“Stop skipping dessert:” A Stanford neurosurgeon and cancer patient discusses facing terminal illness
on October 20th, 2014 10 Comments
Updated 10-23-14: Dr. Kalanithi spoke about this topic on campus earlier this week; more on the event, and his insights, can be found here.
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.