From Manuscript;
The Patient Self-Determination Act: Meeting the Challenges in Patient Care
Copyright 1998 Lawrence P. Ulrich, Ph.D.

 In January of 1983 Ms. Cruzan (age 25) suffered severe injuries as a result of an automobile accident. The estimate was that her brain had been deprived of oxygen for about 20 minutes and this anoxia left her in a persistent vegetative state. She was not ventilator dependent but was dependent on a gastrostomy tube to deliver nutrition and hydration.

In 1985 her parents petitioned the Probate Court to remove her gastrostomy and allow her to die a natural death. They claimed that Ms. Cruzan had indicated on several occasions that she would not want to live in this kind of condition and would not want continued nourishment from a gastrostomy. The trial court seemed to interpret loosely Missouri's clear and convincing evidence standard for the removal of life-sustaining treatments from an incompetent and accepted the testimony of her parents and her friends as sufficient evidence of Ms. Cruzan's wishes. Accordingly, the Court ordered the gastrostomy tube removed.

The Attorney General appealed the decision and the case went directly to the Missouri Supreme Court which overturned the lower court with its decision in 1988. In this decision the State Supreme Court discounted the testimony about Ms. Cruzan's wishes. It stated that her verbal statements did not constitute clear and convincing evidence, according to the State's public policy standards, which would be necessary to discontinue the gastrostomy feedings. The Court also held the gastrotomy feeding not to be medical treatment; it was not treatment of a disease but rather was sustaining a life which could continue for thirty more years. The most telling part of the decision was the position that, because Missouri had taken such a strong policy stand in its Living Will statute favoring life regardless of its quality, the State's interest in preserving Ms. Cruzan's life outweighed her right to privacy and her right to refuse treatment, particularly when there was any uncertainty about her wishes. In summary, the Missouri Supreme Court went against the decisions in Quinlan, Bartling, and Brophy as well as a host of others which had been decided by various states between 1975 and 1988.

The case was appealed to the U.S. Supreme Court which agreed to hear it in 1989 as the first such "right to die" case which it has reviewed. The decision was handed down on June 25, 1990 at the conclusion of the Court's term. The Court held that the U.S. Constitution does not forbid Missouri or any state from adopting a clear and convincing evidence standard of an incompetent patient's wishes if life-sustaining treatments are to be withdrawn. It also held that competent persons have a liberty interest guaranteed by the 14th amendment to refuse any and all medical treatments. However, this interest must be balanced against relevant State's interest. An incompetent patient may not have the same right to refuse treatment because of the lack of informed consent; but surrogates may be empowered to make such decisions for patients. The Court further ruled that the State may refuse to consider the patient's quality of life in decisions to terminate treatment. Finally, the Court ruled that the Constitution does not require that family members automatically become authorized surrogates in cases like Ms. Cruzan's. States can impose their own requirements for surrogacy.

In its decision the Supreme Court acknowledged a number of powers which patients have in the current healthcare climate. They are powers related to the participation of patients in their healthcare decisions whether they are competent or not. The right of the competent patient to refuse any and all treatments is central to its analysis of the Cruzan case. While the Court did not go as far as many state courts had previously done in grounding the right to refuse treatment in the penumbral right to privacy (1st, 4th, 5th, 9th, and 14th amendments), the Court did ground this right in the Constitution, namely in the Due Process Clause (14th amendment). Thus, it is now clear that after Cruzan patients can be said to have a constitutionally based right to refuse treatment regardless of the number of amendments which are used to support it.

The decision underscored the importance of informed consent as central to the decisional process in healthcare. Informed consent is essential for competent patients who are immediately facing a particular healthcare decision and those who need to anticipate healthcare decisions in the future. One can infer from the Court's decision that patients even need to be informed to some extent about the option of drafting advance directives to cover future contingencies.

The Court strengthened the substituted judgment standard in making healthcare decisions for incompetent patients. By placing a strong emphasis on the patient's rights in making healthcare decisions the wishes of the patient take on new importance. For this reason, any attempt to make decisions for incompetent patients must make every effort to make a decision which would reflect the decision the patient would have made if she had been able to do so. However, this standard, as articulated by the Court, may require an explicit indication of the patient's wishes. The drawing of inferences from more tangential statements made by the patient or the patient's behaviors may not be sufficient to qualify as clear and convincing evidence.

The Court's analysis could lead to the conclusion that the best interest test will not qualify for the removal of life-sustaining treatments if the State requires a clear and convincing evidence standard. The best interest test has often been seen as a reasonable alternative when substituted judgment cannot be utilized. Serious questions arise about the use of the best interest test in the traditional practice of medicine as a result of this decision. One interpretation might allow states to abolish the best interest test altogether, a strategy which could prove disastrous for sound medical practice particularly in a climate which is preoccupied with healthcare reform. This excess could lead to the practice of required treatment for incompetents unless the patients have indicated desires to the contrary, or continuing treatment for incompetents unless decisions are made in advance about their termination. Considering the low incidence of advance directives and their lack of specificity an impossible situation would arise if the Court's attitude toward substituted judgment and best interest is taken too strictly.

The Supreme Court accelerated the public and legislative interest in advance directives. These documents which barely six years previously were frequently casually dismissed were given central importance in healthcare. The Court encouraged patients to express their wishes about life-sustaining treatment in advance of decisional incapacity. It indicated that the expressed wishes of incompetent patients must be honored barring an outweighing State interest. Finally, the Court indicated that advance directives can act as clear and convincing evidence of an incompetent patient's wishes regarding life-sustaining treatments if they are specific with regard to the condition which the patient might face and the treatments which might be considered. Unfortunately, this condition may set an impossibly high standard which will have to be revisited or, at least, reinterpreted by the courts.

One remarkable opinion in Cruzan is the Court's consensus identifying tube feedings and hydration as medical interventions. We saw before in both Bartling and Brophy that the controversy about the moral and "therapeutic" status of tube feedings led to many of the complications in those petitions and decisions. Cruzan seems to have laid to rest the judicial issue about the medical status of tube feedings. They are of equal status with CPR, dialysis, surgeries, chemotherapy, etc.

But the decision gives rise to another issue. If tube feedings are legally indistinguishable from other forms of medical interventions, does the clear and convincing evidence standard apply equally to all life-sustaining interventions for the incompetent. What was said above about the best interest test may again be relevant here. For one should not do CPR on every dying patient. Medical standards exempt certain classes of patients from CPR attempts, such as the terminally ill. Evidence is mounting that CPR should not be done on most elderly patients as well. Nor should dialysis be employed in every case of renal failure. Impossible situations can arise if the Cruzan decision is taken too strictly, i.e, if clear and convincing evidence of a patient's wishes can be required before withdrawing or foregoing life-sustaining treatments. For sometimes clinicians simply must act in the best interests of their patients following the appropriate medical indicators for treatment, or nontreatment, in order to avoid harm to the patient. The pursuit of the patient's best interest is a primary concern to physicians regardless of a lack of expression of the patients' wishes.

The major strength of the Cruzan decision is the strong stand which the Court takes toward the autonomy of patients in spite of the restrictions which can be placed on healthcare conditions in those states which have a clear and convincing evidence standard for removing life-sustaining treatments for incompetents. But even in those states the Court has strengthened autonomy by emphasizing advance directives. The focus on patient autonomy again underscores the role of the responsible patient. Patients are no longer to be seen as passive recipients of healthcare but as having a role in making decisions and developing strategies for asserting themselves in healthcare decision-making.

Because of its powerful stand on patient autonomy, Cruzan lays the Constitutional cornerstone for the Patient Self-Determination Act. It also has given a much needed impetus to and respect for advance directives whether they take the form of living wills or appointments under a Durable Power of Attorney for Healthcare. By encouraging patients to use this avenue of decision-making it encourages more extensive participation in healthcare decisions through the process of informed consent, greater reflection on the part of patients, and the exercise of increased responsibility on the part of patients in the clinical situation.

If Nancy Cruzan had had an advance directive her care could have been terminated six and one-half years before it was actually terminated in December of 1990. Unfortunately she is like approximately 85% of Americans who do not have advance directives and like many more who do not have advance directives which meet the strict standards of specificity regarding conditions and treatments to satisfy a rigid clear and convincing evidence rule. With an advance directive Nancy Cruzan could have died without a court battle in most states. Without it she fell into a situation similar to Karen Quinlan, William Bartling, and Paul Brophy.

After the Cruzan decision and the implementation of the Patient Self-Determination Act, patients in the United States are in much better positions when life-sustaining treatments become an issue. The decision and the law give patients authority and strategies to have their wishes followed. It now becomes a matter of implementing the law by healthcare facilities and programs. It also challenges physicians and other caregivers to assist patients in utilizing the law and to respect their decisions. Finally, the law invites patients to take responsibility for their healthcare in new and, often, unfamiliar ways.