Making advanced directives about one’s health care is frequently encouraged in our society and, in many ways, that is a good thing. Advanced communication about the kinds of medical treatment a person wishes to receive can be helpful in guiding that person’s loved ones and caretakers to make good decisions in the event that she is incapacitated. Patients have the right to make decisions about their own health care and, when their decision-making capacities are impaired, the wishes they expressed in advance should be respected.
There are limits, however, to a person’s ability to make decisions in advance and the advanced directives of a patient should not be the sole consideration for those who are charged with making decisions about her health care. Some people don’t agree with that. Some wish to promote an understanding of advanced directives according to which the patient’s representative or proxy decision-maker is charged solely with carrying out the advanced decisions of the patient or the decisions that, in the proxy’s judgment, the patient would have made if she were competent to choose. There are good reasons to reject this understanding of advanced directives. Let us consider three of those reasons.
Firstly, decisions made in advance cannot anticipate all the circumstances of future situations. For this reason, those decisions cannot be fully informed. When a person makes advanced directives about procedures that might take place in the future, that person cannot completely envision all the circumstances that procedure will involve nor contemplate the full range of options that may be available at that time. A patient can communicate in advance his wishes and values so that his appointed agents can apply them to the situation at hand. But a patient cannot make a fully informed decision about a situation that he cannot fully anticipate. A patient’s doctors and appointed agents, who are making decisions about that patient’s care in the present, should be making those decisions based, not only on the patient’s advanced directives, but also on their own estimation of what is in the best interest of the patient in the present, unforeseeable, circumstance.
A second consideration, related to the first, is that a person’s decisions about her own life and death will profoundly affect her family members and loved ones. Advanced directives about accepting or refusing health care often fail to take this into account. If you knew in advance that interpreting your stated health care wishes would cause strife in your family, would that affect how you expressed those wishes? One man I know told me that he learned a “painful lesson” from the family divisions that resulted from trying to interpret and apply the advanced wishes of a close relative. After that experience, he said, “I told my wife and children that I would not give them any advanced directives about how to handle serious health-care decisions for me. I told them to make the decisions that would give them peace.” For such a man, who has family members or close friends who are well acquainted with his beliefs, values, and wishes, advanced directives about health care decisions might not be necessary. For many people, making advanced directives about health care can be a good thing. However, the good that they rightfully seek to bring about has not only to do with how they themselves are cared for, but also has to do with the peace and well-being of the people they care about.
Thirdly, proxy decision makers and medical professionals should be treated as free and conscientious moral agents, not as instruments of a patient’s will. One person can rightly be the agent of another by acting according to her wishes and on her behalf. But being the agent of another cannot mean rescinding one’s own moral agency or responsibility for one’s actions. Proxy decision makers and medical professionals rightly seek to carry out the directives of the patient, but not by setting aside their own consciences and moral judgments about what is right and good to do. As a well-respected bioethicist has said, “A person’s representative is guided by the represented person’s wishes, but . . . he or she is not that person’s robot or slave, but has his or her own conscience, and thus a right and obligation to make a practical moral judgement about what is the right course of action to pursue.”[1]
[1] Nicholas Tonti-Filippini, About Bioethics – Volume 2: Caring for People who are Sick and Dying (Connor Court, 2012) p. 135.