LBD03920-01-7
A. 890 2
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]
WITH A DEVELOPMENTAL DISABILITY 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] AN 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 seven-
ty-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, proce-
dures and safeguards which apply to the decision of a guardian to with-
hold or withdraw life-sustaining treatment pursuant to this section.
In the case of a person for whom no guardian has been appointed pursu-
ant to this article or for whom there is no qualified family member or
the Willowbrook consumer advisory board available to make such a deci-
sion, 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 disabili-
ties] JUSTICE CENTER FOR THE PROTECTION OF PEOPLE WITH SPECIAL NEEDS, AS
ESTABLISHED BY ARTICLE TWENTY OF THE EXECUTIVE LAW.
(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 disabil-
ities in conjunction with parents, advocates and family members of
persons [who are intellectually disabled] WITH DEVELOPMENTAL DISABILI-
TIES. Regulations to implement the authority of the Willowbrook consumer
A. 890 3
advisory board pursuant to paragraph (a) of this subdivision may be
promulgated by the commissioner of the office for people with develop-
mental 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.
(D) A PATIENT SUBJECT TO THIS SECTION WHO IS FOUND BY THE ATTENDING
PHYSICIAN TO HAVE CAPACITY TO MAKE HIS OR HER OWN HEALTH CARE DECISIONS,
PURSUANT TO PARAGRAPH (A) OF SUBDIVISION FOUR OF THIS SECTION, UPON
NOTICE TO THE CHIEF EXECUTIVE OFFICER OF A RESIDENTIAL FACILITY OPER-
ATED, LICENSED OR AUTHORIZED BY THE OFFICE FOR PEOPLE WITH DEVELOPMENTAL
DISABILITIES, IN WHICH FACILITY THE PATIENT RESIDES OR FROM WHICH HE OR
SHE WAS TRANSFERRED, AND THE MENTAL HYGIENE LEGAL SERVICE, MAY MAKE HIS
OR HER OWN DECISIONS RELATING TO LIFE-SUSTAINING TREATMENT.
(E) A PATIENT SUBJECT TO THIS SECTION WHO HAS A VALID HEALTH CARE
PROXY AT THE TIME OF A HEALTH CARE DECISION, INCLUDING A DECISION
INVOLVING LIFE-SUSTAINING TREATMENT, SHALL HAVE SUCH DECISIONS MADE IN
ACCORDANCE WITH ARTICLE TWENTY-NINE-C OF THE PUBLIC HEALTH LAW. IF FOR
ANY REASON THE AGENT OR AN ALTERNATE AGENT IS NOT REASONABLY AVAILABLE,
WILLING AND COMPETENT TO SERVE AND THE PATIENT IS OTHERWISE ELIGIBLE TO
HAVE A DECISION AS TO LIFE-SUSTAINING TREATMENT MADE PURSUANT TO THIS
SECTION, ANY GUARDIAN OR PERSON OR ENTITY ENTITLED TO EXERCISE THE
AUTHORITY OF A GUARDIAN UNDER PARAGRAPH (A) OF THIS SUBDIVISION MAY MAKE
SUCH DECISION.
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] WITH A DEVELOP-
MENTAL DISABILITY and, when reasonably known or ascertainable with
reasonable diligence, on [the person who is intellectually disabled's]
SUCH PERSON'S wishes, including moral and religious beliefs.
(b) An assessment of the person [who is intellectually disabled's]
WITH A DEVELOPMENTAL DISABILITY'S best interests shall include consider-
ation of:
(i) the dignity and uniqueness of every person;
(ii) the preservation, improvement or restoration of the [person who
is intellectually disabled's] PERSON'S health;
(iii) the relief of the [person who is intellectually disabled's]
PERSON'S suffering by means of palliative care and pain management;
(iv) the unique nature of [artificially provided] nutrition or
hydration PROVIDED BY MEANS OF MEDICAL TREATMENT, 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] WITH
DEVELOPMENTAL DISABILITIES 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 disabili-
ty] DEVELOPMENTAL DISABILITIES; 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
A. 890 4
is intellectually disabled's] WITH A DEVELOPMENTAL DISABILITY'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] INITIATES a decision to withdraw or withhold life-sustaining
treatment from a person [who is intellectually disabled] WITH A DEVELOP-
MENTAL DISABILITY:
(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 intellec-
tually disabled] WITH A DEVELOPMENTAL DISABILITY lacks capacity to make
health care decisions. The determination thereof shall be included in
the [person who is intellectually disabled's] PERSON'S medical record,
and shall contain such attending physician's opinion regarding the cause
and nature of the [person who is intellectually disabled's] PERSON'S
incapacity as well as its extent and probable duration. The attending
physician who makes the confirmation shall consult with another physi-
cian, or a licensed psychologist, to further confirm the [person who is
intellectually disabled's] PERSON'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] REGIONAL 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 disabili-
ties 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] PEOPLE WITH DEVELOPMENTAL DISABILITIES. A
record of such consultation shall be included in the [person who is
intellectually disabled's] PERSON'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 concur-
rence 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] WITH A DEVELOP-
MENTAL DISABILITY'S chart that:
(i) the person [who is intellectually disabled] has a medical condi-
tion as follows:
A. a terminal condition, [as defined in subdivision twenty-three of
section twenty-nine hundred sixty-one of the public health law] WHICH
SHALL MEAN AN ILLNESS OR INJURY FROM WHICH THERE IS NO RECOVERY, AND
WHICH CAN REASONABLY BE EXPECTED TO CAUSE DEATH WITHIN ONE YEAR; or
B. permanent unconsciousness; or
C. a medical condition other than such person's [intellectual] DEVEL-
OPMENTAL disability which requires life-sustaining treatment, is irre-
versible 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 [intel-
lectual] DEVELOPMENTAL disability; and
A. 890 5
B. the expected outcome of the life-sustaining treatment, notwith-
standing such person's [intellectual] DEVELOPMENTAL 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 extraor-
dinary 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 eigh-
teen years of age or older who shall sign the decision, and presented to
the attending physician, as defined in subdivision two of section twen-
ty-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] WITH A
DEVELOPMENTAL DISABILITY'S attending physician, as defined in subdivi-
sion 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] WITH A DEVELOPMENTAL DISABILITY'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 deci-
sion to withdraw life-sustaining treatment, or at the earliest possible
time prior to the implementation of a decision to withhold life-sustain-
ing treatment, the attending physician shall notify:
(i) the person [who is intellectually disabled] WITH A DEVELOPMENTAL
DISABILITY, 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 physi-
cian who makes the confirmation, or the physician or licensed psychol-
ogist 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 promul-
gated by such commissioner. Such regulations shall require that a physi-
cian or licensed psychologist possess specialized training or three
years experience in treating [intellectual disability] DEVELOPMENTAL
DISABILITIES. A record of such consultation shall be included in the
[person who is intellectually disabled's] PERSON'S medical record;
(ii) if the person is in or was transferred from a residential facili-
ty operated, licensed or authorized by the office for people with devel-
opmental disabilities, the chief executive officer of the agency or
organization operating such facility and the mental hygiene legal
A. 890 6
service. NOTIFICATION TO THE FACILITY DIRECTOR AND THE MENTAL HYGIENE
LEGAL SERVICE SHALL NOT DELAY ISSUANCE OF AN ORDER NOT TO RESUSCITATE;
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.
(F) FOR A PATIENT RESIDING IN A FACILITY OPERATED, LICENSED OR AUTHOR-
IZED BY THE OFFICE FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES AS TO WHOM
AN ORDER NOT TO RESUSCITATE HAS BEEN ENTERED, THE ATTENDING PHYSICIAN
SHALL REVIEW WHETHER THE ORDER IS STILL APPROPRIATE AT SUCH TIMES AND IN
SUCH MANNER AS IS PRESCRIBED BY SUBDIVISION FOUR OF SECTION TWENTY-NINE
HUNDRED NINETY-FOUR-DD OF THE PUBLIC HEALTH LAW.
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] WITH A DEVELOPMENTAL DISABILITY,
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 main-
tained substantial and continuous contact with the person [who is intel-
lectually 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 facili-
ty 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.
NOTWITHSTANDING THE FOREGOING, IN CASES WHERE THE ATTENDING PHYSICIAN
HAS NOTIFIED THE CHIEF EXECUTIVE OFFICER OF AN AGENCY AND THE MENTAL
HYGIENE LEGAL SERVICE OF THE ENTRY OF AN ORDER NOT TO RESUSCITATE PURSU-
ANT TO SUBPARAGRAPH (II) OF PARAGRAPH (E) OF SUBDIVISION FOUR OF THIS
SECTION, AND IF SUCH NOTICE INCLUDES EITHER THE PHYSICIAN'S STATEMENT OF
THE DIAGNOSTIC AND BASIS FOR THE MEDICAL DETERMINATION IN SUPPORT OF THE
PROGNOSTIC ORDER OR AN EXCERPT FROM THE PATIENT'S MEDICAL RECORD THAT IS
SUFFICIENT TO SUPPORT SUCH DETERMINATION, AN ORDER NOT TO RESUSCITATE
SHALL NOT BE STAYED BY AN OBJECTION BY THE PERSONS DESCRIBED IN SUBPARA-
GRAPH (V) OR (VI) OF THIS PARAGRAPH UNLESS THE OBJECTION IS ACCOMPANIED
BY (A) A WRITTEN STATEMENT BY THE OBJECTING PARTY SETTING FORTH A BASIS
FOR ASSERTING THAT A STANDARD IN THIS ARTICLE FOR ENTERING SUCH AN ORDER
HAS NOT BEEN MET; AND (B) IF THE BASIS RELATES TO THE FAILURE TO MEET
MEDICAL CRITERIA IN THIS ARTICLE FOR THE ISSUANCE OF THE ORDER, A WRIT-
TEN STATEMENT BY A HEALTH OR SOCIAL SERVICES PRACTITIONER, AS DEFINED IN
A. 890 7
SUBDIVISION SEVENTEEN OF SECTION TWENTY-NINE HUNDRED NINETY-FOUR-A OF
THE PUBLIC HEALTH LAW SETTING FORTH THE PROFESSIONAL'S OPINION, BASED ON
HIS OR HER REVIEW OF THE AFOREMENTIONED STATEMENT OR MEDICAL RECORD
EXCERPT AND CONSULTATION WITH THE PATIENT'S ATTENDING PHYSICIAN, THAT
THE MEDICAL CRITERIA IN THIS ARTICLE FOR ENTERING SUCH ORDER HAVE NOT
BEEN MET.
(b) Form of objection. Such objection shall occur orally or in writ-
ing.
(c) Notification. In the event of the suspension of a health care
decision pursuant to this subdivision, the objecting party shall prompt-
ly 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] WITH A
DEVELOPMENTAL DISABILITY'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 [a dispute medi-
ation system, established pursuant to section two thousand nine hundred
seventy-two] AN ETHICS REVIEW COMMITTEE, ESTABLISHED PURSUANT TO SECTION
TWENTY-NINE HUNDRED NINETY-FOUR-M of the public health law or similar
entity for mediating disputes in a hospice, such as a patient's advo-
cate's office[,] OR 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] MAY proceed to judicial review pursuant to this subdi-
vision. 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 physi-
cian, 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 disabili-
ties or his or her designee (if the person is not in and was not trans-
ferred from such a facility or program) may commence a special proceed-
ing 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] WITH A DEVELOPMENTAL
DISABILITY, 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]
A. 890 8
WITH A DEVELOPMENTAL DISABILITY, 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 hospi-
tal'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] WITH A DEVELOPMENTAL DISABILITY, 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 disa-
bled] WITH A DEVELOPMENTAL DISABILITY, a hospital or individual health
care provider that does not wish to provide such treatment shall none-
theless 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 employ-
ee thereof shall be subjected to criminal or civil liability, or be
deemed to have engaged in unprofessional conduct, for honoring reason-
ably 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.
§ 2. This act shall take effect on the ninetieth day after it shall
have become a law.