When our days are limited, medical priorities may not align with what matters to us most, says surgeon Atul Gawande.
Why are you interested in mortality?
Medicine is grappling with what is ultimately an unsolvable problem. I never felt I had good answers for people who were facing death; when do we push ahead with treatments and when do we not? It wasn't until I connected with experts working in palliative care that I began to gain a sense of how you can unravel these problems. At the centre of the issue is the difference between the medical priorities of health, safety and survival, and an individual's priorities for well-being.
Has medicine got its priorities wrong?
We make trade-offs every single day. For my patients in nursing homes, often their biggest struggle is with things being taken away from them, in the name of health, that they care deeply about. You'll see people with Alzheimer's who want nothing more than a cookie, but are given only pureed food because they might choke. We do these things in the name of health, but there's a larger idea about what makes life worth living that we're not serving. That comes to bear most obviously at the end of life.
Why have we come to see the end of life as primarily a medical problem?
I think the big change has been the family. My grandfather lived in a village in India and died at the age of 108. He spent the last decade of his life needing substantial help to live, but it didn't require him to be in an old age home. It worked because he was surrounded by family who would take care of him -- but that only worked because young women were more or less enslaved to the task.
The success and growth of our economies have come from giving young people the freedom to choose the work they want and where they want to live. Pensions have been important in giving older people the financial independence to live without family; the problem comes when you can no longer take care of yourself. We've decided that this is a medical problem, but the medical focus is on health and safety -- not on what people might see as their most important priorities.
You have written that the medicalisation of death is "an experiment that is failing". Why?
We see failure on multiple levels. One is the sheer amount of suffering endured by people in institutions such as old age homes or intensive care units. On another level, you are admitted into these institutions and no one knows who you are; no one recognises the arc of your life and the things that have been important along the way. The most important thing about you is that you are diabetic, and you have some problems walking and swallowing -- that's who you are.
But there are other approaches. For instance, one major study in cancer patients found that people who receive early palliative care choose less chemotherapy, spend less time in hospital, and start hospice care earlier. And the result? They have less suffering, lower cost, and they live 25 per cent longer on average. This suggests we've just been making bad decisions.
Is death a subject that doctors feel comfortable discussing with patients?
Generally, we're very confident about our ability to manage these situations. I'm very good at telling people: "You've got a bad situation. We could do an operation and there's a 50 per cent chance that you won't make it through, but if you don't have the operation there's a 100 per cent chance that you won't make it through."
But we're not good at helping people tell us what trade-offs they are and aren't willing to make. Choosing that 50 per cent chance is absolutely the right thing to do if you are pursuing goals that are in line with a person's priorities. But if survival means she'll be cognitively impaired, never return to her house, have to be fed through a feeding tube and endure pain and suffering -- when the most important thing to her is being with her family, being mentally aware, or completing some work she's focused on -- suddenly a different choice might be better.
Have you ever offered treatment you knew probably wouldn't work and could make someone's life worse?
Absolutely. In my new book, Being Mortal, I describe a 34-year-old woman who was diagnosed with metastatic lung cancer during her first pregnancy, and then turned out to have thyroid cancer too. I found myself offering surgery for her thyroid cancer, when the reality was the lung cancer would kill her long before the thyroid cancer caused problems. The difficulty and anxiety of trying to come to sensible decisions and acknowledge what's in the room -- that here's a problem we aren't going to be able to control, just manage -- can leave you offering fantasies of the future.
Has researching the book changed the way you interact with dying patients?
The core change has been to shift from saying: "Here are the pros and cons, what do you want to do", to asking: "What is your understanding of your condition; what are your goals and fears; what trade-offs are you willing to make?"
Recently a friend came to me whose best friend has been diagnosed with advanced brain cancer and needs increasing amounts of help with each passing week. His doctors aren't acknowledging this person crumbling in front of them. They're rightly trying the first rounds of chemotherapy and radiotherapy, but in the meantime nobody knows what could happen next, and no one is asking: "How shall we help him cope, and what would he actually want if time becomes short?"
So what advice did you offer your friend?
That there's a powerful conversation to be had around what well-being means to that person. Ask those questions, hear his answers, use them to make plans, and then understand that they will change and you will have to ask the questions again in a few weeks. His friend may not yet be at a point where he can discuss any more than one of those questions, but it would be a lot more than they've got to go on now.
Do you support the idea of assisted dying?
I think there's often a misplaced goal. The goal shouldn't be to have a good death, but to have as good a life as possible, all the way to the end. I support having the capacity to do something for people with unbearable suffering, but it troubles me that we have focused on assisted dying without having figured out assisted living very well.
Have you thought much about how you'd like to spend your own twilight years?
Right now, I'd say that if my body went I would still want to be alive, but if my brain went, let me go. But I know that what I think is likely to change, and I want to be in circumstances where I can re-evaluate and have that conversation about my priorities.
We all live for something larger than ourselves -- it might be family and community connections, or making our own contribution to the world. Those are the things I want to hang on to. I also want to be in a place where I have some freedom to choose how I cope with my limitations; where I can have a cookie, even if it isn't the healthiest thing to do.
By Atul Gawande. Interview by Linda Geddes.
Atul Gawande is a surgeon at Brigham and Women's Hospital in Boston and a professor of surgery and public health at Harvard University. He is a staff writer for The New Yorker. His latest book, Being Mortal: Illness, medicine and what matters in the end (Profile Books), is out this month.
Citation: Gawande, Atul. "We're Looking At Death The Wrong Way." New Scientist 224.2991 (2014): 30. MAS Ultra - School Edition. Web. 6 Feb. 2017.