Barriers to end of life care in the IDD population

Topic: Addressing the Needs of Specific Patient Populations

Facing the barriers of the aging IDD population

New York state comes with strict rules and regulations for individuals with IDD (intellectual and developmental disabilities) that lack capacity and reside in a OPWDD (Office for People With Developmental Disabilities) residential facility. This places a lot of burden and challenges on goals of care and advanced care planning in the aging population. Understanding that the their rights need to be protected have stemed from the inhumane acts of Willowbrook and the Tuskegee Syphilis experiment. Unfortunately, now we have to go through systematic legal proceedings which often only can happen during weekday daytime hours that often prohibit individuals who are dying have a good death and not prolong their suffering. In New York State, IDD who live in a residential facility need (MHLS) Mental Health Legal Hygiene Services and the Staff from the residential facility involved in their end of life care decision making. In reality this is less than ideal in acute setting. For instance, a 53 yr old with profound IDD presented to the hospital in respiratory failure and was intubated. He was unable to successfully wean from the ventilator. He had 3 cardiac arrests prior to a palliative care consultation. On the 4th cardiac arrest, the mother, who is considered an active family member, witnessed CPR on her son. She stated she did not want him to have any further CPR and requested a DNR. Unfortunately due to the legal limitations this could not happen immediately. Patient suffered another cardiac arrest requiring CPR. Once MHLS and the residential facility was notified and submitted a nonobjection letter, the patient then became DNR. The mother also requested withdrawal of care and comfort care only. Again, because of the statue of limitations, each organization and any active family member was allowed 48 hours to object before the request was allowed to be enacted.

The system in place in NYS for the IDD patient population who lack capacity that live in a residential facility does not allow for end of life medical decisions to be made in the moment of crisis. Rather than protecting their rights, it prohibits their right to have a good death.


  • Kathryn Rooth
  • Physician
  • Cayuga Medical Center
  • 101 Dates Drive
  • Ithaca, NY 14850


  • Nancy Kwon, MD, MPA
  • Natalie Sohn
  • Regina Roofeh, MPH
  • Tara Liberman, DO

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