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Leaving Life With Dignity
Published on Sunday, September 17, 2000 in the Boston Globe
Leaving Life With Dignity
by Robert Kuttner
 

I HOPE YOU watched Bill Moyers's extraordinary PBS series on dying and end of life care. The four-part series last week eloquently depicted the personal and institutional dilemmas around how we die. (Disclosure: the magazine I edit receives financial suport from a foundation on whose board Moyers serves as president.)

Most people, like those shown in the documentary, want to die with dignity, with relief of pain and suffering, and on their own terms. But doctors, for the most part, are trained to prolong life, not to provide comfort. In most hospitals palliative care units, if they exist at all, are something new, exotic and unnerving for conventional physicians.

The series profiled several brave, ordinary people and their families. It showed what the hospice movement does, how Oregon's right-to-die law works, and the heroism exhibited by people with terminal illnesses, their families and caregivers, and pioneers in the movement for humane end-of-life care.

The series made me think hard about the enterprise of dying. But I couldn't help taking away four other subtexts.

First of all, most television is junk. As I was watching PBS, the news on adjoining channels showed spokesmen for the entertainment industry explaining why TV mostly panders to the coarsest instincts in its viewers. The real reason is that commercial television exists to sell products. The cheesy entertainment is a device to maximize viewership and attract commercial sponsors.

Everyone dies. What could be more important than whether we get to die with dignity? The Moyers series posed hard questions. It took us into intimate spaces in the lives of actual families. Yet unlike the voyeurism that pervades commercial television, it did so with great delicacy and respect, and without commercial interruption. It is no accident that the program ran on public TV. It is inconceivable that one of the commercial networks could have aired this series.

Second, you couldn't help noticing that end of life care, like the health care system at its best, is one of the few oases of interracial compassion. At the magnificent Balm of Gilead program, the palliative care unit at a Birmingham, Ala., public hospital, many of the patients and families were black and many of the doctors and nurses were white.

For centuries, blacks have served whites. This must be one of the few occasions when African-Americans, often of low income, are treated with respect and dignity by white helpers. There was a brief interracial scene at a church, where the hospice unit's white caregivers joined in a memorial service for a black patient.

Third, it was evident that every patient and every family caregiver dealing with a prolonged illness in this series had wrenching financial problems. One man, suffering the agony of ALS (Lou Gehrig's disease) needed a $24,000 wheelchair and a van. His wife, well into late middle age, was his only full-time caregiver.

Another, with lung cancer, had worked several jobs, none of which provided health insurance. Still another was caught in the classic Catch-22 of no longer being able to work and losing the health insurance that came with his job. Others qualified for care, but only because they were old enough to get Medicare or poor enough to qualify for Medicaid.

These, in case you've been living on Jupiter, are government programs. Any sane society would de-link health insurance from your job, your age, or your income level, and provide it as a right of citizenship.

This brings me to point four. To the extent that real progress has been made with end of life care, we can thank Medicare for recognizing early on the value of palliative care and paying the freight for it. And even Medicare, hammered by conservative pressure to cut costs, has been known to disallow hospice claims because a terminal patient had the temerity to live too long.

Medicare is, of course, the government. George W. Bush thinks that free choice is associated with private managed-care plans, while limited choice is associated with government bureaucrats. Where has this man been living?

There has been a lot of noise lately that medical care has just become too expensive; that we can't afford it. But this is one rich society; the real issue is private luxuries versus social necessities.

Drive around the shopping malls and trophy estates, look at the salaries paid corporate executives, and compare these with the need to end our days in dignity. Even a billionaire can't buy endless life. You'd almost think we were consuming ourselves to distraction rather than thinking hard about painful personal and national priorities.

Robert Kuttner is co-editor of The American Prospect. His column appears regularly in the Globe.

© Copyright 2000 Globe Newspaper Company

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