Establishes procedures for making health care decisions on behalf of patients unable to decide about treatment for themselves; repealer

Summary of provisions

Section one establishes a legislative intent for the Public Health Law Article 29-CC and 29-CCC, Family Health Care Deci- sions Act and Non-Hospital Orders Not To Resuscitate. The bill enables family members and others close to an incapacitated patient to make health care decisions in accord with special procedures, standards and safeguards.

Section two amends the Public Health Law by adding new Articles 29-CC and 29-CCC, entitled "Family Health Care Decisions Act" and "Non Hospi- tal Orders Not To Resuscitate". Article 29-CCC makes 'conforming and technical changes with respect to New York's existing law on do-not-re- suscitate orders.

The new family health care decision-making article would establish procedures authorizing family members, or other persons close to patients who lack decision-making capacity, to decide about treatment, in consultation with health care professionals and in accord with speci- fied safeguards. The article includes special procedures and standards for decisions about life-sustaining treatments.

Section 2994-a defines several terms used in Article 29-CC as follows:

*"Hospital" means a general hospital (excluding OMH-licensed mental health units) and a residential health care facility as defined in Arti- cle 28 of the Public Health Law.

*"Patient" is defined as a person admitted to a hospital.

*A "surrogate" is a person selected to make a health care decision for a patient pursuant to the article. Certain definitions pertain to health care decisions for minor patients.

*A "parent" of a minor child is defined as a parent who has custody of, or who has maintained substantial and continuous contact with, the minor patient.

*A "guardian of a minor" or "guardian" means a legal guardian of the person of a minor, or a "health care guardian," defined as a court appointed guardian authorized to decide about life-sustaining treatment pursuant to the article.

*"Emancipated minor patient" is a minor patient who is 16 years of age or older and living independently from his or her parents or guardian, or a minor who is the parent of a child.

*"Ethics review committee" means the interdisciplinary committee estab- lished in a hospital in accord with the requirements of the article.

*"Health care"' is any treatment, service or procedure to diagnose or treat an individual's physical or mental condition. Providing artificial nutrition and hydration orally, without reliance on medical treatment, is not health care under this article and is not subject to this arti- cle.

Section 2994-b provides that the act applies to health care decisions for care provided in a hospital. It also provides that the patient has a health care agent; decisions for the patient are governed by the health care proxy law, article 29-c of the Public Health Law. Similarly, if the patient has a guardian appointed under article 17 A of the Surro- gate's Court Procedure Act, or if surrogate decisions could be made for the patient pursuant to section 1750-b of the Surrogate's Court Proce- dure Act or pursuant to OMIT or OMRDD regulations, then decisions for the patient are governed by those laws or regulations and not by the provisions of this act.

Section 2994-c governs the determination of patient incapacity for purposes of authorizing surrogate decisions for adult patients. It creates a presumption that every adult has capacity to decide about treatment unless determined otherwise pursuant to procedures set forth in the section, or pursuant to court order. The section requires an attending physician to determine that a patient lacks capacity to make health care decisions. In a residential health care facility, at least one other health or social service practitioner employed by or otherwise formally affiliated with the facility must concur. In a general hospi- tal, this concurrence is required for a surrogate decision to forgo life-sustaining treatment. Hospitals must adopt written policies identi- fying the training and credentials of professionals qualified to provide the concurring opinion. For patients with a mental illness or develop- mental disability, a professional with training or expertise in diagnos- ing or treating the mental illness or developmental disability must provide the concurring opinion. Health care professionals must inform the patient of the determination of incapacity, if there is any indi- cation that the patient can understand the information. The person high- est on the surrogate list must also be informed. If the, patient objects to the determination of incapacity, the appointment of a surrogate, or to a surrogate's decision, the patient's objection prevails, unless a court determines otherwise. The attending physician must confirm that the patient lacks decision making capacity before complying with health

care decisions. This confirmation is not required for treatments provided as part of a course of treatment authorized by consent provided at the time of the initial determination of incapacity.

Section 2994-d concerns adult patients who lack capacity to make partic- ular health care decisions. It lists, in order of priority, the persons who may act as a surrogate, excluding administrators, employees and independent contractors ,of the hospital caring for the patient, unless they are related to the patient, or were a close friend of the patient before the patient's admission to the facility. A court-appointed guar- dian is the first person on the list, followed by: the spouse or domes- tic partner; child older than 18; a parent; a sibling; or a close adult friend or relative familiar with the patient's personal, religious and moral views regarding health care.

This section grants the surrogate authority to make all health care decisions for the patient that the adult patient could make for himself or herself, subject to the standards and limitations of the article. The section establishes the duty of health care providers to give the surro- gate medical information and clinical records necessary to make informed decisions for the patient. Surrogates have a right and duty to seek this information.

Section 2994-d requires the surrogate to decide about the treatment based on the patient's wishes, including the patient's religious and moral beliefs, or, if the patient's wishes are not reasonably known and cannot with reasonable diligence be ascertained, based on the patient's best interest. The section authorizes decisions to withhold or withdraw life-sustaining treatment if treatment would be an extraordinary burden to the patient and the patient is terminally or permanently unconscious, or if the patient has 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. The determination of terminal illness, permanent uncon- sciousness, or irreversible or incurable condition must be made by two physicians in accord with accepted standards of medical practice. The surrogate must determine if treatment would be an extraordinary burden in light of the patient's own wishes, preferences, and values, to the extent possible. In residential health care facilities, a surrogate can decide to forgo life-sustaining treatment for patients who are not terminally ill or permanently unconscious only if the Ethics Review Committee, including at least one physician not directly, responsible for the patient's care, or a court, reviews the decision and determine that the decision meets the standards set forth in the article for such decisions. In a general hospital, if the attending physician objects to a surrogate's decision to forgo artificial nutrition and hydration for a patient who is not terminally ill or permanently unconscious, the deci- sion may not be implemented until the Ethics Review Committee, including at least one physician who is not directly responsible for the patient's care, or a court, reviews the decision and determines that it meets the. standards set forth in the article for such decisions. The words "exces- sive" and "excessively", in earlier versions of the bill, have been

changed to "extraordinary" and extraordinarily". This change of words was made to follow the wording under Surrogate's Court Procedure Act 1750-b. However this change in wording does not change the meaning of this provision.

Section 2994-e authorizes the parent or guardian of a minor patient to decide about life-sustaining treatment, in accord with the same stand- ards that apply to surrogate decisions for adults. In addition, if a minor has the decisional capacity to decide about life-sustaining treat- ment, the minor's consent is required to withhold or to stop treatment. If the minor is emancipated and has decision-making capacity, the minor can decide to withhold or withdraw life-sustaining treatment on his or her own behalf, if: (i) the attending physician and the ethics review committee determine that the decision accords with the standards for surrogate decisions for adults, and (ii) the ethics review committee approves the decision. If the hospital can with reasonable efforts ascertain the identity of an emancipated minor's non custodial parent or guardian, the hospital must notify the parent prior to discontinuing treatment. If a parent or guardian objects to the decision, the article establishes his or her right to refer the matter to the ethics review committee.

Section 2994-f requires the attending physician to inform a surrogate promptly if the physician objects to a decision to withdraw or withhold life-sustaining treatment. The objecting physician must then either make all reasonable efforts to transfer the patient to another physician, if necessary, or promptly refer the matter to the ethics review committee. The section also obligates physicians to refer objections by or disa- greement among family members and others close to the patient to the ethics review committee.

Section 2994-g establishes a procedure for making health care decisions for adult patients who have lost decision-making capacity and have no available family member or friend to act as a surrogate. It applies the same standards that govern decisions for adults by family or others close to them, including the special safeguards for decisions about life-sustaining treatment. The section authorizes the attending physi- cian to decide about routine medical treatment for patients without surrogates. Routine treatment is defined to include only procedures for which physicians ordinarily do not seek specific consent from the patient or others. For decisions about major medical treatment, the attending physician must consult with hospital staff directly involved with the patient's care and at least one other physician selected by the hospital must concur in the appropriateness of the decision. A recommen- dation by an attending physician to withhold or withdraw life-sustaining treatment from a patient who does not have a surrogate may not be imple- mented unless it meets one of two requirements: One requirement is review and approval by a court. The court must determine whether the decision satisfies the specified standards for decision by surrogates to withhold or withdraw life-sustaining treatment. Alternatively, if the attending physician determines that: (i) life-sustaining treatment offers the patient no medical benefit because the patient will die immi-

nently; and (ii) the provision of life-sustaining treatment would violate acceptable medical standards, and one other physician concurs in this determination, life sustaining treatment may be withdrawn or with- held without review by a court.

Section 2994-i sets forth specific policies for do-not-resuscitate (DNR) orders, requiring all such orders to be written in the patient's record and clarifying that the orders provide consent to withhold only cardiop- ulmonary resuscitation, not other treatments.

Section 2994-j establishes that a patient, surrogate, or parent or guar- dian of a minor patient may at any time revoke consent to withhold or withdraw life-sustaining treatment by notifying a physician or member of the nursing staff.

Section 2994-k states that hospitals must adopt written policies requir- ing implementation and regular review of decisions to withhold or with draw life-sustaining treatment, in accord with accepted medical stand- ards. It also provides that whenever an attending physician determines that a decision to withhold or withdraw life-sustaining treatment is no longer appropriate or authorized because the patient's condition has improved, the physician must include this determination in the patient's chart, cancel any orders or plans of care to withhold or withdraw treat- ment, and notify the person who made the decision and facility staff directly responsible for the patient's care.

Section 2994-l governs inter-institutional transfers of patients with orders or plans of care to withhold or withdraw life-sustaining treat- ment. It establishes that orders remain effective at the receiving hospital until an attending physician first examines the patient. The physician must then either continue or cancel the prior orders.

Section 2994-m requires each hospital and nursing home to establish at least one ethics review committee or participate in a committee that serves more than one facility. The committee can be an existing ethics committee, a subcommittee of an existing ethics committee, or a new committee created to fulfill the requirements of this article. Hospi- tals must adopt a written policy governing committee functions, composi- tion and procedure, in accord with specified requirements set forth in the section. Committees must be multidisciplinary and must include at least two individuals who have demonstrated an interest in or commitment to patients' rights or to the medical, public health, or social needs of those who are At least one member must not be affiliated with the hospi- tal. In nursing homes, the Committees must include a member of the resi- dents' council a person who is not affiliated with the facility who is a family member of a current or former resident at the same or a different facility, and a person who has demonstrated an interest in or commitment to patients rights or to the care and treatment of the elderly or nurs- ing home residents through professional or community activities, other than activities performed as a health care provider.

Section 2994-m also specifies that recommendations and advice by the committee are advisory and non-binding, except for committee approval or disapproval of decisions to withdraw or withhold life-sustaining treat- ment in specified types of cases. A committee must permit patients, certain health care professionals, family members and other close to patients to present their concerns and views to the committee, and must inform these persons of the committee's response to the case.

Section 2994-m additionally requires the committee to issue a written statement of its reasons for approving or disapproving decisions to withhold or with draw life-sustaining treatment in certain types of cases. The committee must also routinely review surrogate and committee decisions in certain sensitive cases. Ethics review committee members are granted access to medical records and information necessary to perform their function, and are obligated to protect patient confiden- tiality. The section also protects the confidentiality of committee records and proceedings, but grants the Department of Health access to committee records and proceedings in any cases when the committee has the authority to approve a decision to forgo life-sustaining treatment. The Department may use,such records in any enforcement proceeding against a health care facility or an individual health care profes- sional.

Section 2994-n sets forth the right of private hospitals and individual health care providers to refuse, on grounds of moral or religious conscience, to honor health care decisions made pursuant to Article 29-CC. For a hospital to assert a conscience objection the decision must be contrary to a formally adopted policy of the facility expressly based on sincerely held religious beliefs or sincerely held moral convictions. Such ethical or religious convictions must be central to the facility's operating principles and cannot be based on administrative concerns. The policy statement must be specific in order to provide adequate notice to patients and surrogates of the fa- cility's actual policies and practices. In order to exercise an objection the facility must have informed the patient, family, or surrogate of its policy prior -to or upon admission, if reasonably possible. The section requires the hospi- tal to cooperate in transferring the patient to another facility willing to honor the decision. If the transfer does not occur, the facility must seek judicial relief or honor the decision.

Section 2994-n also recognizes that individual health care professionals may refuse to honor treatment decisions that violate their sincerely held religious or moral convictions. Individual health care providers who assert conscience objections must promptly inform the health care facility and the person who made, the decision. The facility must then promptly transfer responsibility for the patient to another health care professional willing to honor the decision.

Section 2994-o provides protection from civil and criminal liability for acts performed by individuals reasonably and in good faith pursuant to the article as a consultant to or a member of an ethics review commit- tee, or as a participant in an ethics review committee meeting. Health

care providers who honor a health care decision reasonably and in good faith made pursuant to the article, or take other actions in good faith pursuant to the article, are protected from civil and criminal liability and charges of professional misconduct. Surrogates and parents and guar- dians of minor patients are also protected from civil and criminal liability for making a health care decision in good faith under the article,

Section 2994-p states that liability for the cost of health care provided to an adult patient under Article 29 D is the same as if the patient had consented to treatment.

Section 2994-q establishes that Article 29-c,c does not create, impair, or supersede any rights an individual may have to make health care deci- sions for him or herself. The section clarifies that a decision by a surrogate cannot supersede or override prior decisions, wishes, or instructions by a competent adult patient, expressed orally or in writ- ing, unless the patients decision, wishes or instructions do not apply to the particular medical circumstances under consideration. The section also clarifies that the article does not affect existing law concerning implied consent to health care in an emergency or concerning steriliza- tion, nor is it intended to permit or promote suicide, assisted suicide or euthanasia.

Section 2994-r authorizes certain persons with a close relationship to a patient to commence a special proceeding with respect to disputes aris- ing under the article. The section specifically provides that courts can appoint any person from the surrogate list to act as surrogate, regard- less of that person's" priority on the list, if the court determines that such appointment would best accord with the patient's wishes or, if the patient's wishes are unknown, the patient's best interests. The section also empowers a court to authorize the withholding or withdrawal of life sustaining treatment based on a determination that forgoing treatment accords with the patient's wishes, or, if such wishes cannot be ascertained, with the patient's best interests. In addition, the section establishes a procedure for appointing a health care guardian for a minor patient, specifying who has standing to seek an appointment. The section provides that the court may only appoint a health care guar- dian if a minor's parent or legal guardian of the person is not avail- able, willing and competent to decide about treatment for the minor.

Section 2994-s establishes that any hospital or attending physician that refuses to honor a health care decision made by a surrogate in accord with the standards set forth in Article 29-CC shall not be entitled to compensation for treatment, services, or procedures provided without the surrogate's consent, except under specified circumstances. The section does not impose a penalty, but equitably resolves the matter of medical fees in cases where a surrogate exercises authority granted by the arti- cle, and the hospital insists on providing care notwithstanding surro- gate refusal.

Section 2994-t requires the Commissioner of Health to promulgate regu- lations necessary to implement the article. It also requires the Commis- sioner of Health, in consultation with the Commissioners of the Office of Mental Health and t Mental Retardation and Developmental Disabili- ties, to promulgate regulations identifying the credentials of health care professionals qualified to provide a concurring opinion of incapac- ity based on mental illness or developmental disability.

Under Section 2994-u, the Commissioner of Health must prepare a state- ment summarizing the rights, duties, and requirements of the article, and require the dissemination of the statement.

The bill also creates Article 29-CCC of the Public Health Law on "Non- Hospital Orders Not to Resuscitate" which largely reproduces the provisions currently set forth in Section 2977 of the Public Health Law. However, Article 29-CCC clarifies that home care services agency person- nel and hospice personnel, as well as emergency medical services person- nel and hospital emergency room staff, can honor non-hospital DNR orders. Section 2994-cc establishes that consent by a surrogate shall be governed by the policies set forth in Article 29-CC, except that the,authority of the ethics review committee shall not apply to non-hos- pital orders issued outside of a hospital. In addition, the qualifica- tions for health care professionals authorized to provide a second opin- ion about the patient's decision-making capacity shall be defused by regulations promulgated by the Department of Health, not by hospital policies. This assures that non-hospital orders can be issued outside of a hospital, in a physician's office or in other settings. Section 2994- cc also provides that surrogate consent to a non-hospital DNR order issued for a patient in a mental hygiene facility will be governed by Article 29-B.

Section 3 amends section 2805-q of the public health law to protect the visitation rights of surrogates in health care facilities.

Section 4 renames Article 29-B as "Orders Not To Resuscitate For Resi- dents of Mental Hygiene Facilities".

Sections 5 and 6 repeal sections of Article 29-B of the public health law that have been incorporated into Article 29-CCC by this bill.

Section 7 amends section 2961 of the public health law to add a defi- nition of "domestic partner."

Section 8 clarifies that the attending physician in Article 29-B may not rely on the presumption that adults are capable of deciding about cardiopulmonary resuscitation if clinical indicia of incapacity are present.

Section 9 repeals subdivision 3 of section 2964 of the public health law to eliminate the "therapeutic exception" from the DNR law.

Sections 10 through 21 reconcile Article 29-CC with the existing law on do-not resuscitate established by Article 29-B of the Public Health Law.

Section 22 of the bill amends the Health Care Proxy law (§2984, new subdivision 5) to provide that, when a health care agent directs the provision of life-sustaining treatment, the denial of which would likely result in the patient's death, a hospital or individual health care provider that does not wish to provide the treatment must comply with the agent's directions, pending transfer of the patient to a willing provider, or judicial review.

Section 23 of the bill adds the definition of "life-sustaining treat- ment" to the Health Care Proxy law (§2980, new subdivision 9:,a).

Section 24 of the bill amends section 81.22 of the Surrogate's Court Procedure Act to provide for guardians under Mental Hygiene Law Article 81 to act as surrogates under the Family Health Care Decisions Act, Public Health Law Article 29-CC.

Section 25 of the bill repeals section 81.29 of the Surrogate's Court Procedure Act, which had limited the authority of guardians under Mental Hygiene Law Article 81 to make decisions to withdraw life-sustaining treatment.

Section 26 of the bill amends section 1750-b of the Surrogate's Court Procedure Act ("Health Care Decisions for Mentally Retarded Persons") to insert a definition of "life-sustaining treatment" and to authorize the Willowbrook Consumer Advisory Board to act as guardian for certain members of the Willowbrook class action.

Section 27 of the bill directs the New York State Task Force on Life and the Law to form a special advisory committee to assist it in considering whether the Family Health Care Decisions Act should be amended to incor- porate procedures, standards and practices for the withholding or with- drawal of life-sustaining treatment from patients with mental illness, or with mental retardation or development disabilities. It also directs the Task Force to consider whether the Family Health Care Decisions Act should be amended to apply in settings other than general hospitals and residential health care facilities.

Section 28 provides for an effective date of the act.

Existing law

Adults (who have capacity to make decisions) have a firm- ly established right to accept or reject medical treatment based on the common law principle that "every individual of sound mind and adult years has a right to determine what should be done with his own body." SCHLOENDORFF V. SOC'Y OF N.Y. HOSP., 211 N.Y. 125, 129-30, 105 N.E. 92 (1914) (Cardozo, J.).

A capable adult may not be treated without his or her consent, except in limited circumstances, such as in an emergency. The right to decide about treatment includes the right to refuse life- sustaining measures.

IN RE EICHNER (IN RE STORAR)-, 52 N.Y.2d 363, 438 N.Y.S.2d 266 (1981). This right is protected by the New York State and United States Consti- tutions. RIVERS V. KATZ, 67 N.Y.2d 485,504 N.Y.S.2d 74 (1986); CRUZAN V. DIRECTOR, MISSOURI DEPT. OF HEALTH, 110 S. Ct. 2841 (1990).

Two kinds of written instruments, generally referred to as "advance directives," enable persons to exercise this right after losing the ability to participate directly in decision-making: (i) written instructions about treatment, usually called a "living will," and (ii) the written appointment of a person to make health care decisions on the person's behalf. Patients can also leave advance oral instructions about treatment. The New York Court of Appeals has held that living wills and other written or oral evidence of treatment wishes provide a legal basis for withdrawing or withholding life-sustaining measures if the instructions constitute clear and convincing evidence of the patient's wishes. In re Eichner (in re Storar); In re Westchester County Medical Center (O'Connor), 72 N.Y.2d 517,534 N.Y.S.2d 886 (1988).

New York court decisions have repeatedly demonstrated the difficulty of satisfying the clear and convincing evidence standard. See, e.g., O'Connor, New York's health care proxy law, Article 29-C of the Public Health Law, allows adults to delegate authority to another adult to decide about all health care treatment, including life-sustaining meas- ures. The agent must make decisions in accord with the patient's wishes, or, if they are not reason ably known, in accord with the patient's best interests. Health care providers must-honor the agent's decisions to the same extent as if they had been made by the patient, and are protected from liability for doing so. Although New York law does not explicitly recognize the authority of family members to consent to treatment for adult patients unable to decide for themselves, health care providers routinely turn to family members for consent. However, under legal doctrines enunciated by the New York Court of Appeals, family members or others close to patients cannot decide about life-sustaining treatment. In re Eichner (In re Storar).

The health care proxy law provides an important exception to this gener- al rule, but only for individuals who have signed a proxy form. Article 29-B of the Public Health Law, governing do-not-resuscitate (DNR) orders, establishes another exception. This authorizes persons with a close relationship to the patient to decide about cardiopulmonary resus- citation. It permits a surrogate to consent to a DNR order under stand- ards similar to those proposed for Article 29-CC. For example, the order must comport with the patient's wishes, or if they are not known, with the patient's best interests. Several other New York statutes and regu- lations authorize surrogate decisions for special patient populations. For example, Article 81 of the Mental Hygiene Law empowers courts to appoint a guardian to make financial and/or personal decisions for an incompetent adult. Under Article 17 -A of the Surrogate's Court Proce- dure Act, the court can appoint a guardian to make decisions for indi- viduals who are mentally retarded or developmentally disabled, including decisions about life-sustaining treatment. Article 80 of the Mental Hygiene Law authorizes special interdisciplinary committees to decide

about major or medical treatment for residents of mental hygiene facili- ties who are unable to decide for themselves and have no family members available to consent. A distinct body of law governs health care deci- sions about minors, In general, parents have the right and responsibil- ity to make treatment decisions for their minor children. See, e.g., Public Health Law 2504(2). This right derives from parents' Constitu- tionally protected right to rear and raise their children free from state interference. Accordingly, parental treatment decisions are accorded great deference. See, e.g., SANTO SKY V. KRAMER, 455 U.S. 645 (1982); IN RE HOFBAUER, 47 N.Y.2d 648, 419 N.Y.S.2d 936 (1979).

Although persons younger than 18 years of age generally may not decide about their own health care, New York statutes contain important exceptions to this rule. For example, Section 2504(1) of the Public Health Law authorizes minors to consent to treatment if they are either married or a parent. If specified conditions are met, New York statutes also permit minors to consent to certain treatments. See, for example, Public Health Law 2305(2) (treatment for venereal disease); Mental Hygiene Law 9. 13 (a) and 33.21 (mental illness); Public Health Law 2504(3) (parental care); Public Health Law 3123 (blood donation); Mental Hygiene Law 21.11 and 33.21 (substance abuse); and Public Health Law 2781 (FIN-related testing).

In addition, the S.S law for Birth Control and under Article 29-B of the Public Health Law, a DNR order cannot be issued for a minor without the minor's consent if the minor possesses decisional capacity. New York courts have recognized the emancipated minor doctrine for health care decisions by minors. Under this doctrine, minors are considered emanci- pated when an intentional rending of the parent-child relationship has occurred: parents have intentionally relinquished control over the minor, and the minor has intention ally withdrawn from legitimate parental control and guidance. See, e.g., ZUCKERMAN V. ZUCKERMAN, 154 A.D.2d 666,546 N.Y.S.2d 666 (2d Dept. 1989); BACH V.LONG ISLAND JEWISH HOSP. ,49 Misc. 2d 207, 267 N.Y.S.2d 289 (Sup. Ct., Nassau Co. 1966).

Statement in support

Every year in health care facilities across New York State thousands of treatment decisions are made for patients unable to decide for themselves, including children, elderly patients, those temporarily impaired, those who will not regain capacity, and those never able to decide about treatment. The question for New York State policy is not whether surrogate decisions will be made, but who will make them and by what criteria. Article 29-CC provides responsible poli- cies for decisions on behalf of patients unable to decide about treat- ment for themselves.

In practice, most health care providers consult family members prior to rendering.treatment to an incapacitated person. However, existing law requires that a previously competent adult patient must have signed a health care proxy or left clear evidence of his or her wishes in order to forgo life-sustaining treatment. This standard is at odds with the laws of most other states, where either statutes or court decisions expressly permit family members to decide about life- sustaining treat-

ment, subject to public standards. New York and Missouri are the only two states where the law explicitly denies family members this authori- ty.

Clear evidence of the patient's wishes is extraordinarily difficult to provide in an age of rapid medical advances, even for medical experts. Studies also show that only 10-15% of the adult population has signed a proxy or other advance directive such as a living will. For children, neither clear evidence of wishes nor a health care proxy is ever a possibility. Most people would want and expect family members or others close to them to decide about treatment when they become too ill to decide for themselves. Our law denies this basic expectation. It also leaves family members unable to refuse treatment despite their deep commitment to respect the patient's values or their desire to discontin- ue treatment that imposes excessive burdens on the patient without offering hope for cure, recovery or relief of suffering.

This legislative proposal recognizes that few families have the emotional or financial resources to pursue judicial relief. It estab- lishes a process to review sensitive cases and to resolve disputes with- in health care facilities, relying on the courts only as a last resort. This approach is consistent with the guidelines on decisions about life- sustaining treatment prepared for state court judges. Those guidelines state that "the courts should not be used as a clearinghouse for the rendering of medical decisions which are best made by the patient and family and physician of the patient. A trial court must protect itself from inappropriate involvement in a life-sustaining medical treatment case and should decline jurisdiction if there is no justifiable contro- versy."

With respect to the new subdivision 5 of §2984, relating to an agent who directs the provision of life-sustaining treatment, it is intended that a court reviewing the agent's direction may override the direction only on one of the three grounds specified in §2992 or on the grounds that compliance with the agent's direction is not required by this new subdi- vision 5. The words "but not limited to" in §2992 allow an appropriate court to consider other sorts of disputes that may arise under the arti- cle; they do not expand the grounds on which the court may override an agent's direction to provide life-sustaining treatment, For patients without family members or close friends, existing practices to decide about treatment are generally informal. They do not adequately protect these patients' right to receive treatment or their interests when deci- sions about life-sustaining ,treatment must be made. This is a diverse patient population, including individuals who are elderly, mentally ill or homeless. Many physicians and health care facilities now decide about treatment for these patients, including decisions to provide major medical treatment or to stop life-sustaining measures. In rare cases, a health care facility or public official seeks a court order authorizing treatment, or a committee or guardian of the person has been appointed and decides about treatment. More often, the expenses and delays associ- ated with court proceedings are avoided, Sometimes health care profes- sionals wait until a patient's condition deteriorates and major medical

interventions are authorized under the emergency exception to the requirement of informed consent. Other times, a patient receives treat- ment, but health care providers proceed without a clear legal substitute for patient or family consent. In either case, decisions are routinely made on an informal basis, without prospective or retrospective review. The proposed legislation provides a decision-making process for this patient population that will facilitate their access to needed treatment and permit the discontinuation of life-sustaining measures in accord with publicly approved procedures and patient-centered standards. For patients without family members or close friends, judicial approval is required for decisions to withhold or withdraw life-sustaining treat- ment.

Overall, the proposed legislation promotes the wishes and interests of incapacitated patients by establishing a process for determining inca- pacity, a priority list of those who may act as surrogate, and specific standards for surrogate decisions. The bill contains many safeguards to protect the patient's interests: a family member or someone else with a close personal relationship to the patient must decide in accord with standards based on the patient's wishes and best interests; life-sus- taining treatment can only be discontinued if it is an excessive burden to the patient and specified medical criteria are satisfied; anyone on the list of potential surrogates can challenge the decision triggering further review within the facility; and, decisions that t are especially sensitive must be reviewed routinely by a multidisciplinary committee.

The New York State Task Force on Life and the Law concluded that deci- sions about life-sustaining treatment are best made in the context of the family or other personal relationships; with appropriate safeguards. This is what most people would want and choose for them- selves. It also recognizes the importance of family and other close relationships at a time of illness. These individuals are most likely to know the patient's own views about treatment, including the patient's religious and moral beliefs. They are also most likely to be dedicated to the patient's well being, For patients who have no natural surrogates and are therefore most vulnerable, the proposed legislation will facilitate access to needed treatment and fulfill society's obligation to ensure that timely, responsible decisions are made on their behalf.

The bill also integrates policies set forth in Article 29-CC with Arti- cle 29-B on orders not to resuscitate. This is necessary because Article 29-CC covers all treatment decisions, including decisions about cardiop- ulmonary resuscitation in hospitals. Two separate laws, one for resusci- tation decisions and one for other treatments would be confusing and hard to implement for patients, for surrogates and for health care providers.

The policies set forth in Article 29-CC build on the policies and expe- rience gained with Article 29-B. Article 29-B will continue to apply to decisions about cardiopulmonary resuscitation in mental hygiene facili- ties because those facilities are not covered by Article 29-CC. The policies on non-hospital orders not to resuscitate that will be reenact-

ed by the bill are essential to protect the wishes and well being of terminally ill patients who are cared for at home and in other community settings.

Legislative history

1994: A7166-B - advanced to 3rd reading 1996: A6791 - reported to Rules Committee; 1995: A6791 - advanced to 3rd reading 1998: A7026 - reported to Rules Committee; 1997: A7026 - reported to Codes Committee 1999 and 2000: reported to Rules Committee 2001: A5523 - advanced to 3rd reading; 2002: A5523-A - referred to Health Committee 2003: A6315 - referred to Health Committee; 2004: A6315-A - reported to Codes Committee 2005: A5406 - reported to Codes Committee; 2006: A5406-B - passed Assembly 2007: A6993 - reported to Codes Committee; 2008: A6993-A - reported to Rules Committee

Budget implications

The bill will have no appreciable budgetary impact.

Effective date

Immediately; provided that sections 1 - 25 of the act shall take effect on the first day of the June after enactment, and provided further that effective immediately it shall be lawful for a hospital, as defined in the act, to adopt a policy that is consistent with the requirements of the act, and for a health care provider to accept and carry out a health care decision in accordance with such requirements for a patient in a hospital that has adopted such policy.