Being Mortal

Being Mortal: Medicine and What Matters in the End by Atul Gawande
My rating: 5 of 5 stars

I highly recommend this book to everyone who is mortal or knows some one who is. As I read the first few chapters, where Gawande catalogs what happens to us as we age and recounts some less than optimal situations that the elderly can sometimes end up in, it reinforced my dread of getting old or having to watch my parents get old. But as the book progressed, Gawande gives some encouraging alternatives. The later chapters involve terminally ill patients and how to help determine when and how to have medical intervention, and when to perhaps stop aggressive medical alternatives in favor of a better quality of life with palliative care. The questions he presents for helping the terminally ill can be modified to help all of us determine just what we are expecting and want from any medical treatment. The psychology he shared was interesting and thought provoking. By the end, I felt like there was definitely hope for a good end of life scenario, whether of old age or terminal illness. Perhaps the only thing I could ask for is some alternatives for those with some sort of dementia, a subject he didn't elaborate on.


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

old age itself has changed.  In the past, surviving into old age was uncommon, and those who did survive served a special purpose as guardians of tradition, knowledge, and history.

age no longer has the value of rarity.

As for the exclusive hold that elders once had on knowledge and wisdom, that, too, has eroded, thanks to technologies of communication

Global economic development has changed opportunities for the young dramatically.  The prosperity of whole countries depends on their willingness to escape the shackles of family expectation and follow their own path--to seek out jobs wherever they might be, do whatever work they want, marry whom they desire.

Given the opportunity, both parents and children saw separation as a form of freedom.

Modernization did not demote the elderly.  It demoted the family.

The veneration of elders may be gone, but not because it has been replaced by veneration of youth.  It's been replaced by veneration of the independent self.

We're always trotting out some story of a ninety-seven-year-old who runs marathons, as if such cases were not 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.

we've undergone a biological transformation of the course of our lives and also a cultural transformation of how we think about that course.

The single most serious threat she faces was not the lung nodule or the back pain.  It was falling.

The three primary risk factors for falling are poor balance, taking more than four prescription medications, and muscle weakness.

The job of any doctor...is to support quality of life, by which he meant two things: as much freedom for the ravages of disease as possible and the retention of enough function for active engagement in the world.

the patients who had seen a geriatrics team were a quarter less likely to become disabled and half as likely to develop depression.  They were 40 percent less likely to require home health services.

What geriatricians do--bolster our resilience in old age, our capacity to weather what comes--is both difficult and unappealingly limited.

When the prevailing fantasy is that we can be ageless, the geriatrician's uncomfortable demand is that we accept that we are not.

he would direct geriatricians toward training all primary care doctors and nurses caring for the very old,

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 friends, their way of life.

most of us will spend a significant periods of our lives too reduced and debilitated to live independently.  We do not like to think about this eventuality.  As a result, most of us are unprepared for it.

Prosperity has enabled even the poor to expect nursing homes with square meals, professional health services, physical therapy, and bingo.  They've eased debility and old age for millions and made proper car and safety a norm to an extent that the inmates of poorhouses could not imagine.  Yet still, most consider modern old age homes frightening, desolate, even odious places to spend the last phase of one's life.  We need and desire something more.

With her home went her control.

They were never created to help people facing dependency in old age.  They were created to clear out hospital beds--which is why they were called "nursing" homes.

This has been the persistent pattern of how modern society has dealt with old age.  The systems we've devised were almost always designed to solve some other problem.

The things she missed most, she told me, were her friendships, privacy, and a purpose to her days.  Nursing homes have come a long way from the firetrap warehouses of neglect they used to be.  But it seems we've succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible.

In almost none does anyone 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 that life becomes possible.

Chapter 4 Assitance
The key word in her mind was home.  Home is the one place where your own priorities hold sway.  at home, you decide how you spend your time, how you share your space, and how to manage your possessions.  Away from home, you don't.  This loss of freedom is what people...dreaded.

here the care providers understood they were entering someone else's home, and that changed the power relations fundamentally.

They revealed that the residents had not in fact traded their health for freedom.  Their satisfaction with their lives increased, and at the the same time their health was maintained.  Their physical and cognitive functioning actually improved.  Incidence of major depression fell.  And the cost for those on government support was 20 percent lower than it would have been in a nursing home.

what makes life worth living when we are old and frail and unable to care for ourselves?
Maslow argued safety and survival remain our primary and foundational goals in life, not least wehn our options and capacities become limited.
Reality is more complex, though.  People readily demonstrate a willingness to sacrifice their safety and survival for the sake of something beyond themselves, such as family, country, or justice.  And this is regardless of age.

our driving motivations is life, instead of remaining constant, change hugely over time and in ways that don't quite fit Maslow's classic hierarchy.

Studies find that 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.

they found living to more emotionally satisfying and stable experience as time passed, even as old age narrowed the lives they led.

If we shift as we age toward appreciating everyday pleasures and relationships rather than toward achieving, having, and getting, and if we find this more fulfilling, then why do we take so long to do it?

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

we have no good metrics for a place's success in assisting people to live.

assisted living isn't really built for the sake of older people so much as for the sake of their children.

They almost never sell themselves as places that put a person's choices about how he or she want to live first and foremost.

"We want autonomy for ourselves and safety for those we love."

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.

A Better Life
Three Plagues of nursing home existence: boredom, loneliness, and helplessness.

it is possible to provide them with reasons to live, period.

Even residents with dementia so severe that they had lost the ability to grasp much of what was going on could experience a life with greather meaning and pleasure and satisfaction.

Royce wanted to understand why simply existing--why being merely housed and fed and safe and alive--seems empty and meaningless to us.  What more is it that we need in order to feel that life is worthwhile?  The answer, he believed, is that we all seek a cause beyond ourselves.

in ascribing value to the cause and seeing it as worth making sacrifices for, we give our lives maning.
we all require devotion to something more than ourselves for our lives to be endurable.

Medical professionals concentrate on repair of health, not sustenance of the soul.

units with fewer than twenty people there tends to be less anxiety and depression, more socializing and friendship, and increased sense of safety, and more interaction with staff--even in cases when residents have developed dementia.

All we ask is to be allowed to remain the writers of our own story.

Letting Go
as people's capacities wane, whether through age or ill health, making their lives better often requires curbing our purely medical imperatives--resisting the urge to fiddle and fix and contotrol.

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.

in ordinary medicine, the goal is to extend life.  We'll sacrifice the quality of your existence now--by performing surgery, providing chemotherapy, putting you in intensive care--for the chance of gaining time later.

Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now--

our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sturures in our flesh.  The fact that we may be shortening or worsening the time we have left hardly seems to register.

rarely is there nothing more that doctors can do.

we make no choice at all.  We fall back on the default, and the default is: Do Something.

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.

those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives--and they lived 25 percent longer.  In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.  If end-of-life discussions were an experimental drug, the FDA would approve it.

you live longer only when you stop trying to live longer.

we pay doctors to give chemotherapy and to do surgery but not to take the time required to sort out when to do so is unwise.

still unresolved argument about what the function of medicine really is--what, in other words, we should and should not be paying doctors to do.

Our responsibility, in medicine, is to deal with human beings as they are.  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--

We want information and control, but we also want guidance.

Courage
Courage is strength in the face of knowledge of what is to be feared or hoped.  Wisdom is prudent strength.

At least two kinds of courage are required in aging and sickness.  The first is courage to contront the reality of mortality--the courage to seek out the truth of what is to be feared and what is to be hoped.
But even more daunting is the second kind of courage--the courage to act on the truth we find.

one has to decide whether one's fears or one's hopes are what should matter most.

People seem to have two different selves--an experiencing self who endures every moment equally and a remembering self who gives almost ll the weight of judgement afterward to two single pointes in time, the worst moment and the last one.

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?