The Forum

Notes on: 'Being Mortal' by Atul Gawande

'Hope is not a plan. But hope is our plan.'

By John Wilwol

I used to teach literature to 16- and 17-year-olds here in Washington, and I’d begin each term with the same question: Wouldn’t your time be better spent in a science classroom? The idea was to get the students thinking about the value of the arts, and usually—because they were idealistic and polite (and because I’d yet to give any pop-quizzes)—they’d protest mightily. But one year, a smart and serious young man threw me off.

“Actually, you’re right", he said. "I probably shouldn’t be here. I want to be a geneticist, and I’d get there sooner if I could use this time working ahead on that stuff.” It was a great point, but I was fully-caffeinated that morning. “I get that", I said. "But how well do you think your training in science will prepare you for the moral and ethical problems you’ll face as a geneticist?”

Unfixable problems

Renowned surgeon and author Dr Atul Gawande might've raised a similar question. “I am in a profession that has succeeded because of its ability to fix”, he writes in his big-hearted, searching best-seller Being Mortal: Medicine and What Matters in the End. “If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering.”

Life’s “two big unfixables”, of course, are ageing and dying, and in Being Mortal, Dr Gawande brilliantly explores why today’s medical industrial complex is ill-equipped to address them. “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers”, he writes. “I wrote this book in the hope of understanding what has happened.”

Being Mortal sat at the top of my to-be-read list for too long (although I did catch Frontline's excellent documentary on the book this February). But now that I’ve gotten to it, I wanted to share my notes. Use them to start—and join—conversations with your team and your colleagues throughout the industry. As always, we welcome your comments below, too.

‘The Independent Self’

In the book’s opening chapter, Dr Gawande explains how the modern era’s demographic shifts have inspired a relatively new phenomenon—the “veneration of the independent self”.

“In the past, surviving to old age was uncommon”, he writes, “and those who did survive served a special purpose as guardians of tradition, knowledge, and history.” But living to old age is no longer rare. In the late 18th-century, for example, those 65 and older made up less than two percent of the US population. Today, they comprise 14 percent.

The longer your parents live, of course, the longer they retain your inheritance, so in the mid-20th century, children began strike out on their own with more frequency. Today, parents and children tend to live independently of one another. That’s good for lots of reasons—and bad for a big one. “Serious illness or infirmity will strike”, Dr Gawande writes. “It is as inevitable as sunset.”

And when it does, living the independent life we so value can become an impossibility.

‘Things Fall Apart’

“Today, we have as many fifty-year-olds as five-year-olds”, Dr Gawande explains in the second chapter. “In thirty years, there will be as many people over eighty as there are under five.” This, he says, is an unrelenting, global trend, and we don’t have the number or type of doctors we need to respond to it.

What we need, it seems, are more geriatricians. Dr Gawande cites an experiment that looked at a segment of frail patients over the age of seventy, half of whom were assigned to see a geriatric team. “Within eighteen months, 10 percent of the patients in both groups had died", he writes. "But 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.”

Such results should be celebrated, but they aren’t. As a society, Dr Gawande believes, we simply don’t want what geriatricians have to offer. “When the prevailing fantasy is that we can be ageless, the geriatrician's uncomfortable demand is that we accept we are not.”

‘Dependence’

This anecdotal chapter, which explores the history and current state of nursing facilities, opens with a great Philip Roth quote from his novel, Everyman: “Old age is not a battle. Old age is a massacre.”

That massacre—the gradual erosion of our faculties and our physical fitness—eventually robs us of our ability to live alone safely.

When we reach that point, Dr Gawande argues, we have a choice to make: We can either live independently under the constant threat of accident or illness, or we can “yield all control over our lives” to a nursing facility.

But we have a right to expect more than that.  

‘Assistance’

Some assisted living facilities, Dr Gawande explains, promise a better way. He claims that as we age, we “narrow in”, which means that we prefer to spend time with people we know and love rather than expanding social networks. A good assisted living facility might fulfil this desire for connection (at the expense, perhaps, of absolute safety).

But there are two reasons they typically don’t. First, on a certain level, these facilities are businesses, and Dr Gawande points out that there are no good metrics for evaluating how good they are at assisting someone live. “By contrast”, Dr Gawande writes, “we have very precise ratings for health and safety.”

The other problem is that because the elderly rarely make this decision on their own, the facilities cater to the sense of protectiveness children feel toward their parents. As one gerontologist tells Dr Gawande, “We want autonomy for ourselves and safety for those we love.”

‘A Better Life’

This chapter delivers one of the book’s most memorable anecdotes. A Harvard medical school grad took a job as the medical director of a nursing home, where he introduced 100 birds, four dogs, two cats, a colony of rabbits, and a flock of laying hens in an effort to invigorate and improve his residents’ lives.

And it worked. A study found that, among other measures, the facility’s total drug costs were less than half that of a comparison facility, and deaths fell by 15 percent. But for Dr Gawande, there’s a larger point. “The most important finding of [the] experiment wasn’t that having a reason to live could reduce death rates for the disabled elderly”, he writes. “The most important finding was that it is possible to provide them with a reason to live, period.”

Although we’re living in a moment where attitudes are changing, health care today, Dr Gawande believes, generally isn’t interested in these sort of interventions. “Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live our waning days.” He goes on:

“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. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse.”

‘Letting Go’

“When should we try to fix and when should we not?” Dr Gawande’s question in this chapter often comes up in conversations about controlling health care costs. But he believes those conversations should have a different aim. We need to stop worrying, he believes, about how we’ll “afford this system’s expense”, and instead figure out a way to “build a health care system that will actually help people achieve what’s most important to them at the end of their lives.”

A better system, he believes, would be less invested in giving patients “the medical equivalent of lottery tickets” that will almost certainly not win. “Hope is not a plan”, he writes. “But hope is our plan.” Instead, we need a system that values hospice care and palliative specialists, and trains clinicians to skilfully facilitate discussions that help patients make difficult decisions. 

He cites a 2010 study as evidence. Half of a group of stage IV lung cancer patients were assigned palliative care specialists. “The result: 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 longer.

‘Hard Conversations’

In the book’s penultimate chapter, Dr Gawande describes his own “confrontation with the reality of mortality”. In 2006, an MRI detected a massive tumour growing inside his father’s spinal cord. “The information was difficult to take in”, he writes. “How many times had my father [a urologist] given patients hard news like this—that they had prostate cancer, for instance, requiring similarly awful choices to be made.”

Dr Gawande goes on to describe the two kinds of relationships doctors are taught to expect with their patients: paternalistic and informative. But in the end, he writes, “neither type is quite what people desire. We want information and control, but we also want guidance.” And as Dr Gawande walks us through his some of the high and low points of his father’s treatment, he describes the benefit of such shared decision making and the palliative power of hospice care, which his father eventually enters.

This gives us one of the book's most dramatic scenes. Dr Gawande is asked to deliver the graduation address at Ohio University, and his ailing father, who was supposed to arrive via golf cart and watch the ceremony from a wheel chair, courageously walks the length of the university’s arena and then up 20 steps to take a seat to join the attendees in the stands.

“I was almost overcome just witnessing it”, Dr Gawande writes. “Here is what a different kind of care—a different kind of medicine—makes possible, I thought to myself.”

‘Courage’

The book’s final chapter, which recounts his father’s death, opens with a scene from Plato’s dialogue the Laches about definition of courage. It leads Dr Gawande to this insight: “Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength.”

Ageing and sickness, he believes, require both “the courage to seek out the truth of what is to be feared and what is to be hoped”, and “the courage to act on the truth we find.” But this raises a conundrum: “One has to decide whether one’s fears or one’s hopes are what should matter most.”

When we make that decision, Dr Gawande argues, we do so, in part, by viewing our lives as stories. “And in stories”, he writes, “endings matter.” We may not be able to control our own ending, but “we are not helpless either”. He goes on:

“A few conclusions become clear when we understand this: that 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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