book-notes

Being Mortal: Medicine and What Matters in the End

by Atul Gawande

1. The Independent Self

If you cannot use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk without assistance (the eight “Activities of Daily Living”) then you lack the capacity for basic physical independence.
If you cannot shop for yourself, prepare your own food, maintain your housekeeping, do your laundry, manage your medications, make phone calls, travel on your own, and handle your finances (the eight “Independent Activities of Daily Living”) then you cannot live safely on your own.
Old age and infirmity have gone from being a shared, multi-generational responsibility to a mostly private state, experienced alone or with the aid of doctors and institutions.
Surviving into old age was once uncommon, and those who did served a special purpose as guardians of tradition, knowledge, and history.
But old age is no longer rare, and technologies of communication – from writing to the Internet – have eroded the value of elders’ knowledge and wisdom.
For young people, the traditional family system has become less a source of security than a struggle for control – over property, finances, and basic decisions about how they could live.
As children have moved away from their parents, the elderly have not seemed especially sorry to see the children go.
Whenever the elderly have had the means, they’ve chosen what social scientists have called “intimacy at a distance.”
Modernization demoted the family, not the elderly. The veneration of elders has not been replaced by the veneration of youth, but by the veneration of independent self.

2. Things Fall Apart

For many chronic illnesses, treatments now stretch the descent of one’s health until it looks less like a cliff and more like a hilly road down a mountain.
But the majority of us live a full life span and die of old age, where one’s bodily finally crumbles while medicine performs maintenance measures and patch jobs.
To maintain the same volume of blood through narrow and stiffened vessels, the blood has to generate increased pressure, leading to half of us develop hypertension by age sixty-five.
At age thirty, the brain is a 3-point organ that barely fits inside the skull; by our seventies, gray-matter loss leaves almost an inch of spare room.
By age eight-five, working memory and judgment are so impaired that 40 percent of us have textbook dementia.
Our life-spans are not programmed into us; only three percent of how long you’ll live is explained by your parents longevity.
Human beings fail randomly and gradually, functioning reliably until a critical component fails, and the whole thing dies in an instant.
As defects in a complex system increase, the time comes when just one more defect can impair the whole, resulting in frailty.
Today we have as many fifty year-olds as five year-olds; in thirty years, there will be as many people over eighty as there are under five.
While the elderly population grows rapidly, the number of certified geriatricians has actually fallen by 25 percent between 1996 and 2010.
Each year, about 350,000 Americans fall and break a hip. Of those, 40 percent end up in a nursing home, and 20 percent never walk again.
A doctor’s job is to support qualify of life in two ways: Freedom from the ravages of disease, and retention of enough function for active engagement in the world.
The body’s decline creeps like a vine: Day to day changes are imperceptible, then something happens that makes clear that things are no longer the same.
Until our last backup system fails, medical care influences whether the path of decay is steep or more gradual, allowing longer preservation of abilities that matter most.
When the prevailing fantasy is that we can be ageless, the geriatrician demands that we accept that we are not.
In a year, fewer than 300 doctors will complete geriatrics training – not enough to replace those going into retirement, or to meet demand.
The risk of a fatal car crash with a driver who’s 85 or older is more than three times higher than it is with a teenage driver.

3. Dependence

It’s not death we fear, but what happens before – losing our hearing, our memory, our best friends, and our way of life.
Even if we live well, eventually our losses accumulate to a point where life’s daily requirements become more than we can physically and mentally manage on our own.
In 1935, with the passage of Social Security, the creation of pensions secured the future of widows, and retirement was no longer exclusive to the rich but a mass phenomenon.
The most common complaint of nursing home residents is that “It just isn’t home.”
In 1946 the Hill-Burton Act provided massive amounts of funding for the construction of nine thousand medical facilities over two decades.
As medicine became more powerful, the modern hospital emerged as a place where you could go saying “Cure me.”
Nursing homes were not created to help people face dependency in old age, but instead clear out hospital beds – hence their name.
Nursing homes are where half of us will spend a year or more of our lives, but they were never really made for us.
Nursing homes – like military training camps, orphanages, and mental hospitals – are “total institutions,” or places largely cut off from wider society.
Nursing home prioritize medical goals like avoiding bedsores and maintaining residents’ weight, but those are means and not ends.
Nursing home staff like residents who are “fighters” and “show dignity and self-esteem” until they interfere with the staff’s priorities for them. Then they are termed “feisty.”
Society creates institutions that address societal goals like freeing hospital beds and taking burdens off families’ hands.
These institutions do not address the goal that matters most to those inside: How to make a life worth living when we’re weak and frail and can’t fend for ourselves anymore.

4. Assistance

Your chances of avoiding the nursing home are proportional to the number of children you have.
Having at least one daughter also seems crucial to the amount of help you will receive.
The burdens for today’s caregiver have increase from that of a century ago.
Assisted living is now regarded as something of an intermediate station between independent living and life in a nursing home.
Home is the one way where your priorities hold sway: You decide how to spend your time, how to share your space, and how to manage your possessions.
When care providers understand they are entering someone else’s home, that changes the power relations fundamentally.
Regardless of age, people readily demonstrate a willingness to sacrifice their safety and survival for something beyond themselves, such as family, country, or justice.
As people grow older:
- they interact with fewer people and concentrate more on spending time with family and established friends
- they focus on being rather than doing and on the present more than the future
Studies show that we find living to be more emotionally satisfying and stable as time passes, even as old age narrows our lives.
How we seek to spend our time may depend on how much time we perceive ourselves to have.
When horizons are measured in decades, we desire everything at the top of Maslow’s pyramid – achievement, creativity, and self-actualization.
When the future ahead is finite and uncertain, our focus shifts to here and now, to everyday pleasures and those closest to you.
Assisted living most often is a mere layover from independent living to a nursing home, perpetuating conditions that treat the elderly like preschool children.
A study in 2003 found that only 11 percent of assisted living facilities offered privacy and sufficient services to allow frail people to remain in residence.
Assisted living puts completing tasks before preserving independence for the elderly, e.g. dressing people instead of letting them dress themselves.
While we have very precise ratings for health and safety, we have no good metrics for a place’s success in assisting people to live.
Assisted living isn’t built for the sake of older people, but for their children. The children usually decide where the elderly live, and you can see that in the way that places sell themselves.
We have replaced the extended family that allows the elderly to make their own choices with a controlled and supervised institutional existence.
These institutions are a medically designed answer to unfixable problems, a life designed to be safe but empty of anything the elderly care about.

5. A Better Life

The Three Plagues of nursing home existence are boredom, loneliness, and helplessness.
Culture is the sum of shared habits and expectations.
In nursing homes, differences in death rates are correlated to the fundamental human need for a reason to live.
Pets, plants, and living things replace boredom with spontaneity, loneliness with companionship, and helplessness with the chance to take care of another being.
We seek a cause beyond ourselves. By ascribing value to the cause and seeing it as worth making sacrifices for, we give our lives meaning.
Death is not meaningless if you see yourself as part of something greater: a family, a community, a society. Or else mortality is only a horror.
Above Maslow’s level of self-actualization is an existence in people of transcendent desire to see and help others achieve their potential.
Medicine and its institutions have an incorrect view on what makes life significant, concentrating on repair of health instead of sustenance of the soul.
We put our fates in the hands of people more valued for their technical prowess than for their understanding of human needs.
Nursing homes with fewer than twenty people per unit have less anxiety and depression, more socializing and friendship, an increased sense of safety, and more interaction with staff.
Making lives meaningful in old age is new, and therefore requires more imagination and invention than making them merely safe does.
The very marrow of being human is to retain the freedom to be the authors of our lives – regardless of the limits and travails we face.
We want to retain the freedom to shape our lives in ways consistent with our character and loyalties.
The battle of being mortal is to avoid becoming so diminished, dissipated, or subjugated that who you are becomes disconnected from who you were or who you want to be.
The terror of sickness and old age is not merely the terror of losses one is forced to endure but also the terror of the isolation.

6. Letting Go

As people’s capacities wane, whether through age or ill health, making their lives better often requires curbing our purely medical imperatives.
More than 15 percent of lung cancers occur in non-smokers.
The soaring cost of health care has become the greatest threat to the long-term solvency of most advanced nations.
In the United States, 25 percent of all Medicare spending is for the 5 percent who are in their final year of life, and most of that money goes toward their last couple months that is of little apparent benefit.
Spending on a disease like cancer has a U-shaped curve: High initial costs, tapering if all goes well, and then rising at the end if it proves fatal.
Terminally ill cancer patients treated aggressively in intensive care had substantially worse quality of life in their last week than those who received no such interventions.
The the same study found six months after death, their caregivers were three times as likely to suffer major depression.
Top concerns of people with serious illness 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.
Before modern medicine, the time between recognizing that you had a life-threatening ailment and dying was usually days or weeks.
People believed death should be accepted stoically, without fear or self-pity or hope for anything more than the forgiveness of God.
Death is certain, but the timing isn’t. So we struggle with this uncertainty – with how, and when, to accept the battle is lost.
The goal of ordinary medicine is to extend life. For hospice, it’s to help people with a fatal illness have the fullest possible lives right now.
In one study of terminally ill patients, 63 percent of doctors overestimated their patients survival time, while just 17 percent underestimated it.
Doctors worry far more about being overly pessimistic than they do about being overly optimistic.
A problem is that we have built our medical system and culture around the long tail of possibility for the terminally ill.
Raising prices of treatments won’t work because people who opt for them aren’t thinking of a few added months, but a few years.
The only seeming alternative to a market solution is outright rationing – or death panels, as some have charged.
Insurers raising questions about doctors’ and patients’ treatment decisions in terminal illness is now considered political suicide.
One study found two thirds of terminal cancer patients having had no discussion with their doctors about goals for end-of-life care, despite being on average four months from death.
People who discuss end-of-life preferences with their doctor are more likely to die in peace and in control of their situation, and to spare their family anguish.
Studies have found that medicine for the terminally ill can inflict more harm than good – so you only live longer when you stop trying to live longer.
Important end-of-life questions:
- Do you want to be resuscitated if your heart stops?
- Do you want aggressive treatments such as intubation and mechanical ventilation?
- Do you want antibiotics?
- Do you want tube or intravenous feeding if you can’t eat on your own?
It’s important to define what you want or don’t want before you or your relatives find yourselves in the throes of crisis and fear.
For the terminally ill, doctors should understand what’s important to the patient under the circumstances, and then provide information and advice on the best-fitting approach.
Two-thirds of patients are willing to undergo therapies they don’t want if that’s what their loved ones want.
Most patients and their families will never stop all-out treatment: They are riven by doubt and fear and desperation, or are deluded by a fantasy of what medical science can achieve.

7. Hard Conversations

As incomes rise, doctors become all to ready to offer false hopes, leading families to empty their bank accounts for futile treatments.
Countries go through three stages of medical development:
1. When a country is in extreme poverty, most deaths occur in the home because people lack access to professional treatment.
2. When the economy develops and people reach higher income levels, medical capabilities become more widely available, and people often die in the hospital.
3. When a country climbs to its highest income levels, people have the means to be concerned about the quality of their lives, even in sickness, and deaths at home rise again.
Patients tend to be optimists, even if that makes them prefer doctors who are more likely to be wrong.
The oldest clinical relationship is paternalistic, where doctors are medical authorities who ensure patients receive what they believe is best.
The paternalistic relationship is often denounced but remains common with vulnerable patients like the frail, the poor, and the elderly.
In an informative relationship, a doctor provides facts and figures, and the rest is up to the patient.
The informative relationship causes doctors to know less and less about their patients, but more and more about their science.
An interpretive relationship balances information and control with guidance, where the doctor helps patients decide what they want.
It is necessary and right for a doctor to deliberate with people on their larger goals, and challenge them to re-think ill-considered priorities and beliefs.
An informative relationship falls short because patients want the meaning behind the information, not just the facts.
A doctor should tell the patient what the information means to him or herself.
To talk about bad news with people: Ask what they want answered, tell them the answer, and then ask what they understood.
The closing phase of modern life is often a mounting series of crises from which medicine offers only brief and temporary rescue.
Autonomy means not being able to control life’s circumstances, but getting to control what you do with them.
Life is choices, and they are relentless. No sooner have you made one choice than another is upon you.
Clinicians always feel the pressure to do more, because they only mistake they seem to fear is doing too little.

8. Courage

Courage is the strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength.
Two kinds of courage are required in aging and sickness: The courage to confront the reality of mortality, and then to act on the truth you find.
In the end, we must decide whether one’s fears or one’s hopes are what should matter most.
When approaching the end and evaluating options, we should ask:
- What are your biggest fears and concerns?
- What goals are most important to you?
- What trade-offs are you willing to make, and what ones are you not?
We evaluate experiences like suffering in two ways: How we apprehend them in the moment, and how we look at them afterward.
The “Peak-End rule” says after painful experiences, we weigh two points most: The worst moment and the last one.
We have two selves: a “experiencing self” that endures every moment equally, and a “remembering self” that obeys the Peak-End rule.
When our time is limited and we are uncertain how to best serve our priorities, we must consider both of our selves.
As time goes on, we have narrower confines in which we have room to act and to shape our stories.
Our most cruel failure in treating the sick and aged is failing to recognize that beyond merely being safe and living longer, they want to shape their story.
With assisted suicide, the debate is about what mistakes we fear most: that of prolonging suffering versus that of shortening valued life.
Only a minority of people saved from suicide make a repeated attempt; the vast majority eventually report being glad to be alive.
Our ultimate goal is not a good death, but a good life to the very end.
Assisted living is far harder than assisted death, but its possibilities are far greater as well.
Technological society has forgotten the importance of the “dying role” to people nearing the end: They want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure those left behind will be okay.
Endings matter not just for the person, but perhaps even more for the ones left behind.

Epilogue

The job of doctors is not just to ensure health and survival, but to enable well-being.
Whenever serious sickness or injury strikes, the vital questions are always:
- What is your understanding of the situation and 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?