Atul Gawande：‘Being Mortal: Medicine and What Matters in the End’

My interest in chronic condition care, including cancer care, leads me into the topics of aging, dying, dealth, and spiritual aspects of care, as well as the book “Being Mortal: Medicine and What Matters in the End” by Atul Gawande. The book is an easy read, full of personal stories, and revealing with the stories told. It helped answer a few of questions in my mind, and it had been hard for me to put it down since I picked it up until I finished it.

The author, Atul Gawande, is also a doctor. It starts with his personal experience as an intern in surgical practice who encountered patients forced to confront the realities of decline and mortality and yet found he was not ready to help them. As medical students, they spent their time studying inner processes of the body, mechanisms of its pathologies, and technologies to treat them, but did not receive proper training of how to deal with dying and death, a natural and integral part of life (“Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things”). He then reflects on the healthcare system today - how much attention is on treatment options to fix things, even for those not fixable, and how little is on admitting and coping with the truth of failing (“Leonid Gavrilov, a researcher at the University of Chicago, argues that human beings fail the way all complex systems fail: randomly and gradually…We wear down until we can’t wear down anymore.”). While scientific advancement has helped people live longer, and fundamentally changed the course of human life, it also turned aging and dying into a medical experience (“As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did.”), which, based on his own experiences, is not working well: “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.” So this book is about the modern experience of mortality, how we got here, why it does not work and how we shall deal with it.

He compared the traditional and the new modern systems of aging, with the story of his own grandfather who lived in an India village within a multi-generational system until death at 110 years old, and the story of his grandmother-in-law who enjoyed independent living for long and then had to move into a nursing home when it was no longer considered safe for her to live by herself. While the industrialization/globalization has made the traditional way of aging more and more infeasible, the new modern system for aging does not seem to work well either. The nursing home is obvioulsy not the place where people would like to spend the last chapter of their lives. With a few stories, the author makes it clear what the issues are with the nursing home model. Compared to one’s home where they feel belonged and remain in charge of their lives, nursing homes are often too regulated and institutionalized where residents are treated more as patients than people - “Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight—important medical goals, to be sure, but they are means, not ends…And having a place that genuinely feels like your home can seem as essential to a person as water to a fish.” One thing is obvious, even when people become dependent, they would still like to have autonomy and make choices, rather than “yielding all control over our lives.” Moreover, these places often feel deprived of life, where many things are not allowed for the sake of safety or for their children’s peace of mind, so it makes “a life designed to be safe but empty of anything they care about.”

He then shares a few recent new models, such as assisted living, designed to give the aged freedom and autonomy no matter how physically limited they are. Assisted living focuses on assist people to do when needed rather than doing things for them. However, this could be more difficult:“She (Keren Wilson, who came up with the idea of assisted living) gave the example of helping a person dress. Ideally, you let people do what they can themselves, thus maintaining their capabilities and sense of independence. But, she said, ‘Dressing somebody is easier than letting them dress themselves. It takes less time. It’s less aggravation.’ So unless supporting people’s capabilities is made a priority, the staff ends up dressing people like they’re rag dolls. Gradually, that’s how everything begins to go. The tasks come to matter more than the people.’” Assisted living gained some successes, however, it also led to many places only with the name of assisted living but without the actual philosophy of assisted living. Another experiment is Bill Thomas’s: by introducing plants, pets and birds into nursing home, it enlives the space and even gives residents some purpose of living. This experiment was a great success, which gives much hope to see what a new alternative model of elder care could be in modern time: “As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world—to make choices and sustain connections to others according to their own priorities. In modern society, we have come to assume that debility and dependence rule out such autonomy. What I learned from Lou—and from Ruth Barrett, Anne Braveman, Rita Kahn, and lots of others—was that it is very much possible.”

Going back to the issues of today’s healthcare system, it seems both patients and doctors tend to fight to fix the problem until the last minute – neither know when to stop and when to let go, which does not only raise the cost but also worsen people’s lives. What shall we do then? Based on a few experiments and cases, the answer is as simple as such: to get medical people and patients to discuss end-of-life wishes before the moment of crisis and fear. Such discussion gives doctors clear instructions to follow when situations arise. Such conversation is not an easy task, and it takes a process to really achieve understanding and requires skills no less than performing an operation. “There is no single way to take people with terminal illness through the process, but there are some rules, according to Block. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them their best chance of achieving it. This process requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.” The process of transition has begun: “We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm” said Gawande. However, it takes a social learning curve to establish this new norm. The author reviewed the different models of patient-provider relationships, drawing on Ezekiel and Linda Emanuel’s work. The oldest, most traditional kind is paternalistic, where the medical authorities ensure patients receive what they believe best for them. The second type is called “informative”, where providers give facts and figures, and it is up to patients to decide what they want. The last type is what Ezekiel and Linda Emanuel called as “interpretative”, which gives patients information, control but also guidance, and this is what the conversation and relationship should be like between providers and patients.

With the book, here are some conclusions: “_ that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives._”

I like that this book does not only reveal issues but also provide promising solutions. At least, it helped answer a few questions I had in my mind. It helps me understand why people do not want to spend their lives in nursing home, and why some call it as “golden jail”; it also helps understand why something like a “mental wellbeing” center which looks more like a coffee lobby and nothing like a hospital is so valuable in a cancer center; I understand now what it means when patients said that what they need is not only more information, but also need to know that “you are on our sides”; it is also clear now why some would like to bring their own pillows, duvet, sheet and photos to the hospital. The sense of control, the feeling of home, the connection with things that are meaningful to them rather than separation from them, and feeling supported are all essential for the reason of living, even when our physical capabilities are declining. It again illustrates how conversation is important. We know that conversations play important roles in leadership, in relationships, in therapy, in research and more. Here again suggests the right conversation makes a huge difference in one’s end-of-life experiences. In the end, it is also about what is meaningful life, or what life is worth living. “All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties.” This to me resonates well with existentialism.