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Testimony: The Family Health Care Decision Act

Testimony Of Elisabeth Ryden Benjamin, Director, Reproductive Rights Project New York Civil Liberties Union Before The New York State Assembly Committee On Health Regarding The Family Health Care Decision Act, A.5406-A/S.5807

Reproductive Rights Project Director Elisabeth Benjamin testified on December 8, 2005, at the New York State Assembly hearing on the Family Health Care Decision Act.

Testimony in Support of the Family Health Care Decision Act

Good afternoon, my name is Elisabeth Benjamin. I am the Director of the Reproductive Rights Project of the New York Civil Liberties Union (NYCLU). The NYCLU is the New York State affiliate of the American Civil Liberties Union. NYCLU’s Reproductive Rights Project has long served as the legal arm of New York State’s Pro-Choice Movement. The NYCLU has long been devoted to the protection and enhancement of those fundamental rights and constitutional values embodied in the Bill of Rights and in the New York State Constitution. Those rights include the rights of personal liberty and bodily integrity deeply indicated by this bill.

The NYCLU thanks Chairman Gottfried and his Assembly colleagues for convening this hearing to examine the issues of law, public policy and ethics related to health care decision-making for people who cannot make such decisions for themselves.

Brief Summary of the Act

The Family Health Care Decision Act (FHCDA) would permit family members and close friends to make health treatment decisions for people who no longer have decision-making capacity. This change is needed because current New York law permits surrogate health care decision-making only in rare cases.

The FHCDA establishes procedures to choose a surrogate decision-maker and to guide health care decision-making. The FHCDA first requires hospitals to determine if a patient has completed an advance directive or health care proxy, or if a court has appointed an Article 81 guardian, or if the patient orally appointed a surrogate prior to losing capacity. If none of these situations is present, the FHCDA permits the appointment of a surrogate from among the patient’s close relatives or friends who has knowledge of the patient’s values and beliefs and will make decisions from a patient-centered perspective. The surrogate must make health care decisions 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. An assessment of the patient’s best interests includes: consideration of the patient’s dignity and uniqueness; possibility of preserving the patient’s life; the ability to preserve or restore the patient’s health and functioning; relief of the patient’s suffering; and, in the event that the patient is pregnant, the impact of treatment decisions on the fetus and the patient’s pregnancy.

Current State of the Law in New York

Since 1914, New York Courts have found under common law that “[e]very human being of adult years and sound mind has a right to determine what shall be done with his own body.” Schloendorff v. Society of New York Hospital, 211 N.Y. 125, 129 (1914)(Cardozo, J.). New York’s highest Court subsequently recognized the right of an individual with decision-making capacity to refuse unwanted treatment in Matter of Eichner v. Dillon, 52 N.Y.2d 363, 376 (1981) (In re Storar) (under common law) and in Rivers v. Katz, 67 N.Y.2d 485 (1986) (under common law and in the State Constitution’s Due Process Clause). The United States Supreme Court ultimately recognized that individuals with decision-making capacity have a constitutionally protected liberty interest under the Due Process Clause of the Fourteenth Amendment of the United States Constitution to make medical decisions for themselves. Cruzan v. Missouri Dept of Health, 497 U.S. 261 (1990). But the Court left it to the states to legislate under what circumstances health care decisions should be made for individuals who are incapacitated.

Over the past few decades, most states have established legal regimes to guide families and health care providers when making treatment decisions for incapacitated patients. Only New York and Missouri have failed to establish a legal mechanism to govern health care and end-of-life decisions for people who lack decision-making capacity because of illness or injury.

Currently, New York statutes provide for surrogate health care decision-making in three rare circumstances: (1) when the patient has previously prepared an advanced health care directive; (2) when the patient or a court has previously appointed a health care agent; or (3) when the health care decision involves cardiopulmonary resuscitation. However, the reality is that families, friends and medical providers are most often faced with cases where such steps have not or cannot be taken.

New York’s case law in this area has severely restricted the circumstances when end-of-life decisions can be made. In the seminal case in this area, New York’s highest court has ruled that decisions made on behalf of mentally incapacitated patients to forgo life-sustaining treatments can only be made if there is “clear and convincing” evidence of a patient’s wishes to forgo such treatment. Matter of Storar, 52 N.Y.2d 363, 379 (1981). The Storar case concerned a 52-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 treatments. A State official sought to compel treatment over her objections. Significantly, the Court held that 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. Rejecting the New Jersey Supreme Court’s decision in In re Quinlan, 70 N.J. 10 (1976), the Court refused to find a Constitutional right to privacy for an incapacitated patient or his or her guardian to reject medical treatment.

Storar’s “clear and convincing evidence” standard is an extremely high and difficult burden of proof to meet. Faced with this ruling, medical providers are understandably weary of honoring treatment decisions to withhold care, absent a court order. Courts generally have required proof of prior specific statements by the patient about which conditions the patient would refuse treatment as well as which treatments the patient would refuse. Even the patient’s written expression of a desire to forgo life-sustaining treatments, such as a “living will,” do not automatically prevent such treatment. Rather, courts view any such writings merely as evidence in support of the “clear and convincing” standard. New York’s current law considers issues of medical futility, the patient’s prolonged suffering and so forth to be irrelevant.

Why the FHCDA Should Be Enacted

For the reasons described below, the New York Civil Liberties Union believes that there is a strong due process and liberty interest to support the FHCDA’s surrogate decision-making procedure for patients who have lost the capacity to make health care decisions for themselves.

In the decades since the Storar decision was issued, families and friends, health care providers, and the courts have struggled with its legacy. The legislature’s failure to address the impact of the Storar decision has had a devastating impact upon the patients and the relatives of incapacitated patients who wished to decline futile, painful or experimental medical measures and has spawned a cottage industry of emotionally and financially protracted court battles. The following cases illustrate this point.

Jean Elbaum

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) were required to testify that she had repeatedly stated in response to the extensive media coverage of the Quinlan and Sonny von Bulow cases 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. The family’s legal odyssey was not over, however. 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 respond to any stimulation, play, speak or eat. AB required extreme medical intervention for all of her activities of daily living, including a mechanical respirator to breathe and other medical devices for food and hydration. After consulting with her physicians, AB’s mother became aware that her daughter had no chance of recovery and 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 the removal of the respirator would violate New York State law set forth in Storar.

AB’s grieving mother was forced to acquire 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. 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 catherizations, feeding tubes, IV’s and increasing infections.

A review of New York case law reveals that families and health care providers remain confused, and often at odds, about how to proceed when a patient is unable to make treatment decisions. See, e.g., Matter of Westchester Co. Medical Center o/b/o O’Connor, 72 N.Y.2d 517, 533 (1988) (authorizing the hospital, despite daughters’ wishes, to insert feeding tube into a 77-year-old woman who had had a number of strokes); Matter of O’Brian, 135 Misc.2d 1097, 1078 (N.Y. Co. 1986) (denying, after a bedside hearing, a request to remove an irritating feeding tube in an 83-year-old priest who was mentally incapacitated, but could understand some questions and squeeze his friend’s hand); Matter of Christopher, 177 Misc.2d 352 (Queens Co. 1998) (denying hospital’s request — over the objections of the son of a 79-year-old woman with Alzheimer’s disease — to insert a feeding tube because it would be against her wishes, futile, and unnecessary, noting such decisions are best left between medical personnel and family members); Matter of Beth Israel Medical Center, 136 Misc.2d 931, 942 (N.Y. Co. 1987) (refusing to accede to hospital’s request to amputate the leg of a 74-year-old stroke victim and determining that the patient “should be permitted to die with dignity” because the proposed surgery would “at best, unnecessarily prolong the natural process of her dying” and that there was “no human or humane benefit to be gained” from its performance).

Often, family members must demonstrate that the patient has not only stated on many prior occasions that he or she would refuse life-sustaining treatment, but also that the patient has said so about medical conditions and treatments that are similar to the circumstances at hand. Even when those statements are sufficient in number and address medical conditions and treatments similar to the ones at issue, years of litigation may be required to effectuate the patient’s wishes. Litigation is a cumbersome, painful, expensive, and ultimately an ill-suited mechanism to resolve medical disputes.

The FHCDA, on the other hand, would replace New York’s current ad hoc scheme with certainty and efficiency. This bill takes an approach that centers on the patient, binding surrogates to act on the wishes of the patient. It provides a clear procedure for the designation of a surrogate (either by the patient or by the institution and patient’s relatives and close friends). It also provides those surrogates the power to act without years of litigation. Moreover, the bill provides safeguards to the patient when the treating physician and surrogate disagree by referring disputes to the hospital’s ethics committee. In short, this bill emphasizes effectuating the wishes and best interests of an incapacitated patient — something that current law fails to do.

FHDCA and Reproductive Rights

The FHCDA requires that if an incapacitated patient is pregnant and her wishes are unknown or not ascertainable, the surrogate must consider the impact of treatment decisions on the fetus and the course of the pregnancy. Critics have argued that this provision might inappropriately create separate legal rights for a fetus or might permit or require a surrogate to give an inappropriate amount of consideration on the decision’s impact on the fetus. The New York Civil Liberties Union believes that the FHCDA neither creates rights for a fetus nor permits prioritizing the speculative interests of a fetus over the patient’s interest.

When the patient’s wishes are unknown, the FHCDA instructs the surrogate to make health care decisions from the patient’s viewpoint, taking into consideration concerns and values as the patient would. This includes, among other considerations, the impact of treatment decisions for a pregnant woman on her fetus and on the course and outcome of her pregnancy. Because the decision-making process must be patient-centered, meaning that it is must be rooted in the patient’s wishes, values and beliefs, a surrogate would only be permitted to place the interest of a fetus above that of the woman if the surrogate determines that such a decision would correspond with the wishes of the pregnant woman. The surrogate is not permitted to interject his or her values and beliefs, to the extent they differ from the patient’s, into the decision-making process.

Indeed, the NYCLU believes that the FHCDA creates greater protections for pregnant women and strengthens reproductive rights by requiring the surrogate to adhere to the woman’s values and by eliminating the possibility of intervention by the State or third parties unknown to the patient who may wish to impose their values and beliefs upon the incapacitated woman. The existing legal framework has required families and medical providers to fight off such unwanted interventions by third parties seeking to act in the “best interests” of a fetus.

For example, in In re Klein, 145 A.D.2d 145 (2d Dept. 1989), family members and the physician of a pregnant woman in a coma sought to provide life-saving treatment that would have resulted in the termination of her pregnancy. A third party unrelated to the patient filed suit in an attempt to have himself appointed the fetus’ guardian. The patient’s family and hospital were forced to fight off this unwanted intervention in Court, wasting precious medical time for the patient and the family’s already depleted energies and finances. The FHDCA eliminates such inappropriate intervention because it vests health care decisions in a family member or close friend only.

For the reasons set forth above, the NYCLU strongly urges the passage of A.5406-A / S.5807.

Thank you once again for providing me with this opportunity to testify before this Committee.

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