Since the California Court of Appeal ruled on the CANHR v. Smith case in late 2019, and since early 2020 when the state Ombudsman’s office prohibited their ombudsman from participating in IDTs where medical decisions would be made for incapacitated unrepresented nursing home residents, California’s skilled nursing facilities have been awaiting the implementation of a brand-new office to help with these decisions.  

We are happy to report that the Office of the Long-Term Care Patient Representative, housed in the California Department of Aging and directed by Susan Rodrigues, a previous ombudsman with experience working in nursing homes, is in the process of being created and staffed.  The policies and procedures, specific forms for use by the IDT under HSC 1418.8, and training materials for public patient representatives are being developed now.  Because it is taking time to coordinate all of this, the deadline for including a patient representative on IDTs making decisions that require informed consent is probably going to be delayed until January 2023.  This means that for now, if a nursing facility cannot locate a family member, friend, or other non-facility-affiliated person to serve as a patient representative for the purposes of the IDT meeting, they can continue just notifying the local ombudsman’s office—of the resident’s status as incapacitated and unrepresented, and of the proposed (and implemented) interventions that the IDT is consenting to on behalf of the resident.

The new Office has been very collaborative and is working with numerous stakeholders, including CALTCM, CAHF, CANHR, CDPH and others, to create policies and training that will respect and meet the needs of this vulnerable population, and they are considering all of our input, which is much appreciated.  It will be important to ensure that the people serving in the role of public patient representative have a solid understanding of bioethics, the natural progression of dementia (since a great majority of unrepresented incapacitated nursing home residents have moderate to severe dementia), end-of-life care, and related topics.  We are confident that this new Office will be of great benefit in ensuring a fair process that respects patients while allowing the IDT to make medically appropriate decisions that are in their best interest, especially when nearing life’s end.  CALTCM looks forward to ongoing collaboration with the Office of the Long-Term Care Patient Representative as this process ramps up and gets underway.