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.

Saying yes and saying no

Last fall the family of Arthur Chaskalson invited me to write Arthur’s biography. Arthur Chaskalson was a force for justice and law throughout his long and productive life. He was the first President of South Africa’s post-apartheid Constitutional Court, and before that he co-founded and then led the Legal Resources Centre, which played a crucial role in the remarkable campaign to use South African law itself to challenge apartheid and remains a steadfast voice for human rights in South Africa today. He was also my friend for 25 years until his death, at the age of 81, in 2012.

I was very excited to get this invitation – but then came my cancer diagnosis. At the time my chemotherapy began, my doctors didn’t want me to make any long-term work commitments. It was only as it became clear that I was doing well with the chemotherapy, so well that it seemed likely that the disease itself was being beaten back, that my oncologist told me that I could make a commitment to a two-year work project. And so I said yes to the family’s invitation, with great pleasure.

Two years is not a great deal of time to write about a life as full as Arthur’s. If it turns out I can keep working for longer than that, as I hope, I’m sure I can make the book more complete. But I believe I can tell Arthur’s story, and especially the part of that story that I had the privilege to be part of, in two years.

To do that, however, I’m realizing I have to be very focused. Everyone knows that in order to do one job, you have to be prepared to say you won’t do others, but now I see this fact more plainly. As Paul Kalanithi – a young neurosurgeon who suddenly faced, and ultimately succumbed to, cancer – wrote in his book When Breath Becomes Air (2016, at pp. 131-32), “Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely.” To put this point in somewhat different words, now I understand something that was always true: that each day’s time is precious. I will do more at work in these two years than just write this book – right now I’ve begun teaching again – but I will watch my commitments carefully. I now know, acutely, that saying no is part of saying yes.

Actually getting chemotherapy

In Creed, the latest Rocky movie, there is a scene where a patient (I won’t say who) is getting chemotherapy. When I saw it last night I realized that I couldn’t recall ever seeing chemotherapy on screen before, even though we’ve all seen many hospital moments in movies and TV. I also realized that I’d never quite described the actual process of getting chemotherapy in my earlier blog posts about the treatment process at Sloan-Kettering.

So, with the benefit of 10 infusions under my belt (actually, in my arm) so far, here goes. What I’m describing isn’t the only way cancer patients get chemotherapy; some people have a “port,” which allows for multi-day infusions (and there may be other methods I don’t know about). But my infusions last about three hours, and that’s what I’ll describe here.

When Teresa and I get to the treatment cubicle – hopefully on schedule, but we’ve noticed that later in the day there often seem to be delays of various sorts – I sit down in a large chair meant for the patient. It’s adjustable, though I still haven’t completely gotten the hang of the controls, so with some awkwardness I eventually get the leg rest to come up and the back to go down a bit – like a reclining chair in a den! Along with the reclining chair, there’s a TV and earphones in each cubicle, but we’ve never used them. Each cubicle also has a computer, which the RN’s use, and when they’re not using it I do spend some time looking at Sloan-Kettering’s screen saver, a series of photos of winter scenes, taken by members of their staff.

As I’ve mentioned in other posts, you can often hear conversations in the nearby cubicles (which are separated by curtains rather than walls). Usually everyone sounds calm. One week not long ago, however, we listened as one patient began calling out angrily for a nurse; I found that so disruptive that I called out “Stop that yelling” – startling Teresa, but also causing this man to make an effort, at least for a little while, to speak more courteously.

Meanwhile the RN – all the chemotherapy infusions are overseen by RN’s – has arrived. He or she reviews your health status, asking in particular about typical side-effects. If we’ve seen the oncologist and the nurse who works with the oncologist earlier that day (as we do every 3 weeks), then these questions have already been asked, but other weeks that wouldn’t be true, and in any case I like the basic idea that the RN’s are not just doling out the medicine but also taking responsibility for checking on my wellbeing.

Then the RN inserts the IV. (If you don’t like needles, you may want to skip this paragraph.) The needle, with a small tube attached to it, is a separate piece of equipment; once it is safely inserted, then other tubes get connected to this one, and through those tubes come the medications. The needle itself is, in my opinion, a bit long: maybe ½ to ¾ of an inch, and the RN inserts it to its full length, and then tapes it down. Once it’s in, I usually don’t feel anything from it, but sometimes the RN does some twisting the needle around first to make sure it’s settled properly in your blood vessel.

Sometimes this process doesn’t go perfectly. How easy it is to insert a needle in your vein or artery (I’m not quite sure which they’re aiming for) depends on how accessible your blood vessels are; that in turn depends on many things about your health, some of which you can’t control. One thing you can control is how hydrated you are; better hydration is important in all sorts of ways, but one of them is that more hydration leads to more accessible blood vessels. I’ve been becoming very well hydrated!

Still, in the course of my 10 infusions I’ve several times had the first “stick” not work. When this happens, the RN is always professional about it; it’s clear they want it to be right and will do a second stick if necessary. This past week, everything went fine, but the RN began the session by reminding me that the previous week I’d had to have two sticks; so I guess they keep records of exactly how the infusion process goes.

Anyway, with the needle inserted, and the tubes hooked up, the actual infusion begins. But not with the chemotherapy. Instead, they start with hydration; by the end of the process they’ll have infused about two large bags of saline solution. Once the hydration has begun they turn to the anti-side-effects drugs: in my case, two different anti-nausea medications, plus a steroid. Then they get to the actual chemotherapy – pausing to carefully record what medications they’re about to use, with another RN in the room to confirm the information. I receive gemcitabine and cisplatin, the combination viewed as the most effective treatment for my particular form of liver cancer. One of these can produce a burning feeling when it’s infused; for that they apply heat around the infusion site, and I don’t usually feel much discomfort at all.

All of this takes about three hours. (You can take your chemotherapy with you to the bathroom along the way if you need to.) It’s not very dramatic, and it’s only uncomfortable for a few moments. Some of the time I read; occasionally I’ve answered work e-mails, though in hindsight I thought that made the whole process more stressful. I eat the snacks Teresa has brought with us. And I sleep, often for an hour or more. Part of the reason I sleep is probably that we’ve gotten up so early to beat the traffic on the way into New York, but I think another part is that even though the infusion process is quite low-key, it is still intense. After all, a lot of stuff is going into your body, and of course some of it is very powerful. You, and the other people in the cubicles up and down the hall, are calmly having poison injected into you, poison you deeply hope will fight your disease.

Then when it’s all done we leave, get our parking ticket validated, and come home.