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Stanford Report, March 30, 2005

5 questions: Magnus on the Terri Schiavo case

An occasional feature in which a medical expert answers five questions on a science or policy topic of interest to the Stanford community

David Magnus

Terri Schiavo's approaching death is unlikely to end the national debate about how end-of-life decisions should be made. The feeding tube for Schiavo, the Florida woman who suffered severe brain damage 15 years ago, was removed March 18 because her husband said she wouldn't want to be kept alive by artificial means—a sentiment her parents refute. To sort through the thorny dilemmas surrounding the issue, Medical Center Report turned to David Magnus, PhD, director of the Stanford Center for Biomedical Ethics.

1. The term, "starving her to death," has been used many times to describe the removal of Terri Schiavo' feeding tube. Is that an accurate description?

Magnus: Not at all. That would be like saying that when we remove ventilator support we are suffocating someone. Palliative care experts have established that discontinuing hydration and nutrition is one of the most painless ways for someone's life to end. Gastric tubes are invasive medical interventions, and patients have a right to refuse medical treatments.

2. In cases like these, how do you reach conclusions as to whether it is ethical to keep a patient alive?

Magnus: The key is to do the best we can to respect the values and wishes of the patient. Patients have the right to refuse treatment, and we try our best to ascertain what they would want to do given their situation. Living wills are actually far less help than people realize, except in a narrow range of cases. The most important thing is for a person to have conversations with family members about his/her values and what he/she would want in a range of cases, and to designate a decision maker in an advanced directive. The one exception to the rule (that we try to do what the patient wants) is that we do not always offer treatments that are medically ineffective.

3. California law differs from Florida in dealing with end-of-life decisions. How so?

Magnus: In Florida, there is an assumption about who would be the appropriate person to say what the patient would want. So the spouse is the decision maker unless there is reason to believe that the spouse is not doing what the patient would have wanted (if there is no spouse, then adult children; if no adult children, then parents). In California, the treating physician is responsible for selecting an appropriate surrogate based on several criteria to determine the person most likely to do what the patient would want. In addition, California has a very different standard that makes it easier for hospitals to discontinue treatment they feel is medically inappropriate.

4. What bothers you the most about how the media is playing the story?

Magnus: There were so many ways in which the coverage was misleading. First, it was not made sufficiently clear that patients have a basic right to refuse treatment. That means the real question in this case was about the standards we adopt for knowing what a patient wants. Different value systems get embodied into state law, and the laws basically fall into three types. States such as Missouri and Pennsylvania have decided that life (even in a persistent vegetative state, or PVS) is so valuable that clear and compelling evidence is required before a surrogate can authorize discontinuing treatment. States such as Florida are neutral between being in a PVS and no longer living, and so less evidence is required to authorize discontinuing treatment. Then there are states such as California that have basically said life in a PVS is not a worthwhile goal for medicine. Hospitals are not required to offer such treatment, though patients are given the opportunity to find other institutions that will allow them the treatment they desire.

The failure to present the case in this way gave rise to a lot of irrelevant—and often misleading discussion—such as whether the patient was really in a PVS or a minimally conscious state, or whether a gastric tube was different from ventilator support.

5. As you look at the national debate, is it good or bad for the country? Informative or hysterical?

Magnus: A bit of both. It is good for people to recognize that they need to have conversations with their loved ones to ensure that their wishes and values will be respected. On the other hand, the topic was sensationalized and incorrectly presented as a right-to-life issue rather than the right-to-refuse-treatment case that it actually was. It was pretty clear early on that this case was going to be a lot more about politics than about how end-of-life decisions should be made. The fact that the actions by the Florida legislature and by Congress had to do with one patient—and not the system—highlights that Terri Schiavo was used to score political points rather than to seriously address the topic.