Being Mortal, by Atul Gawande

This summary was largely done for my own note-taking, sharing it just in case it adds more value to other people.

I have no affiliation whatsoever with anyone in this note. This is a summary largely taken for my own reference, and may contain errors :)

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Being Mortal

I would say that it depends on where the person is on the spectrum of being terminally ill. This book would be fine for one whose disease is terminal I would say that it depends on where the person is on the spectrum of being terminally ill.

https://www.goodreads.com/book/show/20696006-being-mortal

Why is it important: Great book for anyone who has lost someone close to them recently or has someone in their life with terminally declining health. Also a good read for people in their late twenties/early thirties, who has parents who are healthy now but have a chance of facing declining health in the next two decades

The books talks about the need for effective communication and setting expectation among patients, their families, and doctors.

Keywords

Mortality, Communication, Candor, Death

Summary

On dealing with terminally ill people

When you know someone is terminally ill or faces an operation with limited chances of success, ask them the following questions:

What is your understanding of the situation and its potential outcomes?

What are your fears and what are your hopes about what lies ahead?

What are the trade-offs you are willing to make and not willing to make?

What is the course of action that best serves this understanding?

How do they want to spend their time if their health worsens?

Who do they want to make decisions if they can’t?

This will help set expectations for them and their families, and will help them feel more in control of their circumstances and at peace with them.

On the role of assisted living facilities

It can often be difficult to care for the elderly at home, specially when all caregivers are working full-time and cannot reasonably provide adequate care with the emotional and time resources that they have. In such scenarios, assisted living can become an increasingly useful option if it is done right.

In good assisted living facilities, tenants have a freedom to (generally) do what they want with their time.

Concern about safety and lawsuits increasingly limit what people could have in their assisted living apartments, mandate what activities they are expected to participate in, and define ever more stringent move-out conditions that would trigger “discharge” to a nursing facility. The language of medicine, with its priorities of safety and survival, is taking over. Even children are permitted to take more risks than the elderly. They at least get to have swings and jungle gyms.

On finding meaning towards the end of life

It is not death that the very old tell me they fear. It is what happens short of death—losing their hearing, their memory, their best friends, their way of life. All we ask is to be allowed to remain the writers of our own story. We want to retain the freedom to shape our lives in ways consistent with our character and loyalties

The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be.

People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.

Highlights

Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?

Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.

It is not death that the very old tell me they fear. It is what happens short of death—losing their hearing, their memory, their best friends, their way of life. As Felix put it to me, “Old age is a continuous series of losses.” Philip Roth put it more bitterly in his novel Everyman: “Old age is not a battle. Old age is a massacre.“

The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror. But if you do, it is not. Loyalty, said Royce, “solves the paradox of our ordinary existence by showing us outside of ourselves the cause which is to be served, and inside of ourselves the will which delights to do this service, and which is not thwarted but enriched and expressed in such service.” In more recent times, psychologists have used the term “transcendence” for a version of this idea. Above the level of self-actualization in Maslow’s hierarchy of needs, they suggest the existence in people of a transcendent desire to see and help other beings achieve their potential.

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 is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be.

When horizons are measured in decades, which might as well be infinity to human beings, you most desire all that stuff at the top of Maslow’s pyramid—achievement, creativity, and other attributes of “self-actualization.” But as your horizons contract—when you see the future ahead of you as finite and uncertain—your focus shifts to the here and now, to everyday pleasures and the people closest to you.

We're always trotting out some story of a ninety-seven-year-old who runs marathons, as if such cases were not miracles of biological luck but reasonable expectations for all. Then, when our bodies fail to live up to this fantasy, we feel as if we somehow have something to apologize for.

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.

Two-thirds of the terminal cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did have discussions were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive care unit. Most of them enrolled in hospice. They suffered less, were physically more capable, and were better able, for a longer period, to interact with others. In addition, six months after these patients died, their family members were markedly less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.

Assisted living most often became a mere layover on the way from independent living to a nursing home. It became part of the now widespread idea of a “continuum of care,” which sounds perfectly nice and logical but manages to perpetuate conditions that treat the elderly like preschool children. Concern about safety and lawsuits increasingly limited what people could have in their assisted living apartments, mandated what activities they were expected to participate in, and defined ever more stringent move-out conditions that would trigger “discharge” to a nursing facility. The language of medicine, with its priorities of safety and survival, was taking over, again. Wilson pointed out angrily that even children are permitted to take more risks than the elderly. They at least get to have swings and jungle gyms.