When a patient is unable to make medical decisions that need to be made or when a conflict over these decisions needs to be resolved, common sense suggests that only those directly involved with the patient should participate. In the two cases described below, families that sought to stop unwanted treatment for their loved ones found out otherwise. After successfully fighting their way through the courts and assuming their ordeal was over, these families were thrown back into court by an uninvolved "third party" who challenged their hard-won right to make decisions. Eventually, these challenges were denied, but not before extending the legal process and adding to the families' emotional and financial burden.
Sue Ann Lawrance
In the late 1950s, nine-year-old Sue Lawrance suffered permanent and severe brain damage after surgery for a brain tumor. In 1987, Sue fell and brain surgery again was required. After surgery, Sue was in a permanent vegetative state, maintained by artificial nutrition and hydration.
According to Sue's sister Lynn, her family hoped for improvement for some time. After several years, however, they realized that Sue's situation was hopeless and they sought to have her treatment stopped. Although the family, physicians and clergy were all in agreement, the nursing home wanted a court order authorizing the removal of treatment and absolving the facility of any related liability. In March 1991, Sue's parents petitioned in trial court to have her feeding tube removed. At the hearing, her parents and four siblings expressed their agreement that artificial nutrition and hydration should be withdrawn. Sue's physicians agreed that she was in a permanent vegetative state and stated their support for the family's decision. In May, the trial court found for the family and cleared the way of all obstacles to the removal of treatment. Sue was transferred to a hospice where artificial nutrition and hydration was stopped.
Nearly two weeks later, a member of a group called the Christian Fellowship for the Disabled petitioned in Superior Court for an emergency guardian to be appointed so that treatment could be resumed. An emergency guardian was appointed who resigned shortly thereafter and was succeeded by an attorney with the National Legal Center for the Medically Disabled and Dependent, a federally funded legal service agency. The Lawrances were forced to resume artificial nutrition and hydration pending hearing by the Indiana Supreme Court. Although the Indiana Supreme Court expedited consideration, a ruling was not received until September 1991. Sue died in July 1991, still connected to the feeding tube.
Lynn Lawrance expresses the family's pain and outrage about the unexpected intrusion of the third party. "How could these people know or presume to know what was best for my sister when they had never even met her? These people were imposing their agenda on our family. How could the court take them seriously? These people were allowed to intervene in what we felt should have been a private family matter and the federal government was actually paying the bills for some of them."
The Indiana Supreme Court decided in favor of the family. It also ruled that an emergency guardian never should have been appointed and that, in the future, "strangers need not apply." Its ruling makes it much less likely that families in Indiana will suffer the intrusion of representatives of special interest groups with no relationship or connection to the patient.
For the Lawrance family, the ruling came too late. Their emotional and financial ordeal had been protracted by months. They were forced to watch Sue die connected to life support systems-the very condition they had hoped to spare her. The family's private pain and grief became the subject of much unwanted publicity. They were subjected to all manner of hateful expressions from third-party interveners who did not know them or Sue and did not care about the circumstances of the case.
Christine Busalacchi
Peter Busalacchi's struggle to stop his daughter's unwanted treatment ended only when an election brought a new attorney general to his state. But even then his ordeal was not over, outside third parties continued to interfere.
The tragedy began on May 29, 1987, when seventeen-year-old Christine Busalacchi was involved in a serious car accident. To relieve pressure a large portion of her brain was removed; to provide nutrition and hydration a gastrostomy tube was inserted into her stomach. Her physician said it might take as long as a year for any improvement.
Christine was placed in rehabilitation. After only six weeks of therapy, the rehabilitation center told Mr. Busalacchi that Christine was not a candidate for continued efforts and should be transferred to a nursing home. Mr. Busalacchi still hoped that intensive therapy could help Christine and transferred her to a state hospital facility. After a few weeks, they too advised that Christine's condition would not improve. Again, transfer to a nursing home was recommended.
One year after Christine's accident Mr. Busalacchi began to consider letting her go. He talked with as many people as he could seeking help from physicians, priests and ethicists, all of whom affirmed the principle that when medicine has nothing further to offer a person, it is appropriate to stop treatment. Gradually, Mr. Busalacchi concluded that continued treatment would not help and that he was keeping Christine in a condition she never would have wanted.
However, Christine was in the same Missouri facility as Nancy Cruzan, and the Cruzan family's legal efforts to get Nancy's treatment stopped - which eventually went all the way to the U.S. Supreme Court - dominated the media. Knowing it would be impossible to get court permission to have Christine's treatment stopped, Mr. Busalacchi attempted in 1990 to move her to a facility outside of Missouri where the treatment could be stopped legally. Officials of the rehabilitation center and the Missouri Department of Health filed an action to block the transfer. Throughout numerous court hearings and occasional lower court victories for Mr. Busalacchi, the attorney general and governor of Missouri were determined to block the transfer. Mr. Busalacchi, just as determined, was prepared to continue up to U.S. Supreme court if necessary. "There was no way I was going to quit on my daughter."
Fortunately, an election was pending in Missouri, and one candidate for attorney general pledged that, if elected, his first act would be to drop the state's appeal against Peter Busalacchi. This candidate won, and true to his word, the appeal was dismissed. Mr. Busalacchi was free to move Christine out of state, but his problems were not quite over.
Four days after the case was dismissed, a judge accepted a petition for guardianship from a total stranger and granted a ten-day restraining order, which was dismissed at the end of ten days. Christine died shortly thereafter. Although Mr. Busalacchi says he was not concerned that the challenge would prevail, he admits that "one gets tired of being second guessed, harassed, and criticized. It hurts. These people didn't care about Chris. They didn't want to know who she was like or what she wanted. They cared only about what they wanted."
Is There A Solution?
These painful cases illustrate that third-party interventions may not determine the outcome of any case. But they inevitably extend the suffering of those confronting painful decisions. By their very nature, third-party interventions do not reflect genuine differences among those caring for a patient, but typically are used to further a particular political agenda. What's the solution? One approach would be effective surrogate decision making laws that offer decisionmaking structures for individuals who never could or did not make their wishes known. These laws could go a long way to assuring that innocent patients and their loved ones do not become the pawns of other people's political agendas.
Third-Party Intervention and the Law
Many of the people who call Choice in Dying for assistance with a difficult end-of-life situation tell us they are afraid their family's problem will become public. Often their concern is that a third party who does not know them will get involved, complicating what already is a difficult decision.
How real is this fear? Not very, if the individual has a written advance directive or lives in a state that clearly authorizes families to make life support decisions. In that event, the law usually specifies that only individuals who are personally related to the patient or who are directly involved with providing medical care can legally challenge medical treatment decisions. These statutory provisions follow a rule of law called "standing." This rule ensures that only individuals with a "real interest" are involved in litigation.
However, if the individual has not left a written advance directive and no state statute authorizes the family to make life-support decisions, third parties who have only an ideological interest in a right-to-die case can petition a court to make themselves the patient's guardian. The third parties often argue that they must intervene to protect the individual from potential abuse. For a variety of reasons, however, patient abuse is unlikely to occur. For one, most families know what an incapacitated member would want and will strive to do what is in the person's best interest. If the family is not acting in the patient's best interest, others who are close to the patient, such as friends, can legally challenge the family's decisions. Second, health care providers must operate under a number of professional and regulatory standards that require careful review of a family's decision to stop life-support. Third, most health care facilities have policies and procedures that would prevent a family from making medical decisions contrary to a patient's wishes or not in the patient's best interest. For example, most hospitals have ethics committees that review difficult life-support decisions. In addition, health care facilities will refuse to honor a family's treatment request if the facility believes the potential for liability exists.
In most right-to-die cases in which an ideologically motivated individual has attempted to intervene, the courts have ruled against giving them standing. Even when a court-appointed guardian is required legally, the guardian should be someone who keeps an open mind and considers the wishes and needs of the patient as an individual. A guardian who bases decisions on a particular ideology, such as the right to life, rather than on evidence of the patient's wishes or what would be in the patient's best interest, is not fulfilling a guardian's intended role.
When a court grants standing to a party, families find themselves forced into the judicial and media spotlight with their actions and motives called into question. Even the strongest families are ill prepared for the emotional strain of a trial, and the average family cannot afford the legal fees that accrue as the result of a prolonged court battle. Ultimately, however, it is the patient who suffers most when forced to continue on medical treatment he or she never wanted.
What can be done to limit the involvement of third parties in medical decisions? One solution is to create legislation that clearly defines who has a legitimate interest in making treatment decisions. And of course, those who are able should complete a written advance directive, which would prevent questions about treatment wishes from arising in the first place.
Source: Choices, the newsletter of Choice In Dying, Inc.