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On May 12, C-TAC hosted the 2021 National Policy Forum. The second panel “How Federal and State Policies and Innovations are Reshaping the Advance Care Planning Landscape” featured Nina Kohn, Solomon Center Distinguished Scholar in Elder Law at Yale Law School. The panel also included Anna Gosline, Executive Director of the Massachusetts Coalition for Serious Illness.
The COVID-19 pandemic highlighted the critical need for high-quality advance care planning and revealed pain points in the process. Social distancing and quarantine requirements necessitated phone- and web-based advance care planning services. The need to isolate seriously ill hospital patients with COVID exacerbated existing challenges in communicating with surrogates and health care proxies. As Anna Gosline explains, after a painful year, providers and advocates have a laser focus on solving these problems, and 2021 is an ideal time to make progress.
C-TAC’s Policy Agenda on Advance Care Planning
Expanding access to advance care planning (ACP) services is one of C-TAC’s top policy priorities. C-TAC’s Policy Agenda includes support for several reforms that would improve ACP use and accessibility:
Medicare coverage of ACP should be improved by:
- Waiving patient co-pays,
- Expanding provider types who can be paid to provide ACP to include clinical social workers,
- Expanding reimbursable places of service to include the home.
- Permanent expansion of the pandemic-related flexibility for Medicare reimbursement of phone-based, audio-only ACP services.
- Create and evaluate standards for including ACP documents within an individual’s electronic medical record.
Updating the Uniform Healthcare Decisions Act
The Uniform Healthcare Decisions Act (UHCDA) was created in 1993 and serves as the model for state legislation governing the use of advanced directives. The Uniform Law Commission (ULC) is a quasi-governmental body that creates such model legislation, and now that UHCDA is nearly 30 years old has convened a committee to update the Act. As part of this effort, the committee is charged with a range of tasks:
- Expand the scope of the Act to include psychiatric advanced directives.
- Update the Act to include electronic documents and electronic signatures.
- Clarify areas of confusion including:
- The relationship between a power of attorney and a POLST,
- The triggers for use of advanced directives,
- The default surrogate approach,
- Managing disagreement between surrogates.
- Address barriers to use and ensure that forms are accessible to seriously ill individuals and their families, regardless of literacy level.
The committee welcomes input and feedback from stakeholders working in the field with ACP. Those wishing to contribute should reach out to Nina Kohn, who is serving as Reporter for the committee, and can follow the committee’s progress on their website.
Insights on Challenges in the Field
The panelists covered several practical challenges faced by those providing ACP services.
Providers caring for unbefriended individuals have sub-optimal options when imminent treatment decisions are needed—either authorize a “default surrogate” or go to court for a guardianship order. However, there are proactive ways to avoid this dilemma.
- Gosline shared survey results explaining that 40 percent of those without a proxy say they don’t have anyone to pick. Sometimes, it is possible to identity an appropriate surrogate by asking different question, or even creating some support for the patient.
- Kohn recommends providers consider seeking single transaction court orders for the specific decision being considered, as opposed to ongoing guardianship orders which are often inappropriate.
Advanced Directive Registries
States are building registries for advanced directives, and the federal government has been creating more standards for including advanced directives in electronic health records. This is important, as it addresses patient questions about where documents are stored and allows them to trust that the ACP process will be honored downstream. However, Kohn notes that people change their treatment preferences quite frequently, and a registry outside the patient’s control can ossify a preference that is no longer valid. As registries are expanding, it is important to create mechanisms to ensure individual’s evolving preferences are respected.