1. Presentation to The Senate Standing Committee on Health May 21, 2013 5.5321 (Sen. Hannon) Technical, clarifying and coordinating amendments to the statutory provisions governing health care decisions on behalf of patients unable to decide about treatment for themselves. Robert N. Swidler, Esq. VP Legal Services St. Peter's Health Partners Albany NY

2. S.5321 Amends Five Surrogate Decision-Making Laws: 1. PH L Art. 29-BOrders Not to Resuscitate for Residents of Mental Hygiene Facilities 2. PHL Art. 29-CHealth Care Agents and Proxies 3. PHL Art. 29-CCFamily Health Care Decisions Act 4. PHL Art. 29-CCCNon-Hospital Orders Not to Resuscitate 5. SCPA §1750-bHealth Care Decisions for Persons With Mental Retardation 2

3. 5.5321 Types of Amendments: 1.Technical Amendments 2. Substantive Amendments 3

4. 5.5321 - Technical Amendments PHL Art 29-C Health Care Agents and Proxies §2 - Conforms definitions of.. Health Care.. and "Health or social services practitioner.. with FHCDA. §§2,7,8,9,10, - Renames OMRDD to OPWDD and Commissioner of MR to Commissioner of DD. §§3,7,9 - Eliminates references to long-repealed MHL Art. 78; Inserts correct references. §6 - Revises language of determination of incapacity to be more like language in FHCDA. §§9,10 - Corrects section number spelling or references 4

5. 5.5321 - Technical Amendments PHL Art 29-CC Family Health Care Decisions Act §§ 11,13 - Corrects typos §§ 11,13,20,23 - Renames OMRDD to OPWDD and Commissioner of MR to Commissioner of DD. PHL Art 29-CCC Non Hospital Orders Not to Resuscitate §23 - Corrects inadvertent omission of home care services agency personnel from list of professionals who must honor nonhospital DNRs. §27 - Revises language of determination of incapacity rule to be more like language in FHCDA. 5

6. 5.5321- Technical Amendments SCPA 1750-b Health Care Decisions for Persons with Mental Retardation §29,31,33 - Renames “mental retardation.. to “developmental disability,.. OMRDD to OPWDD and Commissioner of MR to Commissioner of DD. §36 - Provides that a dispute that cannot be resolved by mediation may {as opposed to must) proceed to judicial review 6

7. 5.5321 -Substantive Amendments PHL Art 29-B Orders Not to Resuscitate for Residents of Mental Hygiene Facilities. §1 - Repeals PHL Art 29-B. PHL Art. 29-B is not needed. DNR orders for residents of OPWDD operated developmental disabilities services centers are governed by SCPA §1750-b. DNR orders in hospital psych units and psych hospitals are more appropriately governed by FHCDA. Related Amendments §12 - Makes FHCDA apply to DNR orders in psych units/hospitals. §25 - Confirms that SCPA §1750-b governs DNR for persons with developmental disabilities. §32 - Deletes a cross-reference to a definition in PHL 29-B. 7

8. 5.5321 -Substantive Amendments PHL Art 29-C Health Care Agents and Proxies §§ 4, 6 - Gives health care agent authority to base decision about artificial nutrition and hydration on patient’s best interests as well as patient’s wishes to be consistent with authority of surrogates under FHCDA; to remove a longstanding source of confusion §5 - Adds “physician assistant” to the list of professionals with whom an agent may consult before making a decision in order to meet consultation requirement. 8

9. 5.5321 -Substantive Amendments PHL Art 29-C Health Care Agents and Proxies §6 {p3, line 30) - Hospitals, nursing homes and hospices can adopt policies re which professionals are qualified by training and experience to determine or confirm a patient's lack of capacity based on developmental disability. Reason – to address significant difficulty locating professionals who meet OPWDD prescribed standards- especially in urgent cases. hospitals generally determine staff privileges. Related Amendments – §14 (p6, line 11) FHCDA. §31 (p11, line 13) SCPA 1750-b. 9

10. 5.5321 -Substantive Amendments PHL Art 29-CC Family Health Care Decisions Act §11 {p41ine 37) - Adds licensed master social worker to definition of “health or social services practitioner.” to be consistent with PH L Arts. 29-C and 29-CCC; to provide more flexibility in determining incapacity §14 Limits the requirements for a concurring determinations of incapacity to life-sustaining treatment decisions only. Currently, in nursing homes and for patients with mental illness or developmental disability, the FHCDA requires a concurring opinion of incapacity before a surrogate can consent to beneficial treatment. That is inconsistent with the proxy law, excessive relative to benefits, and can be a barrier to beneficial treatment. 10

11. 5.5321 -Substantive Amendments PHL Art 29-CC Family Health Care Decisions Act §15 (pG line 47) - Restores medical futility as one of the clinical bases for surrogate consent to a DNR order. This standard was in the old DNR law. The FHCDA replaced it with a broader standard which implicitly included DNR futility, because the FHCDA applied to a broader range of end-of-life decisions than just DNR. Experience is showing that the broader standard can be difficult to apply to DNR futility cases, This does not expand or contract the bases for consent to a DNR order. It clarifies that futility has been a basis for such orders. Related amendments §18- DNR for a patient who does not have a surrogate §32- SCPA §1750-b- DNR for developmentally disabled patient 11

12. 5.5321- Substantive Amendments PHL Art 29-CC Family Health Care Decisions Act § 16 Hospital must make “reasonable efforts” to contact parent of emancipated minor before w/d or w/h life-sustaining treatment. Previous standard, "shall notify" was not always possible to meet. §17 Hospital's or provider's obligations in cases in which surrogate favors life-sustaining treatment and hospital or provider opposes life-sustaining treatment do not apply when hospital is carrying out patient's prior decision made pursuant to FHCDA standards. This exception is consistent with legal and ethical principles that require respect for patient's decision, and that obligate surrogate to base decision on patient's wishes if reasonably known. 12

13. 5.5321 -Substantive Amendments PHL Art 29-CC Family Health Care Decisions Act §21 Revises obligation of a hospital to furnish statement of rights. §22 Directs Commissioner of DOH to update Statement of Patients Rights, by replacing statement re DNR rights with a statement re right to receive a more complete statement of decisio-making rights. PHL Art 29-CCC Non-hospital DNR Orders §13 Directs school health personnel to honor nonhospital DNRs §14 Eliminates responsibility of commissioner to develop standard nonhospital DNR bracelet, but recognizes such bracelets and other articles. 13

14. 5.5321 -Substantive Amendments Surrogate's Court Procedure Act §1750-b § 30 Confirms that a person covered by §1750-b who is found to have capacity may make his or her own decisions re life- sustaining treatment. who has a valid health care proxy, can have decisions make pursuant to the health care proxy law. § 31 Special qualifications are required to determine a developmentally disabled persons incapacity only if the basis for incapacity is the dev. dis., not another basis. 14

15. 5.5321- Substantive Amendments SCPA §1750-b Health Care Decisions for Mentally Retarded Persons § 33,35 Provides that an objection by Mental Hygiene Legal Services (MHLS) or agency CEO to a DNR order will stay the order only if the objection is accompanied by a basis for asserting the DNR does not meet legal standards. Prior to 2010, DNR orders for developmentally disabled persons were governed by the DNR law, with no role for MHLS. The FHCDA made DN R orders for dev. disabled persons subject to SCPA §1750-b. That authorizes a surrogate to consent to a DNR order, but requires notice to the director and MHLS MHLS, upon receiving notice, frequently directs hospitals to not enter a DNR order until it can review the record. This amendment provides that the DNR order may be entered unless and until MHLS states a reason to challenge it. 15