January 6, 2026 – While Aging with Dignity, through its Five Wishes advance care planning (ACP) program, welcomes the expanding emphasis on ACP within CMS, particularly related to the alignment between quality measures and the MAHA initiative, it urges caution regarding MUC2025-020.

More than 43 million Americans in all fifty states have used Aging with Dignity’s Five Wishes program to convey their ACP decisions, and over fifteen thousand organizations (including healthcare providers, community organizations, employers, churches, and faith communities) distribute the Five Wishes advance directive, making it the most widely used ACP program in America. Every year, thousands of nurses, social workers, physicians, chaplains, and other healthcare professionals are trained in the Five Wishes person-centered approach to ACP.

Five Wishes and Aging with Dignity are eager to support and collaborate with efforts to promote effective ACP. Based on our 30 years of experience in this field, we are also keenly aware of how past missteps have placed undue burdens on disadvantaged populations – those who have limited familiarity with digital tools, those who have had insufficient access to appropriate healthcare services throughout their lifetimes, those who are alone and unrepresented by healthcare agents or family caregivers, and those who require language translation assistance to understand written and spoken communication.

The following recommendations would mitigate the concerning elements of the rule described later in the comment:

1. Clarify that ACP is not mandatory for patients by affirming that a patient’s decision not to complete an ACP document is a decision that is rightfully made by the patient, and that documentation of such a decision satisfies the requirements of the rule.
2. Preserve the ability of patients and families to complete the ACP process in the format that is most comfortable and appropriate for them. Requirements for digital documentation on the part of healthcare providers should not limit the options of patients and families who prefer to use paper documents or engage in ACP in a non-digital format.
3. Clarify the roles and responsibilities of the various healthcare settings included in the rule, particularly as it relates to the responsibilities of post-acute providers when the primary measurement is based on the presence of documented ACP decisions in the patient’s EHR before hospital discharge.
4. Expand the scope of clinicians who can be reimbursed for ACP conversations to include nurses, social workers, and chaplains; thereby encouraging more involvement by the members of the interdisciplinary team who are often best prepared to facilitate these discussions.
5. Clarify the characteristics of patients who are appropriate for the various forms of ACP included in the rule, specifically explaining that portable medical orders are only appropriate for certain patients.
6. Encourage training for effective ACP facilitation, particularly for professionals in the post-acute healthcare settings included in the rule, so they are adequately prepared to assist patients and caregivers.
7. If there is a standardized approach to documenting the presence of portable medical orders in the EHR, that same section of the EHR should also include space for the clinician to note the patient’s diagnosis that makes a portable medical order appropriate (like Louisiana’s La-Post document).

We applaud efforts to encourage ACP among all adults, yet we have seen in the past how well-intended regulatory efforts generate unintended consequences if not nuanced appropriately. MUC2025-020 does not yet appropriately reflect these important distinctions, and we would be amenable to providing further recommendations in light of our experience as America’s leading ACP facilitator.

Overly prescriptive implications:

While the measure itself does not require completion of ACP on the part of patients, the uniform tracking and measurement will presumably influence how clinicians approach ACP conversations. History has shown that if staff are not appropriately trained, these measures will become just another check-box in an electronic health record (EHR), another mere transactional engagement between patients and healthcare staff. If staff are encouraged to obtain the desired outcome of a documented decision recorded in the EHR – particularly if there are financial incentives for doing so – the leverage used to promote ACP by the regulatory agency through incentivizing providers may create a burden or a perceived mandate on patients.

Individually helpful, but confusing when combined:

It appears that CMS is highlighting four primary positive attributes of the rule. Each one individually is very positive. However, introducing them all together as part of the same new rule risks confusion.

1. It expands the measure to include all patients aged 18 years and older (rather than 65+) with one or more inpatient encounters.
2. It broadens the scope of care facilities and situations where ACP is encouraged.
3. It defines the affirmative outcome as the patient having an ACP document or documentation of an ACP discussion resulting in a documented decision in the electronic health record by the time of hospital discharge.
4. It expands the types of documents that may be used as “evidence” of ACP documentation to include durable powers of attorney for healthcare, advance directives, living wills, and portable medical orders (POLST, MOLST, DNR, etc.).

The combination of expanding the target cohort to include all adults over age 18 and expanding the types of acceptable ACP evidence to include portable medical orders may generate confusion. There has been widespread misunderstanding within the medical community about the intention of portable medical orders (Cole et al. 2023). POLSTs and similar medical orders are intended only for patients who are seriously ill or have advanced frailty, those whose death in the next year would not be a surprise to the clinician (Polst.org). Yet, it is common for healthcare providers to assume portable medical orders are appropriate for all patients. They are not.

The rule must include incentives and/or requirements to appropriately train staff so that the appropriate clinical tools are used for the appropriate patients. Additionally, any standardization of EHR functionality related to ACP that includes medical orders should include a notation that identifies the underlying condition that clinically indicates appropriateness for a portable medical order. Louisiana offers a good example with its La-Post document (la-post.org) that includes space for the clinician to note the “patient’s diagnosis of life-limiting illness or irreversible condition.” Staff training combined with standardizing the requirement to identify the underlying condition that renders a portable medical order appropriate would bring clarity where it is necessary.

The rule should also stipulate that a patient’s decision not to complete an ACP is, in fact, a decision. A facilitated discussion that ends with the patient deciding not to complete a document is still part of an effective ACP process, and facilities should not be penalized or incentivized based on document completion if that is not the patient’s informed decision.

Usability and functionality:

The draft rule requires clarification regarding the roles and responsibilities of various entities. Expanding the type of facilities where ACP is promoted is a good thing. We worry, however, that some of these facilities that are not accustomed to such interaction will not be prepared or sufficiently trained to engage with patients and caregivers as needed.

Accountability:

The rule measures a “documented decision in the EHR by the time of hospital discharge.” What then is the role and responsibility of skilled nursing facilities, home care providers, ambulatory surgical centers, and dialysis centers? Are these non-hospital facilities held accountable for the clinical outcomes that occurred before the patient’s discharge from the hospital (and subsequent admission to a new facility or provider)?

Reimbursement:

We also recognize the continued challenge imposed by the limitation on the types of providers who may facilitate ACP and receive payment or reimbursement. We strongly encourage CMS to permit reimbursement for ACP conversations facilitated by nurses, social workers, and chaplains. Particularly if this rule is finalized with a measure based on documentation prior to hospital discharge, it will be important to include members of the interdisciplinary clinical team who are most likely to work directly with patients and caregivers during the time leading up to discharge.

Truly patient-centered:

If a truly patient-centered ACP approach is the goal, any standardization efforts must accommodate flexibility, especially concerning patients who are typically underserved. For example, people who live in rural areas may have less access to digital ACP services. Even with access, they may feel more comfortable talking with their caregivers and health care providers and completing a paper document. While digital solutions may expand access to people living in rural areas, it is equally important not to lose sight of those for whom digital solutions may not be the ideal format for ACP. Despite our organizational efforts to promote digital solutions to ACP, it is clear that many people still prefer physical documents.

Others may be reluctant to participate in any discussion, particularly focused on EHR documentation that may be confusing to the patient, which implies less care will be provided. This is a known overall challenge (Lou et al. 2025), especially among those who have struggled to obtain care without insurance. Any standardized approach to ACP must accommodate the patient’s desire to express other important preferences and goals of care, even if that does not include a designated health care agent or code status.

Still others may be hesitant to complete an ACP process, in print or digitally, that does not include communication in the language they can easily understand (Colley et al. 2022).

Cole, Connie S., et al. “Factors Influencing Clinician Decision-Making about POLST Use with Nursing Facility Residents: A Qualitative Study.” Journal of the American Geriatrics Society, vol. 72, no. 4, 21 Dec. 2023, pp. 1199–1206, https://doi.org/10.1111/jgs.18717.

Colley, Alexis, et al. “Missed Opportunities and Health Disparities for Advance Care Planning before Elective Surgery in Older Adults.” JAMA Surgery, vol. 157, no. 10, 12 Oct. 2022, p. e223687, https://doi.org/10.1001/jamasurg.2022.3687.

Lou, Yifan, et al. “Explaining Racial and Ethnic Disparities in Advance Care Planning: A Decomposition Analysis.” Journal of Pain and Symptom Management, vol. 69, no. 5, 1 Feb. 2025, www.jpsmjournal.com/article/S0885-3924(25)00073-9/abstract, https://doi.org/10.1111/jgs.18717.