The seemingly easiest and most sensible rule for a doctor to follow is: Always Fight. Always look for what more you could do. (...)

But our fight is not always to do more. It is to do right by our patients, even though what is right is not always clear.

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I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets — and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win. Hope is not a plan, but hope is our plan.

One wants to know whether, in the end, her troubles were physical or psychological. But it is a question as impossible to answer as whether a blush is physical or mental — or, for that matter, whether a person is. Everyone is both, inseparable even by a surgeon’s blade.

I learned about a lot of things in medical school, but mortality wasn’t one of them. Although I was given a dry, leathery corpse to dissect in my first term, that was solely a way to learn about human anatomy. Our textbooks had almost nothing on aging or frailty or dying. How the process unfolds, how people experience the end of their lives, and how it affects those around them seemed beside the point. The way we saw it, and the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise.

Consider the fact that we care deeply about what happens to the world after we die. If self-interests were the primary source of meaning in life, then it wouldn’t matter to people if an hour after their death everyone they know were to be wiped from the face of the earth. Yet, it matters greatly to most people. We feel that such an occurrence would make our lives meaningless. The only way death is not meaningless is to see yourself as part of something greater; a family, a community, a society. If you don’t, mortality is only a horror, but if you do, it is not. Loyalty, said Royce, solves the paradox of our ordinary existence, by showing us outside of ourselves the cause which is to be served, and inside of ourselves, the will which delights to do this service, and is not thwarted, but enriched and expressed in such service… Above the level of self-actualization in Maslow’s hierarchy of needs, they suggest the existence in people of a transcendent desire to see and help other beings achieve their potential.
As our time winds down, we all seek comfort in simple pleasures; companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces. We become less interested in the awards of achieving and accumulating and more interested in the rewards of simply being. Yet, while we may feel less ambitious, we also have become concerned for our legacy, and we have a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile.

In the end, people don’t view their life as merely the average of all of its moments, which after all is mostly nothing much, plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments; the ones where something happens. Measurements of people’s minute by minute levels of pleasure and pain miss this fundamental aspect of human existence. A seemingly happy life may be empty. A seemingly diffic

As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in this world — to make choices and sustain connections to others according to their own priorities. In modern society, we have come to assume that debility and dependence rule out such autonomy.

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.