A person has a right to refuse medical treatment. For example, you may have acute appendicitis and choose not to have the appendix removed, even if death is inevitable. This is what is meant by patient rights.
But you don’t have the right to demand treatment if it is medically futile. You can’t, for example, demand that your appendix be removed if there is no sound medical reason to do so. This is what is meant by professional judgment.
This seems straightforward enough, but ethical difficulties abound on a regular basis. Often patients aren’t capable of expressing their own wishes, so it isn’t clear if the person wants to continue life support; and families often, understandably, demand that everything be done to prolong their loved one’s life, even though doctors deem the procedure as useless. Disagreements between patients and doctors in this regard aren’t uncommon.
A recent article in the medical journal Lancet about the consciousness of vegetative patients complicates the matter. Researchers report evidence that some (a few in a very small sample) who are permanently unconscious—what is called a ‘persistent vegetative state’—are, in fact, capable of a modicum of consciousness. EEG images show brain activity in some when asked yes/no questions and told to imagine making a fist or wiggling their toes.
The study provides credence to those who believe those in vegetative states can hear them but not speak, think but not communicate. Now we know that that some vegetative patients are, in fact, minimally conscious. It is easier to terminate life support when the patient is unambiguously brain dead than it is for someone who shows brain functioning. Who knows but that Terri Schiavo’s husband may have agreed with his wife’s parents if, indeed, she responded to questions.
But this study doesn’t alter the basic philosophical questions about termination of life-support systems. Most end-of-life decisions revolve around quality of life matters. What kind of life does the patient wish to have? If they could speak for themselves, would these patients want to continue treatment or let nature take its course?
Patients in vegetative states who exhibit consciousness cannot answer these questions. These are the heart-wrenching decisions that are left to next-of-kin or surrogates.
Miracles (extraordinary events that defy the odds)do occur, but by definition they are rare. Do we now postpone the inevitable because the EEG shows some activity when the patient is asked a question? The problem with this information is that it may well offer false hope.
If anything, the study underscores the importance of us all making known our wishes about extraordinary care and having a healthcare proxy. We owe it to others not to add to their burden when they are already halfway to grieving.