Terri's Legacy: Ensuring Your Medical Care Choices are Honored

March 27, 2005

By now, most people are aware of the dramatic struggle involving the life — and death — of Terri Schiavo, the young Florida woman who suffered extensive brain damage over 15 years ago when her heart stopped. For over 10 years, Terri's husband, Michael and her parents have been waging a battle in the courts, in the legislature, and in the press over the question of who has the right to determine Terri's wishes regarding her medical care.

Terri has been diagnosed as being in a persistent vegetative state, which describes a body functioning entirely in terms of its internal controls. Her body maintains temperature, heartbeat, respiration, and digestion on its own. She demonstrates various forms of spontaneous movement but no behavioral evidence of self-awareness or awareness of her surroundings. Because she is unable to swallow, Terri receives food and water through a stomach tube. With the tube withdrawn, as her husband desires, she will slowly die. If the tube is replaced, as her parents wish, she will most likely remain in this uncertain state for many years.

This past week, the United States Congress passed, and the President signed, a law requiring Terri's case to be evaluated in federal court. This unprecedented federal intervention into a matter that is normally left to state courts has proved profoundly troubling to a significant majority of Americans, over 70% of whom view this as government intrusion into a matter that should be left to the privacy of the family. On the other hand, those who are advocates for the disabled view this as an important assertion of Terri's rights. Regardless of your personal feelings about Terri's situation, it is important to understand the underlying reason this particular case has played out in such a contentious manner.

Like many adults in the U.S., Terri left no written indication of her wishes regarding her medical care. As a result, the various family members are fighting with each other for the right to impose their interpretation of Terri's wishes. Sadly, Terri's case would long ago have been resolved had she executed a set of advanced directives — specifically, a living will and/or a medical proxy designation.

If you do not have any form of advance directive, you are not alone. By some estimates, over 75% of Americans have not executed a living will, medical proxy or financial power of attorney. Without these documents, you are relying on others – your family, your husband or wife – to make important decisions about your health, welfare, and even about your right to live or die. When you rely on others to make these decisions for you, their decision may not be that which you would have made yourself. When there is disagreement by family members, as in Terri's case, your failure to choose may result in a lengthy, expensive legal battle that destroys family unity.

Ever since the case of Karen Quinlan, New Jersey has been in the forefront in terms of recognizing a patient's right to refuse medical treatment, even when the refusal is made by a surrogate, such as a family member or designated friend. In 1987, the New Jersey Supreme Court decided three particularly difficult cases dealing with the right to withhold or terminate life sustaining measures for patients who were incompetent. The Court determined that if a person had left some indication of their wishes prior to becoming incapacitated, those directives were to be followed. However, where the patient had left no instructions, their surrogate was bound to determine whether the patient would have wished to refuse or continue treatment.

The results in these cases were codified in the Advance Directives for Health Care Act of 1991. The Act allows competent adults to plan ahead for health care decisions by executing a living will and medical proxy directive. It also provides direction to courts when a decision must be made on behalf of someone who, like Terri, has not left a living will.

The Act also provides that, when a patient has not named a particular person as their surrogate, the court will choose an appropriate individual. Normally, the court will choose the patient's next of kin, with preference being given to the patient's spouse, if any. Once a surrogate has determined the patient's wishes, the decision is not subject to judicial review. Had Terri's case occurred in New Jersey, her husband would have been appointed her guardian, unless he was found to be unqualified. He would be entitled to direct that her feeding tube be withdrawn after obtaining the opinion of two physicians that she was in a persistent vegetative state with no reasonable possibility of recovery. Furthermore, his decision would be final, and no health care facility in New Jersey could refuse to comply, unless clear notice of a contrary policy had been given at the time of Terri's admission. Thus, Terri's unfortunate fate would have been finally determined long ago.

For unmarried couples, whether opposite-sex or same-sex, it is even more important to have written directives, since unmarried partners do not have the same legal right to be named as guardian or medical surrogate for each other. Without an adequate directive, courts in New Jersey will most likely give the decision-making authority to the next-of-kin.

Even registered domestic partners do not have an automatic right unless they have a written directive. The Domestic Partnership Act provides registered partners with the same rights as a married spouse, but only if a written directive is executed. Furthermore, the Domestic Partnership Act did not provide registered partners with a right to be named as guardian. Although a sympathetic judge could make the determination that a domestic partner should be named in preference to a parent or other next-of-kin, domestic partners are legally considered interested strangers with less right than more remote family members.

It is possible that the courts or the government could intervene, as they have in the Schiavo case. Therefore, the best and most reliable way for you to ensure that you are the ultimate master of your fate when it comes to medical care is to execute advance directives that comply with the Act, and to communicate the choices you have made in these documents to your friends and loved ones.