LBD13652-03-4
S. 7157 2
means medical treatment, including cardiopulmonary resuscitation , INTU-
BATION AND/OR MECHANICAL VENTILATION and nutrition and hydration
provided by means of medical treatment, which is OR WOULD BE sustaining
life functions and without which, according to reasonable medical judg-
ment, the patient will die within a relatively short time period.
Cardiopulmonary resuscitation is presumed to be life-sustaining treat-
ment without the necessity of a medical judgment by an attending physi-
cian. 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 [mentally retarded] person WITH A DEVELOP-
MENTAL 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
mental retardation, or (ii)] has a developmental disability, as defined
in section 1.03 of the mental hygiene law, which [(A) includes mental
retardation, 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 [mental retardation and]
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 deci-
sion, then a "guardian" shall also mean the Willowbrook consumer advi-
sory 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-sus-
taining 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 [mental retardation and] developmental disabili-
ties in conjunction with parents, advocates and family members of
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persons [who are mentally retarded] WITH DEVELOPMENTAL DISABILITIES.
Regulations to implement the authority of the Willowbrook consumer advi-
sory board pursuant to paragraph (a) of this subdivision may be promul-
gated by the commissioner of the office of [mental retardation and]
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.
(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 [mentally retarded] person WITH A DEVELOPMENTAL DISA-
BILITY and, when reasonably known or ascertainable with reasonable dili-
gence, on [the mentally retarded] SUCH person's wishes, including moral
and religious beliefs.
(b) An assessment of the [mentally retarded person's] PERSON WITH A
DEVELOPMENTAL DISABILITY'S best interests shall include consideration
of:
(i) the dignity and uniqueness of every person;
(ii) the preservation, improvement or restoration of the [mentally
retarded] person's health;
(iii) the relief of the [mentally retarded] 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 [mentally retarded] person; 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 with [mental retardation] DEVELOPMENTAL
DISABILITIES are not entitled to the full and equal rights, equal
protection, respect, medical care and dignity afforded to persons with-
out [mental retardation or] 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
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records necessary to make informed decisions regarding the [mentally
retarded person's] PERSON 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 [mentally retarded] person WITH A DEVELOPMENTAL DISA-
BILITY:
(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 [mentally retarded]
person WITH A DEVELOPMENTAL DISABILITY lacks capacity to make health
care decisions. The determination thereof shall be included in the
[mentally retarded] person's medical record, and shall contain such
attending physician's opinion regarding the cause and nature of the
[mentally retarded] person's incapacity as well as its extent and proba-
ble duration. The attending physician who makes the confirmation shall
consult with another physician, or a licensed psychologist, to further
confirm the [mentally retarded] 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 [of
mental retardation and] FOR PEOPLE WITH developmental disabilities, or
(iii) have been approved by the commissioner of [mental retardation and]
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 expe-
rience in treating [mental retardation] PEOPLE WITH DEVELOPMENTAL DISA-
BILITIES. A record of such consultation shall be included in the
[mentally retarded] 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 [mentally retarded person's] PERSON WITH A DEVELOPMENTAL
DISABILITY'S chart that:
(i) the [mentally retarded] person has a medical condition 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 [mental retardation]
DEVELOPMENTAL 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 [mental
retardation] DEVELOPMENTAL DISABILITY; and
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B. the expected outcome of the life-sustaining treatment, notwith-
standing such person's [mental retardation] 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 [mentally retarded person's] PERSON WITH A DEVELOP-
MENTAL DISABILITY'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
[mentally retarded person's] PERSON WITH A DEVELOPMENTAL DISABILITY'S
medical chart, and shall either:
(i) promptly issue an order to withhold or withdraw life-sustaining
treatment from the [mentally retarded] person, 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 [mentally retarded] person WITH A DEVELOPMENTAL DISABILITY,
except if the attending physician determines, in writing and in consul-
tation with another physician or a licensed psychologist, that, to a
reasonable degree of medical certainty, the person would suffer immedi-
ate 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 [of
mental retardation and] FOR PEOPLE WITH developmental disabilities, or
C. have been approved by the commissioner of [mental retardation and]
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 expe-
rience in treating mental retardation. A record of such consultation
shall be included in the [mentally retarded] 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 [of mental retardation
and] FOR PEOPLE WITH developmental disabilities, the chief executive
officer of the agency or organization operating such facility and the
S. 7157 6
mental hygiene legal 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 [mental retardation and] devel-
opmental 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
[mentally retarded] person WITH A DEVELOPMENTAL DISABILITY, in the event
of an objection to that decision at any time by:
(i) the [mentally retarded] person 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 [mentally retarded]
person; 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
[mentally retarded] person, 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 [of mental
retardation and] 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 [mental retardation and] devel-
opmental 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 PROGNOSTIC BASIS FOR THE MEDICAL DETERMINATION IN
SUPPORT OF THE ORDER OR AN EXCERPT FROM THE PATIENT'S MEDICAL RECORD
THAT IS SUFFICIENT TO SUPPORT SUCH DETERMINATION, AN ORDER NOT TO RESUS-
CITATE SHALL NOT BE STAYED BY AN OBJECTION BY THE PERSONS DESCRIBED IN
SUBPARAGRAPH (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
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ORDER, A WRITTEN STATEMENT BY A HEALTH OR SOCIAL SERVICES PRACTITIONER,
AS DEFINED IN SUBDIVISION SEVENTEEN OF SECTION TWENTY-NINE HUNDRED NINE-
TY-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 HAS 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 [mentally retarded person's] PERSON WITH A DEVELOP-
MENTAL 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 [of mental retardation and] FOR PEOPLE WITH
developmental disabilities) or the commissioner of [mental retardation
and] 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 [mentally retarded] person 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
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decision had been made by the [mentally retarded] person WITH A DEVELOP-
MENTAL 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 [mentally retarded] person 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 [mentally retarded] person
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 [mentally
retarded] person 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 [mentally retarded] person WITH A
DEVELOPMENTAL DISABILITY, 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 [mentally
retarded] person to a willing hospital or individual health care provid-
er, 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.
S 2. This act shall take effect on the ninetieth day after it shall
have become a law.