Editorial: The Right to Refuse
C Parmley. Editorial: The Right to Refuse. The Internet Journal of Emergency and Intensive Care Medicine. 2002 Volume 7 Number 1.
Widely accepted is the concept that human beings have the right to refuse. Compelling humans to act contrary to their wishes can often be accomplished by establishing a competing wish, such as money; the wish for money overpowers their other, contrary wish. We well know that torture and other forms of coercion also are means of compelling humans to act in a manner contrary to their withes. In the extreme, this might be seen as a corollary the right to die; I might choose to suffer torture and die rather than act contrary to my wishes.
The right to die, or to choose not to live rather than accept some aspect life has to offer, in some ways lies at the foundation of medical practice. As healthcare providers we seek to preserve life, restore health, and relieve suffering. In the process of so doing though, we are to make certain that the treatment we are providing is properly directed at an endpoint that is acceptable to our patient. Most often it is, as long as we are seeking to preserve life. At times though, with terminal patients who are suffering intensely, the prolongation of life does little more than lengthen the time they experience pain. Thus, their refusal of a treatment that might prolong suffering is understandable and acceptable; a focus on the relief of suffering makes sense.
Dealing with issues presented by the Jehovah's Witness trauma victim are very similar, although philosophically more problematic for some. When an otherwise healthy individual might die due to exsanguinations, and healthcare providers have resources available that could readily preserve life, it is difficult to refrain from acting even when a patient refuses. While it is nearly reflex behavior to act in a manner that would sustain life, we must respect the patient's right to refuse treatment that for some reason is unacceptable. The patient must clearly understand the consequences of refusing the treatment, just as patients must understand the consequences and potential complications of treatment they accept.
For me it is much more problematic when handling this quality of consent matters through a surrogate decision maker on behalf of an incompetent patient. I have worked with Jehovah's Witness trauma victims whose blood transfusion was refused on their behalf by a family member, only to find from the patient who thereafter regained consciousness, that he certainly would choose a blood transfusion rather than death. Even more troubling is the situation arising when the child of Jehovah's Witness parents is in need of blood products. Who can tell whether or not a child will ultimately accept the religious convictions of the parents, and if so, to the extent that death would be chosen over certain medical treatment options? Are the parents' religious beliefs and right to refuse treatment more compelling than the child's right to live?
One could argue that the child has a right to live to an age where he/she might make such a decision on his/her own. This argument may find its way into the legal system where a judge may or may not, allow healthcare providers to administer blood products contrary to the parents' wishes. At times parents are relieved that this extremely difficult decision is taken from them, and that the child might thereby survive. On the other hand, I have been told that at times the religious family may treat a child as a sort of outcast after blood products have been administered. If such treatment occurs, it might be considered the price of survival, which nonetheless would have significant impact on emotional development.
In the Texas Medical Center, known to be the largest aggregate of medical resources in the world, there is considerable experience in providing treatment for Jehovah's Witness patients without the administration of blood components. This includes treating victims of multiple traumas and performing cardiovascular surgery. There are a variety of options available to facilitate management of these patients in a manner consistent with their religious beliefs. Meeting with religious leaders has helped develop a set of fundamental understandings.
As the author of “Resuscitation of a Jehovah's Witness with multiple injuries without blood: Right to die?” indicates, informed consent is the foundation upon which to build. As a physician I have a duty to offer treatment I believe is proper - that treatment which a patient can accept or refuse. I cannot compel a patient to accept treatment I deem necessary, and likewise he/she cannot compel me to act contrary to my principles. I do not have to accept the responsibility of treating a patient who will refuse my recommendations. However, once I have entered into the doctor-patient relationship my duty is to provide care consistent with the patient's wishes, or to help him/her find a physician willing to do so.