Sunday, March 27, 2016

Cancer and paternalism

In his posthumously published memoir, When Breath Becomes Air (2016), Paul Kalanithi describes an early visit to his oncologist, a woman he already knows from his own work as a neurosurgeon. He asks her about the Kaplan-Meier curves for his cancer; this curve, as he explains elsewhere (95), “measures the number of patients surviving over time.” What he says seems carefully measured: “‘I know now’s not the time,’ I proceeded, ‘but I will want to talk about the Kaplan-Meier survival curves.’” She flat-out refuses, and without explaining why: “‘No,’ she said. ‘Absolutely not.’” (122) She refuses again, equally bluntly, at a later meeting. (130)

What justifies her refusal? Perhaps the answer is "nothing"; the patient asked a question and the physician should have answered it by providing the information her patient sought. That's the anti-paternalistic position, and it really has two elements. One is the argument that the patient is entitled to be the master of his own life, whatever the results. The other maintains that a well-informed patient is actually the person best equipped to make wise choices - the choices that will lead to the best results - about his treatment and his life.

Both of these are plausible arguments. In most circumstances I would say they are not just plausible but correct. And yet Kalanithi's oncologist evidently didn't accept them. In fact she never tells him how much time he has left, until his cancer has advanced much further and she tells him, then, that he has “five good years left.”  (193) Kalanithi understands that when she says this, she is reassuring herself as much as him, “two people huddled together, as one faces the abyss.” (194)

It's possible that this series of events points to a common explanation for paternalism: that it protects the person acting paternalistically more than it protects the supposed beneficiary of the paternalist's protection. Perhaps Kalanithi's doctor found discussions with her patients about their potential life span uncomfortable, and only spoke in these terms when her empathy for Kalanithi’s situation made her even more uncomfortable with withholding reassurance. But this explanation, true as it may sometimes be, doesn’t feel correct here. So why would Kalanithi’s doctor have thought that Kalanithi’s best interest imperatively called for her to refuse to discuss the mortality curves even after he had asked her to do so?

One answer might be that the oncologist knows her patient can't handle the information he's asking for. It's true that he might be overwhelmed by the blunt facts about his disease, but it's hard to believe that the oncologist knows this. After all, when she first meets him as a patient she has never seen him come to grips with having cancer. How could she be certain that he will be overwhelmed?

I think a better answer is that she does not know, but instead is uncertain how he will respond. He has asked for the information, and done so in the precise way that a physician might. That is some evidence that he wants the information and is ready for it - but it's not conclusive. Her patient has not dealt with being a patient before, and he himself probably can't be certain how he will respond. The doctor, for her part, can't easily know how good a judge of himself the patient is. There's also an oddity to his request that the oncologist might have reacted to - Kalanithi himself is a neurosurgeon, and undoubtedly can find the information he seeks. Why hasn't he in fact done just that? Perhaps he didn't entirely want the information, though he felt - as an expert, rationalist physician - that he should want it. (Later he does look up the statistics himself (132); that might indicate that his oncologist misjudged him from the start, or that she properly understood that if and when he was really ready for the data, he would get the information himself.)

Perhaps the central point is that the meaning of the patient's request isn't self-evident. Word-by-word, Kalanithi's request was very clear, but even those clear words leave much about his motivation and desire uncertain. What if a patient says something less precise, such as "What am I facing?" or "What does this mean?" Those questions may be both requests for information and requests to not receive too much information. Put differently, they may be requests for reassurance as well as for information, and it may be that the patient wants reassurance more than he wants information.

It is true, of course, that a doctor faced with patient requests whose meaning she can't precisely decipher could ask her patient to spell things out. “Do you want me to avoid giving you precise mortality figures?,” she might say. But a patient who would prefer not to see such data may still feel he must look at them if they are on offer - so asking him to spell out his wishes may interfere with the process of indirect, ambivalent communication that's underway.

And, finally, this is cancer. In most circumstances, we should probably presume that each person is capable of shaping his or her life, and that our duty in seeking to help this person is to help him or her exercise that capacity. But if the client, or friend, or patient is so disrupted by what they face that they cannot make a reasoned judgment about how to face it, then others may need to step in – and cancer is a powerful disruptor.

The potential need for intervention is all the more pressing because a patient who is overwhelmed by distress or fear may not be able to fight the disease as well as he otherwise could. The doctor has to honor the patient’s right to make decisions; but at the same time she needs to help the patient maintain a firm and optimistic spirit, because that spirit may in turn promote health. These two duties may not point in the same direction.

All of this is to say that in conversations between an oncologist and a cancer patient, the normal presumption that a clear client question deserves a clear answer from the professional serving that client seems to lose some of its force. Not all of its force – I'm still inclined to say that over time the doctor should come to know the patient well enough to learn how to help him address his situation head-on if that is what he wants to do. Professionals in other fields, and other contexts, may also reasonably believe that full candor is something that requires time, and in this sense the cancer doctor's decision to speak more reassuringly than precisely at the start of the relationship is not unique. 

But cancer makes the limits of the normal presumption about the professional's duty to obey the client's particularly clear. It is part of the doctor’s job to guide her patient as he reckons with the challenge of a cancer diagnosis, and sometimes she may be right to guide the patient in ways that depart from what he has initially declared as his wishes. Where to draw the line between valuable guidance and insensitive imposition then becomes the crucial question.

1 comment:

  1. And - how do you answer the question, Steve? In your own case - how much did you want to know? It seems you and Teresa energetically seek out all that is written about this horrid disease, but did you want your oncologist to tell you more? less? or was it "just right?" Or did it not matter at all how much he/they told you?

    In my own mostly healthy life thus far, I've decided to not look into any medical worries through internet searches after 4 pm. After 4 pm, it creeps into that night's dreams and might take grotesque forms. Before 4 pm, I can mostly process what I find with some judgment. Get well soon Steve!