Commentary: Families must learn to discuss end of life issues

BOSTON -- Whoever thought that Terri Schiavo would rest in peace? A year after her death, her parents and husband are back in the spotlight with "his" and "theirs" books. A year and two weeks after her feeding tube was removed, they are making du...

BOSTON -- Whoever thought that Terri Schiavo would rest in peace? A year after her death, her parents and husband are back in the spotlight with "his" and "theirs" books. A year and two weeks after her feeding tube was removed, they are making dueling appearances on television. Sixteen years after she fell into a persistent vegetative state, they have opposing organizations launched in her memory.

This postmortem battle has suggested a national civil war waged in blue and red. Indeed since Schiavo's death, conservative groups have filed 49 bills in 23 state legislatures seeking laws that would leave any patient without a living will -- such as Terri -- on life support.

But what if they gave a culture war and nobody came?

Here's the surprising fact. Those bills have stalled or been watered down. Public opinion has not changed an iota. A year ago, 63 percent thought Terri's tube should be removed. Today, they feel the same way. End-of-life issues have simply not become a divisive political flash point for the vast majority of Americans.

If you can see this in the Schiavo case, you can also see it in the issue of doctor-assisted suicide. Not long ago, former Attorney General John Ashcroft tried to upend Oregon's Death with Dignity Act by threatening doctors who prescribed lethal doses of drugs under the state law. But in January, the Supreme Court rapped the federal government hard on the knuckles.


Most politically savvy folks predicted proponents would rush to bring Oregon's law to other states and opponents would push Congress to alter the Controlled Substances Act. But that hasn't happened either.

The low-key response may be testimony to where we are now in the long, intimate, difficult discussions about the end of life, about death with dignity and mercy.

We've learned a few things since Florida became the site of the Schiavo crossfire. We've also learned a few things since Oregon became the only state to permit doctors to prescribe lethal drugs.

In the first seven years, only 208 terminally ill Oregonians chose that way of dying. That's one in a thousand. Doctor-assisted suicide frames the issue, as bioethicist Thomas Murray of the Hastings Center says, in starkly legalistic and individual terms when most of us make these decisions with our families, not our lawyers; together, not alone.

If the ultimate goal is to improve end of life for the 2.4 million Americans who die every year, we have to think about more than one-tenth of 1 percent.

So, as a country, we have simply moved on. Despite the Terri Schiavo fiasco, despite the Oregon law, Americans have actually come to something of a consensus. It's a stark, shared view of what we fear and a nuanced view what we want for ourselves and others.

The fearful fantasy began 30 years ago with the icon of Karen Ann Quinlan breathing on a respirator. We fear medicine will take over. We fear pain. We fear dying in isolation. What we want, as Murray recounts, is, "better treatment of pain, some assurance we won't get caught up by the medical machine and we want a chance to die the way we live -- in networks of relationships."

This shared consensus doesn't mean that we have solved the problem. In the past decade there has been real improvement. More hospice patients die at home in Oregon than in any other state. More people have also signed advance directives since they saw Terri Schiavo's family locked in primal prime-time battle over her fate.


But we still don't treat pain aggressively enough. Doctors who specialize in such treatment are sometimes treated as suspected drug peddlers. Advance directives don't always work. Half of all cases involving end-of-life decisions include a conflict within the family or between family and professionals.

Surely, we need to resist the laws that would give the state control over Terri's feeding tube. Surely, doctors should be allowed to prescribe lethal drugs in those rare and controlled cases outlined in Oregon. But for the sake of 99.9 percent of Americans, we are shifting from a legal agenda to a personal agenda.

In a Hastings Center report last fall, Murray and co-author Bruce Jennings said, "We must talk about what we dare not name, and look at what we dare not see. We shall never get end-of-life care 'right' because death is not a puzzle to be solved. Death is an inevitable aspect of the human condition."

This is the way we move from the culture wars to the kitchen table, from the high-decibel yell of politics to the quiet conversation of worried families.

Ellen Goodman's e-mail address is .

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