The right of self-determination in health care matters is a fundamental human right that has long been recognized at common law.  The United States Supreme Court in Cruzan v. Director, Missouri Department of Health has held that the right exists as part of the right of privacy found within the constitutional guarantee of individual liberty. 

The right of self-determination can be exercised at any time, so that the individual can refuse medical treatment initially or can withdraw consent to such treatment after it has begun.

For individuals who are incompetent, the standard of proof for establishing evidence of their treatment choices differs among the states.

Pennsylvania Standard.  In In re Fiori, the Pennsylvania Supreme Court found the clear and convincing evidence test to be overly restrictive, since it would thwart the individual’s right to determine the medical care to be received if they are in a persistent vegetative state.  As discussed below, in Pennsylvania the substituted judgment standard is used to determine the individual's intent.

The substituted judgment principle is intended to ensure that the surrogate decision-maker effectuates as much as possible the decision that the incompetent individual would have made if he or she were still competent, rather than making such decisions arbitrarily or based on the surrogate’s own attitudes and beliefs.

In exercising substituted judgment, the surrogate is to consider the individual's personal value system, any prior statements about or reactions to medical issues, including end-of-life issues, and all the aspects of the individual's personality that the surrogate is familiar with, to arrive at what course of medical treatment the individual would have chosen.

In Fiori the Pennsylvania Supreme Court upheld substituted judgment as the proper approach to take in cases where an incompetent individual has not left instructions as to the maintenance of life-sustaining treatment. The court recognized that the only practical way to prevent the violation of the incapacitated individual's right to refuse medical treatment is to allow a substitute decision-maker to determine what measures the individual would have desired.

For the substituted judgment standard to be used effectively, there must be sufficient credible evidence available to the surrogate concerning the individual’s expressions of directions or preferences regarding the types of medical procedures or health-care treatment that he would or would not refuse in certain situations.

If there is not sufficient information regarding the individual’s expressed directions or preferences, the surrogate may then employ the best interests standard, i.e., choosing the proposed treatment or medical procedure that is in the best interests of the individual.

The Pennsylvania Supreme Court in Fiori defined the best interests standard by citing a 1983 President's Commission Report that the analysis of the individual’s "best interest" is an objective standard that considers the individual’s relief from suffering, the preservation or restoration of functioning, and the quality and extent of sustained life.  

The Impact of Cruzan. The constitutional issues underlying the right of the individual, even if incompetent, to refuse treatment reached the United States Supreme Court in Cruzan v. Director, Missouri Department of Health, supra. The Supreme Court there recognized that a competent individual has a constitutional liberty right to be free of unwanted medical treatment. However, the Court left to the states the regulation of this right on behalf of incompetent patients. As Justice O'Connor noted in her concurrence:

The Cruzan decision in 1990 proved to be a watershed event, in that its effect was to encourage states to enact legislation that would allow individuals to exercise their right to refuse medical treatment in case they would be later unable to communicate such intentions directly, and to appoint surrogates to ensure that their directives would be carried out. As contemplated by Justice O’Connor, the state legislative "laboratories" became increasingly active. Today, all states have some form of statutory framework that allows individuals to plan for their medical treatment in the event they later become incompetent.

The three statutory solutions that have emerged from states’ efforts to protect the rights of incompetent individuals are:

Living Wills. In the aftermath of Cruzan Pennsylvania enacted its own living will statute, known as the Advance Directive for Health Care Act ("ADHCA"). It allowed an adult individual of sound mind to state in writing his or her wishes regarding end-of-life care and to refuse life-sustaining treatment.

In practice, the ADHCA was found to have several limitations.

Health Care Power of Attorney. Prior to Act 169 Pennsylvania had limited provisions for an agent to make health care decisions for a principal. They are contained within Chapter 56 of the PEF Code, which deals primarily with powers of attorney for financial and property matters. The scope of the agent’s powers in Chapter 56 is limited to anatomical gifts and such routine matters as authorizing admission to a medical, nursing, residential or similar facility, entering into agreements for health care, and authorizing "medical and surgical procedures." These powers, however, do not extend to the right to refuse treatment on behalf of the principal.

Health Care Surrogate. Most importantly, neither the ADHCA nor Chapter 56 addressed the issue of decision-making for those individuals – undoubtedly the majority of the adult population – who have no living will or health care power of attorney.