Writing lets you step back and think through a problem. Even the angriest rant forces the writer to achieve a degree of thoughtfulness.
In every industrialized nation, the movement to reform health care has begun with stories about cruelty.
Man is fallible, but maybe men are less so.
Human interaction is the key force in overcoming resistance and speeding change.
In the end, people don’t view their life as merely the average of all 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 maybe empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves.
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 recognize 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.
Our ultimate goal, after all, is not a good death but a good life to the very end.
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.
We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being.
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 best friends, their way of life. As Felix put it to me, “Old age is a continuous series of losses.” Philip Roth put it more bitterly in his novel Everyman: “Old age is not a battle. Old age is a massacre.
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. Without it, we have only our desires to guide us, and they are fleeting, capricious, and insatiable. They provide, ultimately, only torment.
Culture has tremendous inertia,” he said. “That’s why it’s culture. It works because it lasts. Culture strangles innovation in the crib.
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. Yet – and this is the painful paradox – we have decided that they should be the ones who largely define how we live in our waning days.
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 difficult life may be devoted to a great cause. We have purposes larger than ourselves. Unlike your experiencing self – which is absorbed in the moment – your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works out as a whole.
Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.
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?
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.
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.
If end-of-life discussions were an experimental drug, the FDA would approve it.
We want perfection without practice. Yet everyone is harmed if no one is trained for the future.