Health Care Decisionmaking for Unrepresented Nursing Home Residents in 2021 and Beyond
Eight years after CANHR filed a lawsuit to challenge the constitutionality of Health and Safety Code Section 1418.8 (“Section 1418.8”), California finally has a better law for balancing the health care needs and rights of “unrepresented” nursing home residents. Unrepresented residents are those who have diminished decisionmaking capacity and lack a surrogate decisionmaker. For nearly thirty years, these residents were essentially at the mercy of nursing home staff members to decide what care they would receive or not receive, including the withdrawal of life sustaining treatment. 

In 2019, a California appellate court ruled that Section 1418.8 had significant constitutional defects and required changes to protect residents from health care decisions that served the interests of nursing homes instead of their own. (CANHR v. Smith, 37 Cal.App.5th 814) Legislative efforts were deferred in 2020 because of the Covid-19 pandemic but moved quickly in 2021 thanks to Senator Pan’s Senate Bill 460, which was improved by the State Health and Human Services Agency and passed by the legislature in AB 135, a budget bill signed by the Governor on July 16. The signed bill represented the culmination of six months of extensive collaboration between Senator Pan’s office, the nursing home industry, CANHR, the Departments of Aging and Public Health, and many other stakeholders.

The most pivotal piece of the legislation is the allocation of four million dollars to form a Long-Term Care Patient Representative Program. The program will be spearheaded by the Department of Aging, which will train, certify, and supervise public patient representatives throughout the state, likely provided by county or local non-profit agencies.

The new Section 1418.8 includes the following key provisions:

1. A patient representative, unaffiliated with the nursing home, must be part of the resident’s decisionmaking inter-disciplinary team (“IDT”). If there is no patient representative, the facility cannot proceed with its decisionmaking process.  (subsection (e)(1); also see subsection (c)) Public patient representatives will serve for residents who do not have a family member or friend to fill this role.
2. No treatment decision requiring informed consent may be made by an IDT without the agreement of the patient representative. If the IDT members cannot reach consensus, the facility may not proceed with the proposed intervention unless it obtains a court order.  (subsection (i))
3. Unrepresented residents must receive two separate written notices related to the IDT: the first to tell them an IDT meeting is going to be held and the second to tell them the results of the IDT meeting and their right to seek judicial review. (subsections (d) and (f))
4. Nursing homes are required to report important data regarding decisionmaking for unrepresented residents to the Long-Term Care Patient Representative Program.

The new law sets a deadline of July 1, 2022 for the patient representative program to be up and running.  In the meantime, nursing homes are not required to have patient representatives as part of their IDTs. However, facilities ARE required to provide written notices to unrepresented residents and provide copies of those notices to “a competent person whose interests are aligned with the resident” or to the local long term care Ombudsman program. Those requirements were ordered by an Alameda County Superior Court judge and have been in place since 2020. Download and read the court order HERE.