I appreciate our readers who have pointed out that the term "unbefriended" in this article may be interpreted as a demeaning term, since many of these unrepresented patients are no longer able to access their prior friendship / family network and besides that, the key issue is they no longer have decisional capacity and do not have an identifiable representative. In this day of implicit bias, I appreciate our readers who hold us to a higher standard for our communications that address problems in the delivery of healthcare in our state. I also did receive feedback that the California Hospital Association is aware of this problem and is working with CDPH, CALTCM, and other stakeholders to identify acceptable patient advocates. Several physicians have suggested recruiting local retired physicians through their medical societies. Another has suggested developing a grant proposal at a county level to develop a patient advocate program. I hope these ideas take hold, for our facilities really do need help accessing capable patient representatives for this relatively common problem.
Timothy L. Gieseke MD, CMD
Original Article
On January 12, CDPH AFL 20-83.1 (see link below) updated guidance for the Interdisciplinary Team (IDT) authorized medical interventions for Residents unable to provide Informed Consent and without a Health Care Decision Maker. This guidance clarified the IDTs authority to administer antipsychotic medications and make referrals to hospice, under the authority of Health & Safety Code 1418.8 (the “Epple Law”). It also maintained that a facility is required to have an unaffiliated patient representative as a part of the IDT process and decision-making for the resident on a proposed treatment. If that is not possible as of July 27, 2021, these decisions will need to be made after applying to the superior court for the appointment of a conservator, a health care decision maker, or a public guardian, for an order of medical treatment.
As a seasoned clinician and medical director, I’ve participated in many IDT conferences where tough decisions needed to be made on behalf of an unrepresented resident without decisional capacity for the required decision. I have greatly appreciated family and friends who knew the resident and could help make tough decisions on their behalf. The facility ombudsman often helped these patient representatives as an impartial patient advocate and by sharing their expertise on patient rights and conflict resolution.
The updated guidance in this AFL is a part of the Alameda Superior Court’s issued modified judgment of January 27, 2020 on the constitutionality of HSC section 1418.8. A key interpretation of this ruling is that the patient representative must be a volunteer without a financial relationship to the facility or a contracted entity, so that they can be an impartial representative without potential financial conflicts of interest.
The state ombudsman’s office has taken a position that the ombudsman may not participate in the IDT as patient representative (as described in the court order) and since 2020 they have been prohibited by their own policy from participating in this process. This is unfortunate, since the ombudsman seems to be ideally situated to participate in such an IDT process (and had done it for decades before this ruling) to help ensure the resident’s best interests are considered. At this point the Department of Aging is working with stakeholders including CALTCM, CAHF, CDPH and others to try to stand up a new “Office of the Patient Representative” or similar agency to participate in IDT decision-making under the Epple law for the probably 5000-10,000 nursing home residents in the state who might require such attention. Given the ravages of the pandemic, it is unclear whether that can be effectively achieved (and paid for) in the next six months. It is possible that CDPH and others may request a further delay in implementation of this requirement beyond July 2021.
Since the clinical issues involved in these decisions may be complex and nuanced, the volunteer representative will likely need to have training on common clinical issues and basic bioethical principles. They also will likely need training to represent and determine the resident’s life history, goals, and values, to the extent that’s possible. This expertise is a part of the work of ombudsman, chaplains, physicians, social workers, and some clergymen and licensed nurses. However, hospital and hospice chaplains may be excluded if they are seen as affiliated. The same is true of facility hired chaplains. This leaves a very small pool of potential, competent patient representative volunteers.
Going to the Superior Court is an expensive option and may take considerable time and delay necessary medical treatment decisions. This will almost certainly result in facilities reluctant to take on new residents in this category if this ruling is not modified or an alternative pool of patient representatives is not arranged. During this pandemic, when hospital lengths of stays (LOS) are already dramatically increased, the incapacitated unrepresented patient population may contribute further to this problem.
In my opinion, the pool of potential competent volunteers needs to be expanded by initiatives developed in partnership with CDPH and industry partners. A friend of mine who spent his career working with clients with disabilities, has experience with volunteers and stated volunteers will come if you set up a narrative that clearly expresses the need and provides training to match the need. He mentioned he had helped a friend become a CASA (Court-Appointed Special Advocate) for becoming a volunteer advocate for a foster child (link below). This was only possible because of the training his friend obtained through CASA. His friend subsequently has experienced joy from contributing to a more successful future for at risk children. I wonder if our state can create a similar process for addressing our facilities' need for passionate, available, and trained resident advocates to serve as patient representatives for the purposes of Epple IDT decision-making.
If we do this, our facilities will be empowered to make timely and impartial medical treatment decisions for their residents who are unable to provide informed consent and do not have a health care decision maker. Stay tuned to see what solutions may develop. In the meantime, rest assured that the Epple IDT process may be used for all types of decision-making that requires informed consent (or refusal). However, it is important when determining a resident meets those criteria (both incapacitated and unrepresented) to ensure--if there is not a patient representative on the IDT--that the local ombudsman’s office is notified. In addition, oral and written notice must be provided to the resident (even if that is a meaningless exercise due to advanced dementia) that s/he has been found to lack capacity and have no representative, and that the IDT is planning to make a decision about his/her medical care.
References
https://www.cdph.ca.gov/Programs/CHCQ/LCP/Pages/AFL-20-83.aspx
https://nationalcasagal.org/advocate-for-children/be-a-casa-volunteer/