- Author: Atul Gawande
- Date Started:
- Date Finished:
- 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 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 The veneration of elders has not been replaced by the veneration of youth, but by the veneration of independent self.
- 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 body finally crumbles while medicine performs maintenance measures and patch jobs.
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.
A doctor's job is to support quality 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.
- Dependence
It's not death we fear, but what happens before - losing our hearing, our memory, our best friends and our way of life. #death
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.
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.
They are "total institutions," or places largely cut off from wider society.
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.
They prioritize medical goals like avoiding bedsores and maintaining residents' weight, but those are means not ends.
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."
- 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.
Assisted living is now regarded as something of an intermediate station between independent living and life in a nursing home.
Perpetuating conditions that treat the elderly like preschool children.
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 deomnstrate 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
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.
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 replaces 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.
- A Better Life
The three plagues of nusring 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.
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.
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.
- Letting Go
As people's capacities wane, whether through age or ill health, making their lives better often requires curbing our purely medical imperatives.
Spending on a disease like cances has a U-shaped curve: high initial costs, tapering if all goes well, and then rising at tge end if it proves fatal.
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.
[[death]] is certain, but the timing isn't. So we struggle with this uncertainty -- with how and when to accept the battle is lost.
Doctors worry far more about being overly pessimistic than they do about being overly optimistic.
Really?
A problem is that we have built our medical system and culture around the long tail of possibility for the terminally ill.
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.
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.
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.
- Hard Conversations
Countries go through three stages of medical development:
When a country is in extreme poverty, most deaths occur in the home because people lack access to professional treatment.
When the economy develops and people reach higher income levels, medical capabilities become more widely available, and people often die in the hospital.
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 homes rise again.
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, the 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.
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 the only mistake they seem to fear is doing too little.
- 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 evaluation options, we should ask:
What are your biggest fears and concerns?
What goals are most important to you?
What tradeoffs 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 that after painful experiences, we weight two points most: the worst moment and the last one. [[Peak - Anders Ericsson and Robert Pool]]
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 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.
Our ultimate goal is not a good [[death]], but a good life to the very end.
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 tradeoffs you are willing to make and not willing to make?
And what is the course of action that best serves this understanding?