By Tippy Irwin, Executive Director
Who makes decisions for clients who have lost the capacity to decide for themselves, in particular those clients that we term “unbefriended,” who have no family or close friends to make those decision for them? In a perfect world, everyone over the age of 18 would have an Advance Health Care Directive (AHCD) naming an agent who will make decisions on their behalf if they should lose the capacity to make their own decisions at a future date. My wake-up call came when the Terri Schiavo case became a media frenzy and the government and churches weighed in on that decision making process. It was only then that I executed my own AHCD naming a person of my choice to make those critical decisions for me when any such situation should arise.
Up till recently, at least in California, Section 1418.8 of the Health and Safety Code (also known as the Epple Bill) has permitted facility interdisciplinary teams comprised of a physician, a registered nurse with responsibility for the resident and other appropriate staff to provide daily decision making for these residents. The law eliminated the need to go to court for very decision which seemed to be totally impractical. In addition it provided safeguards by involving multiple people in the decision making process. In June 2015 this law was challenged in the Alameda Superior Court and was found to be unconstitutional. One of the biggest issues raised in this challenge is that decisions were being made by the treating health care providers who had financial interests in the outcome.
So what is to happen now? If informed consent cannot be obtained due to a resident’s incapacity and/or lack of a legal responsible party, the facility should pursue authorization from a court via conservatorship — a much more cumbersome process, but one which provides much greater protection for the client.
The capacity to make one’s own decisions is fundamental to the ethical principle of respect for autonomy and is a key component of informed consent to medical treatment. Determining whether an individual has adequate capacity to make decisions is therefore an inherent aspect of all clinician-patient interactions. However, if a patient deemed by a physician to lack clinical capacity expresses a preference regarding a health care decision, the physician is not entitled to override that preference unless a court also deems the person lacks legal capacity to make that decision. From this it can be seen that in fact the determination of the right to make one’s own decisions is a medico-legal determination, and not simply one or the other.
It remains to be seen what will happen now that the Epple Bill has been set aside. How much more burden will this new decision place on a system that is already running at capacity? Just how will our Office of the Public Guardian be able to absorb more cases, and just how many more will there be as a result of this decision? These are all questions that remain to be answered as we move forward.