Makes technical corrections to the public health law and the surrogate's court procedure act relating to health care decisions for persons with developmental disabilities; repealer

Summary of provisions

Section 1 - Section 2994-cc of the public health law deals with non-hospital orders not to resuscitate (hereinafter "DNRs"). This section clarifies that DNRs in facilities operated or certified by the office for people with developmental disabilities (hereinafter "OPWDD") already have an existing statute - surrogate's court procedure act 1750-b (hereinafter "1750-b") which deals with DNRs for persons served in OPWDD facilities.

Section 2 - This section repeals article 29-B of the public health law. The family health care decisions act (hereinafter "FHCDA") made a number of changes to public health law article 29-B, which had generally authorized and regulated the process by which DNR orders were considered, entered and reviewed both in hospital and non-hospital settings for all patients. The FHCDA retitled PHL article 29-B "orders not to resuscitate for residents of mental hygiene facilities" and deleted the core presumption in the prior statute to the effect that every person upon admission to a hospital is presumed to consent to ("wants") CPR in the event of a cardiac or pulmonary arrest. However, at the same time, the FHCDA also added CPR to the applicable 1750-b definition of life-sustaining treatment which a guardian, family member or other surrogate could refuse on behalf of a person with developmental disabilities in any service environment or in one's home. The guardian or other surrogate's primary duty to the incapacitated person with DD is to "advocate for all efficacious treatment, including life-sustaining treatment" for the incapacitated person - i.e., the presumption in favor of CPR remains in 1750-b. Additionally, and unlike in either the prior 29-B or the FHCDA-amended version, the incapacitated person receives the timely review and advocacy support of the mental hygiene legal service (hereinafter "MHLS"), the directors of their residential facilities and OPWDD under 1750-b while in or upon transfer from an OPWDD facility. OMH constituencies seem satisfied that they are covered under public health law section 2994-cc, thus the continued existence of 29-B serves no purpose.

Section 3 - This section makes two clarifying changes to public health law 2994-b, as enacted by the FHCDA.

Section 4 - This section restores to the public health law the medical justification of medical futility to support a "do not resuscitate order" (hereinafter "DNR"). For no readily apparent reason, the FHCDA, in limiting the scope of 29-B neglected to import "medical futility" as justification for entry of a DNR into new PHL article 29-C (although the term is still defined at PHL 2961 12.) DNRs on the ground of medical futility are perhaps the most common historical grounds for DNRs among aging persons with DD.

Section 5 - This section changes the title of 1750-b to delete the term "mentally retarded" and replace it with the term "developmentally disabled". The former term has been the subject of a nationwide effort aimed at eradicating its use in any way. Rather recently the name of the New York State program agency was changed to "Office for People With Developmental Disabilities", and the section of the mental hygiene law containing basic definitions was amended to redefine "developmental disability" in a way that encompasses mental retardation without the need to make continued reference to the term (MHL 1.03 22.).

Section 6 - This section incorporates the new MHL definition of developmental disability ("DD") into the entire section, in addition to making these further changes in 1750-b subdivision 1: It adds and groups with "DNR/CPR" a brief definition of "DNI" (do not intubate), an order almost always considered in pari materia with DNR. The statutory definition of cardiopulmonary resuscitation at PHL 2994-a 3., includes only measures employed in the event of "a cardiac or pulmonary arrest", and specifically excludes measures employed "in the absence of an arrest". Thus intubation and mechanical ventilation (respiratory support), in the event of a severe respiratory insufficiency prior to an arrest would not be deemed declined by a patient with an effective DNR in place. There is no existing statutory definition of DNI, but this one is borrowed from the MOLST form definitions, and seems clear and direct.

The section also slightly limits the scope of end-of-life decision-making authority of surrogate decision-making committees (hereinafter "SDMCs") by excluding DNR and DNI orders based upon medical futility. This change attempts to recognize the medical reality that a person who has stopped breathing and/or whose heart has stopped beating is in a final active state of dying (likely immediately preceded in many cases by acute insufficiency in respiratory function). Decisions on behalf of incapacitated persons of this nature simply can't await a petition, review, committee presentation, deliberation and written decision process such as that provided for in MHL article 80 and associated regulations and policies. A provision slightly later in the bill accommodates those situations for people otherwise potentially eligible for SDMCs.

This next amendment restores to statute a provision previously contained in PHL 29-8, but dropped (for no obvious reason) in the final enactment of the FHCDA - a DNR and/or DNI premised upon medical futility for incapacitated persons with DD who have no guardian, qualified family member nor Willowbrook class representative to act for them. In such limited cases, two physicians could make the determination of futility and enter the order in timely fashion, subject to the duty to notify OPWDD, the OPWDD residential service

provider and/or MHLS, and their right to interpose an objection and stay the order(s). This authority was previously generally provided for at PHL 2966 but not carried forward into PHL 2994-g.

Subsequent amendments to the subdivision clarify two areas left unaddressed in the original 1750-b, and which occasionally arise: the person with DD who has a guardian, but who is deemed by the attending physician to be capable of making the decision at hand and the person who presents as capable of executing (or previously has executed) a health care proxy, but may not be capable of making the decision at hand. The amendment clarifies that the former person will make his/her own decision, but both the determination of capacity and the decision itself will be communicated to the logical advocates and parties in interest (a guardian, a residential provider, OPWDD and/or MHLS) for review, counseling, objection, dispute mediation, etc. Those persons who can make or have made a health care proxy will be afforded their rights and protections under PHL article 29-C as an alternative to the 1750-b safeguards.

Sections 7 and 8- These sections amend subdivisions 2 and 3 of 1750-b to effectuate the desired change in terminology throughout the section.

Section 9 - This is the central section of the bill and the existing 1750-b, and the amendments (in addition to those for consistent appropriate terminology) accomplish the following:

*it clarifies, at amended subparagraph (b)(i)C, that a chronic an irreversible medical condition which may foreseeably require life-sustaining treatment in the future is within the purview of the statute - in which manner the statute has consistently been applied in nine years of practice;

*it incorporates into the list of medical grounds for withholding/withdrawing life-sustaining treatment DNRs/DNIs grounded upon medical futility; and

*in connection with this latter amendment it excludes DNR/DNI for medical futility from the independent requirement to find "extraordinary burden" imposed by treatment being foregone by a surrogate - the inefficacy of the treatment itself is felt to be sufficient justification, and the FHCDA has been interpreted in this manner in practice for three years at this point.

*Finally this section incorporates a specific time interval for review of DNRs/DNIs entered under the authority of 1750-b from the FHCDA - PHL 2994-dd 4.

Section 10 - This section slightly amends 1750-b subdivision 5 by carrying through terminology changes to reflect those throughout the bill and to be consistent with terminology and objection review processes contained in the FHCDA.

Sections 11 and 12- These bill sections simply carry through terminology changes to make the subdivision consistent with amended 1750-b.

Justification

Most of the problems which this proposal is intended to rectify were pointed out in an article in the Spring 2011 special issue of the New York State Bar Association's Health Law Journal (copy attached). Most of these same provisions were incorporated into a previous legislative proposal which included significant amendments to the FHCDA itself. That bill, known as the Surrogate Decision-Making Improvement Act, did not advance in either house of the legislature for two consecutive sessions.

This bill would resolve matters of conflict and uncertainty created by the FHCDA, and slightly simplify the rules and the path of end-of-life decision-making for people with developmental disabilities. Persons who are residentially served by the OPWDD system quite commonly lack involved and concerned family members aware of their wants and needs and willing to involve themselves in health care decisions for them. Thus, such persons continue to need and benefit from the oversight and protections afforded by 1750-b and the various parties in interest (including family members who are involved and concerned) and this bill makes 1750-b a more comfortable and viable fit within the framework of the FHCDA.

Legislative history

New Bill.

Fiscal implications

None

Effective date

Section 13 of the bill makes it effective ninety days after its enactment. There is no immediate need for conforming regulations to implement its provisions, however, eventually the Justice Center may need to re-regulate concerning the processes and jurisdiction of SDMCs.