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Being Mortal – Atul Gawande

Being Mortal: Medicine and What Matters in the End

Being Mortal: Medicine and What Matters in the End

Published: 7/1/2015

Format: Paperback

ISBN: 978-1846685828

Introduction

“What tormented Ivan Ilyich most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and he only need keep quiet and undergo a treatment and then something very good would result” – Tolstoy

Ivan Ilyich was dying, but nobody would accept it. They seeked a cure, but there is no cure for old age or for terminal illnesses. When does the acceptance come?

“People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it.” – Atul Gawande

We live but we are unprepared for death.

1: The Independent Self

“Death, of course, if not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things.”

Regarding doctors: “Your competence gives you a secure sense of identity. For a clincian, therefore, nothing is more threatening to who you think you are than a patient with a problem you cannot solve”

“There’s no escaping from the tragedy of life, which is that we are all aging from the day we are born”

The Eight “Activities of Daily Living” (needed for basic physical independence):

  • Use the toilet
  • Eat
  • Dress
  • Bathe
  • Groom
  • Get out of bed
  • Get out of a chair
  • Walk

The Eight “Independent Activities of Daily Living” (needed to live safely alone):

  • Shop for yourself
  • Prepare food
  • Maintain housekeeping
  • Do laundry
  • Manage your medication
  • Make phone calls
  • Travel alone
  • Handle your finances

2: Things Fall Apart

People with incurable cancers can do remarkably well for a long time. The cancer can be managed for years. Until, one day, the consumes other parts of the body, like leaking into the brain or lungs. Death can often come as a surprise.

We can make it possible for people to make it home – weaker and more impaired though. They never return to their previous baseline of health. As illness progresses, a person becomes less able to handle minor issues, like infections or colds. The curve of life with illness becomes a curve of bumps and dips, with highs and lows, but never returning to the original baseline.

Old age is not a diagnosis, but in truth, no single disease leads to the end; the culprit is just the accumulated crumbling of one’s bodily systems while medicines carries out its maintenance measures and patch jobs. The curve of life for old age becomes a long, slow fade.

“We need help, often for long periods of time. We regard that as a weakness rather than the new normal and expected state of affairs. We’re always trotting out some story of a 97 y/o 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 apologise for”.

Research has found that loss of bone density may be an even better predictor of death from atherosclerotic disease than cholesterol levels. As we age, it’s as if the calcium seeps out of our skeletons and into our tissues.

To maintain the same volume of blood through our narrowed and stiffened blood vessels, the heart has to generate increased pressure. Therefore, most of us develop hypertension by 65. The heart becomes thick-walled from having to pump against the pressure, and less able to respond to the demands of exertion. The peak output of the heart therefore decreases steadily from 30.

Ad the heart muscles thickened,other muscles thin. Around 40, one begins to lose muscle mass and power. By 80, one has lost between 1/4 to 1/2 of one’s muscle weight.

At 30, the brain barely fits inside the skull. At 70, the gray-matter oss leaves almost an inch of spare room. Hence why older people are more prone to cerebral bleeding after a blow to the head – the brain actually rattles around inside. The frontal lobes shrink first, in general, which govern judgement and planning. The the hippocampus, which governs memory. Therefore, memory and the ability to gather/judge ideas (multi-task) peaks in midlife then gradually declines.

Simple systems generally don’t age, one component will fail and the entire system will fail (e.g. a windup toy where the spring breaks or rusts, then becomes unusable).

Complex systems, like power plants and humans, have backup systems, or multiple layers of redundancy. Power plants have backup generators and backup pumps, with secondary backup systems for the primary backup systems. The backup systems don’t work as well as the main systems, but they allow the machine to keep going even as damage accumulates. Humans grow more teeth, have 2 lungs, 2 kidneys

Inside skin cells, the mechanisms to clear out waste products slowly break down and the residue coalesces into a clot of gooey yellow pigment known as lipofuscin. These are the age spots we see in skin. When lipofuscin accumulates in sweat glands, they cannot function, which helps explain why we become so susceptible to het stroke and heat exhaustion in old age.

Is there a reproducible pathway to aging? No, we just fall apart.

3: Dependence

When people get old, we don’y look around and say “There’s a phase of people’s lives where they can’t really cope on their own, we ought to find a way to make it manageable”. Instead, we say “This looks like a medical problem. Let’s put these people in the hospital.” In almost mo situation does someone sit down with you and try to figure out what living a life really means to you under the circumstances, let alone help you make a home where life becomes possible.

This is a consequence of a society that faces the final phase of the human cycle by trying not to think about it.

4: Assistance

Shelley and her old age father, who’s now living with her and putting huge burden on her:

“He didn’t like the food she made for the rest of her family. He never complained. He just wouldn’t eat. So she had to start making separate meals for him”.

It’s funny how people act out when they don’t want to cause a fuss.

Regarding Maslow’s hierarchy of needs:

In young adulthood, people seek growth and self-fulfillment, as suggested by Maslow.

Growing up involves opening outwards and we search for new experiences, wider social connections, ways to put our stamp on the world.

We we reach later adulthood, our priorities shift. Most reduce the time and effort they spend seeking achievement and social networks. They narrow in.

Given choice, young people generally prefer meeting new people compared to spending time with someone close to them, like a sibling. Older people prefer the opposite. Older people focus on close friends and family over new experiences. They focus on being rather than doing and on the present rather than the future.

Generally, people get happier as they age. Anxiety and depression often fades away.

Like a fine wine, life improves with age.

Appreciating the simple things, being in the moment, enjoying relationships often becomes more prevalent as we age. The common view is that these lessons are hard to learn. Calm and wisdom comes with age.

However, Carstensen saw another way (Socioemotional selective theory): What if the change in needs and wants comes from perspective – your personal sense of how finite your time in this world is.

Really, how we spend our time may depend on how much time we perceive ourselves to have.

When we’re young and healthy, we believe we’ll live forever. When we’re older, we believe we don’ have much time. Our priorities change.

Decades might as well be infinity to human beings, and when we are young we want everything at the top of Maslows pyramid. As we age, our future is perceived as finite and uncertain – our focus shifts to the everyday pleasures and people closest to you. It’s perspective, not age, that matters most. As people get old and become ill, they want comfort and company.

Keren Wilson: Created assisted living before capitalism ruined it

“Our elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.”

5: A Better Life

“Every place has a deep-seated culture as to how things are done. Culture is the sum total of shared habits and expectations”.

1990s, Bill Thomas, MD: Created nursing home filled with animals (birds, cats, dogs). His theory demonstrated what living things provide. They replaced boredom with spontaneity. They replace loneliness with companionship, they replace helplessness with the ability to care for another living thing.

We all seek a cause beyond ourselves. That’s the key to life. The cause can be large (family, country, principle) or small (a building project, caring for a pet). The important thing is, we place value on the cause and see it as worth sacrificing for. This is what gives our lives meaning.

“Medical professionals concentrate on repair of health, not sustenance of the soul.” Yet, we have given doctors the power to decide how we should live our waning days. For 50 years, we have treated trials of sickness, aging and morality as medical concerns. It’s been an experiment of social engineering, putting our fate in the hands of people valued more for their technical prowess than for their understanding of human needs.

That experiment has failed. If safety and protection were all we sought in life, perhaps we could conclude differently. But because we seek a life of worth and purpose, and are routinely denied the conditions that might make this possible, there is no other way to see what modern society has done.

Dworkin, 1986: “The value of automony lies in the scheme of responsibility it creates: automnomy makes each of us responsible for shaping our own life according to some coherent and distinctive sense of character, conviction, and interest. It allows us to lead our own lives rather than being led along them, so that each of us can be, what he has made himself.”

Sickness and old age make the struggle hard enough. The professionals and institutions should not make it worse.

6: Letting Go

Spending one’s final days in ICU because of terminal illness is for most people a kind of failure. You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have to said good-bye or “It’s okay” or “I’m sorry” or “I love you”.

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 and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars.

Terminal cancer patients wouldn’t spend $50,000 for drugs or for treatment. But this argument ignores an important factor: the people who opt for these treatments aren’t thinking in terms of a few added months. They’re thinking years. They’re thinking they’re getting a lottery ticket’s chance that their disease might not even be a problem anymore.

Avoiding ICU in terminal patients is better in every sense

Case Study: People approx. 4 months from death from cancer spoke with their doctors about other options and opted for hospice. They suffered less, were physically more capacble, were better able to interact with others for a longer period. Also, 6 months after they died, their family members were less likely to suffer from major depression. The patients could die in peace.

When it comes to pallitive care:

  • Instead of “I’m sorry things turned out this way”, say “I wish things were different”
  • Don’t ask “what do you want when you are dying”, ask “If time becomes short, what is most important to you?”

People die only once, they have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come.

7: Hard Conversations

“He had that midwesterner’s habit of waiting a beat after people have spoken before speaking himself, in order to see if they are really done”.

This is what it means to have autonomy: You may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.

8: Courage

AT least two kinds of courage are required in aging and sickness.

  1. The courage to confront the reality of mortality – the courage to seek out the truth of what is to be feared and what is to be hoped. Such courage is difficult enough
  2. Even more challenging is the courage to act on the truth we find.

People seem to have two selves:

  • An experiencing self who endres every moment equally
  • A remembering self who gives almost all the weight of the judgement afterward to two points in the experience: The worst moment and the last one. The remembering self seems to stick to this even if the ending is an anomaly. Just a few minutes without pain at the end of the medical procedure dramatically reduced patient’s overall pain ratings, even after they’d experienced more than 30 min of high pain levels.
    • Take a sports team. If a team is winning throughout but loses in the last play, the entire game is ruined for the fans. The ending ruins it.

    People don’t view life as the average of all moments, they view it as a story, the highs and lows. A story has a sense of a whole, where the arc is determined by the significant moments, the ones where something happens. Our most cruel failure in how we treat the sick and the aged is the failure to recognise 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.

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