N.Y. Surrogate's Court Procedure Act § 1750-b: Health care decisions for persons who are intellectually disabled 1

§ 1750-b. Health care decisions for persons who are intellectually

disabled

1. Scope of authority. Unless specifically prohibited by the court

after consideration of the determination, if any, regarding a person who

is intellectually disabled's capacity to make health care decisions,

which is required by section seventeen hundred fifty of this article,

the guardian of such person appointed pursuant to section seventeen

hundred fifty of this article shall have the authority to make any and

all health care decisions, as defined by subdivision six of section

twenty-nine hundred eighty of the public health law, on behalf of the

person who is intellectually disabled that such person could make if

such person had capacity. Such decisions may include decisions to

withhold or withdraw life-sustaining treatment. For purposes of this

section, "life-sustaining treatment" means medical treatment, including

cardiopulmonary resuscitation and nutrition and hydration provided by

means of medical treatment, which is sustaining life functions and

without which, according to reasonable medical judgment, the patient

will die within a relatively short time period. Cardiopulmonary

resuscitation is presumed to be life-sustaining treatment without the

necessity of a medical judgment by an attending physician. The

provisions of this article are not intended to permit or promote

suicide, assisted suicide or euthanasia; accordingly, nothing in this

section shall be construed to permit a guardian to consent to any act or

omission to which the person who is intellectually disabled could not

consent if such person had capacity.

(a) For the purposes of making a decision to withhold or withdraw

life-sustaining treatment pursuant to this section, in the case of a

person for whom no guardian has been appointed pursuant to section

seventeen hundred fifty or seventeen hundred fifty-a of this article, a

"guardian" shall also mean a family member of a person who (i) has

intellectual disability, or (ii) has a developmental disability, as

defined in section 1.03 of the mental hygiene law, which (A) includes

intellectual disability, or (B) results in a similar impairment of

general intellectual functioning or adaptive behavior so that such

person is incapable of managing himself or herself, and/or his or her

affairs by reason of such developmental disability. Qualified family

members shall be included in a prioritized list of said family members

pursuant to regulations established by the commissioner of the office

for people with developmental disabilities. Such family members must

have a significant and ongoing involvement in a person's life so as to

have sufficient knowledge of their needs and, when reasonably known or

ascertainable, the person's wishes, including moral and religious

beliefs. In the case of a person who was a resident of the former

Willowbrook state school on March seventeenth, nineteen hundred

seventy-two and those individuals who were in community care status on

that date and subsequently returned to Willowbrook or a related

facility, who are fully represented by the consumer advisory board and

who have no guardians appointed pursuant to this article or have no

qualified family members to make such a decision, then a "guardian"

shall also mean the Willowbrook consumer advisory board. A decision of

such family member or the Willowbrook consumer advisory board to

withhold or withdraw life-sustaining treatment shall be subject to all

of the protections, procedures and safeguards which apply to the

decision of a guardian to withhold or withdraw life-sustaining treatment

pursuant to this section.

In the case of a person for whom no guardian has been appointed

pursuant to this article or for whom there is no qualified family member

or the Willowbrook consumer advisory board available to make such a

decision, a "guardian" shall also mean, notwithstanding the definitions

in section 80.03 of the mental hygiene law, a surrogate decision-making

committee, as defined in article eighty of the mental hygiene law. All

declarations and procedures, including expedited procedures, to comply

with this section shall be established by regulations promulgated by the

commission on quality of care and advocacy for persons with

disabilities.

(b) Regulations establishing the prioritized list of qualified family

members required by paragraph (a) of this subdivision shall be developed

by the commissioner of the office for people with developmental

disabilities in conjunction with parents, advocates and family members

of persons who are intellectually disabled. Regulations to implement the

authority of the Willowbrook consumer advisory board pursuant to

paragraph (a) of this subdivision may be promulgated by the commissioner

of the office for people with developmental disabilities with advice

from the Willowbrook consumer advisory board.

(c) Notwithstanding any provision of law to the contrary, the formal

determinations required pursuant to section seventeen hundred fifty of

this article shall only apply to guardians appointed pursuant to section

seventeen hundred fifty or seventeen hundred fifty-a of this article.

2. Decision-making standard. (a) The guardian shall base all advocacy

and health care decision-making solely and exclusively on the best

interests of the person who is intellectually disabled and, when

reasonably known or ascertainable with reasonable diligence, on the

person who is intellectually disabled's wishes, including moral and

religious beliefs.

(b) An assessment of the person who is intellectually disabled's best

interests shall include consideration of:

(i) the dignity and uniqueness of every person;

(ii) the preservation, improvement or restoration of the person who is

intellectually disabled's health;

(iii) the relief of the person who is intellectually disabled's

suffering by means of palliative care and pain management;

(iv) the unique nature of artificially provided nutrition or

hydration, and the effect it may have on the person who is

intellectually disabled; and

(v) the entire medical condition of the person.

(c) No health care decision shall be influenced in any way by:

(i) a presumption that persons who are intellectually disabled are not

entitled to the full and equal rights, equal protection, respect,

medical care and dignity afforded to persons without an intellectual

disability or a developmental disability; or

(ii) financial considerations of the guardian, as such considerations

affect the guardian, a health care provider or any other party.

3. Right to receive information. Subject to the provisions of sections

33.13 and 33.16 of the mental hygiene law, the guardian shall have the

right to receive all medical information and medical and clinical

records necessary to make informed decisions regarding the person who is

intellectually disabled's health care.

4. Life-sustaining treatment. The guardian shall have the affirmative

obligation to advocate for the full and efficacious provision of health

care, including life-sustaining treatment. In the event that a guardian

makes a decision to withdraw or withhold life-sustaining treatment from

a person who is intellectually disabled:

(a) The attending physician, as defined in subdivision two of section

twenty-nine hundred eighty of the public health law, must confirm to a

reasonable degree of medical certainty that the person who is

intellectually disabled lacks capacity to make health care decisions.

The determination thereof shall be included in the person who is

intellectually disabled's medical record, and shall contain such

attending physician's opinion regarding the cause and nature of the

person who is intellectually disabled's incapacity as well as its extent

and probable duration. The attending physician who makes the

confirmation shall consult with another physician, or a licensed

psychologist, to further confirm the person who is intellectually

disabled's lack of capacity. The attending physician who makes the

confirmation, or the physician or licensed psychologist with whom the

attending physician consults, must (i) be employed by a developmental

disabilities services office named in section 13.17 of the mental

hygiene law or employed by the office for people with developmental

disabilities to provide treatment and care to people with developmental

disabilities, or (ii) have been employed for a minimum of two years to

render care and service in a facility or program operated, licensed or

authorized by the office for people with developmental disabilities, or

(iii) have been approved by the commissioner of the office for people

with developmental disabilities in accordance with regulations

promulgated by such commissioner. Such regulations shall require that a

physician or licensed psychologist possess specialized training or three

years experience in treating intellectual disability. A record of such

consultation shall be included in the person who is intellectually

disabled's medical record.

(b) The attending physician, as defined in subdivision two of section

twenty-nine hundred eighty of the public health law, with the

concurrence of another physician with whom such attending physician

shall consult, must determine to a reasonable degree of medical

certainty and note on the person who is intellectually disabled's chart

that:

(i) the person who is intellectually disabled has a medical condition

as follows:

A. a terminal condition, which for the purpose of this section means

an illness or injury from which there is no recovery, and which

reasonably can be expected to cause death within one year; or

B. permanent unconsciousness; or

C. a medical condition other than such person's intellectual

disability which requires life-sustaining treatment, is irreversible and

which will continue indefinitely; and

(ii) the life-sustaining treatment would impose an extraordinary

burden on such person, in light of:

A. such person's medical condition, other than such person's

intellectual disability; and

B. the expected outcome of the life-sustaining treatment,

notwithstanding such person's intellectual disability; and

(iii) in the case of a decision to withdraw or withhold artificially

provided nutrition or hydration:

A. there is no reasonable hope of maintaining life; or

B. the artificially provided nutrition or hydration poses an

extraordinary burden.

(c) The guardian shall express a decision to withhold or withdraw

life-sustaining treatment either:

(i) in writing, dated and signed in the presence of one witness

eighteen years of age or older who shall sign the decision, and

presented to the attending physician, as defined in subdivision two of

section twenty-nine hundred eighty of the public health law; or

(ii) orally, to two persons eighteen years of age or older, at least

one of whom is the person who is intellectually disabled's attending

physician, as defined in subdivision two of section twenty-nine hundred

eighty of the public health law.

(d) The attending physician, as defined in subdivision two of section

twenty-nine hundred eighty of the public health law, who is provided

with the decision of a guardian shall include the decision in the person

who is intellectually disabled's medical chart, and shall either:

(i) promptly issue an order to withhold or withdraw life-sustaining

treatment from the person who is intellectually disabled, and inform the

staff responsible for such person's care, if any, of the order; or

(ii) promptly object to such decision, in accordance with subdivision

five of this section.

(e) At least forty-eight hours prior to the implementation of a

decision to withdraw life-sustaining treatment, or at the earliest

possible time prior to the implementation of a decision to withhold

life-sustaining treatment, the attending physician shall notify:

(i) the person who is intellectually disabled, except if the attending

physician determines, in writing and in consultation with another

physician or a licensed psychologist, that, to a reasonable degree of

medical certainty, the person would suffer immediate and severe injury

from such notification. The attending physician who makes the

confirmation, or the physician or licensed psychologist with whom the

attending physician consults, shall:

A. be employed by a developmental disabilities services office named

in section 13.17 of the mental hygiene law or employed by the office for

people with developmental disabilities to provide treatment and care to

people with developmental disabilities, or

B. have been employed for a minimum of two years to render care and

service in a facility operated, licensed or authorized by the office for

people with developmental disabilities, or

C. have been approved by the commissioner of the office for people

with developmental disabilities in accordance with regulations

promulgated by such commissioner. Such regulations shall require that a

physician or licensed psychologist possess specialized training or three

years experience in treating intellectual disability. A record of such

consultation shall be included in the person who is intellectually

disabled's medical record;

(ii) if the person is in or was transferred from a residential

facility operated, licensed or authorized by the office for people with

developmental disabilities, the chief executive officer of the agency or

organization operating such facility and the mental hygiene legal

service; and

(iii) if the person is not in and was not transferred from such a

facility or program, the commissioner of the office for people with

developmental disabilities, or his or her designee.

5. Objection to health care decision. (a) Suspension. A health care

decision made pursuant to subdivision four of this section shall be

suspended, pending judicial review, except if the suspension would in

reasonable medical judgment be likely to result in the death of the

person who is intellectually disabled, in the event of an objection to

that decision at any time by:

(i) the person who is intellectually disabled on whose behalf such

decision was made; or

(ii) a parent or adult sibling who either resides with or has

maintained substantial and continuous contact with the person who is

intellectually disabled; or

(iii) the attending physician, as defined in subdivision two of

section twenty-nine hundred eighty of the public health law; or

(iv) any other health care practitioner providing services to the

person who is intellectually disabled, who is licensed pursuant to

article one hundred thirty-one, one hundred thirty-one-B, one hundred

thirty-two, one hundred thirty-three, one hundred thirty-six, one

hundred thirty-nine, one hundred forty-one, one hundred forty-three, one

hundred forty-four, one hundred fifty-three, one hundred fifty-four, one

hundred fifty-six, one hundred fifty-nine or one hundred sixty-four of

the education law; or

(v) the chief executive officer identified in subparagraph (ii) of

paragraph (e) of subdivision four of this section; or

(vi) if the person is in or was transferred from a residential

facility or program operated, approved or licensed by the office for

people with developmental disabilities, the mental hygiene legal

service; or

(vii) if the person is not in and was not transferred from such a

facility or program, the commissioner of the office for people with

developmental disabilities, or his or her designee.

(b) Form of objection. Such objection shall occur orally or in

writing.

(c) Notification. In the event of the suspension of a health care

decision pursuant to this subdivision, the objecting party shall

promptly notify the guardian and the other parties identified in

paragraph (a) of this subdivision, and the attending physician shall

record such suspension in the person who is intellectually disabled's

medical chart.

(d) Dispute mediation. In the event of an objection pursuant to this

subdivision, at the request of the objecting party or person or entity

authorized to act as a guardian under this section, except a surrogate

decision making committee established pursuant to article eighty of the

mental hygiene law, such objection shall be referred to an ethics review

committee, established pursuant to section two thousand nine hundred

ninety-four-m of the public health law or similar entity for mediating

disputes in a hospice, such as a patient's advocate's office, hospital

chaplain's office or ethics committee, as described in writing and

adopted by the governing authority of such hospice, for non-binding

mediation. In the event that such dispute cannot be resolved within

seventy-two hours or no such mediation entity exists or is reasonably

available for mediation of a dispute, the objection shall proceed to

judicial review pursuant to this subdivision. The party requesting

mediation shall provide notification to those parties entitled to notice

pursuant to paragraph (a) of this subdivision.

6. Special proceeding authorized. The guardian, the attending

physician, as defined in subdivision two of section twenty-nine hundred

eighty of the public health law, the chief executive officer identified

in subparagraph (ii) of paragraph (e) of subdivision four of this

section, the mental hygiene legal service (if the person is in or was

transferred from a residential facility or program operated, approved or

licensed by the office for people with developmental disabilities) or

the commissioner of the office for people with developmental

disabilities or his or her designee (if the person is not in and was not

transferred from such a facility or program) may commence a special

proceeding in a court of competent jurisdiction with respect to any

dispute arising under this section, including objecting to the

withdrawal or withholding of life-sustaining treatment because such

withdrawal or withholding is not in accord with the criteria set forth

in this section.

7. Provider's obligations. (a) A health care provider shall comply

with the health care decisions made by a guardian in good faith pursuant

to this section, to the same extent as if such decisions had been made

by the person who is intellectually disabled, if such person had

capacity.

(b) Notwithstanding paragraph (a) of this subdivision, nothing in this

section shall be construed to require a private hospital to honor a

guardian's health care decision that the hospital would not honor if the

decision had been made by the person who is intellectually disabled, if

such person had capacity, because the decision is contrary to a formally

adopted written policy of the hospital expressly based on religious

beliefs or sincerely held moral convictions central to the hospital's

operating principles, and the hospital would be permitted by law to

refuse to honor the decision if made by such person, provided:

(i) the hospital has informed the guardian of such policy prior to or

upon admission, if reasonably possible; and

(ii) the person who is intellectually disabled is transferred promptly

to another hospital that is reasonably accessible under the

circumstances and is willing to honor the guardian's decision. If the

guardian is unable or unwilling to arrange such a transfer, the

hospital's refusal to honor the decision of the guardian shall

constitute an objection pursuant to subdivision five of this section.

(c) Notwithstanding paragraph (a) of this subdivision, nothing in this

section shall be construed to require an individual health care provider

to honor a guardian's health care decision that the individual would not

honor if the decision had been made by the person who is intellectually

disabled, if such person had capacity, because the decision is contrary

to the individual's religious beliefs or sincerely held moral

convictions, provided the individual health care provider promptly

informs the guardian and the facility, if any, of his or her refusal to

honor the guardian's decision. In such event, the facility shall

promptly transfer responsibility for the person who is intellectually

disabled to another individual health care provider willing to honor the

guardian's decision. The individual health care provider shall cooperate

in facilitating such transfer of the patient.

(d) Notwithstanding the provisions of any other paragraph of this

subdivision, if a guardian directs the provision of life-sustaining

treatment, the denial of which in reasonable medical judgment would be

likely to result in the death of the person who is intellectually

disabled, a hospital or individual health care provider that does not

wish to provide such treatment shall nonetheless comply with the

guardian's decision pending either transfer of the person who is

intellectually disabled to a willing hospital or individual health care

provider, or judicial review.

(e) Nothing in this section shall affect or diminish the authority of

a surrogate decision-making panel to render decisions regarding major

medical treatment pursuant to article eighty of the mental hygiene law.

8. Immunity. (a) Provider immunity. No health care provider or

employee thereof shall be subjected to criminal or civil liability, or

be deemed to have engaged in unprofessional conduct, for honoring

reasonably and in good faith a health care decision by a guardian, or

for other actions taken reasonably and in good faith pursuant to this

section.

(b) Guardian immunity. No guardian shall be subjected to criminal or

civil liability for making a health care decision reasonably and in good

faith pursuant to this section.