The Family Health Care Decisions Act (FHCDA) would permit an individual's family members, domestic partners, and close friends to make health treatment decisions when that individual no longer has decision-making capacity.
The bill would establish clear procedures for selecting a surrogate, thereby ensuring that an incapacitated patient receives the health care treatment he or she would choose even if incapable of expressing that choice.
New York's common law imposes significant, and often irrational, restrictions that prevent a surrogate from making health care decisions consistent with the wishes of an incapacitated person. This law is the source of great pain and suffering – both to incapacitated persons and to their families and friends.
The FHCDA proposes a more rational and humane approach to providing medical care when a loved one becomes incapacitated – an approach that respects the constitutional liberty interest all persons have in their own health care decision-making.
New York Law Today
A patient is never more vulnerable than when incapacitated by illness and unable to communicate. Allowing a trusted individual to act as a surrogate for the patient is the best way to ensure that his or her wishes are respected.
New York statutes, however, permit a surrogate to make health care decisions only in three rare circumstances: (1) when the patient has previously prepared a health care directive; (2) when a health care agent has been previously appointed by a patient or a court; or (3) when the health care decision involves only cardiopulmonary resuscitation. In reality, families, friends and medical providers are most often faced with medical crises that fall outside these three scenarios.
New York's case law further restricts the circumstances in which end-of-life decisions can be made by a surrogate. In the seminal case in this context, New York's Court of Appeals has ruled that a decision to forgo treatment can be made on behalf of an incapacitated person only if there is "clear and convincing" evidence of the patient's wishes to forgo such treatment. Matter of Storar, 52 N.Y.2d 363, 379 (1981). But this legal standard is so demanding that compelling evidence as to the patient's wishes is often disregarded; and the court (and occasionally, health providers) becomes the enforcer of medical decisions that clearly violate the wishes and the best interests of the patient.
The facts in Storar illustrate the problem. That case concerned a fifty-two-year-old man with profound mental retardation who was dying of blood cancer. He did not like his painful blood transfusions, and, in any event, was expected to die within six months. His mother refused to consent to the continuation of treatment.
The district attorney's office sought to compel treatment over her objections. The court held that under these circumstances a parent's decision to withhold treatment from an incapacitated individual or child – even when based on constitutional grounds, such as religious beliefs – must yield to the state's interests, as parens patriae. Id. at 381.
Faced with this ruling, medical providers are understandably wary of honoring treatment decisions to withhold care absent a court order. Courts generally require proof of prior specific statements by the patient as to the medical circumstances in which the patient would refuse treatment, as well as the specific treatments the patient would refuse. Matter of Westchester County Medical Center on Behalf of O'Connor, 72 N.Y.2d 517, 614 (1988). Even the patient's written expression of a desire to forgo life-sustaining treatment, such as a "living will," may not be sufficient in the eyes of the court to require that medical providers honor the patient's wishes.
Current Law Disregards the Wishes and Best Interests of Incapacitated Patients
Under current law, an incapacitated person is often subjected to intrusive, painful and futile medical treatment – which may continue long after family members have requested that it be stopped. And even when the incapacitated patient's wishes regarding treatment for the medical conditions at issue have previously been memorialized or verbalized before multiple witnesses, protracted litigation may be required before the patient's wishes are honored. Litigation is a cumbersome, painful, and expensive undertaking; it is a mechanism ill suited to resolving disputes over medical care. The following cases illustrate this point.
In 1989, Jean Elbaum, a 60-year-old patient in a nursing home had been in a persistent, irreversible vegetative state with no hope of recovery for more than three years. Over her family's objections, and in some cases without their knowledge, Mrs. Elbaum's health care providers inserted a gastrointestinal feeding tube, administered antibiotics, and provided other treatment.
When the nursing home refused to accede to the family's request to cease artificial life support, Mrs. Elbaum's family was forced to sue. In various court hearings family members (husband, son, daughter and sister) testified that Mrs. Elbaum had responded to the extensive media coverage of the Quinlan and Sonny von Bulow cases by stating repeatedly that she would not wish to be on a respirator or other artificial means of life support.
Nevertheless, the trial court held that Mrs. Elbaum's family had failed to meet its burden of proof and that the state's interest in preserving the integrity of the medical profession outweighed Mrs. Elbaum's interest in declining treatment. The family was then forced to appeal to the Appellate Division.
More than a year after filing their initial complaint, the Appellate Division reversed the trial court's determination and found that the family's testimony did constitute "clear and convincing" evidence that Ms. Elbaum did not wish to be maintained in a persistent vegetative state.
However, the family's legal odyssey was not over. Four and a half years later, the Court of Appeals ruled that Mrs. Elbaum's husband was financially liable to the nursing home for care rendered even after he insisted that treatment be halted pursuant to Ms. Elbaum's wishes.
In the Matter of AB
In 2003, a three-year-old Brooklyn girl, known as "AB," had a seizure, suffered massive brain injury, and fell into an irreversible persistent vegetative state. AB was unable to eat or speak; she was unresponsive to any stimulation. AB required extreme medical intervention for all of her activities.
She needed a mechanical respirator to breathe and other medical devices for feeding and hydration. After consulting with her physicians, AB's mother became aware that her daughter had no chance of recovery and that her case was medically futile.
AB's medical treatment was, in short, merely prolonging her death. AB's mother, relatives, physicians and the hospital administration all agreed that AB's respirator should be removed and that she should be allowed to die peacefully. However, the hospital refused to do so because its legal counsel argued that removal of the respirator would violate New York State law set forth in Storar.
AB's grieving mother was forced to hire an attorney and seek judicial intervention. The court held multiple hearings at which AB's mother was required to testify. It appointed an independent guardian to assess AB's situation, which required that the guardian visit the family home and AB's bedside.
AB's lawyers proffered affirmations and testimony from physicians, bioethicists and other experts in support of AB's mother's case. Extensive briefing was required of lawyers for both AB and the hospital. Finally, in a lengthy opinion, New York State Supreme Court Justice Doris Ling-Cohan ruled that it was in AB's best interest to remove the respirator because:
There can be no state interest great enough to compel AB to remain subjected to this extraordinary life-sustaining measure. To do so would merely prolong the death of a terminally ill child, wholly lacking in cognitive brain functioning, completely unaware of her surroundings, and with no hope of ever regaining awareness, while subjecting her to daily physical intrusions including catheterizations, feeding tubes, IV's and increasing infections.
The FHCDA Protects the Rights of Incapacitated Patients
The FHCDA would eliminate such inappropriate legal intervention in the future by replacing New York's current ad hoc scheme with certainty and efficiency, and the New York Civil Liberties Union believes there is are strong due process and liberty interests that support the legislation's surrogate decision-making procedure.
In addition to ensuring that incapacitated patients receive the medical care they would have chosen themselves, the bill provides extensive protections of patients' rights throughout the process, beginning with the determination that the patient is in need of a surrogate.
The FHCDA prescribes clear procedures for determining when a patient is no longer capable of making decisions regarding his or her medical treatment. To ensure that this determination is free of bias, the procedures require an evaluation by a physician at the treating hospital and by an independent health or social services practitioner.
If a patient disagrees with a determination that he or she is not capable of making health care decisions, the patient's decision stands. Further, a determination that the patient is incapable of making decisions under the FHCDA does not deem the patient incompetent in any other context. Patients and their families need not fear that a surrogate retains authority to act on behalf of patient who recovers.
If it is determined that a patient is incapable of making health care decisions, the hospital must then determine if a patient has completed an advance directive or health care proxy; a court has appointed an Article 81 guardian; or the patient orally appointed a surrogate prior to losing capacity.
If not, the FHCDA permits the appointment of a surrogate, selected by the patient's close relatives, domestic partner or friends, who has knowledge of the patient's values and beliefs and who will make decisions, from a "patient-centered perspective," based on the patient's wishes. If the patient's wishes are not known, or cannot reasonably be discovered, then the surrogate must act in accordance with the patient's best interests.
The FHCDA would further safeguard the patient's interests by referring a disagreement between a treating physician and a surrogate to the hospital's ethics committee. Even after a surrogate has been appointed, any wishes that have been clearly expressed by the patient prior to losing decision-making capacity always take priority.
All but two states – New York and Missouri – have adopted laws or procedures that govern health care and end-of-life decisions for individuals who lack decision-making capacity because of illness or injury. It is essential that the New York State Legislature pass legislation that reflects a more enlightened approach to providing medical care to people who are incapacitated.
The NYCLU strongly urges the passage of A.5406-B.