Autonomy is a bedrock ethical principle in medicine that has supplanted medical paternalism. Patients have a right to make their own medical decisions and are entitled to know the advantages and drawbacks of all reasonable options. Clearly, informed consent cannot be given if the patient is only partially informed or has been given a slanted presentation by the physician.
When a patient does not have the capacity to provide consent, then a surrogate is used. This individual is charged to make the decision that the patient would have made if the patient were capable of doing so. Some argue that the surrogate should decide on what he feels is in the patient’s best interest, which may be different than what the patient would have preferred.
Can Christian Scientist parents deny lifesaving treatment to their children? The courts have properly ruled for the children in many of these cases. These decisions may be traumatic for loving parents who feel that conventional medical treatment may cause an irrevocable spiritual catastrophe. Is the situation more complex if the child is 15 or 16 years old and does not want surgery or chemotherapy? What about a 17-year-old?
I was asked to see a patient recently who was profoundly anemic, having lost about 2/3 of her blood. Ordering blood transfusions would have been a reflex for any physician. The patient was a Jehovah’s Witness. Practicing Witnesses will refuse blood transfusions even at the risk of their lives. I have treated many of these individuals over the years and respect their right to make informed medical decisions. This patient, however, was mentally retarded and her sister was making decisions on her behalf.
At the sister’s request, no blood transfusions were administered and the patient survived. I wondered if this case was ethically problematic as the sister was denying care that may have been lifesaving to a patient who could not express an opinion on the issue. Perhaps, she would not have wanted to die or might not have been a practicing Witness at all. Should the sister, despite noble intentions, have been entrusted with this decision?
I think that had we decided to ask a court to rule on this issue, that blood may have started to flow.
Michael Kirsch is a gastroenterologist who blogs at MD Whistleblower.