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Rethink how you confront death urges Harvard professor -

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LEIGH SALES, PRESENTER: 50 years ago, most people used to die at home. These days, it's fewer than one in five and a swift catastrophic illness is the exception. Many of us will see our final days or years drawn out in a slow and sometimes humiliating decline, often attached to machines in institutions such as hospitals or nursing homes.

One highly-accomplished American doctor has spent many years looking at end-of-life care and the process of dying and he says both doctors and patients should rethink how we manage it.

Atul Gawande is a Boston-based surgeon and Professor of Medicine at Harvard University. His new book is called Being Mortal and he's in Australia for the Sydney Writers' Festival.

Thank you very much for making time to speak to us.

ATUL GAWANDE, AUTHOR, BEING MORTAL: It's great to be here.

LEIGH SALES: A little over 50 years ago, most people died at home and now it's just 17 per cent. Why is that the case when so many people express a preference to die at home?

ATUL GAWANDE: Well of course part of the reason is you never know exactly when that moment is, so, in the 1950s there wasn't a particular reason to go to the hospital because there wasn't a lot discovered that could be done in many instances. Now we've discovered thousands of treatments, medications, approaches that can be taken and so there's a great faith that, "Well, if we can't cure you, maybe there can be something that we can at least do to bring you back to the way you were." And we in medicine are often willing - unwilling to say, you know, something beyond, "Well, there's always something we can do. Do you want it or not? Do you want us to do something or do you want us to do nothing?" And then that kind of choice, you know, often, how can you say we're not gonna - we should do nothing? But what I found over time was that's just the wrong question.

LEIGH SALES: What is the right question?

ATUL GAWANDE: Well, the puzzle is: what are your priorities besides just living longer? What matters to you? And the easiest way to think about is: what are you willing to sacrifice and what are you not willing to sacrifice for the sake of more time? And people have different answers to that. My father had a brain tumour, and so we had that conversation about what he was willing to sacrifice and what he wasn't willing to sacrifice. One of my colleagues, her father, when she asked him those questions, he said he was willing to go through a lot as long as he could watch football on television and eat chocolate ice-cream. It was like the best living will ever. My father, he said that's not good enough for him. He wanted to be at the dinner table at home, talking to family or friends, and if he could at least do that, once in a while, once a week, he'd be willing to go through a lot for that. But if we couldn't make that possible, if he was never going to get home, that is not the way he wanted.

LEIGH SALES: That he would rather die?

ATUL GAWANDE: He'd rather that we not keep on doing things that prolonged a quality of life that was no longer the reason he would want to be alive. And it was enormously important that we got to have that conversation in advance. The result was he spent the last four months of his life really at home just being a person more than a patient. And that is all too uncommon. We've medicalised mortality, turned it into just another problem to treat, always something more that we could offer, without thinking about really what are people's priorities and how do we make sure as they come to their last phase of life, that we're making as good a life as possible all the way to the very end and not sacrificing it?

LEIGH SALES: It's one thing for us to have this conversation in the abstract here. I imagine it's a very different proposition when you actually have to have it with somebody who's nearing the end of a life. Are doctors well-trained to have those conversations?

ATUL GAWANDE: So, I wrote the book precisely because I found that I wasn't. I opened my book saying that I learned about a lot of things in medical school, but mortality wasn't one of them. And, you know, we mostly are trying - we're excited in medicine about learning what diseases people are likely to have, how they work and how to fix them. And the surprise to me was finding in practice that a large percentage of my patients had problems I really wasn't ever going to be able to fix or make better. They were suffering from the infirmities of ageing or a terminal illness. And we weren't - I didn't feel competent in understanding how I take care of the unfixables in people's lives. So I interviewed more than 200 patients and family members about their experiences with serious illness or infirmities, scores of palliative care experts, nursing home directors, nursing home aids, and I found that there were some real skills that mostly are about recognising that our job is - I thought the job that I had was to try to tell you the facts. You know, here are - here's your prognosis, here are the options. What do you want to do? And in fact what it is is to help people come to terms with their anxiety about dying, mostly by asking questions that let them put their experience in their own words, like what's your understanding of where you are with your condition? What are your fears and worries for the future? What are your priorities if your time becomes short? Hard questions to ask, even harder questions to answer. But I found that you could ask them and that they made for an unexpectedly kind of gratifying experience that you could shape the treatment to what people really wanted in their lives.

LEIGH SALES: Is there such a thing as a good death?

ATUL GAWANDE: You know, I'm bothered by the idea of a goal being a good death. There's some extent to which death and dying is never pretty and not in your control. The goal is as good a life as possible all the way to the very end under the circumstances you face. And I think we're often depriving people of that. People are coming to their end often in an intensive care unit, on a machine, oblivious to the fact that they didn't even know this was going to be their last waking moment on Earth. They'd come into the hospital; they didn't know they weren't leaving. They never got to say goodbye, they never got to say I'm sorry or I love you or make any plans like that. And I think we in medicine have overlooked the ways in which that is a form of intense suffering for people - for the family members and the person themselves. And it's not just because of the machines and the misery, although the suffering, the physical suffering is there; it's also the psychic suffering that this is not how people want to go.

LEIGH SALES: Are these conversations that are being had in medicine generally or are you out there on your own discussing this stuff?

ATUL GAWANDE: Well I think there are a few fields, like geriatrics, palliative care medicine, hospice care, where the skill of being able to elicit what people's goals and priorities are and match care so that you've aligned - here's what we've done. We've created medicine to be completely narrowly focused often on just the disease you have and fighting the disease rather than thinking about what your goals are, where your priorities are in fighting your condition. And I think those pockets of specialties - geriatrics, palliative care - have developed those skills, but there aren't enough of those people to go around. And part of the reason to write about this is to say these skills have to be ones that other people in medicine have. But then you realise family members themselves can ask these questions. These are not - these are not impossible things to talk about as families. And in many ways, it's going to be because the public insists that medicine take these priorities and goals seriously that medicine will change.

LEIGH SALES: Thank you so much for your time.

ATUL GAWANDE: Thank you.