“The crisis is not often what you think. It’s not necessarily the stroke. The most common crisis moment is the fall. They might have broken their hip, or they may have crashed a car,” said Atul Gawande, the US-based surgeon, writer and public health researcher, during a session on his book Being Mortal at the Jaipur Literature Festival in Jaipur on Sunday.
This writer could relate to what Gawande was talking about. A similar crisis had struck my family a few years ago, when my grandmother slipped on the bathroom floor of her home back in the village, and broke her hip. Over 95 years old, she now lies in a quasi-vegetative state, unable to sit up and surviving on a diet of medicines that often leave her semi-conscious. Many families are struggling to cope with similar crises and given that Gawande has written about the infantilisation of the old and how we prefer longevity over a worthy life, I was keen to hear his views on the subject.
“The underlying story of India is that the extended family is breaking up. Economic progress has given the young the freedom to live where they want. It has meant that people are leaving their villages and their parents behind. We don’t have a plan about what is supposed to happen,” says Gawande. “So you have these imperfect solutions. At the highest level you see assisted living and retirement communities. The next level is where people bring servants or maids into the home, if they can afford that. Then, there are pay-to-stay homes, which are very isolating and where people get very limited care.”
Gawande believes that people start to develop independence when they become wealthy. This has happened in the US, in China and Korea and has started happening in India. “If you have money and you have choices, the very last place most elderly want to live is in their child’s home. People end up choosing to live alone, longer than you think” he says adding that his cousins used to say that nursing homes would never catch on in India. However, Gawande says, nursing homes are now one of the fastest growing industries in the country.
The surgeon and writer, who has been visiting India regularly during the past four years for his research on public health, has closely observed the country’s health care system in both the villages and the cities.
According to him, people in India prefer modern medicine but desire an attitude that is seen in traditional systems. They want their allopathic doctors to speak to them, probably like how ayurvedic doctors or traditional healers did.
Gawande, who spoke to over 200 old and terminally ill patients and their family members for Being Mortal believes palliative care is a better alternative as it allows people to choose how they want to live even as their lives wind down. This is very different from the current attitude that medicalises mortality and has turned it into another problem to treat. In process, Gawande believes, we’ve lost sight of the idea that well being is bigger than just survival.
Faced with this situation, the underlying futility of such treatments, and the added financial burden, should people advocate euthanasia? “I think not. I know there is movement for that. For people who have unbearable suffering, pain for instance, if you don’t give them pain medicine and ask them would you want a way to commit suicide they’ll say yes,” he said adding that it is so difficult to get access to narcotic pain medicine in India that people with serious illnesses are in terrible pain. “When my father was going through that, we would ask him, ‘What are you willing to sacrifice and what are you not for the sake of a good day?’,” Gawande said. “There were times when he was willing to endure pain so that he could be at the family dinner table and spend social time with the family.”
Always in search of essential questions, Gawande stated that his book was not about a good death. “It’s about what a good life is when you are mortal; what it means to have a good life, all the way to the very end,” he says.
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