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Ethical & Legal Requirements for Patients with Developmental Disabilities

As described in the overview of Ethical & Legal Requirements there are seven checklists available to ensure the correct requirements are followed when making end-of-life decisions. These requirements are based on the nationally recommended ethical framework and they’re codified in NYS Public Health Law. Three of these checklists may be used with people who also have developmental disabilities.

If the person with developmental disabilities has the ability to make their own medical decisions then the medical team is able to use Checklist 1, just as they would with any other patient who has capacity.

If the person with developmental disabilities is not able to make medical decisions, but is able to designate a health care agent and complete a health care proxy then the medical team can use Checklist 2. Special requirements apply for completion of the health care proxy and for capacity determination on Checklist 2 (if the lack of capacity is due to the developmental disability).

Lastly, if the person’s developmental disabilities are so significant that they cannot make medical decisions or designate a health care agent then there is a special checklist designed by the NYS Office for People with Developmental Disabilities (OPWDD). This checklist ensures compliance with the §SCPA 1750-b law and regulations that affect withholding/withdrawing life-sustaining treatment for these individuals. For patients in this situation, completion of this checklist is mandatory before any orders can be written to withhold or withdraw life-sustaining treatment or before the MOLST can be signed. A copy of the completed checklist must always be attached to the completed MOLST form.

This page focuses on the §SCPA 1750-b process and the OPWDD Checklist. This Checklist should be used for both adult and pediatric patients.

Confirm Lack of Capacity

When using the OPWDD Checklist, special capacity determination requirements apply. The attending physician must do the original capacity determination as usual. If the attending physician determines that the lack of capacity is due to the developmental disability then the concurring determination for capacity must be completed by a physician or clinical psychologist with special training in treating patients with developmental disabilities who meets at least one of the following criteria:

If you are struggling with finding the appropriate professional for concurring capacity determination, please reach out to your local DDSO.

 Identify the Right §SCPA 1750-b Surrogate

The §SCPA 1750-b surrogate list used for individuals with developmental disabilities who do not have a health care proxy is different than the surrogate list enumerated in Family Health Care Decisions Act. The 1750-b surrogate list also requires “active involvement” from any surrogate who is selected. If the surrogate listed is not “actively involved” in the patient’s life then the law prompts the physician to use the next surrogate on the list who is actively involved. This list is in order of priority.

  1. 17-A guardian
  2. Actively involved spouse
  3. Actively involved parent
  4. Actively involved adult child
  5. Actively involved adult sibling
  6. Actively involved family member
  7. Willowbrook CAB (full representation)
  8. Surrogate Decision Making Committee (MHL Article 80)

Determine Necessary Medical Criteria

In order to make decisions to withhold and/or withdraw life-sustaining treatment on behalf of an individual with developmental disabilities, the attending physician and a concurring physician must determine that both of the following conditions are met:

The individual with developmental disabilities has a terminal condition or is permanently unconscious or has an irreversible medical condition other than developmental disabilities that will continue indefinitely (for example, end stage dementia, metastatic cancer, etc.) which requires life-sustaining treatment.

The life-sustaining treatment would pose an extraordinary burden on the individual in light of the person’s medical condition other than the developmental disabilities and the expected outcome of the life-sustaining treatment apart from the developmental disability.

Special requirements exist if the request is to withhold artificial hydration or nutrition. In this case, one of the following additional factors must be met:

The necessary medical criteria must each be patient-centered, based on the current health status and prognosis of the patient and well explained by the physician on the OPWDD Checklist.  These are the medical criteria that the physician must discuss with the appropriate §SCPA 1750-b Surrogate using the 8-Step MOLST Protocol and shared medical decision-making that is well-informed.

The medical criteria must be well documented on the OPWDD Checklist. Failure to appropriately document may result in an objection to the medical orders to withhold and/or withdraw life-sustaining treatment by Mental Hygiene Legal Services (MHLS) or other parties who must be notified.

Discussion Requirements

Several discussion requirements apply including:

Notification Requirements

Oversight of decisions to withhold and/or withdraw life-sustaining treatment on behalf on an individual with developmental disabilities is part of §SCPA 1750.

After the OPWDD Checklist is completed it must be submitted to the facility director, local DDSO or MHLS as appropriate.

  1. If the person resides in a group home that is an OPWDD residential facility, the attending physician must notify the facility director and MHLS.
  2. If the person resides at home and receives OPWDD services, the attending physician must notify the local DDSO.

After this a 48-hour waiting period begins prior to the implementation of a decision to withdraw life-sustaining treatment, or at the earliest possible time prior to a decision to withhold life-sustaining treatment. If there are no objections from MHLS or other notified parties within 48 hours, then the MOLST orders or other orders to withhold or withdraw life-sustaining treatment can be signed by the physician.

As noted above, the medical criteria must be well documented on the OPWDD Checklist. Failure to appropriately document may result in an objection to the medical orders to withhold and/or withdraw life-sustaining treatment by Mental Hygiene Legal Services (MHLS) or other parties who must be notified.Due to the complexity of the OPWDD Checklist many organizations encourage their staff to immediately connect with their palliative care team or legal counsel when they are presented with a patient who is seriously ill or near the end of life and has significant developmental disabilities and no health care proxy. The palliative care team or legal counsel may have experience ensuring the correct documentation is done with these cases.

Certification

After the §SCPA 1750-b process is completed and there is no objection from the appropriate parties, the attending physician signs the OPWDD Checklist and the MOLST form,.  In doing so, the attending physician certifies the process was done correctly and the medical orders to withhold and/or withdraw life-sustaining treatment are appropriate.

Special Considerations for Pediatric Patients

To complete MOLST for pediatric patients who have developmental disabilities, lack capacity, are receiving DDSO services at home or reside in a group home (OPWDD residential facility) , and are appropriate for MOLST,  the OPWDD Checklist must be used. The MOLST for Minor Patients Workgroup created FAQs for clinicians to refer to when working with these patients and their families.

If the pediatric patient has never received DDSO services and has never resided in an OPWDD facility then the MOLST for Minor Patients Checklist should be followed.

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