Cynicism

I’ve thought a lot about Atul Gawande’s New Yorker article on medical and hospice care for people with terminal illnesses. It’s a wonderful piece I want everybody to read, even though it’s on a topic not everybody wants to read.

Lately, though, re-reading it, one sentence made me very mad.

Gawande’s most basic message is that people who have a terminal disease need to talk about their options with somebody knowledgeable.

“Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, 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.”

And then, much later in Gawande’s long article: “Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery, but not to take the time required to sort out when doing so is unwise. This certainly is a factor. (The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for “death panels” and stripped out of the legislation.)”

That last line is what gets me.

I knew at the time of the “death panel” controversy that it was just sound-bite political manipulation. Like so many charges that float around the political blogosphere, it convinced only those who wanted to be convinced, but there were enough of those to create a mob atmosphere. The bill’s sponsors had plenty of other problems, so they let the provision drop.

But unlike similar paranoid nonsense that Obama is a Muslim (or an “anti-colonial,” in the latest rendering of his devilish plans), the “death panel” charge did more than make partisan mischief. In effect it made it unlikely that family doctors would take the hour or two required for a deep, thoughtful and informed conversation with people who have only months to live. In effect, it condemned more people to die in an ICU, with beeping machines for company, rather than at home with their family. I’m going to find it very hard to forgive the political cynicism (that’s you, Sarah Palin) and the moral cowardice (that’s you, all the politicians who kept their heads down and said nothing) that did this.

Look, politicians and their acolytes say a lot of nonsense in the course of our unending election campaign. (That’s what governance has become—all campaign, no governing.) Most of it is just hot air and talking points. But we need to observe a line, when our talking points actually do harm to the helpless and vulnerable. It’s not true that any stick will do in a fight. Some of those sticks are made of toxic materials.

How to Go About Dying

My friend Tom passed away last night, peacefully, with his wife Joyce holding his hand. He had been unconscious to the world for several days. Thankfully, the skilled helpers at hospice were able to make him comfortable and ease the distress that is natural in this final great transition.

Coincidentally, I just read a wonderful essay in The New Yorker by Atul Gawande, a doctor who often writes on medical issues. This essay has to do with how we die, and how we cope with death through the heroic interventions of modern medicine. Since many of the deaths I’ve witnessed in recent years have been hospice deaths, I’ve come to think (naively) that everyone is aware of hospice as an alternative way to leave this life. In Gawande’s perspective, however, even very experienced medical personnel may have only a cursory awareness of hospice, and they are often very uncomfortable “giving up the fight,” even in cases where they know the patient has almost no chance of recovery. Doctors don’t, Gawande says, usually talk frankly to their patients and their patients’ family about what is really going on. They mostly offer one heroic intervention after another, knowing that the chances of success grow diminishingly small. The result is that people end their lives in drugged states, in cramped ICUs, with tubes in every orifice of their bodies. They don’t get much chance to say good-bye. Nobody is at peace.

It’s a complex subject, and there are many reasons why people persist to the end taking heroic measures. I think, however, that often people do so because they are not able to face death. Gawande suggests that the medical establishment is complicit in this denial, perhaps because the doctors themselves are not able to face death.

Most people, when asked how they hope to die, say they want to go  without warning in their sleep. In medieval times, however, that was regarded as the worst way to die–unprepared spiritually, without time to repent and reconcile and make charitable contributions, without time to say good-bye. That is the course I want to follow. Every one of us is going to die someday, and we cannot control the hour of our death. We often can, however, have a choice of whether we die peacefully, in our own homes, with our family and friends more prominently present than monitors and tubes.