Pain and death are not great conversation starters, but when you meet the reputed surgeon, author and professor, Atul Gawande, conversation about issues like pain, death, ageing and medicalizing mortality, is natural. Author of three best-selling books, Complications, Better, and The Checklist Manifesto, it is his latest book Being Mortal: Medicine and what matters in the end that explores how the medical profession needs to rethink its approach to the old and terminally ill, helping people to have a good life to the very end. The 50-year-old Gawande spoke to Mint at the sidelines of the Jaipur Literature Festival. Edited excerpts:
You have recommended and helped implement systems to make surgery safer in hospitals by following a prescribed checklist. How can India’s creaking health system adopt this process?
We are actually involved in a large project in Uttar Pradesh now. My last book (The Checklist Manifesto) was about the idea of applying a checklist in surgery to save lives and we deliberately tested it not only in the US but here in India in Delhi and in rural Tanzania, the Philippines and in England, taking a pilot checklist approach with a surgeon and team go through 19 key tests in less than 2 minutes and this approach has reduced deaths 47% across eight cities and is deploying in India now. We have now taken this same approach to childbirth where mothers lose their babies within a week of being born. So we are testing a approach where it’s a checklist of 30 most lifesaving things that should be done, first six of them on admission, another seven when the mother starts to push, another 7-8 when the baby is out and the last ones when they are discharged. This test is underway in 120 birth centres across Uttar Pradesh.
My latest book Being Mortal where I talk about how we die, it seems it would be very distant from India—my cousins would say there are no nursing homes in India but it is the fastest growing industry in healthcare. As people move from rural to urban life, young people are getting the freedom to live where they want, work where they want live, marry whom they want but there is no plans for parents left behind. The parents are healthy for a while, then as they get older they become frail, begin having problems and then we say the doctor will take care of them but there is enormous tension over who will be there and how do we navigate these pathways and that story is a global story.
My story is rooted in three places where I feel I have roots: in Boston, Massachusetts where I practice, in rural Ohio where I grew up in middle America and then in rural Maharashtra were my father grew up and we have been going back and forth to his village and I know family and have been seeing what people experience when they suffer.
In your book Being Mortal you discuss the mindset change needed for doctors to help terminally ill patients spend their last days doing what brings them closure instead of merely prolonging their life. Doesn’t this make a doctors job much harder?
Of course we want to live a longer life. The concept is not either or, it’s that well-being is bigger than just survival. We don’t want to live just to be pulsing bags of meat. We live for a reason and asking your patient what those reasons are is important and they are different. One patient I write about said as long as I can watch football on TV and eat chocolate ice cream that would be good enough a life to keep me alive for. My father, on the other hand, said that’s not good enough for him. For him it was sitting at the family dinner table with family or friends, laughing and having a conversation and if he could have that it was an essential element of being alive.
I wrote the book Being Mortal because I found it hard to know what it meant to be competent, what it meant to be good as a doctor for people I could not fix. I think many times physicians become frustrated when people come to see them with problems that are terminal or may be because of old age and they say well I can’t fix that. But when you ask them instead what your fears are, what are your goals for the future, what are you willing to sacrifice, what are you not willing to sacrifice, what’s the minimum quality of life you would like—then you can bring medical capabilities to bear around helping people live, having a good day even when you can’t fix what they have, and that’s often missing. I’ve certainly seen that in India, where even basic pain control isn’t available.
Through my books, I have been lucky to reach both doctors and general people. Pressure from the general public to demand what quality of life means to them is a worthy thing to demand from the healthcare system. I think its part of training as well as part of policy. India’s financing of healthcare has been very limited and the ability to make people feel that they can afford to have basic care for pain, for suffering as well as for survival is important as India grows richer.
What are your views on euthanasia. It is a highly debated issue all over, especially in India at this point?
It’s disturbing to me. Our ultimate goal, after all, is not a good death but a good life all the way to the very end and I can see circumstances where there is such unavoidable suffering that, euthanasia is a point of discussion. But in India what I see is that there is huge amount of avoidable suffering where we are not providing for people who face the last phase of their life—just at a very basic level making sure that narcotic medication for people suffering from severe cancer pain or broken bones from broken hips and things like that. I don’t think we treat pain and take it seriously (in India).
I think the debate about assisted death is about less than 1% of the population but it’s 100% of the population who are not receiving significant support for the experiences they face at the end of their lives. The likelihood that you have pain, the likelihood that you have nausea, shortness of breath or periods of confusion have increased even in America in the last 15-20 years as we have medicalized mortality and we have to be willing to recognize it’s not just whether the disease is confined but its also the quality of life that people have, that we have to make sure we are serving.
You are juggling three roles of being a writer, professor and being a doctor? Which do you enjoy the most?
I feel like the most purposeful and meaningful thing that I will look back on is probably my writing but it’s rooted in getting to be part of taking care of people and getting to see peoples’ lives from that vantage point.
And doing public health research at work where we try to solve problems on a societal scale. So in each case you find all the complexities, all the frustrations and each time you think you have figured out the world you go face to face with a policy problem or trying to solve a patient’s problem. I can’t really separate all of them, they all come together though in the writing.