§ 1750-B — Health care decisions for persons who are intellectually disabled 1

§ 1750-b. Health care decisions for persons who are intellectually\n disabled\n 1. Scope of authority. Unless specifically prohibited by the court\nafter consideration of the determination, if any, regarding a person who\nis intellectually disabled's capacity to make health care decisions,\nwhich is required by section seventeen hundred fifty of this article,\nthe guardian of such person appointed pursuant to section seventeen\nhundred fifty of this article shall have the authority to make any and\nall health care decisions, as defined by subdivision six of section\ntwenty-nine hundred eighty of the public health law, on behalf of the\nperson who is intellectually disabled that such person could make if\nsuch person had capacity. Such decisions may include decisions to\nwithhold or withdraw life-sustaining treatment. For purposes of this\nsection, "life-sustaining treatment" means medical treatment, including\ncardiopulmonary resuscitation and nutrition and hydration provided by\nmeans of medical treatment, which is sustaining life functions and\nwithout which, according to reasonable medical judgment, the patient\nwill die within a relatively short time period. Cardiopulmonary\nresuscitation is presumed to be life-sustaining treatment without the\nnecessity of a medical judgment by an attending physician. The\nprovisions of this article are not intended to permit or promote\nsuicide, assisted suicide or euthanasia; accordingly, nothing in this\nsection shall be construed to permit a guardian to consent to any act or\nomission to which the person who is intellectually disabled could not\nconsent if such person had capacity.\n (a) For the purposes of making a decision to withhold or withdraw\nlife-sustaining treatment pursuant to this section, in the case of a\nperson for whom no guardian has been appointed pursuant to section\nseventeen hundred fifty or seventeen hundred fifty-a of this article, a\n"guardian" shall also mean a family member of a person who (i) has\nintellectual disability, or (ii) has a developmental disability, as\ndefined in section 1.03 of the mental hygiene law, which (A) includes\nintellectual disability, or (B) results in a similar impairment of\ngeneral intellectual functioning or adaptive behavior so that such\nperson is incapable of managing himself or herself, and/or his or her\naffairs by reason of such developmental disability. Qualified family\nmembers shall be included in a prioritized list of said family members\npursuant to regulations established by the commissioner of the office\nfor people with developmental disabilities. Such family members must\nhave a significant and ongoing involvement in a person's life so as to\nhave sufficient knowledge of their needs and, when reasonably known or\nascertainable, the person's wishes, including moral and religious\nbeliefs. In the case of a person who was a resident of the former\nWillowbrook state school on March seventeenth, nineteen hundred\nseventy-two and those individuals who were in community care status on\nthat date and subsequently returned to Willowbrook or a related\nfacility, who are fully represented by the consumer advisory board and\nwho have no guardians appointed pursuant to this article or have no\nqualified family members to make such a decision, then a "guardian"\nshall also mean the Willowbrook consumer advisory board. A decision of\nsuch family member or the Willowbrook consumer advisory board to\nwithhold or withdraw life-sustaining treatment shall be subject to all\nof the protections, procedures and safeguards which apply to the\ndecision of a guardian to withhold or withdraw life-sustaining treatment\npursuant to this section.\n In the case of a person for whom no guardian has been appointed\npursuant to this article or for whom there is no qualified family member\nor the Willowbrook consumer advisory board available to make such a\ndecision, a "guardian" shall also mean, notwithstanding the definitions\nin section 80.03 of the mental hygiene law, a surrogate decision-making\ncommittee, as defined in article eighty of the mental hygiene law. All\ndeclarations and procedures, including expedited procedures, to comply\nwith this section shall be established by regulations promulgated by the\ncommission on quality of care and advocacy for persons with\ndisabilities.\n (b) Regulations establishing the prioritized list of qualified family\nmembers required by paragraph (a) of this subdivision shall be developed\nby the commissioner of the office for people with developmental\ndisabilities in conjunction with parents, advocates and family members\nof persons who are intellectually disabled. Regulations to implement the\nauthority of the Willowbrook consumer advisory board pursuant to\nparagraph (a) of this subdivision may be promulgated by the commissioner\nof the office for people with developmental disabilities with advice\nfrom the Willowbrook consumer advisory board.\n (c) Notwithstanding any provision of law to the contrary, the formal\ndeterminations required pursuant to section seventeen hundred fifty of\nthis article shall only apply to guardians appointed pursuant to section\nseventeen hundred fifty or seventeen hundred fifty-a of this article.\n 2. Decision-making standard. (a) The guardian shall base all advocacy\nand health care decision-making solely and exclusively on the best\ninterests of the person who is intellectually disabled and, when\nreasonably known or ascertainable with reasonable diligence, on the\nperson who is intellectually disabled's wishes, including moral and\nreligious beliefs.\n (b) An assessment of the person who is intellectually disabled's best\ninterests shall include consideration of:\n (i) the dignity and uniqueness of every person;\n (ii) the preservation, improvement or restoration of the person who is\nintellectually disabled's health;\n (iii) the relief of the person who is intellectually disabled's\nsuffering by means of palliative care and pain management;\n (iv) the unique nature of artificially provided nutrition or\nhydration, and the effect it may have on the person who is\nintellectually disabled; and\n (v) the entire medical condition of the person.\n (c) No health care decision shall be influenced in any way by:\n (i) a presumption that persons who are intellectually disabled are not\nentitled to the full and equal rights, equal protection, respect,\nmedical care and dignity afforded to persons without an intellectual\ndisability or a developmental disability; or\n (ii) financial considerations of the guardian, as such considerations\naffect the guardian, a health care provider or any other party.\n 3. Right to receive information. Subject to the provisions of sections\n33.13 and 33.16 of the mental hygiene law, the guardian shall have the\nright to receive all medical information and medical and clinical\nrecords necessary to make informed decisions regarding the person who is\nintellectually disabled's health care.\n 4. Life-sustaining treatment. The guardian shall have the affirmative\nobligation to advocate for the full and efficacious provision of health\ncare, including life-sustaining treatment. In the event that a guardian\nmakes a decision to withdraw or withhold life-sustaining treatment from\na person who is intellectually disabled:\n (a) The attending physician, as defined in subdivision two of section\ntwenty-nine hundred eighty of the public health law, must confirm to a\nreasonable degree of medical certainty that the person who is\nintellectually disabled lacks capacity to make health care decisions.\nThe determination thereof shall be included in the person who is\nintellectually disabled's medical record, and shall contain such\nattending physician's opinion regarding the cause and nature of the\nperson who is intellectually disabled's incapacity as well as its extent\nand probable duration. The attending physician who makes the\nconfirmation shall consult with another physician, or a licensed\npsychologist, to further confirm the person who is intellectually\ndisabled's lack of capacity. The attending physician who makes the\nconfirmation, or the physician or licensed psychologist with whom the\nattending physician consults, must (i) be employed by a developmental\ndisabilities services office named in section 13.17 of the mental\nhygiene law or employed by the office for people with developmental\ndisabilities to provide treatment and care to people with developmental\ndisabilities, or (ii) have been employed for a minimum of two years to\nrender care and service in a facility or program operated, licensed or\nauthorized by the office for people with developmental disabilities, or\n(iii) have been approved by the commissioner of the office for people\nwith developmental disabilities in accordance with regulations\npromulgated by such commissioner. Such regulations shall require that a\nphysician or licensed psychologist possess specialized training or three\nyears experience in treating intellectual disability. A record of such\nconsultation shall be included in the person who is intellectually\ndisabled's medical record.\n (b) The attending physician, as defined in subdivision two of section\ntwenty-nine hundred eighty of the public health law, with the\nconcurrence of another physician with whom such attending physician\nshall consult, must determine to a reasonable degree of medical\ncertainty and note on the person who is intellectually disabled's chart\nthat:\n (i) the person who is intellectually disabled has a medical condition\nas follows:\n A. a terminal condition, which for the purpose of this section means\nan illness or injury from which there is no recovery, and which\nreasonably can be expected to cause death within one year; or\n B. permanent unconsciousness; or\n C. a medical condition other than such person's intellectual\ndisability which requires life-sustaining treatment, is irreversible and\nwhich will continue indefinitely; and\n (ii) the life-sustaining treatment would impose an extraordinary\nburden on such person, in light of:\n A. such person's medical condition, other than such person's\nintellectual disability; and\n B. the expected outcome of the life-sustaining treatment,\nnotwithstanding such person's intellectual disability; and\n (iii) in the case of a decision to withdraw or withhold artificially\nprovided nutrition or hydration:\n A. there is no reasonable hope of maintaining life; or\n B. the artificially provided nutrition or hydration poses an\nextraordinary burden.\n (c) The guardian shall express a decision to withhold or withdraw\nlife-sustaining treatment either:\n (i) in writing, dated and signed in the presence of one witness\neighteen years of age or older who shall sign the decision, and\npresented to the attending physician, as defined in subdivision two of\nsection twenty-nine hundred eighty of the public health law; or\n (ii) orally, to two persons eighteen years of age or older, at least\none of whom is the person who is intellectually disabled's attending\nphysician, as defined in subdivision two of section twenty-nine hundred\neighty of the public health law.\n (d) The attending physician, as defined in subdivision two of section\ntwenty-nine hundred eighty of the public health law, who is provided\nwith the decision of a guardian shall include the decision in the person\nwho is intellectually disabled's medical chart, and shall either:\n (i) promptly issue an order to withhold or withdraw life-sustaining\ntreatment from the person who is intellectually disabled, and inform the\nstaff responsible for such person's care, if any, of the order; or\n (ii) promptly object to such decision, in accordance with subdivision\nfive of this section.\n (e) At least forty-eight hours prior to the implementation of a\ndecision to withdraw life-sustaining treatment, or at the earliest\npossible time prior to the implementation of a decision to withhold\nlife-sustaining treatment, the attending physician shall notify:\n (i) the person who is intellectually disabled, except if the attending\nphysician determines, in writing and in consultation with another\nphysician or a licensed psychologist, that, to a reasonable degree of\nmedical certainty, the person would suffer immediate and severe injury\nfrom such notification. The attending physician who makes the\nconfirmation, or the physician or licensed psychologist with whom the\nattending physician consults, shall:\n A. be employed by a developmental disabilities services office named\nin section 13.17 of the mental hygiene law or employed by the office for\npeople with developmental disabilities to provide treatment and care to\npeople with developmental disabilities, or\n B. have been employed for a minimum of two years to render care and\nservice in a facility operated, licensed or authorized by the office for\npeople with developmental disabilities, or\n C. have been approved by the commissioner of the office for people\nwith developmental disabilities in accordance with regulations\npromulgated by such commissioner. Such regulations shall require that a\nphysician or licensed psychologist possess specialized training or three\nyears experience in treating intellectual disability. A record of such\nconsultation shall be included in the person who is intellectually\ndisabled's medical record;\n (ii) if the person is in or was transferred from a residential\nfacility operated, licensed or authorized by the office for people with\ndevelopmental disabilities, the chief executive officer of the agency or\norganization operating such facility and the mental hygiene legal\nservice; and\n (iii) if the person is not in and was not transferred from such a\nfacility or program, the commissioner of the office for people with\ndevelopmental disabilities, or his or her designee.\n 5. Objection to health care decision. (a) Suspension. A health care\ndecision made pursuant to subdivision four of this section shall be\nsuspended, pending judicial review, except if the suspension would in\nreasonable medical judgment be likely to result in the death of the\nperson who is intellectually disabled, in the event of an objection to\nthat decision at any time by:\n (i) the person who is intellectually disabled on whose behalf such\ndecision was made; or\n (ii) a parent or adult sibling who either resides with or has\nmaintained substantial and continuous contact with the person who is\nintellectually disabled; or\n (iii) the attending physician, as defined in subdivision two of\nsection twenty-nine hundred eighty of the public health law; or\n (iv) any other health care practitioner providing services to the\nperson who is intellectually disabled, who is licensed pursuant to\narticle one hundred thirty-one, one hundred thirty-one-B, one hundred\nthirty-two, one hundred thirty-three, one hundred thirty-six, one\nhundred thirty-nine, one hundred forty-one, one hundred forty-three, one\nhundred forty-four, one hundred fifty-three, one hundred fifty-four, one\nhundred fifty-six, one hundred fifty-nine or one hundred sixty-four of\nthe education law; or\n (v) the chief executive officer identified in subparagraph (ii) of\nparagraph (e) of subdivision four of this section; or\n (vi) if the person is in or was transferred from a residential\nfacility or program operated, approved or licensed by the office for\npeople with developmental disabilities, the mental hygiene legal\nservice; or\n (vii) if the person is not in and was not transferred from such a\nfacility or program, the commissioner of the office for people with\ndevelopmental disabilities, or his or her designee.\n (b) Form of objection. Such objection shall occur orally or in\nwriting.\n (c) Notification. In the event of the suspension of a health care\ndecision pursuant to this subdivision, the objecting party shall\npromptly notify the guardian and the other parties identified in\nparagraph (a) of this subdivision, and the attending physician shall\nrecord such suspension in the person who is intellectually disabled's\nmedical chart.\n (d) Dispute mediation. In the event of an objection pursuant to this\nsubdivision, at the request of the objecting party or person or entity\nauthorized to act as a guardian under this section, except a surrogate\ndecision making committee established pursuant to article eighty of the\nmental hygiene law, such objection shall be referred to an ethics review\ncommittee, established pursuant to section two thousand nine hundred\nninety-four-m of the public health law or similar entity for mediating\ndisputes in a hospice, such as a patient's advocate's office, hospital\nchaplain's office or ethics committee, as described in writing and\nadopted by the governing authority of such hospice, for non-binding\nmediation. In the event that such dispute cannot be resolved within\nseventy-two hours or no such mediation entity exists or is reasonably\navailable for mediation of a dispute, the objection shall proceed to\njudicial review pursuant to this subdivision. The party requesting\nmediation shall provide notification to those parties entitled to notice\npursuant to paragraph (a) of this subdivision.\n 6. Special proceeding authorized. The guardian, the attending\nphysician, as defined in subdivision two of section twenty-nine hundred\neighty of the public health law, the chief executive officer identified\nin subparagraph (ii) of paragraph (e) of subdivision four of this\nsection, the mental hygiene legal service (if the person is in or was\ntransferred from a residential facility or program operated, approved or\nlicensed by the office for people with developmental disabilities) or\nthe commissioner of the office for people with developmental\ndisabilities or his or her designee (if the person is not in and was not\ntransferred from such a facility or program) may commence a special\nproceeding in a court of competent jurisdiction with respect to any\ndispute arising under this section, including objecting to the\nwithdrawal or withholding of life-sustaining treatment because such\nwithdrawal or withholding is not in accord with the criteria set forth\nin this section.\n 7. Provider's obligations. (a) A health care provider shall comply\nwith the health care decisions made by a guardian in good faith pursuant\nto this section, to the same extent as if such decisions had been made\nby the person who is intellectually disabled, if such person had\ncapacity.\n (b) Notwithstanding paragraph (a) of this subdivision, nothing in this\nsection shall be construed to require a private hospital to honor a\nguardian's health care decision that the hospital would not honor if the\ndecision had been made by the person who is intellectually disabled, if\nsuch person had capacity, because the decision is contrary to a formally\nadopted written policy of the hospital expressly based on religious\nbeliefs or sincerely held moral convictions central to the hospital's\noperating principles, and the hospital would be permitted by law to\nrefuse to honor the decision if made by such person, provided:\n (i) the hospital has informed the guardian of such policy prior to or\nupon admission, if reasonably possible; and\n (ii) the person who is intellectually disabled is transferred promptly\nto another hospital that is reasonably accessible under the\ncircumstances and is willing to honor the guardian's decision. If the\nguardian is unable or unwilling to arrange such a transfer, the\nhospital's refusal to honor the decision of the guardian shall\nconstitute an objection pursuant to subdivision five of this section.\n (c) Notwithstanding paragraph (a) of this subdivision, nothing in this\nsection shall be construed to require an individual health care provider\nto honor a guardian's health care decision that the individual would not\nhonor if the decision had been made by the person who is intellectually\ndisabled, if such person had capacity, because the decision is contrary\nto the individual's religious beliefs or sincerely held moral\nconvictions, provided the individual health care provider promptly\ninforms the guardian and the facility, if any, of his or her refusal to\nhonor the guardian's decision. In such event, the facility shall\npromptly transfer responsibility for the person who is intellectually\ndisabled to another individual health care provider willing to honor the\nguardian's decision. The individual health care provider shall cooperate\nin facilitating such transfer of the patient.\n (d) Notwithstanding the provisions of any other paragraph of this\nsubdivision, if a guardian directs the provision of life-sustaining\ntreatment, the denial of which in reasonable medical judgment would be\nlikely to result in the death of the person who is intellectually\ndisabled, a hospital or individual health care provider that does not\nwish to provide such treatment shall nonetheless comply with the\nguardian's decision pending either transfer of the person who is\nintellectually disabled to a willing hospital or individual health care\nprovider, or judicial review.\n (e) Nothing in this section shall affect or diminish the authority of\na surrogate decision-making panel to render decisions regarding major\nmedical treatment pursuant to article eighty of the mental hygiene law.\n 8. Immunity. (a) Provider immunity. No health care provider or\nemployee thereof shall be subjected to criminal or civil liability, or\nbe deemed to have engaged in unprofessional conduct, for honoring\nreasonably and in good faith a health care decision by a guardian, or\nfor other actions taken reasonably and in good faith pursuant to this\nsection.\n (b) Guardian immunity. No guardian shall be subjected to criminal or\ncivil liability for making a health care decision reasonably and in good\nfaith pursuant to this section.\n