In Bioethics we learn that the patient has a right to make autonomous decisions. There has, however, been a bias built into to applicable legislation in many states, which interprets “autonomy” as the dignity to refuse treatment and avoid what is termed a protracted death. This slant on autonomy and the right to refuse treatment can cause some patients to be fearful of having an advanced directive, or, cause death due to withholding of artificial life support when not intended or requested by the patient.
It is not, the job of Bioethicists to emphasize the right to refuse treatment, but instead the right to deliberate after being fully informed on all important issues risks, alternative methods of treatment, and quality of life expectations.
Similarly, it is not the job of a Bioethicist to assist in effectuating the perspective or opinion of a patient’s physician, but rather to educate the physician during times of conflict as to the applicable ethical precepts and legal requirements.
We use the word “autonomy” not as a conclusion, but as a starting of point, not to merely ask the patient what they want to do, or a surrogate decision maker what they think the patient would see as best, but to begin a process of communication including all consulting opinions and discussions of cultural and religious and personal beliefs about morality, human rights and fundamental ethical treatment and respect for the patient. This is where we may find what is really meant by the word dignity.
So, autonomy is a concept intended to inform our approach to the patient as well as a basis to confidently respect a patient’s perception of their own life. It is critical for us to understand the ability to proceed and understand, and the actual potential of deliberating on medical decisions by a patient. These issues must be sorted out, not assumed. The degree of explanation to a patient, and the duties of the patient’s physician, changes with each patient, the unique effects of the disease or illness in terms of the patient’s experience and quality of life. Issues of undue influence must a part of our consideration, including pressures from family and financial motivations on the part of utilization reviews and the like.
How do we educate the patient’s surrogates in their acceptable role and duties?
When should we decline to follow the apparent wishes of the patient, or the stated desires of the family?
When is it appropriate to exercise what is known as the “therapeutic privilege” and turn to a more paternalistic approach to patient care?
Each of these questions may open up a Pandora’s box of problems, but nevertheless must be confronted with the assistance of Bioethics consultations, mediations, and assistance from appropriate consulting physicians.