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FAMILY DECISIONS COALITION Family Health Care Decisions Act A.5406 (Gottfried) and S.4296 (Seward) What would the legislation do? The legislation would enable family members and others close to the patient (a ‘surrogate’) to decide about treatment for incapacitated patients who have not signed a health care proxy or left specific oral or written treatment instructions. It would also cover treatment decisions for patients who have no available family or friends to decide for them. Why is the legislation necessary? Under current New York law, no one, not even a concerned family member, has the right to make decisions about medical treatment for patients who lack capacity, unless the patient has signed a proxy or left ‘clear and convincing evidence’ of his or her treatment wishes. Most people never sign a proxy or leave this kind of evidence. As a result, some incapacitated patients are denied appropriate treatment, while others are subjected to burdensome treatments that violate their wishes, values, or religious beliefs. Is this a right to die bill? No. The legislation affirms existing laws against assisted suicide and euthanasia. Under the legislation, who would make medical decisions for me if I lose the capacity to decide myself? A surrogate decision maker, chosen from a list of family members and others close to you could decide about your treatment, in consultation with physicians and other professionals responsible for your care. What if I have signed a health care proxy or living will? The legislation applies only to patients who have not signed a health care proxy or left clear evidence of their treatment wishes. What type of treatment decisions would the legislation cover? The legislation would cover all treatment decisions for adult patients, including decisions about life-sustaining measures. For minor patients, the legislation would cover only decisions about life-sustaining treatment. Other treatment decisions by parents and guardians for minor children are authorized by existing New York law. On what basis would my family members or others decide about treatment? Decisions must be consistent with your wishes (including your religious and moral beliefs) or, if your wishes are not reasonably known, decisions must be in your best interest. Where would the legislation apply? The legislation would apply in general hospitals and in residential care facilities, such as nursing homes. It would not cover mental hygiene facilities, the psychiatric units of general hospitals or outpatient settings such as clinics or doctors’ offices. Would the legislation allow my surrogate to choose to have all available treatments provided to me? Yes, if your surrogate determines that doing so would accord with your wishes or best interests. Would the legislation made it easier for insurers or providers to deny me treatment to save money? No. The legislation puts decision-making authority in the hands of your surrogate, not health care providers or insurers. In fact, by giving your loved ones an explicit role in the decision-making process, including access to your medical records, the legislation would make it easier for them to challenge inappropriate denials of care. Do other states have similar laws? The District of Columbia and 35 other states have statutes that grant family members and others close to the patient the right to make medical decisions for patients without capacity. Case law in most other states grants family members and others similar authority. Would the legislation promote assisted suicide or euthanasia? No. It would not permit assisted suicide or euthanasia, and affirms existing laws against these practices. Who supports the legislation? Over 40 civic, medical, legal and religious organizations support the legislation, and the list is growing. Are there special safeguards for decisions to stop life-sustaining treatment? Family members or other surrogates could refuse life-sustaining treatment only if the treatment imposes an ‘excessive burden’ on you and you are terminally ill or permanently unconscious, or if you have an irreversible or incurable condition and the treatment would ‘involve such pain, suffering or other burden that it would reasonably be deemed inhumane or excessively burdensome under the circumstances. When would surrogate authority begin? Can I decide as long as I am able? Family members or others could decide about your treatment only if your attending physician and a second health care professional determine that you lack capacity to decide for yourself. You would retain the right to decide about treatment as long as you have the ability to do so. What if I object to a treatment decision made by a surrogate for me or to a doctor’s judgment that I am too ill to decide for myself? If you object to a determination of incapacity or to a surrogate’s decision about treatment, your objection will prevail unless the facility or surrogate obtains a court order. What if there is a conflict between health care professionals, family members or others close to me? Each hospital or nursing home would be required to establish a committee to mediate disputes between health care professionals, family members and others close to the patient. The committees would be required to consider each case fully, grant access to the process to patients and surrogates, and protect patient confidentiality. How would decisions be made about treatment for patients who do not have available family or friends? As for other patients, decisions must be consistent with the patient’s wishes, or, if the patient’s wishes are not know, in the patient’s best interest. The legislation would facilitate access to treatment for patients who have no surrogate by establishing a process for consent to needed treatment. Decisions to withhold or withdraw life-sustaining treatment would have to meet the safeguards established for other patients and, in addition, would have to be approved by a court. Does the legislation encourage the refusal of treatment? No. The legislation does not encourage or discourage any treatment decision. It empowers your surrogate to make whatever decision best accords with your wishes or, if your wishes are not reasonably know, your best interest. MEMORANDUM OF SUPPORT FAMILY DECISIONS COALITION 100 State Street, Suite 400 Family Health Care Decisions Act The Family Decisions Coalition is comprised of a broad group of individuals and groups from the health care, legal, and medical professions, as well as various organizations that represent nursing home residents, health care consumers, and their families. The Coalition’s sole focus is to mobilize the New York State Legislature to pass the Family Health Care Decisions Act. More than a decade ago, the New York State Task Force on Life and the Law, a nationally recognized nonpartisan commission consisting of health care providers, community representatives, attorneys, clergy, and bio-ethicists, issued a comprehensive set of recommendations to bring New York law on health care decision-making into line with the laws in the vast majority of other states. The Task Force’s comprehensive proposal, now known as the Family Health Care Decisions Act, would give family members and others close to the patient the right to decide about treatment for patients without capacity. Decisions would have to be based on the patient’s wishes or, if the patient’s wishes are unknown, the patient’s best interests. The Act contains numerous safeguards to promote good decisions and protect patients’ rights. Currently, New York State lags behind the rest of the nation in permitting close family members to make health care decisions for incapacitated patients. Only a court- appointed guardian or a judge is permitted to consent to treatment for patients who lack capacity to decide for themselves. This is true even when the patient has a spouse or other family member willing and able to act on the patient’s behalf. This archaic rule often results in considerable delay in administering health care, as well as added expense. In some cases, patients are denied appropriate treatment because no one can afford to go to court on their behalf to obtain a guardianship. More critically, a series of judicial decisions provide that no one, not even a judge, can decide to forego life-sustaining measures for patients without capacity, unless the patient has signed a health care proxy or left “clear and convincing evidence” of his or her treatment wishes. Because most people never sign such a proxy or leave this kind of evidence, incapacitated patients are routinely at risk of receiving burdensome, extended treatments that violate their wishes, values, or religious beliefs. The Family Health Care Decisions Act would remedy these problems by giving family members and others close to the patient the authority to make treatment decisions for incapacitated patients who have not signed a health care proxy or left specific oral or written treatment instructions. This legislation would only apply in general hospitals and residential care facilities, such as nursing homes. It would not cover mental hygiene facilities, the psychiatric units of general hospitals, or outpatient settings such as clinics or doctors’ offices. The surrogate decision makers would be chosen from a priority list of family members and others close to the patient. Their primary function would be to consult with physicians and other professionals responsible for the care of the patient, and to advocate on the patient’s behalf. The surrogate decision makers would be required to make decisions consistent with the incapacitated patients’ wishes, including their religious or moral beliefs. In the event these wishes are not reasonably known, the decisions would have to be in the best interest of the incapacitated patient. Decisions to withhold or withdraw life-sustaining treatment would be authorized only if specific medical criteria are satisfied. Any disputes among family members or between family members and health care professionals would automatically trigger review by an interdisciplinary ethics committee. An important feature of the Act is that it would give family members and other surrogate decision-makers access to incapacitated patients’ medical records. Under current law, family members are denied the right to review the medical records of incapacitated patients, which makes it impossible for them to advocate effectively on the patient’s behalf. The Act also provides mechanisms for facilitating access to treatment for incapacitated patients who have no family or friends available to make decisions. In addition, it would clarify parents’ authority to make decisions about life-sustaining treatment for minor patients. While life sustaining treatment decisions are included in the umbrella of permitted decision making, this is not a right to die bill. On the contrary, in addition to allowing family members to refuse life-sustaining treatment for incapacitated patients under appropriate circumstances, the law would empower family members to advocate for aggressive life-sustaining measures for patients who would have wanted them. Moreover, the legislation affirms existing laws against assisted suicide and euthanasia. Legislation similar to the Family Health Care Decisions Act has proved effective in numerous other states, and it undoubtedly would also work well in New York. We respectfully urge your full support of the Family Health Care Decisions Act, a proposal that would improve the quality of life and liberty of all New Yorkers. Organizations in Support of the Family Health Care Decisions Act New York State Association of Homes and Services for the Aging |
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