Being Mortal: Medicine and What Matters in the End

Atul Gawande

Summary

Death is unpleasant to think about, but it’s even more unpleasant to think about the final stages preceding death: endless treatments, false hope, a lack of concern for the quality of life, dealing with the uncertainty and ambiguity when choosing among only bad choices, thinking about the degradation and lack of dignity towards the end.

No of these are pleasant thoughts. But Atul Gawande shares some ideas on how to manage and think about these uncomfortable situations you’ll likely have to face one day, whether that’s for you, a parent, or a grandparent. Everyone is likely to go down this horrible path, so better to prepare and hope it never happens.

The Big Ideas:

1. End of life care is too focused on keeping us alive and not focused enough on the quality of the life

2. We don’t think about end-of-life issues because it’s often embarrassing and uncomfortable to discuss

3. Human beings are complex machines. We hang on for quite a while, but eventually we break down beyond repair

4. The focus is on shiny new technologies over old age care

5. We all desire a cause bigger than ourselves

6. Medicine isn’t concerned with the quality of relationships and what really matters. Medicine wants to keep us alive, not worry about the quality of the life

7. The wisdom is knowing when to surrender

8. The inadequacy of end-of-life care is the fault of both the medical profession and patients. Patients have unrealistic expectations and will try anything to survive. Medicine won’t be honest and direct and will give the patient what they desire even when it’s no help

9. Patients need information and facts. They also need guidance and the ability to choose. It’s a combination, not one or the other

10. The courage to confront ugly realities and the courage to act in the face of uncertainty

11. Questions you should ask yourself when thinking about end-of-life concerns

End of life care is too focused on keeping us alive and not focused enough on the quality of the life

From Being Mortal:

You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life.

The job of any doctor, Bludau later told me, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world. Most doctors treat disease and figure that the rest will take care of itself. And if it doesn’t—if a patient is becoming infirm and heading toward a nursing home—well, that isn’t really a medical problem, is it?

We don’t think about end-of-life issues because it’s often embarrassing and uncomfortable to discuss

From Being Mortal:

The progress of medicine and public health has been an incredible boon—people get to live longer, healthier, more productive lives than ever before. Yet traveling along these altered paths, we regard living in the downhill stretches with a kind of embarrassment. We need help, often for long periods of time, and regard that as a weakness rather than as the new normal and expected state of affairs.

Human beings are complex machines. We hang on for quite a while, but eventually we break down beyond repair

From Being Mortal:

If our genes explain less than we imagined, the classical wear-and-tear model may explain more than we knew. Leonid Gavrilov, a researcher at the University of Chicago, argues that human beings fail the way all complex systems fail: randomly and gradually. As engineers have long recognized, simple devices typically do not age.

But complex systems—power plants, say—have to survive and function despite having thousands of critical, potentially fragile components. Engineers therefore design these machines with multiple layers of redundancy: with backup systems, and backup systems for the backup systems. The backups may not be as efficient as the first-line components, but they allow the machine to keep going even as damage accumulates. Gavrilov argues that, within the parameters established by our genes, that’s exactly how human beings appear to work. We have an extra kidney, an extra lung, an extra gonad, extra teeth. The DNA in our cells is frequently damaged under routine conditions, but our cells have a number of DNA repair systems. If a key gene is permanently damaged, there are usually extra copies of the gene nearby. And, if the entire cell dies, other cells can fill in.

Nonetheless, as the defects in a complex system increase, the time comes when just one more defect is enough to impair the whole, resulting in the condition known as frailty. It happens to power plants, cars, and large organizations. And it happens to us: eventually, one too many joints are damaged, one too many arteries calcify. There are no more backups.

The focus is on shiny new technologies over old age care

From Being Mortal:

But the dismal finances of geriatrics are only a symptom of a deeper reality: people have not insisted on a change in priorities. We all like new medical gizmos and demand that policy makers ensure they are paid for. We want doctors who promise to fix things. But geriatricians? Who clamors for geriatricians? What geriatricians do—bolster our resilience in old age, our capacity to weather what comes—is both difficult and unappealingly limited. It requires attention to the body and its alterations. It requires vigilance over nutrition, medications, and living situations. And it requires each of us to contemplate the unfixables in our life, the decline we will unavoidably face, in order to make the small changes necessary to reshape it. When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not. *

We all desire a cause bigger than ourselves

From Being Mortal:

IN 1908, A Harvard philosopher named Josiah Royce wrote a book with the title The Philosophy of Loyalty. Royce was not concerned with the trials of aging. But he was concerned with a puzzle that is fundamental to anyone contemplating his or her mortality. 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. This was, to him, an intrinsic human need. The cause could be large (family, country, principle) or small (a building project, the care of a pet). The important thing was that, in ascribing value to the cause and seeing it as worth making sacrifices for, we give our lives meaning.

Royce had no sympathy for the individualist view. “The selfish we had always with us,” he wrote. “But the divine right to be selfish was never more ingeniously defended.” In fact, he argued, human beings need loyalty. It does not necessarily produce happiness, and can even be painful, but we all require devotion to something more than ourselves for our lives to be endurable.

Medicine isn’t concerned with the quality of relationships and what really matters. Medicine wants to keep us alive, not worry about the quality of the life

From Being Mortal:

The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul.

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. 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. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.

The wisdom is knowing when to surrender

From Being Mortal:

The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.

The inadequacy of end-of-life care is the fault of both the medical profession and patients. Patients have unrealistic expectations and will try anything to survive. Medicine won’t be honest and direct and will give the patient what they desire even when it’s no help

From Being Mortal:

More often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.” All-out treatment, we tell the incurably ill, is a train you can get off at any time—just say when. But for most patients and their families we are asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. 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—and escape a warehoused oblivion that few really want.

Patients need information and facts. They also need guidance and the ability to choose. It’s a combination, not one or the other

From Being Mortal:

DURING MEDICAL SCHOOL, my fellow classmates and I were assigned to read a short paper by two medical ethicists, Ezekiel and Linda Emanuel, on the different kinds of relationships that we, as budding new clinicians, might have with our patients. The oldest, most traditional kind is a paternalistic relationship—we are medical authorities aiming to ensure that patients receive what we believe best for them. We have the knowledge and experience. We make the critical choices. If there were a red pill and a blue pill, we would tell you, “Take the red pill. It will be good for you.” We might tell you about the blue pill; but then again, we might not.

The second type of relationship the authors termed “informative.” It’s the opposite of the paternalistic relationship. We tell you the facts and figures. The rest is up to you. “Here’s what the red pill does, and here’s what the blue pill does,” we would say. “Which one do you want?” It’s a retail relationship. The doctor is the technical expert. The patient is the consumer. The job of doctors is to supply up-to-date knowledge and skills. The job of patients is to supply the decisions. This is the increasingly common way for doctors to be, and it tends to drive us to become ever more specialized.

In truth, neither type is quite what people desire. We want information and control, but we also want guidance. The Emanuels described a third type of doctor-patient relationship, which they called “interpretive.” Here the doctor’s role is to help patients determine what they want. Interpretive doctors ask, “What is most important to you? What are your worries?” Then, when they know your answers, they tell you about the red pill and the blue pill and which one would most help you achieve your priorities.

Experts have come to call this shared decision making. It seemed to us medical students a nice way to work with patients as physicians.

The courage to confront ugly realities and the courage to act in the face of uncertainty

From Being Mortal:

At least two kinds of courage are required in aging and sickness. The first is 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. We have many reasons to shrink from it. But even more daunting is the second kind of courage—the courage to act on the truth we find. The problem is that the wise course is so frequently unclear.

For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen, it is hard to know what to do. But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most.

Questions you should ask yourself when thinking about end-of-life concerns

From Being Mortal:

Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: 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?