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"Stop skipping dessert:" A Stanford neurosurgeon and cancer patient discusses facing terminal illness

Updated 3-11-15: Paul Kalanithi passed away on March 9.

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Updated 10-23-14: Paul Kalanithi spoke about this topic on campus earlier this week; more on the event, and his insights, can be found here.

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10-20-14: When Paul Kalanithi, MD, a chief resident in neurological surgery at Stanford, was diagnosed at age 36 with stage IV lung cancer he struggled to learn how to live with conviction despite a prognosis of uncertainty. He found comfort in seven words from writer Samuel Beckett, "I can’t go on. I’ll go on."

That mantra has given Kalanithi the strength to face his own mortality and have tough conversations with his wife and loved ones about the future. Tomorrow evening, he'll join palliative-care specialist Timothy Quill, MD, for a discussion about end-of-life decision-making. The campus event is free and open to the public; no registration is required.

As a preview to the talk, Kalanithi talked with me about his experience as a patient and about the importance of end-of-life decisions.

How has your prognoses changed the way you talk to patients and their loved ones about grim news?

In large part, the way I talk to patients and their families hasn’t changed, because I had excellent role models in training. I remember witnessing a pediatric neurosurgeon talk parents through the diagnosis of their daughter’s brain tumor. He delivered not just the medical facts, but laid out the emotional terrain as well: the confusion, the fear, the anger and – above all – the need for support from and for each other. I always strove to emulate that model: to educate patients on the medical facts isn’t enough. You have to also find a way to gesture towards the emotional and existential landmarks.

Seeing it from the other side, it’s really hard, as a patient, to ask the tough questions. It’s important for the doctor to help initiate these conversations. I think it’s worth addressing prognosis and quality of life with patients, asking them what they think. My own assumptions about my prognosis were way off base. As a doctor, you can’t provide definite answers, but you can remove misconceptions and refocus patients’ energy.

Finally, I think, if you are the oncologist, it’s important to establish yourself as a go-to for any questions. Patients are bombarded with well-meaning advice, from dietary recommendations to holistic therapy to cutting-edge research. It can easily occupy all a patient’s time, when you ought to also spend time thinking about the priorities in your life. Physicians can also advise patients, as my dad would insist, that they can stop skipping dessert.

What is your advice to patients who are struggling with the certainty of death and the uncertainty of life?

I’ve written a little bit about facing terminal illness in The New York Times and The Paris Review. I found the experience difficult. I still find it difficult. It is a struggle. The problem is not simply learning to accept death. Because even if you do come to terms with finitude, you still wake up each morning and have a whole day to face. Your life keeps going on, whether you are ready for it to or not.

In some ways, having a terminal illness makes you no different from anyone else: Everyone dies. You have to find the balance – neither being overwhelmed by impending death nor completely ignoring it.

You have to find the things that matter to you, in two categories. The first is of ‘the bucket list’ sort. My wife and I always imagined revisiting our honeymoon spot on, say, our 20th wedding anniversary. But I didn’t realize how important to me that was until we decided to go back earlier (on our 7th anniversary, instead, about four months after I was diagnosed).

The second is, as all people should be doing, figuring out how to live true to your values. The tricky part is that, as you go through illness, your values may be constantly changing. So you have to figure out what matters to you, and keep figuring it out. It’s like someone just took away your credit card, and now you really have to budget. You may decide that you want to spend your time working. But two months later, you might feel differently, and say, you really want to learn saxophone, or devote yourself to the church. I think that’s okay – death may be a one-time event, but living with a terminal illness is a process.

At what point after your diagnosis did you have discussions with your wife, family and health-care providers about end-of-life decisions? 

There’s no one ‘point’ you have this discussion. It’s not quite like the awkward birds-and-bees conversation your parents have with you when you are thirteen and no one ever mentions again. Instead, it’s an ongoing conversation between you, your loved ones, and your health-care providers. Early on, my focus was on practical financial matters. After eleven or so years of training, with its accruing debts and limited income, suddenly we wouldn’t be reaping the reward of a neurosurgeon’s salary. And I didn’t have a private life insurance policy. So there was a lot of stuff to do to make sure my wife was protected. I do think this is a neglected piece of end-of-life care. While most people won’t have their financial outlook change as much as we did, financial and estate planning is an important part of dying: You want to know your loved ones will be protected.

And that extends to the larger sense. I think my first words after diagnosis were telling my wife that she should remarry. It’s really not until you know the people around you will be okay that you can actually think clearly about the particulars of your death.

Finally, there are no static criteria, I don’t think, as to what amount of suffering you will tolerate. A lot of it depends on what you are living for. You might be willing to suffer longer in order to see your son graduate. That makes it trickier than just filling out an advance directive, which you still definitely should do at the very minimum. But you have to keep an ongoing conversation with loved ones and health-care providers, because things are constantly changing. That means you and your loved ones are obligated to each other to constantly bring it up. It might not be the most cheerful conversation, but it’s one of the most important.

What are some of the common misconceptions about palliative care?

I can’t claim any expertise in palliative care. I suspect most people think of it as care for the dying. But the thing about the dying is that until someone is dead, they are living!

Palliative care, as I understand it, is treatment of the symptoms, rather than the cause, of disease. That sounds like a lesser thing, but to me, it’s really the heart of medicine. It doesn’t necessarily mean doing less. One of my favorite operations to perform as a resident was a vertebrectomy. When a cancer patient had a metastasis to the vertebra that was crushing the spinal cord, you could surgically remove it and reconstruct the spine. It is a big operation. It will not cure the cancer. And it’s certainly not for every cancer patient. But for the right patient, it keeps them walking longer, in control of their bowel and bladder longer, and that makes a tremendous difference to that patient. The disease may be the cause of death, but it’s the symptoms that cause the suffering.

How early should doctors talk to patients about palliative care? 

I don’t think it’s ever too early to talk about palliative care. The specifics of exactly how disease and symptom management are going to work between your ‘disease treating’ doctor (e.g., your oncologist) and the palliative care team will probably vary a bit from place to place. But the conversation should start at the first visit, I would think.

Of course, it seems obligatory to cite the famous New England Journal of Medicine paper showing that patients with early enrollment in palliative care had higher quality-of-life and actually lived a bit longer to boot.

Previously: A Stanford physician’s take on cancer prognoses, No one wants to talk about dying, but we all need to, Study: Doctors would choose less aggressive end-of-life care for themselves and Communicating with terminally ill patients: A physician’s perspective
Photo by Deb

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