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In the 20 years since the New Jersey Supreme Court decided the case of Karen Ann Quinlan, the right to refuse medical treatment has evolved dramatically. Among the social and legal development following the Quinlan decision have been the passage of advance directive legislation in 50 states and the District of Columbia, the development of formal ethics committees in health care facilities, a growing acceptance of withdrawing tube feeding, and, more recently, strong public support for the idea of physician aid in dying. Experts have noted a legal trend in the right to die movement. In a number of cases families law suites against health care providers for disregarding patient wishes. A court decision that wards damages to one of these families could have a significant impact on how health care providers consider advance directives in the future.

Law and medicine after Quinlan

Following the Quinlan decision, the law began to play an important role in end-of-life medical decisions. Today, every state legislature and nearly half of the state appellate courts have acknowledged an individual's right to refuse medical treatment, even when the refusal will result in death. The issue reached the federal level in 1990 when the U.S. Supreme Court recognized a constitutional right to refuse treatment in Cruzan and Congress enacted the Patient Self-Determination Act, requiring nearly all health care providers to inform patients about their right to forgo unwanted treatment.

Despite this proliferation of advance directive laws and court decisions concerning the right to refuse treatment, adequate protection of this right has not been fully achieved in the clinical setting. Its is important to note that courts and legislatures over the past two decades, including the New Jersey Supreme Court that wrote the original Quinlan decision, have said that physicians may withdraw or withhold life support. In fact, a majority of living will statutes in the country explicitly or implicitly acknowledge the provider's "right" to not comply with a directive that he or she finds morally, religiously, or professionally inappropriate.

In general, the process whereby a provider may withdraw treatment according to a patient's wishes is well established, but there is little risk to a provider who chooses to ignore these wishes. In fact, providers essentially are rewarded for noncompliance because they continue to receive reimbursement for their services, even when those services were explicitly rejected. The weakness of existing legislation in this regard can be remedied and, in fact, several cases that may contribute to a solution are making their way through the legal system.

Solutions

Clearly, there are individuals across the country who are willing to take legal action against physician and hospitals for ignoring patient's wishes. In a case before the Supreme Court of North Carolina (First Healthcare Corp. v. Rettinger) a nursing home faces a lawsuit that could require the facility to pay for unwanted treatment provided to a patient against the instructions in his living will. Recently, the Flint Journal in Flint Michigan reported that a jury awarded $16 million to a brain-damaged woman and her family who sued a facility for keeping the woman alive against their wishes.

These case, one of which is discussed in more detail below, could have a significant impact on the behavior of health care providers throughout the country. As health care providers become more aware of the negative consequences they face for ignoring a patient's right to forgo unwanted life-sustaining treatment, they hopefully will become more responsive to patient's wishes. Until that time, we can expect a rising number of legal actions alleging battery and other damages for the provision of treatment that patients never wanted to receive.

Although lawsuits are likely to play an important role in shaping the behavior of health care providers, legal action is only appropriate in a very rare number of cases. when conflicts between providers and patients arise, litigation is a costly and time-consuming option that often can be avoided through negotiation. Communicating early and often with your health care provider is an important step you can take to ensure that your end-of-life care reflects your own values. By clearly discussing your wishes and documenting them in an advance directive, you can help ensure that fewer conflicts over treatments decision arise in the first place.

The Case of Linda S.

by Montie S. Day, Esq.

...over the objections of Lee, medical care providers decided to ignore the directive and take heroic medical actions with hopes of saving Linda's life at all costs and without regard to the authorized directive.

Linda S, a mother and wife, has filed suit through her conservator, along with her husband, against her treating doctors and hospital in California. This case seeks to recover medical expenses incurred for undesired treatment rendered after a valid decision was made to withhold life support. But the damages in the case and the liability upon battery, invasion of privacy— , interference with personal relationships and violation of Linda's constitutional rights.

In 1987, Linda and her husband, Lee, in planning for their own as well as their children's futures, decided that neither desired to remain alive if the burdens of medical care were likely to exceed the benefits of such care. This loving commitment between married adults was given serious thought, each considering the other as well as their two children. Under California law, each granted the other a Durable Power of Attorney for Health Care, authorizing each to make health care decisions if one or the other was incapacitated.

In 1994, Linda feel ill, suffered seizures, impaired vision and loss of hearing, and was hospitalized. Although her exact diagnosis could not be established, it was suspected that she suffered from a Jacob Cruetzfeld, a fatal disease. Her treatment continued, although she was returned to her home with no conclusive diagnosis. Within a short time, Linda again suffered from seizures and was readmitted in a semicomatose state on
September 29, 1994, six months following the onset of the disorder. On admission, the doctors told her husband that Linda had sustained brain damage and was dying, and they expressed no hope that she could ever return to a normal life. Because Linda was unresponsive and unable to make decisions about her health care, medical care providers requested the power of attorney. Under the power of attorney and after discussion with his family, Linda's husband decided to withhold life support and allow Linda to die in peace.

However, over the objections of Lee, medical care providers decided to ignore the directive and take heroic medical actions with hopes of saving Linda's life at all costs and without regard to the authorized directive. Medications and life-sustaining fluids were given. Although surprisingly Linda survived the ordeal, she was diagnosed, without possibility of recovery, with MELAS Syndrome, a genetic disorder that produces a very painful and prolonged death. The disorder generally leads to increased seizures, diabetes, muscle failure and brain damage, including loss of memory, eye sight and All these symptoms continue to worsen and eventually lead to heart or kidney failure.

Linda survives, but her mental capacity is limited due to the brain damage, and she requires constant supervision while treatment that awaiting the onset of further pain, misery leaves the patient and, eventually, death. Her husband is with continued is her caregiver, and the family resources are being consumed by medical expenses and care.

The Supreme Court has held that an future suffering, adult has the absolute right to make other was incapacitated should not the medical decisions that relate to his or her own body and that, .like any right, the right to make medical decisions can be delegated throughout the power of attorney, When this right, guaranteed by the U.S. Constitution, is denied, resulting damages are tremendous and reach far beyond medical expenses, affecting the quality of life for the patient and family and all other aspects of family life for the future.

The case of Linda S. goes beyond the right guaranteed by the laws and Constitution to the remedy. If a health care provider chooses to ignore a patient's wishes and render unwanted medical treatment that leaves the patient with continued medical expenses, anguish, pain and future suffering, should not the provider be liable not only for the medical expenses but for all damages? This case traverses uncharted waters seeking "remedies" for the wrongs created when a patient's right to refuse treatment is not respected.