Helping People Survive Better
Even When They're Dying
Notes from a Family Meeting is a newsletter where I hope to join the curious conversations that hang about the intersections of health and the human condition. Poems and medical journals alike will join us in our explorations.
For those of you just joining, consider starting here to trace how I’ve been thinking about medicine and technology, a conversation I’ve been returning to time and again.
In an earlier essay, I argued modern medicine depends on a view of the human that casts us as first and foremost choosers, and our bodies as made of dead matter in motion. I contrasted this with a different view that better accords with reality: people are dependent, vulnerable, and limited. I hope to explore this within medicine’s goals of care, as well as some additional thoughts around death and enhancement. I’m going to assume you read the earlier essay, so if something doesn’t make sense or seems undeveloped, go back and read that one. Although all of it might still seem senseless or undeveloped anyway! If so, let me know.
“A new weakness in your grip will show itself, a little seizing in your back that doesn’t spring to suppleness after a three-hour drive, the inadequacy of light for reading fine print that no one seems to notice but you, these and a few score other bothers become whispers after a while, after they don’t pass. They are all saying, ‘Well, here it is. This is you too, whether you meant it or not, whether you deserve it or not. You ate enough bran or you didn’t, you fastened your seatbelt or you didn’t, you thought a majority of good thoughts or you didn’t, and here it is, regardless. Here is the continuance of your days. Here you are.’”
Stephen Jenkinson’s words now come to mind when I encounter the inevitable aches and sniffles of human living. I’ve been blessed to have never faced a life-threatening illness or injury, though a lacerated kidney from playing ultimate frisbee brought human frailty to the forefront of my eighteen year old mind like never before. Others have faced much worse, but whether we have a cold or cancer, it all can remind us that we break and die.
Some philosophers have argued nothing we do that falls outside the shadow of our own mortality. Any and every choice we make is in contrast to the innumerable other choices we didn’t make, most of which we won’t have the opportunity to revisit because we need to move on.
Why do we need to move on?
Because we’re going to die. As Oliver Burkeman observes, “…there's a sense in which every moment of life is a ‘last time.’ It arrives; you'll never get it again-and once it's passed, your remaining supply of moments will be one smaller than before.”
If you ask around, many (most?) people might not list death as an imminent fear, but it lurks under everything: a fear of not accomplishing something implies time will run out before it can be accomplished. A fear of fumbling an important task implies time will run out before you can recover or maybe the task has grave consequences for other people who will die. Worries about money link to worries about shelter, food, and survival.
Others strive despite death, but even the striving is in the face of death. Their finitude gives them vigor to work or play. Jason Isbell sees death as something that sharpens an acute sense of the meaningfulness of life and richness of love:
If we were vampires and death was a joke
We'd go out on the sidewalk and smoke
Laugh at all the lovers and their plans
I wouldn't feel the need to hold your hand
Maybe time running out is a gift
In one sense, health care is about health. Look at it differently, though, and it’s about avoiding death. The most heroic stories from the world of medicine, ancient and modern, are about lives saved. Even the less sensational stories about minor illnesses and injuries whisper, like Jenkinson, “Well, here it is.” Our bodies break and eventually they’ll fail for good. The longer we can stave that off, the better.
What does survival look like when people are seen as mere choosers and their bodies as dead matter in motion?
Choosing to Survive
“It’s his choice. What would he choose?”
A woman sits in a plastic chair next to her father’s hospital bed. He looked so thin, but the last time she had seen him was twenty years earlier when he chose alcohol over her. That was his choice. What would he choose now? “I guess he’d want to live, like everyone else, right?” She stares at the ceiling, sighing. She has no idea.
The way modern medicine sees the human person lands us in a paradox when it comes to survival.
On the one hand, declaring that only the person living a life can prioritize their survival in medical decision-making guards against discrimination and imposition of judgments about lives not worth living.1 To say these decisions about survival are yours to make is to defend those choices against the interests of others who might want you pushed off this mortal coil a little early. The goods you pursue are entirely your own and you can dispense with or pursue them as you wish, including the good of survival.
This depends on the body itself being only as valuable and meaningful as the individual deems it. If there was some other source of meaning or value apart from the individual’s choice, their choices might be bound by that meaning or value - anathema to modern conceptions of choice. So the body must essentially be dead matter in motion.
On the other hand, this choosing imposes a tremendous weight on the chooser, what Travis Pickell calls “burdened agency.” This has two facets.
First, the possibility of choice eventually stokes an expectation, even a duty, of choice in dying. This manifests, for example, in the suggestion that it’s the responsible thing to do to create an advance directive or, if it applies to you, to make decisions about how far you’ll push the deployment of some form of advanced life-sustaining therapy (e.g., dialysis, ECMO). The extreme form of this is the duty to die.
Second, this choosing occurs in an environment with little cultural guidance on how dying should go. No one or no institution is a greater authority on the meaning and value of your body than you yourself. We seem to reinvent the wheel every time someone dies. This presumptive perk of liberalism is a burden because choosing this way is not how human consciousness or society evolved over millennia. For all those years prior to the 20th century we relied on institutions and communities to guide us, support us, enfold us. Sometimes that was abused, but traditions and institutions also provide narrative coherence in ways that don’t make us the author of everything, something our poor brains can’t keep up with very well.
Because our bodies are merely dead matter in motion requiring us to imbue them with meaning and value, we’re required to do just that or risk leaving it to others. This creates at least two tensions.
In one circumstance, someone might believe their body has meaning and value others don’t see. Clinicians sigh outside the hospital room of someone who, in their eyes, is pointlessly suffering. It’s up to the patient to justify, if only to themselves, why they continue to live as clinicians offer subtle and not-so-subtle cues that medical technology is a “bridge to nowhere.”
In another circumstance, someone’s body might have no meaning or value for them but others disagree. This has been classically construed as a cognitive distortion common to major depression but is increasingly viewed as a rational appraisal of one’s life that justifies suicide or euthanasia, even over the objection of those close to the patient.
In the face of these tensions, clinicians are learning how to cope, emotionally and ethically. Papers are published offering to help clinicians and others discern the relevance of principlism, utilitarianism, or virtue ethics to medical decisions that have been twisted into pretzels in attempts to accommodate the one who has sovereign choice over a body empty of any objective meaning or value.
There’s another, less frequented discussion, at least in the medical literature. It’s one Stephen Jenkinson tries to get his readers to engage. What about the patients themselves? What are they supposed to do? How should they think, feel, or choose? To even ask those questions is to stand on tip-toe in an attempt to look beyond the gargantuan wall of liberalism that has fenced in medical decision-making for so long.
I wonder what’s over there.
A Better Survival
In contrast to what I just described, how might a different vision of the human person shape how we approach survival? Because humans are dependent, vulnerable, and limited, illness is the abnormality that reveals what is normal, indeed fundamental, in human life.
Being ill creates special forms of dependence.
When we’re well, we can fool ourselves into believing we’re independent when that’s not true. Illness lifts the veil. Dependence becomes obvious, particularly when survival is on the line.
When seriously ill, people become dependent on clinicians for medical expertise in decision-making and life-saving interventions. Surviving with serious medical illness is an effort of the community. Although the authority to finally make decisions rests with the patient (or their surrogate decision-maker), others can come alongside to help bear that responsibility. Although this special form of dependence provides the occasion for using strange therapies which are life-sustaining, clinicians and patients alike should recognize the strangeness doesn’t arise because dependence is strange, but because we are so used to living our lives like we’re independent. The more extreme the intervention needed to survive, the more obvious it should be that the normal state of human existence is one of dependence.
It may be the case we can relieve this special state of dependence, to allow someone to live without a ventilator, dialysis machine, or some medication. They may become more independent than when they were ill. It would be a shame if they walked away from that with the belief they somehow were totally independent though. This recognition of dependence allows people - the patient themselves, if they can, and those caring for them, to realize, as Alasdair MacIntyre wrote, “…each of us achieves our good only if and insofar as others make our good their good by helping us through periods of disability to become ourselves the kind of human being…who makes the good of others her or his good…”
Depending on others for survival provides one of the most acutely potent reminders of this bedrock reality of human existence.
When seriously ill, trade-offs are necessary to survive.
These trade-offs involve accepting risks (uncertain negative outcomes) and burdens (certain negative outcomes). The sicker someone is, the more vulnerable they are to these risks and burdens.
Medical brinkmanship spurns these risks and burdens. Daniel Callahan wrote,
“It is well recognized by now that, if medical technology is pushed too far, a person can be harmed, that there is a line that should not be crossed. I define "brinkmanship" as the gambling effort to go as close to that line as possible before the cessation or abatement of treatment. Common sense seems to dictate such a course: aggressively work to prolong life until it becomes futile, or harmful, to continue doing so; then, just as boldly, halt life-extending treatment. But this seemingly obvious strategy assumes an ability to manage technology and its consequences with a delicacy and precision that medicine simply does not possess and may never possess. The effort to go as close to the line as possible is itself the problem, resting on naive illusion and false assumptions.”
Instead of medical brinkmanship, clinicians could recognize patients’ vulnerability not just to physical risks and burdens but also time toxicity (time spent traveling to and sitting in medical facilities is time not spent doing other things), financial toxicity, and existential toxicity (e.g., leaving important existential tasks undone while believing prolonged survival is just around the corner).
Those who struggle to survive, who are in fact dying, can be harmed in special ways. Although no moment is guaranteed, most of us will live to see another day, to receive another opportunity to say we’re sorry or thank you to someone we love. Those opportunities are rapidly vanishing for the dying person. Patients make themselves even more vulnerable to this existential toxicity when they fight to survive when dying is just as likely, and clinicians harm them when they don’t recognize this vulnerability.
This is tough for clinicians too because we want to offer unalloyed help. However, when our patient is struggling to survive, most of what we offer are pharmakons. We shouldn’t hide behind the belief that a patient’s mere choosing means they “accept the risks.” Patients are vulnerable. Trade-offs are necessary. Choosing isn’t a means of defying or defending one’s vulnerability, but should be recognized as a fragile act carried out in the context of that vulnerability. Trade-offs come with the territory.
It does not make death more certain to see what death brings into view, but it requires acknowledging our vulnerability.
This patient is going to die.
This person may die today, or next week, or in ten years, but serious medical illness brings into sharp focus the major limit of survival: death. As Stephen Jenkinson reminds me periodically, every ache, let alone a life-threatening illness or injury, is a reminder of this limit.
This reveals important existential tasks. It’s true the patient can choose either take these on or not (and may not have the cognitive capacity to do so), but they’re worse off if they neglect them. Indeed, a culture which devalues existential work gives patients this meager way of dying, as Jenkinson observes:
“Knowing death well means knowing how and what it is to die now, in our time, and here, in a culture we have grown accustomed to and mostly believe in. It means knowing death not as an intra-psychic event transformed by the psyche into another attribute of personality or neurosis or repetition compulsion, but as a cultural, political, spiritual event that demands of all of us on both sides of the canyon of dying a cultural, political, and spiritual intelligence, savvy, and capacity. Snowflake advocates might demand at this point, ‘Well, whose death is it, anyway?’ and the only answer worth a damn, the only answer that gives the rest of us some way of being human in the face of it, is that it is the culture’s death, one person at a time. I don’t mean that each person’s death is the death of the culture. I mean that the culture renders each death unto the one who is dying. The culture gives us our ways of dying, gives us the meanings and meaninglessnesses we wring from it, forcing upon us the repertoire for dying.”
The existential tasks imposed by illness are tied to, obviously, the very essence of existence: seeking wholeness, control, love, belonging, freedom, agency, and many other ideals. Illness isn’t just a thing that happens to you. Havi Carel knew this personally and observed, “illness turns from being an external intrusion to being a form of existence.” She argues elsewhere, “Illness forces us to relearn not just to look at the world but also to cope with it, to negotiate the environment and to continue to live to the best of our ability within new constraints. The consequences of such coping with practical limitations can be personal and philosophical illumination.” Ira Byock argues this should rouse us to have important conversations before they’re too late - conversations about love, forgiveness, and gratitude. Sure, I’m not in the business of twisting anyone’s arm to engage these things, but sometimes the culture has gotten there first, teaching them to avoid and deny.
The very limits of the human frame are brought into stark relief when survival is on the line. Will we see them?
In observing that humans are dependent, vulnerable, and limited, I’m not discounting the importance of their decision-making. Rather, I’m placing that decision-making in a context that accords with human living. Once we do that, I think we’re in a better position to help people survive better, for whatever time they have.
At least, it guards against explicit judgements of lives not worth living. The culture imposes its own implicit judgments.