Good News for Incapacitated Unrepresented Residents – Final Order Issued

On January 27, 2020, the saga that began in 2013 with a lawsuit against the California Department of Public Health (then captioned CANHR v. Smith) finally concluded, although some details remain to be worked out.  The bottom line is that in skilled nursing facilities, the Epple/IDT process, sometimes referred to as an Ethics Committee or Bioethics Committee (even though the composition of such a committee in nursing homes is rarely as robust as it is for hospital Bioethics Committees), is able to make decisions for incapacitated, unrepresented nursing home residents—including all psychotropics and end-of-life decisions—but a non-facility-affiliated resident representative must be part of the process.  

The original 2013 case claimed, and the trial court in Alameda County agreed in 2015, that the Epple law—which allows the skilled nursing facility IDT to make decisions on behalf of residents who lack decision-making capacity and have nobody to make decisions on their behalf—was unconstitutional.  The judge ruled that this IDT decision-making process could not be used for consenting to antipsychotic medication, or for withdrawing and/or withholding life-sustaining treatment (but that it could be used to consent to hospice care, puzzlingly). The decision was appealed by both CANHR and CDPH, but it took until 2019 for the Court of Appeal to hear the arguments.

In July 2019, the Court of Appeal essentially confirmed that in fact, the Epple law (Health & Safety Code 1418.8) was constitutional and was what our legislature intended to be used for these patients when it was passed back in the early 1990s.  The ruling made it clear that the Epple process could be used to consent for any psychotropic meds, including antipsychotics, and further that the IDT could consent to hospice and sign POLST forms, and other decisions “in the anticipation of end-of-life.”  However, it ruled that the IDT could not make decisions that would “directly and inexorably” lead to the resident’s death, such as stopping tube feeding that was already going, or discontinuing mechanical ventilation for a ventilator-dependent patient.  

While the Court of Appeal’s decision recognized the basic constitutionality of HSC 1418.8, it believed there were problems with its implementation.  One aspect of the original trial court ruling that the Court of Appeal supported was that the resident must be given notice about several points, including that they were deemed to lack decisional capacity and that they had a right to judicial review if they disagreed with the physician’s or IDT’s decision.  (Of course, this is an absurd notion when we consider the majority of residents for whom the Epple process has historically been used are suffering from severe dementia, and are far beyond being able to understand these issues.) The Court of Appeal went further and ruled that a “resident representative”—not to be confused with the usual meaning of resident representative in Centers for Medicare & Medicaid Services (CMS) terminology, which is what we used to call “responsible party”—had to also be given notice that the resident was found incapacitated and that the IDT was to be convened to make decisions on their behalf.  

Moreover, the Court of Appeal ruled that this resident representative would have to be part of the IDT process that discussed and made decisions for the resident, and that the representative could not be affiliated with the facility.  It seemed that the facility Ombudsman—who in most counties has served as the “resident representative” for decades in these IDT/Epple proceedings—was the natural person to take on this role, but the statewide Long-Term Care Ombudsman’s office puzzlingly decided that now they would not be able to serve in this role at all.  Part of the reasoning was that federal law prohibits ombudspersons from actually serving as decision-makers for nursing home residents, but serving as resident representative on the IDT clearly does not signify being a decision-maker; it merely ensures that someone who is an advocate for the resident is part of the process and ensures that the process is fair and the resident’s rights are considered.  

So, the Court of Appeal sent their decision back to the original trial court to create a final order, and we now have that.  Essentially, the order allows for up to an 18-month period for facilities to locate a resident representative for those residents who are already being cared for with the Epple/IDT decision-making process.  In the interim, the local ombudsman’s office is to be notified of the finding of incapacity and the decisions made by the IDT for these existing residents (and for new admissions or existing residents newly found to be incapacitated and unrepresented).  

Our nursing homes would be well served by beginning their search for an appropriate resident representative well in advance of the July 2021 deadline.  It may be a challenge for some facilities, since the facility probably would not be permitted to compensate the resident representative for their time. Some options may be to locate a local hospital Bioethics Committee’s community representative, a member of the local clergy, another facility volunteer, or (perhaps more ideally when plausible) a family member or friend of the resident who is not willing to sign and consent for decisions, but is willing to be part of the process.  Ideally, this person would have some knowledge of bioethics, and the physician member of the team would also benefit from having some education, training or experience in bioethics. It is unfortunate that the ombudsman, who as an impartial resident advocate by definition seems like the perfect fit for this role, at least for now is precluded from participation.  

It is clear from the original lawsuit that there have been abuses of the Epple process in the past.  This is unfortunate, and facilities that use it inappropriately should be held accountable. But with the additional safeguards afforded by the Court of Appeal’s decision and the trial court’s final order, it is hoped that the process will be more robust and will clearly require the input of a neutral person whose interests are aligned with those of the individual resident.  

This ruling leaves us with a lot to digest, and many details are yet to be worked out.  But the bottom line is good news for our unfortunate incapacitated, unrepresented residents:  They will be able to receive appropriate, compassionate care that serves their best interests, in a place that is now home for most of them, without having to invoke court proceedings in a great majority of cases, and without having to send these patients—often with late-stage dementia—to the hospital repeatedly for invasive, painful and unwanted aggressive interventions that in fact do not seem to serve those best interests.

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