The Burden of Choosing

Of Autonomy and Brinkmanship

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. If you want to come along with me, subscribe and every new edition of the newsletter goes directly to your inbox.

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.

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“Whatever you choose, it’s the right decision.”

“That’s right, Dad. It’s your choice.”

His wife of fifty-three years nods too, patting her eyes with a tissue.

The man looks at his two daughters, at his wife, at the doctors and nurse.

His ventilator hisses and sighs. His dialysis machine hums.

The man looks around the room again.

The doctor clears her throat. “Do you think… do you think he understands?”

The man nods.

“Oh yes. He understands.” His youngest daughter squeezes his hand. “He understands.”

“Sir. Mr. Matthews. I agree with your family,” the doctor squats at his bedside. “It’s your choice. Whatever you want to do.” She pats his elbow. “What do you want?”

He looks at the doctor. He looks at his daughters and wife.

What does he want?

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I hate buying cars. I don’t know anything about them and I don’t know if I’m getting bamboozled. It’s a lot of money, and I want something that’s safe and efficient. Good news, though: there are a lot of options out there. I can go to a used or new auto dealer. I can scour websites. I can review sedans and vans and SUVs and all sorts of vehicles. I have so many choices!

But more choices don’t help me. That’s not my problem. My problem is that I need help.

So do patients and clinicians.

Burdened Agency

The ambivalence patients experience in making decisions about their health suggests it’s not the number of choices that matter but how they make the right choice.¹ Whereas in a bygone era, my health (or lack thereof) was often something with which I must cope. For most people throughout history, it just wasn’t a decision when you were going to die. Your family might try to change things with a ritual or an herb, but it was common that once you got sick or suffered a tragic accident, you died.

Not so in our modern day. Now we believe we have a great deal of control over health and dying. With control comes choice. While the decision to stop a life-sustaining therapy (LST) isn’t, in and of itself, suicide, it is a decision that must acknowledge impending death. This kind of decision is made every day in hospitals around the world. What cultural memory or resources do we have for making such decisions? None. We try to bypass this by handing the decision, in its entirety, to the patient. Choices are good, right? But this choice is a lonely burden. I suspect this is also why some clinicians will actively resist recommending a course of action: they feel it in their guts that this is a terrible choice to make, and they do not want to make it.

Travis Pickell calls this “burdened agency,” and describes its weight in the face of death. As we’ve grown our capacities to intervene on the human body, there also grows an “imperative to make choices that directly [affect] when and how death will occur.” This imperative falls on the patient seeing as they’re the owner of the body that bears the intervention. Compounding this burden is “the added strain of making such choices in the absence of guiding social, cultural, or religious norms.” All this is burdensome because people are “increasingly asked to take control of the conditions of dying - at the very moment that the social institutions that could provide guidance for such agency are gradually fragmenting.”

This is what “respect for autonomy” looks like when technology rules.

When I can choose the circumstances of my death, I am also responsible for my continued living. That’s a choice I need to justify, if only to myself. David Velleman saw the doubled-edged nature of this offer:

“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?'.”

Pickell is quick to add that the answer to this problem isn’t an attempt to “unburden” agency. The barn door’s already open on that one. He doesn’t offer any other response though. I’ve got a suggestion, but first, let’s consider clinicians in the face of their own choices.

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Albrecht Durer. “Doss Trento.” 1495.

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Technological Brinkmanship

Clinicians face their own forms of burdened decision-making. Driven by the imperative foisted on them by their technology (“If you can, you should,” chants palliative care social worker Stephen Jenkinson), they try to get as close as possible to help without touching harm.

This happens in ICUs every day. Someone breathing with a ventilator now starts to receive dialysis because their kidneys have failed, and their medical team adds one more pressor to buoy their blood pressure. The future is uncertain - maybe they’ll survive. At any rate, because they can push numbers in a healthy-appearing direction, the clinicians can’t say they’re causing more harm than benefit (even if they feel in their squirming hearts something’s amiss).

Daniel Callahan called this “technological brinkmanship,” by which he meant “the gambling effort to go as close to that line as possible before the cessation or abatement of treatment. … 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.” That strategy “can both save life and ruin dying.”

The decision-making for clinicians crescendos upon the fateful moments when the harms of further intervention are balanced against the benefits without any remainder. Or that’s what people believe anyway. Iris Murdoch, considering the nature of decision-making, wrote:

“I can only choose within the world I can see … If we ignore the prior work of attention and notice only the emptiness of the moment of choice we are likely to identify freedom with the outward movement since there is nothing else to identify it with. But if we consider what the work of attention is like, how continuously it goes on, and how imperceptibly it builds up structures of value round about us, we shall not be surprised that at crucial moments of choice most of the business of choosing is already over. This does not imply that we are not free, certainly not. But it implies that the exercise of our freedom is a small piecemeal business which goes on all the time and not a grandiose leaping about unimpeded at important moments. The moral life, on this view, is something that goes on continually, not something that is switched off in between the occurrence of explicit moral choices. What happens in between such choices is indeed what is crucial.”

Technological brinkmanship is a result of a process. It starts with a benign, even benevolent, hope in the goodness of medical intervention coupled with a reductionistic understanding of health. These are things to which the clinician attends, and these are the things that shape their decisions as they draw closer to the brink.

We struggle to see the brink because all the numbers don’t coalesce into any coherent vision of either “health” or “dying.” Each number on their own may appear healthy (“Ventilator settings are low,” “Dialysis going well,” “Blood pressure looks good”), but something is lost as the machines desiccate physiology into surrogate markers.

I’ve had in view the person who is obviously dying no matter what we do, like someone with widely metastatic cancer, severe malnutrition, and now multi-organ failure. But for the otherwise healthy victim of a motor vehicle collision, we truly can’t know they were dying until after they’ve died. I don’t know how often family and clinicians survey a trauma surgeon’s attempt to save this person’s life with the frustrated disdain Callahan brings to his assessment of brinkmanship. This is what we had to do, after all, to try to save a life. We couldn’t have known.

The difference between the two cases is that in the former, we could have known. We should have known. Perhaps we did indeed know. It’s in those cases that Callahan’s concerns about brinkmanship apply most clearly.

Better Choosing?

I suppose you could respond to the problem of burdened agency by attempting to “unburden” agency, reversing course to an era of paternalism. Patients would no longer need to make terrible decisions about their deaths. But we’re not going to do that, and it wouldn’t be good if we did.

Likewise, you could halt technological innovation or turn back the clock on some of the more advanced forms of life-sustaining therapy to cajole clinicians from the brink. After all, it’s technology that brought us there, and so dispensing with it will save us, right? We’re not going to do that, and it wouldn’t be good if we did.

It’s good to support the agency of our patients. It’s good that we have technological innovation. Neither of these things are bad, in and of themselves. But we can’t receive their benefits without their questions and burdens. I don’t think we can resolve these challenges by doubling down on what makes agency and technology good. The problem isn’t that we’ve incompletely realized their goodness. The problem is that the questions and burdens of choice and technology will always be with us.

It seems to me both of these problems suffer an anemic appreciation of limits. Patients need more than mere information to make good decisions about their health. Their decision-making starts well before the hour of choosing. When we ignore that, we distort the way people make decisions. Jodi Halpern picked up on this, arguing the clinical encounter works better when clinicians are emotionally attuned to their patients in a way she describes as “engaged curiosity,” in which “the physician recognizes that he or she does not fully understand and has more to learn about the patient’s situated experience…” She goes on to claim “the kind of empathy that patients most need from us is empathic curiosity - genuine, emotionally engaged interest in learning more about the complexity of their (and our responsive) emotional points of view.” This helps patients trust their clinicians more and give a more accurate history, eases emotionally fraught tensions, and relaxes the clinician (who themselves may be anxious and thus underperforming).

To harken back to something I’ve written before, clinicians need to attend well. By doing so, they can honor the limits of the people under their care. This engaged curiosity, this attention, whatever you might call it, can extend beyond the individual patient to the whole family of relationships to which they belong, seeking to shore up those relationships, whether they’re eroded in truth or only made to feel unwelcome in the clinic or hospital.

Clinicians could hone the habit of asking the question, “What is most important right now?” The natural state of the patient - a person, remember - is not acting as a medical decision-maker. They are someone in a web of relationships. Asking questions about priorities should tether our response to those relationships. How can pursuing health not in some way also involve restoring this person to their community? There are, sadly, some people who are utterly forsaken in this world. Even still, we can ask, “What is most important right now?”

There are still other questions, like, “What are we trading off to pursue what’s most important?” And, “How did this come to be the most important thing?” Some of these questions you might ask outright. Others might hang in the background of your curiosity as you ask other, more pointed questions about someone’s hopes and worries.

Attending well by asking these and other questions may also defuse attempts to engage in technological brinkmanship. It’s not enough to “pay attention” to our tools. We need to attend in a particular way, asking a question like, “What is this good for?” A ventilator might good for a sick person; is it good for a dying person? Before we jump to respond, “Well, no, of course not,” we might slow down: why, then, do so many dying people, whom we could have said were dying well before their admission to an ICU, wind up on a ventilator? Questions like this help us can see the limits of our tools.

Patients are burdened by their prospects and choices. These aren’t just decisions about their body; these are decisions about them. Clinicians stumble with their patients along the brink of human frailty and mortality. Neither should abdicate their responsibilities to the promises made by medicine itself. The way is dark, but the right questions can shine a little light ahead.

1. It’s true that in some parts of the world, and for some people, lack of choice is a real problem. For many, though, they face the complicated prospect of healthcare with too many choices. “Ha,” you might smirk, “Must be nice.” But it isn’t nice. More isn’t always better.