§ 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.