What can we learn from the Schiavo case?

Inexcusable silence
In addition, organized medicine and hospice care in America need to reflect on their relative lack of participation in the national debate about Schiavo. With the exception of the California Medical Association, the New England Journal of Medicine, which rapidly got some useful articles into print, the American Academy of Neurology and a few other health care groups, few medical organizations spoke out or used this event as an opportunity to teach or explain. Most groups, such as the American Medical Association, were, sadly, nowhere to be found.

And where were the patient advocacy groups and those who represent the interests of the disabled, the chronically sick and the brain injured? Not Dead Yet spoke up and let their views be known. But where were the many other groups who also speak for those with Alzheimer’s, Parkinson's, ALS, cancer, AIDS, spinal cord injuries, cystic fibrosis, Huntington’s disease and numerous other maladies where very hard choices about terminating treatment and even ending the use of feeding tubes have to be made. Ducking commentary on the Schiavo case should not be an option for those with the most experience in decisions to stop care. Cowardice in the face of controversy is not a virtue.

And yes, we heard from the Vatican about its thoughts concerning Schiavo. But where were the Christian Scientists, the Jehovah’s Witnesses and the fundamentalist Protestants who turn to prayer to express their views on the right to refuse any and all medical care including a feeding tube? And what were the views of the Lutheran Church, the United Church of Christ, reform Jews, Congregationalists, Hindus, Buddhists, Muslims, Mormons, Seventh Day Adventists, Unitarians, Presbyterians, and Episcopalians on the right to refuse treatment including feeding tubes? These groups owe it to us to end their silence and to weigh in with their thinking.

Those who suggested that any hospice would ever let a person die a miserable, painful death should simply recant. Hospice is one of the greatest institutions ever to appear in American health care. No one, whatever their motives or goals, should ever be allowed to suggest that those who provide care in hospices do so in a way that does anything other than put the control of pain and the maintenance of human dignity at the forefront.

Respect individual choice and the law
I have my own view on what to do when medicine forces a choice between life and liberty. I favor letting each person make up their own mind about what they want from the health care system. I favor letting competent adults say "no" to ventilators, dialysis machines, CPR, feeding tubes, chemotherapy, aspirin, blood transfusions, antibiotics, physical therapy and even conversations with a doctor. I favor turning to husbands and wives as the decision-makers when a person who once was competent cannot speak. I believe husbands and wives can have their role as surrogate challenged. I favor letting local courts handle disputes in these matters without interference from presidents and governors, the speaker of the House, the Senate majority whip or federal judges. And I favor honoring the law, not disregarding it when there is disagreement about what to do with a patient.

That said, some may argue I am wrong. But, I am not wrong about the fact that Schiavo has given us all a chance to talk and understand more about how to use medical technology to prolong life in hospitals, nursing homes and hospices. Any politician, interest group, educational organization, religious entity or advocacy organization that fails to take advantage of that opportunity is not deserving of any Americans’ support.

Arthur Caplan is director of the Center for Bioethics at the University of Pennsylvania.

MORE FROM BREAKING BIOETHICS

Breaking Bioethics Section Front

Coherent after coma? Not so sure Mammogram advice accurate but not ‘right’ Opinion: Swine flu response dismal at best Spinning the globe offers lessons in health care Health debate turns vile with Nazi analogy Doc shortages to deficits: Reform reality check Top doc post is a big job for a big lady Details, schmetails: Think big on health care Opinion: Did Steve Jobs’ wallet cut organ wait? Opinion: Court has the right to insist on chemo Breaking Bioethics Section Front   Add Breaking Bioethics headlines to your news reader: