Right to Autonomy and Self Determination

In early 2005, a shocked and empathetic nation watched the private and personal drama of a family in conflict play out on national television, as the parents of quasi-comatose Terri Schiavo fought with her husband over whether to remove her from life support. Ultimately, the husband prevailed, on the notion that his wishes to remove life support were consistent with what she had told him she would want. His sworn testimony was contrary to that of her parents, and the entire controversy served to remind persons of the need to communicate their wishes prior to an emergency which may prevent them from communicating.

Considered one of the most important and fundamental of all is patients’ right to direct the medical treatment they choose to receive or reject. Patient “autonomy” or self-determination is at the core of all medical decision-making in the United States. It means that patients have the right and ability to make their own choices and decisions about medical care and treatment they receive, as long as those decisions are within the boundaries of law. There is a legal presumption that they are fit and competent to make those decisions until a court determines otherwise.

But what happens when they are suddenly incapacitated and unable to express their wishes regarding their medical care? Thanks to a few historical developments, they can now pre-determine the medical care they wish to receive in the event that they become incapacitated by mental or physical injury or condition. By making their wishes and directives known to their doctors and others before they might suffer the loss of fitness or competency, they are able to avoid the circumstance of a court being forced to second-guess what is best for them or what their wishes would be. Additionally or in the alternative, patients may delegate to another person the power to make these medical decisions for them, should they lose consciousness or competency in the future.

These two concepts sound redundant but are actually quite different. In the first instance, patients have declared in advance the medical treatment they wish to receive in the event that they can no longer express those wishes (commonly referred to as a “living will”). In the second instance, patients have authorized another person to make those medical decisions for them in the event that they can no longer make themselves (commonly referred to as a “health care proxy,” or “durable power of attorney for health care.”) Additionally, most “living will” documents address medical care and efforts in the event of life-threatening or terminal conditions. Durable powers of attorney generally address medical decision-making in any circumstance where patients are unable or not competent to speak for themselves, whether the condition is temporary or permanent.

The modern trend has been to create a “hybrid” of the above, which combines a declaration of the patients’ own wishes with an appointment of a durable power of attorney to make decisions for them (which must be consistent with their declared wishes). Any or all of these legal devices are generally referred to as “advance directives for health care.”

The Uniform Health-Care Decisions Act (UHCDA), approved in 1993 by the National Conference of Commissioners on Uniform State Laws, constitutes such a “hybrid” law intended to replace the fragmented and often conflicting laws of each state. Because existing laws (often several within each state) must be separately reviewed and compared to those provisions comprehensively collected under the umbrella Act, adoption has been slow. As of 2001, only six states had adopted the Act to replace their existing statutory provisions (Alabama, Delaware, Hawaii, Maine, Mississippi, and New Mexico) but dozens more have modeled their own comprehensive health care acts after the UHCDA.

Of course, advance directives are useless unless individuals provide copies of them to their doctors and their families or attorneys-in-fact, while they are still competent and before any incapacitation arises. Otherwise, medical personnel cannot effect their wishes if they are not made aware of them. Importantly, individuals should also keep a copy at their residence, in the event an ambulance is called on their behalf if a medical emergency arises. Without direction, ambulance personnel may initiate life-sustaining procedures that are contrary to their wishes. This is often the case for terminally ill patients who choose home hospice care and have not made other persons aware of their advance directives (even though their treating physicians may be aware of them).

One more note: if individuals do not execute an advance directive in any form, many states have passed “surrogate consent acts” which mandate the priority of surrogates permitted to make decisions about their care, should they be incapacitated.