麻豆传媒

Medical priorities may conflict with human mortality (Image: Christopher Morris/VII)

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鈥檛 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鈥檚 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鈥檒l see people with Alzheimer鈥檚 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鈥檚 a larger idea about what makes life worth living that we鈥檙e 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鈥檛 require him to be in an old age home. It worked because he was surrounded by family who would take care of him 鈥� 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鈥檝e decided that this is a medical problem, but the medical focus is on health and safety 鈥� not on what people might see as their most important priorities.

You have written that the medicalisation of death is 鈥渁n experiment that is failing鈥�. 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 鈥� that鈥檚 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 . This suggests we鈥檝e just been making bad decisions.

Is death a subject that doctors feel comfortable discussing with patients?
Generally, we鈥檙e very confident about our ability to manage these situations. I鈥檓 very good at telling people: 鈥淵ou鈥檝e got a bad situation. We could do an operation and there鈥檚 a 50 per cent chance that you won鈥檛 make it through, but if you don鈥檛 have the operation there鈥檚 a 100 per cent chance that you won鈥檛 make it through.鈥�

But we鈥檙e not good at helping people tell us what trade-offs they are and aren鈥檛 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鈥檚 priorities. But if survival means she鈥檒l be cognitively impaired, never return to her house, have to be fed through a feeding tube and endure pain and suffering 鈥� when the most important thing to her is being with her family, being mentally aware, or completing some work she鈥檚 focused on 鈥� suddenly a different choice might be better.

Have you ever offered treatment you knew probably wouldn鈥檛 work and could make someone鈥檚 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鈥檚 in the room 鈥� that here鈥檚 a problem we aren鈥檛 going to be able to control, just manage 鈥� 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: 鈥淗ere are the pros and cons, what do you want to do鈥�, to asking: 鈥淲hat is your understanding of your condition; what are your goals and fears; what trade-offs are you willing to make?鈥�

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鈥檛 acknowledging this person crumbling in front of them. They鈥檙e rightly trying the first rounds of chemotherapy and radiotherapy, but in the meantime nobody knows what could happen next, and no one is asking: 鈥淗ow shall we help him cope, and what would he actually want if time becomes short?鈥�

So what advice did you offer your friend?
That there鈥檚 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鈥檝e got to go on now.

Do you support the idea of assisted dying?
I think there鈥檚 often a misplaced goal. The goal shouldn鈥檛 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.

鈥淭he goal shouldn鈥檛 be to have a good death, but a good life 鈥� right to the end鈥�

Have you thought much about how you鈥檇 like to spend your own twilight years?
Right now, I鈥檇 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 鈥� 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鈥檛 the healthiest thing to do.

This article appeared in print under the headline 鈥淲e鈥檙e looking at death the wrong way鈥�