 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?'.”
Attending Longsufferers
In a world where resources require time and effort to gather, even if they aren’t scarce, caring for those who are chronically ill, disabled, or dying might incur significant losses to the carers. The return on investment isn’t great, as these people are rarely able to pay back into the system that supports them. In that world, the value of life is always at risk of being weighed against utility. Even if others don’t feel that way, individuals will feel that way about themselves: “I don’t want to be burden.” In either case, given the frail, vulnerable, mortal frames of the human body, we never fully optimize our own utility. Even if we could, it wouldn’t last long. We never totally unburden ourselves so we’re never free of the suspicion that we ourselves are burdens. Using such metrics, all life eventually becomes unworthy of life. It starts with believing that there’s any metric at all to measure the worth of a life.
Eric Cassell suggested that, “The powerlessness of the sick person’s body and the ability of others to control the person by controlling the body are part of the political dimension of illness.” What does this actually look like? Relying on Alasdair MacIntyre, we see three ways this political dimension influences how we see the “nonrehabilitatable sick”:
Medicine as bureaucracy. “You’re just a statistic.” The patient devolves to their chart. They’re enslaved through and by debt, paperwork, labyrinthian referral processes, and so on. Given the chronicity and totality of the patient’s illness, their whole life falls under this medical bureaucracy, which defines for them their problems and their schedule. ASE becomes a function of the bureaucracy, helping it to tick along efficiently.
Medicine as applied science. “You’re just a [diabetic, cancer patient, etc.].” As MacIntyre writes, “According to this view of medicine, the physician reenacts with the parts of the patient’s body what the scientist first achieved on the laboratory bench…” The patient becomes a puzzle for clinicians’ intellectual pursuits. But the “nonrehabilitatable sick” challenge the promise that science will deliver us from the slings and arrows of outrageous fortune. With no easy wins, the applied scientist settles for surrogate outcomes, sometimes far removed from anything actually meaningful to living people. If we can’t help you, maybe we can at least help your kidney function. ASE becomes the disposal of a collection of pathology.
Medicine as magic. “You’re a believer.” Medicine itself can appear miraculous, and that makes clinicians into priests (or magicians) and patients into, well, faithful believers. But what about those for whom the magic doesn’t work, where the priestly intercessions fail to entice whatever capricious gods that dwell within medical technology? These patients face exile: “nothing more to be done.” It’s not that magician-clinicians are evil, because they usually aren’t. It’s that, only knowing how to show their compassion through magic, they can’t bear to look upon someone for whom their magic does no good. This is the limit of their compassion. But even if these patients aren’t exiled, they’re expected to keep the faith by demonstrating their adherence to what the clinicians recommend. ASE becomes a way to wrest some bit of hope out of medical technology. At least this time, it may finally assuage suffering.
There is another way, if we have eyes to see. Joel Shuman describes it:
“…a body seen as a body—both more and other than the sum of its parts—is one seen as the manifest presence of a beloved human person instead of simply as an object to be manipulated or controlled. … bodies are seen and known well only insofar as they are loved, and they are loved only insofar as they are seen and known well. The body seen through the anatomical gaze is reduced to a manipulatable object or collection of objects. … The challenge for those who would participate in the healing of broken bodies is patiently and diligently to cultivate the habits of body and mind requisite to this seeing and loving.”
We can resist the belief that there are lives unworthy of living by testifying to the inviolable, inherent, undiminished worth of the person in front of us. This requires more than technical expertise. It requires a different way of seeing - less efficient, more humane. For those burdened with the prospect of evaluating their lives, maybe such care would be a form of burden-bearing, of witness, of accompaniment. Not easy, certainly, but enough to turn their eyes away from considerations of worth and toward simply living, however we can help one another to do so and for however long it takes.
What do you think - is it possible?
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“How the visionary hospice movement became a for-profit hustle”
Coming on the heels of another piece about private equity in nursing homes, this latest article roots out deep corruption in the hospice “industry” (for that’s what it has become for some - an industry). What some have allegedly done to those who were dying (or not!) in the name of profit is evil. Not all hospices are like this, but these give the whole practice a bad name. I routinely encounter patients and families who are hesitant to enroll in hospice. Once they do, it only takes a misunderstanding, a missed appointment, or a nurse who recommends opioids a little too zealously to confirm their suspicions. Ira Byock responds here with compassion and boldness.
“The power of attention in a world of distraction”
We’d all do well to listen to or read anything by Michael Sacasas, a perceptive thinker on modern life and technology who writes The Convivial Society. Here he speaks with Sean Illing on something that many clinicians might not think is a problem in medicine: attention. There are subtle malformations that twist attention away from honoring the people right in front of us. How one stewards their attention well, both in a clinical encounter and beyond, is a major challenge for this modern era.
“How a Catholic Nun in Uganda Created a Global Palliative Care Program for the Terminally Ill”
Anne Merriman moved to Uganda from the UK at the behest of the Ugandan government in the early 1990s to “help control the severe pain that accompanied HIV deaths.” She faced significant opposition as people conflated palliative care with euthanasia. With effort, though, she and others founded a thriving hospice and palliative care program that continues to care for patients today. Here, she tells her story and shares how her faith helped her on the journey.
If you wanted more information about the stories behind the data discussed at the beginning of this issue, go read this piece by Alexander Raikin. However, I hope I’ve made a case that stronger legal mechanisms cannot safeguard against the malignant growth of ASE.
Closing Thoughts
“When a child first catches adults out—when it first walks into his grave little head that adults do not have divine intelligence, that their judgments are not always wise, their thinking true, their sentences just—his world falls into panic desolation. The gods are fallen and all safety gone. And there is one sure thing about the fall of gods: they do not fall a little; they crash and shatter or sink deeply into green muck. It is a tedious job to build them up again; they never quite shine. And the child’s world is never quite whole again. It is an aching kind of growing.”
John Steinbeck, East of Eden
I use the combined term “assisted suicide and euthanasia” (ASE) rather than medical aid in dying (MAID) because it’s the clearest way to describe what these practices entail without using a euphemism. Philip Reed elaborates and I share his reasoning. I do recognize that assisted suicide and euthanasia are distinct practices, but for my purposes here they’re similar enough to be addressed together.
It’s hard to see the primary driver for ASE from the Canada data because people can select more than one reason without ranking them, but the most selected reasons involve loss of function. Pain control is lumped in with a concern about pain, which are two very different issues. Loss of dignity and perceived burden are not a small portion of the reasons people choose ASE. I suspect there are also some quirks in data collection. For example, the Canadian data show that concerns about losing autonomy only comprise 1.7% of the reasons given for pursuing ASE, whereas in Oregon, 93% of respondents availing themselves of AS cited it as an “end of life concern” (unclear if that’s a reason for pursuing AS in that state, but given the population surveyed, it’s likely to be).
Perhaps this principle has taught clinicians a little too well, as many merely offer information without recommendations or attempts to help their patients make decisions. This “mandatory autonomy” approach cripples patients under the enormous weight of their medical decisions, but it’s still honored as “respect for autonomy.”