The Health-Care Customer Is Always Right?

ELLEN GOODMAN

October 26, 1993|By ELLEN GOODMAN

BOSTON — Boston.--In the beginning, there was Dr. God. We brought our bodies to his medical altar with a certain amount of fear, a lot of awe and some hope of salvation. Dr. God told us what to do and we did it praying all the while that he -- almost always he -- would save us from experiencing the afterlife before our time.

We lost this medical Eden for the same reason we lost the biblical one: knowledge. We came to know what doctors didn't know. We became more informed and more skeptical. We even learned to get a second opinion. This is not something that you do with God.

In due time, Dr. God became Your Partner in Health Care. Dr. Partner laid out the information, offered up the options with their assorted risks and benefits. In this collaborative effort over our bodies, we learned to read the fine print and keep up on the research.

Now Dr. God is terminal. Dr. Partner has become the norm. But Dr. Partner is rapidly turning into another Health Care Provider.

This change in the title doesn't just signal another demotion from the heavenly heights. It hints at a real shift in the relationships.

Dr. Provider is now cast as a purveyor, a kind of grocer to the human body. Dr. Provider doesn't have patients but consumers. And consumers are entitled to get what they want.

There is good and bad in this shift. After all, consumers are the ones who improved the experience of childbirth. Consumers are the ones demanding user-friendly hospitals. But consumers are also the ones running up the bill on CAT scans for every back strain and on sonograms for every pregnancy.

Doctors may not perform appendectomies upon request. But they increasingly fill our orders out of fear of malpractice or because it's good business. And occasionally a story comes along that points out the dangerous direction of this trend.

Consider the horrific tale of Baby K that will be heard in the federal court of appeals in Virginia tomorrow.

Baby K was born just over a year ago. Like one or two of every thousand children, she was born without a brain -- permanently unconscious without any ability to see, hear, feel. Nearly all anencephalic babies die within days of birth. But in this case, the mother insisted -- against the judgment of doctors and the hospital ethics committee -- that the baby be kept alive with a ventilator.

Eventually the hospital went to court to find out if it had to continue offering life-sustaining treatment. And to the surprise of most people, the lower court said it did. The judge ruled that refusing to treat Baby K would be discrimination against the disabled and a violation of the Americans with Disability Act. Overruling the mother would also violate her right to ''bring up children'' as she saw fit.

The description of Baby K as ''disabled'' is bizarre enough. Under this definition, a hospital or doctor could be guilty of discrimination if they refused to perform brain surgery on the baby just because she didn't have a brain.

There is a difference between discrimination and medical judgment.

The mother's right to make these decisions is a tougher call. In the most famous right-to-die cases, families have come to court to force the end of treatment. Families usually operate in the best interests of the patients. In all but extreme cases, they should prevail.

This, however, is the most extreme case imaginable. The mother is, in the court's words, operating out of a ''firm Christian faith that all life should be protected.'' But treating a baby without a brain fits every ethicist's definition of the word ''futile.''

The obvious costs of this futility are staggering. Every day she has been in the hospital has cost her HMO about $1,400. But there are even greater hidden costs.

If the appeals court doesn't overturn this case, says Boston University's George Annas, ''It says that there is no role for legitimate medical judgment. If this mother gets to decide how medicine is practiced on the child, independent of any benefit to the child, we couldn't run a health-care system. The health-care system would be everybody gets whatever they want.''

I am not nostalgic for Dr. God. But if this mother wins, the courts will be ordering doctors to be providers for consumers who are always right.

Thank you, but I am not keen on do-it-yourself medicine. I'd rather have a partner.

Ellen Goodman is a syndicated columnist.

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