All individuals should have a completed ready to go form that will go with them to the hospital.
Health Care Proxy
A health care proxy is a document created by an individual (the principal) which names another person as their health care agent to have the authority to make health care decisions if and when the principal is determined to be incapable of making medical care decisions for themselves.
An individual does not need to have the capability of making and understanding all medical care decisions for themselves in order to be able to make a health care proxy. An individual simply has to understand that they are giving another person (the health care agent) the authority to make medical care decisions on their behalf if and when they are not capable of making these decisions.
If an individual has signed a health care proxy, it should be included with their ready to go packet. If an individual has the capacity to choose a health care agent, and it is confirmed that the chosen person is willing to act as the health care agent, a health care proxy should be signed.
Two important considerations:
- There are special witness requirements for residents of OPWDD facilities.
- One witness must be a physician, nurse practitioner or psychologist who is either employed by OPWDD, has been employed for 2 years by an OPWDD operated or licensed facility, or has been approved by the Commissioner as having specialized training or 3 years’ experience in treating people with intellectual or developmental disabilities.
- One witness must be an individual who is not affiliated with the residential facility.
- Unless the health care agent knows the person’s wishes regarding the provision of artificial nutrition and hydration, the agent does not have the authority to make these decisions.
Health Care Decisions Act (SCPA 1750-b) & MOLST
If an individual does not have the capacity to make their own health care decisions and does not have a health care proxy, decisions to withhold or withdraw life sustaining treatment may be made in accordance with the process set forth in the Health Care Decisions Act (SCPA 1750-b).
The Health Care Decisions Act is a law that allows specifically authorized surrogates to make health care decisions on behalf of persons with intellectual or developmental disabilities, including the decisions to withhold or withdraw life sustaining treatment if certain statutory criteria are met.
The Medical Orders for Life Sustaining Treatment (MOLST) are the actual medical orders that are signed by the physician following compliance with the process required by SCPA 1750-b as indicated by completion of the MOLST Legal Requirements Checklist for Individuals with I/DD.
For individuals with intellectual or developmental disabilities who do not have the capacity to make their own health care decisions, and do not have a health care proxy, completion of the MOLST Legal Requirements Checklist for Individuals with I/DD is required before the MOLST form can be signed by a physician.
- The prioritized list of authorized surrogates is included in Step 1 of the checklist. All life sustaining treatment that the surrogate is requesting be withheld or withdrawn must be specifically listed in Step 2 of the checklist.
- The law requires that the individual’s lack of capacity to make health care decisions be confirmed before the surrogate’s decision can be implemented. The attending physician should make the initial determination. A concurring opinion must then be provided by another physician or licensed psychologist who meets the experience/training requirements in Step 3 of the checklist.
- As a general rule, this concurring opinion should be provided by the individual’s residential provider agency. In the event that the provider agency is unable to provide the concurring opinion and the hospital does not have a clinician who meets the necessary criteria, the hospital should call the 24-hour OPWDD hotline at (855) 696-7933.
- In Step 4 of the Checklist, the attending physician, with the concurrence of a second physician, must determine to a reasonable degree of medical certainty that the individual fulfills the medical criteria required by SCPA 1750-b and described in the Checklist.
- In Step 5 of the Checklist, notice must be provided to various parties before any decision to withhold or withdraw life sustaining treatment can be implemented. Who must receive notice depends on the setting in which the individual resides:
- If the individual resides in a certified residence operated by OPWDD, the completed Checklist must be sent to the appropriate local Developmental Disabilities State Operations Office (DDSOO), and to the local Mental Hygiene Legal Service (MHLS) office.
- If the individual resides in an OPWDD certified residence that is operated by a voluntary provider agency, the completed Checklist must be sent to the director of the voluntary provider agency that operates the residential facility and to the local MHLS office.
- If the individual does not reside in an OPWDD operated or certified residential setting, the completed Checklist must be sent to the local Developmental Disabilities Regional Office (DDRO). DDRO contact information is available on our Contact Us page.
- Notices for individuals who reside in state-operated residences can be provided by contacting the 24-hour hotline at (855) 696-7933. Notices for individuals who do not reside in an OPWDD operated or certified residence should also be provided by contacting the 24-hour hotline. Notices for individuals in certified residences not operated by OPWDD should be provided directly to the Director of the voluntary provider agency that operates the residence.
Consumer Advisory Board, Willowbrook Class & End of Life Decision Making
- With respect to Willowbrook class members for whom the Consumer Advisory Board, Willowbrook Class (CAB) serves as guardian either pursuant to M.H.L. Article 81 (N.Y. Mental Health Law §81.22.8 and N.Y. Public Health Law §2994-d.1) or S.C.P.A. Article 17 (S.C.P.A. § 1750-b(1)(a)), the CAB is empowered to make all health care decisions for the class member, including the decision to remove or provide life-sustaining treatment.
- For more information, please contact the CAB at 718-477-8800. This is a HIPAA-secure phone line that accepts messages and is generally attended 24/7; please leave a message indicating name of Willowbrook class member and caller’s contact information including medical facility, name and phone number (including area code) and the nature of the request being made.
- Visit our Willowbrook page.
Surrogate Decision Making Committee
The Surrogate Decision-Making Committee (SDMC) program is an alternative to the court system and is authorized to provide consent for non-emergency major medical treatment and end-of-life care decisions for people who qualify. More information is available on from the New York State Justice Center for the Protection of People with Special Needs.
Mental Hygiene Legal Service (MHLS)
The Mental Hygiene Legal Service (MHLS) provides legal services, advice and assistance to individuals receiving care in certified settings. With respect to health care decision making, the Mental Hygiene Legal Service must receive notice of decisions by legally authorized surrogates who provide consent to withhold or withdraw life sustaining treatment for residents who lack capacity living in or transferred from facilities operated or licensed by OPWDD. Such facilities include developmental centers, intermediate care facilities (ICFs), and Individualized Residential Alternatives (IRAs).
To reach an MHLS attorney, please review the 1750-b MHLS contact list by county. Many MHLS attorneys are willing to respond to end of life matters after hours and on weekends on a voluntary basis.