Helping without hope Medical ethics: A Colorado group re-examines what limits to impose on care for the terminally ill.

April 28, 1996|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

DENVER -- The grip of his tiny fist is still tight on his mother's finger. In those moments, Rachelle Harbuz can't believe her 9-month-old son is dying. She looks for some hint in his face to guide her and her husband in a torturous decision: how much medical care they should give him.

"I wish I could know what was going on inside his little head," said Mrs. Harbuz, 23, whose son has a rare brain disorder.

Where to draw the line on care for the dying has largely been a decision made by patients and their doctors. But in Denver, doctors, nurses, social workers and others are pioneering a community approach to end-of-life care. They're working to define when a case is hopeless and set guidelines for what care patients should get.

Organizers are now taking the guidelines to the public for approval, and they want the region's hospitals to adopt them. Their goal is to force change in a culture that has allowed terminal patients to get every possible treatment, even when there may be little benefit.

"We got off track somewhere. We're not doing what is good and what is right. We're doing a lot of stuff out of fear, out of ignorance, out of laziness," said Dr. Donald J. Murphy, a geriatrician and director of the project, the Colorado Collective for Medical Decisions. "We haven't had the public dialogue about what is good medicine, what is the right thing to do, what is appropriate care and what isn't."

Critics say that even though patients and physicians still have the final say, the guidelines put society's will over the patient's wishes. They also fear that the guidelines could quietly become policy, limiting treatment and generating profit for the health industry. In the arena of life and death, they say, patients must be given every chance.

The undertaking explicitly addresses what is perhaps the most critical issue facing American medicine: how to set limits.

For the past few generations, putting overt restrictions on health care and its high technology was considered heresy. The system dealt with increasing demand by limiting access, and now, at least 40 million Americans have no health insurance.

But a dovetailing of vast forces -- the increase in health costs, the aging of the U.S. population, concern about quality of life for the dying, and extensive changes in the health system -- has pushed this question to the forefront.

Dr. Murphy's group recently received a $1.25 million grant to take their project statewide. They are conducting several studies, including a look at CPR outcomes and the savings associated with do-not-resuscitate orders. They are also trying to develop a way to resolve disputes when patients, families and physicians disagree.

More than a dozen cities across the country have followed Denver's lead. The projects have found strong support among physicians, hospitals, and families who say change is needed.

Mary Lou Hendrix, a Denver woman whose aunt died in 1994, is angry that she had to battle the physician to stop providing care -- even though her aunt made it clear that was what she wanted.

"The tricky part is, what is considered a hopeless case?" asked Mrs. Hendrix, a nurse practitioner who wonders how difficult it must be for nonmedical people to navigate the system.

In Denver, the project has come up with preliminary answers to some of that question. Their draft guidelines cover three areas -- adult intensive care, neonatal intensive care and long-term care.

One proposal is that intensive care not be recommended for patients who are in a permanent vegetative state. Another says that CPR should not be provided if the patient has end-stage dementia, or an end-stage illness and less than a 5 percent chance of surviving to discharge after CPR.

The guidelines also emphasize providing comfort. For those in long-term care situations such as nursing homes, for instance, patients with end-stage dementia should be treated palliatively when they become acutely ill. Doctors and nurses treating those in permanent vegetative states should focus on personal care and dignity.

Former Colorado governor Richard Lamm, one of the first political figures to take on this issue and now a board member of the collective, believes the public discussion is long overdue.

Even though his wife was saved from breast cancer by high-technology medicine, he isn't sure that his 88-year-old father should get the same level of treatment.

"My father is more afraid of what the health care system will do to him, rather than for him," Mr. Lamm said. "We don't give TC damn about the elderly in this country until they collapse on the street. Then we take them to the ER and pay $100,000 to give them an expensive death."

Who decides?

Ethicists admire the efforts of Denver and other cities, but they say that the drawback is in deciding who gets to participate in developing that consensus.

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