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Can we prepare ourselves for a gentler end of life? Author Atul Gawande thinks so

Atul Gawande, Rhodes Scholar, Harvard-trained surgeon and staff writer for The New Yorker, talked with Sandra Martin about his new book, Being Mortal, on how we age and face our inevitable demise.

Erik Jacobs/NYT

Atul Gawande, Rhodes Scholar, Harvard-trained surgeon and staff writer for The New Yorker, writes about the conjunction of the human condition and the practice of medicine. He is the author of the thoughtful and provocative bestsellers Complications, Better and The Checklist Manifesto. He talked with Sandra Martin about his new book, Being Mortal, on how we age and face our inevitable demise.

Your book reminds me of writing by physician/writers like Oliver Sacks, Abraham Verghese and especially Sherwin Nuland. Were you taking a step back and writing a prequel to Nuland's 1994 book, How We Die?

Sherwin Nuland is one of the reasons why I ended up writing. Nuland's book focussed on what happens in those last few moments before death and I wanted to go upstream to see if we can understand what is happening before that, in such a way that we can manage mortality with less cruelty than we currently do.

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Why are we having a crisis about dying?

We have medicalized the experience of aging and dying. In the last century we have added over 30 years to people's lives. In the beginning it was mainly because of public-health and sanitation measures. But in the last half of the century it was by extending independent productive life for much longer. Seventy-five may be the new 65 but that doesn't take away the fact that there are creeping limitations, or that serious illnesses can suddenly dramatically change the prospects of your life. When people can no longer be independent, either because of disease or age, we decided that medicine could solve the problem. Medicine is very good at problems we can repair, but we aren't very good at problems we can't repair. As doctors we don't recognize that people have priorities besides just living longer.

You write that we want autonomy for ourselves and safety for those we love. That sounds sensible. What's wrong with that?

We didn't build our systems of taking care of the elderly with the idea of what a good life for them would be. We did it to solve other problems, like the hospitals were filling up with people who couldn't be fixed, and so we started creating old-age homes as a place for their recovery and calling them nursing homes and applying medical ideas about health and safety rather than the goal of people being able to live as good a life as possible and make choices they wanted to make. As a consequence we have nursing homes that have become more like hospitals than homes and we have hospitals that are more like prisons where your choices about what matters to you have been taken away.

Are you seeing a cultural change from the era of the great medical guru handing down prescriptions and diktats to patients?

There are three kinds of relationships that doctors and patients can have. Half a century ago, the dominant relationship was that doctor knows best. Doctors would not give you options or explain what was happening. Instead they would tell you what you were going to do. We rejected that at the end of the last century and shifted to what I call retail doctors: Here are your options; here are the pros and cons, what do you want? If a patient asked, what do you recommend, we were literally taught to say it is for you to decide, not me. It turned out that people wanted a third kind of doctor: a counsellor. Somebody who can help you understand options and make a recommendation. It is still a minority of doctors who practise that way, but that is where I think we are heading.

You are very honest about your own fumbles in talking with patients about treatment options.

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I knew that I wasn't managing these questions about mortality well with my patients and that sometimes we were making poor decisions. And then I was stung with a father who was dying from an incurable cancer of his brain stem and spinal cord. The most miserable place for my father, a doctor, was his own hospital. He was admitted, his colleagues were taking care of him, but they wouldn't give him enough pain medication for fear it might make him groggy or sleepy, interfere with his breathing. They wouldn't pay attention to the things that he cared most about and he checked himself out.

Did writing change you as a doctor?

Absolutely. Writing allowed me to do things that others couldn't do. I interviewed more than 200 patients and their families. I followed scores of nursing-home workers, hospice workers, palliative-care specialists, geriatricians and then I was allowed to try to pull out of that what is going wrong and what could be done differently. The stuff that I learned along the way I put into my practice and experimented with it. It is pretty amazing. It is very clear that a conversation with a patient and how decisions are made is a skill that has components that can be broken down, dissected, understood and taught. But we haven't done any of those things. There are some experts who treat the conversation the same way that I treat the operations I do for cancer patients. I practise, I learn all the details, I vary my techniques. That is exactly what they do. They have done a transformative thing.

Do you see Advance Care Directives as key components in initiating the conversation?

Yes and no. I think we should make the ADC a normal part of medical care by making it systematic, and repeating it over time because your priorities change. I don't think you need to talk about your ADC every time you go into the clinic to get your acne prescription renewed, but there are crisis points, say when you are admitted to hospital, when you have a new diagnosis, when you move into a nursing home, when you are on new medication, and that is when you want to have these conversations. You can overdo it, but we are nowhere near that point.

Your book is very poignant when you write about your father's death. He had chosen hospice care at home, but at one point, your mother, a doctor, called an ambulance when he became unresponsive.

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We weren't reacting as doctors, we were reacting as families, and family members react differently. My father would take me aside and say, 'Make sure I am not suffering. Do not let them take away my pain medication.' And my mother didn't want them to give him the pain medication because she could see that sometimes it made him slower to breathe. In a way I am glad my mother called the ambulance. My father spent a day in the hospital and they found he had a pneumonia added to all his other problems, but he made it clear he didn't want any further treatment and he wanted to get the hell out of the hospital. It gave my sister and me time to get there – I was in Boston and she was in New York – and spend a last few days with him. It was a really important time. We were lucky.

Near the end of the book, you make an impassioned plea for better palliative and hospice care and you say that assisted living is harder than assisted death. Can you explain?

The goal of many dying-with-dignity movements is to have a good death and I think that is the wrong goal. The goal is to have as good a life as possible all the way to the end. There are some people who have unbearable suffering that can't be relieved with the measures that we have and it would be heartless not to be able to offer a prescription to end that suffering, but for large numbers of people the failure is that we have not relieved that suffering. In Washington State, Oregon and Vermont, where assisted dying is allowed, they have strengthened the hospice and palliative-care movements by working on the idea that you want to provide assistance while people are living, although believing in the possibility of assisting a death.

What kind of death do you want?

My wife says that even if her brain goes and she looks happy, she still wants to live. From my point of view, if my brain goes, then let me go now. I also know we can change over time so my wife and I will continue to have this conversation.

This interview has been condensed and edited.

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About the Author
Feature writer

Sandra Martin is a Globe columnist and the author of the award-winning book, A Good Death: Making the Most of Our Final Choices. A long-time obituary writer for The Globe, she has written the obituaries of hundreds of significant Canadians, including Pierre Berton, Jackie Burroughs, Ed Mirvish, June Callwood, Arthur Erickson, and Ken Thomson. More

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