THE ETHICIST

The People's Choice

By Faith McLellan, PhD

Posted June 27, 2001

 

How conscious is conscious?
He is no longer comatose, but a neurologist calls him “minimally conscious.”
 
 
The only “proof” of his wishes is his wife's recollection.
 
The Ethicist, finding herself in the oft-decried quandary where no ethicist likes to dwell, has borrowed a tip from the playbook of a fellow journal editor: reader empowerment! Facts, background, and opinion galore follow on a distressing case. Then over to you for the tough part: deciding on the matter.

Robert Wendland, now 49, was severely injured in 1993 in a car accident [1]. For 16 months after the accident, he was in a coma. He is no longer comatose, nor in a persistent vegetative state, but is “minimally conscious,” in the words of Ronald Cranford, MD, a professor of neurology affiliated with the Center for Bioethics at the University of Minnesota. Wendland is incapable of communicating, remains hospitalized in California, and receives artificial nutrition through a feeding tube. Doctors believe he has no hope of further recovery.

Once, after Wendland pulled out his feeding tube, his wife, Rose, who is his conservator, and children decided not to replace the tube if it became dislodged again, and thus to let him die. They reached this decision, with the approval of the hospital ethics committee, based in part on a conversation Rose and Robert had had about disconnecting Rose’s father from life support. Robert, according to his wife, expressed a wish never to be kept alive on tubes.

California law allows a conservator to decide whether to withhold treatment, based on clinical advice and consideration of the patient's previously expressed wishes. But when Robert's mother learned of Rose's decision, through an anonymous tip from someone at the hospital, she went to a court, which blocked the removal of the feeding tube. The judge ruled that Rose had not provided “clear and convincing evidence” that Robert wanted to die. Rose's lawyers have argued that this standard is too high, and that the state requires only that the conservator be acting in good faith, based on medical advice.

The case turns on the questions of whether Robert Wendland should be considered truly conscious, and what his wishes would be were he able to express them. Legal decisions until now have allowed termination of nutrition and hydration only in cases in which the patient was terminally ill or unconscious; Wendland is neither. He did not have an advance directive, so the only “proof” of his wishes is his wife's recollection of their conversation. The case has now gone to the California Supreme Court.

Lined up on Rose’s side of the case are the American Civil Liberties Union, the California Medical Association, and some 40-odd bioethicists. On the other side are Florence Wendland, Robert’s mother, and his sisters; advocates for the disabled, the elderly, and people with Alzheimer’s disease; and abortion opponents. Florence Wendland’s supporters see this case as a watershed, and fear that a decision to stop nutrition and hydration for Robert will open the floodgates to withdrawing treatment in other conscious but disabled patients.

Before you reach your own decision about what should be done in this case, a few more considerations may muddy the waters. The standard in law and ethics over the past few decades has been that competent adults have the right to determine what happens to their own bodies, including the right to refuse treatment. Robert isn't competent, so that doesn't help. Right-to-life groups have argued that nutrition and hydration aren't “treatment,” and that withdrawing them is different from withdrawing artificial respiration or intravenous medication. Ethicists have consistently rejected this argument, but there is little question that the provision of food and water has an emotional charge greater than any other “treatment.”

In the best of all possible worlds, Robert would have had an advance directive that clarified his wishes, and failing that measure, that his family would have been able to agree among themselves on his best interests. But as my old undergraduate philosophy professor used to say, “Sadly, this is not the best of all possible worlds.”

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