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Elizabeth Cooney is a health reporter for the Worcester Telegram & Gazette.
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Wednesday, July 4, 2007

Doctor advises how to resolve family-hospital disputes over ending life support

They’re called "medical futility" cases, when family members and hospitals disagree on whether to continue life support for very sick patients. Although rare, they raise questions about respect for others’ viewpoints, a Children’s Hospital Boston doctor says.

Writing in tomorrow’s New England Journal of Medicine, Dr. Robert D. Truog warns against laws that allow a hospital ethics committee to be "surrogate judge and jury."

He considers the recent case of 19-month-old Emilio Gonzales, whose mother went to court to prevent Austin Children’s Hospital from turning off his respirator. Emilio had a rare, fatal genetic disorder called Leigh’s disease that meant he was in intensive care for five months with declining neurological function. Under the Texas Advance Directives Act, the hospital’s ethics committee decided to withdraw life support despite the objections of his mother, Caterina Gonzales.

"I’m concerned that legislation like that in Texas makes it just too easy for people in the medical profession to override the desires of those who have unpopular views," Truog said in an interview. "We’ve got a beautiful system of laws designed to protect people from the tyranny of the majority. The Texas law just bypasses it."

Massachusetts has no law governing cases like these, Truog said. Director of medical ethics at Harvard Medical School, he wrote a policy for Children’s about medically futile care. Under that policy, if a hospital ethics committee were to conclude that medical treatment should be stopped and the family disagreed, it would assist the family in finding and sometimes paying for a lawyer to take the hospital to court so a judge would decide.

In Emilio’s case, his mother found legal help through right-to-life groups, Truog said, but the process should have included safeguards to make that recourse standard. Those safeguards also have the benefit of allowing time for more discussion between the family and the hospital, he said, rather than ending the argument with a unilateral decision. Emilio died before the judge ruled, an outcome that is common in cases like these, Truog said.

The beliefs of people providing care in cases like these should not be ignored, he said. Clinicians should be supported in the difficult job of giving care that they don’t agree is the right thing to do. But their concerns do not automatically win the day, he wrote.

"The claim that continued life support for Emilio was morally objectionable was nothing more than an assertion that the values of the clinicians were correct while those of Ms. Gonzales were wrong," Truog wrote. "I believe that in cases like that of Emilio Gonzales, we should seek to enhance our capacity to tolerate the choices of others, even when we believe they are wrong."

Posted by Elizabeth Cooney at 05:00 PM
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