The comfort of a humane, caring end of life
BOSTON — In the end, the personal was political. What brought the 78-year-old California governor and former Jesuit seminarian to sign the law that will allow doctors to prescribe life-ending drugs to terminally ill patients was thinking about his own last days.
“I do not know what I would do if I were dying in prolonged and excruciating pain,” wrote Jerry Brown, breaking a long silence on this issue. “I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”
And so on Thursday, California became the fifth state to make physician-assisted death legal.
I share Brown’s personal wish and, given only a yes or no option, I too would have signed the California legislation.
Yet, I worry about these bills spreading across the country, under consideration in 20 other states. I worry that the political debate may hijack a much-needed and much-richer movement to change the way we die in America.
In the past few years, the once-toxic subject of dying has gone mainstream. The disinformation campaign about “death panels” collapsed. Medicare has just begun to pay doctors for time spent having conversations about end-of-life wishes.
At the same time in Oregon, the first state to pass a “Death with Dignity Act,” only one of every 500 deaths comes from doctor-ordered medication. So why are we spending so much political energy to help the one rather than the 499?
The debate reminds me of the way we attack issues these days — like food fights. We ramp up controversies with opponents on either side, hurling opinions at each other.
If opponents of legal abortion call themselves pro-life and proponents
call themselves prochoice, well, in this argument proponents talk about “death with dignity” while opponents talk about “assisted suicide.”
Indeed I am reminded of the line attributed to Woody Allen when asked to describe his religion: Jewish... with reservations. In this end-of-life congregation, I find myself pro-legislation with deep and abiding reservations.
Reservation One? How many of the people who favor death with dignity think it’s the single, simple solution to the entire problem of people dying in ways they would not choose? We forget that the huge majority don’t want a right to die; they want a right to care.
Two: The important safeguards in this legislation require, as well they should, that a person asking for a lethal drug is of sound mind. But the greatest fear among many of the people I know is outliving their mind. For people with dementia, the legislation offers nothing.
Three: The “death with dignity” mantra appeals most to that cohort of people who believe they can control the end of their lives, the way they controlled the rest. Surely this is not the only way to die with dignity.
Four: The assumption behind these bills is that pain is commonly uncontrollable. Yet palliative care doctors tell us uncontrollable pain is as rare as the 1 percent. We need more palliative care. But a prescription for death mustn’t become the dominant substitute for “comfort care.”
And, Reservation Five: This bill makes it legal for doctors to give lethal drugs. But we know from surveys how few doctors are comfortable talking with patients about their end-of-life wishes.
Americans face the health care system with two conflicting fears — that they won’t get enough care and that they will get unwanted care. At the heart of my reservations is the fear that we set up a false choice between suffering miserably or hastening death.
I agree that doctors shouldn’t be prosecuted and the few people with unrelenting pain should have a merciful aid. But what will really make a difference?
For most of us, what’s more important than legislation is conversation. One thing I learned in founding The Conversation Project is that everyone needs to talk with the people we love about how we want to live at the end of our life — including what treatment we want and don’t want.
Half of the people over 65 admitted to hospitals are incapable of making choices for themselves. So we need to choose a decision-maker in case we can’t decide for ourselves. And to fill out an advanced directive.
As for doctors, rather than simply being allowed to give drugs, they need to be better trained in the art of difficult conversations.
The sample of my reservations is less about ethics than efficacy. But my deepest concern comes from watching how easy it is to derail this movement into a polarizing political fight.
Too many of us do not die in the way we would choose. Too many survivors are left guilty, depressed and bereft. Rather than just offering a few patients the “comfort and dignity” of lethal medication, we need to assure everyone the comfort and dignity of a humane, caring ending.
The odds are — 500 to 1 — that this is not a political problem, but a deeply personal one. Ellen Goodman is a former nationally syndicated columnist for the Boston Globe and founder of The Conversation Project, theconversationproject.org. Contact her at Ellengoodman1@me.com.