Elevating Patient and Caregiver Voices using PRO-PMs for Palliative Care

By Eric Goodlev, MD, and the AAHPM Quality Committee

For Hospice and Palliative Care (HAPC) professionals, stories matter. We are a narrative community, driven to truly understand what matters most to patients and families along their journey with serious illness. In creating therapeutic alliance, we spend our time working to ensure that our patients are heard and understood. In managing pain or other complex symptoms, we focus not only on pain scores and the biomedical aspects of pain pathophysiology, but also a patient’s whole-person experience with their distress, whether physical, psychological, spiritual, existential, or social.

In sum, HAPC professionals are proud advocates for medical care that honors the uniqueness of each patient’s story, and we strive to help patients and families to play an active role in shaping their story’s course while living with serious illness.

But how can we measure this, and make sure that regulatory bodies such as the Centers for Medicare and Medicaid Services (CMS) recognize the value added from this holistic care? The answer to this question is evolving as the reimbursement landscape shifts. Ongoing emphasis on value-based care—and de-emphasis of traditional fee-for-service reimbursement—means that palliative care teams will increasingly participate in alternative payment models or pay-for-performance programs such as the Merit-based Incentive Payment System (MIPS). These programs incentivize providers to provide high-quality care as assessed against established benchmarks (for example, related to rates of avoidable re-hospitalizations), and to engage in efforts to promote electronic health records (EHR) interoperability. In addition, CMS has established the MIPS Value Pathways (MVPs) as an optional MIPS participation option starting in 2023, that will offer streamlined reporting requirements focused on a related set of measures and activities, such as well-coordinated cardiac care.

At face value, participation in these programs makes clinical and operational sense for HAPC teams, as our specialty’s involvement in medical care has been shown to improve patient satisfaction with care, improve quality of life and reduce healthcare costs. However, the unique focus of palliative care on goal-concordance and providing specialized support across an illness journey presents challenges to HAPC practices, particularly as HAPC clinicians measure success not only against pre-set quality benchmarks, but also against a patient’s own functional goals and values.

For these reasons, the development of two novel Patient Reported Outcome Performance Measures (PRO-PMs) focused specifically on the needs of palliative care patients is an exciting milestone for the HAPC community. The “Palliative Care Measures Project,” spearheaded by AAHPM in cooperative agreement with the CMS based on funding provided under the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), has produced two novel PRO-PMs focused on the needs of palliative care patients.

Measure 1: “Feeling Heard and Understood”

The first measure quantifies the proportion of ambulatory palliative care patients who report feeling “heard and understood” by their palliative care provider and team in the six months following an outpatient palliative care visit. Importantly, this measure captures a patient’s perception of a provider’s understanding of their values, fears, emotions, and hopes, meaning that it reflects the overall quality of a team’s communication and therapeutic relationship in the eyes of the patient. In this way, this PRO-PM incentivizes a patient’s experience based on the team’s attentiveness to what matters most to them, even if these goals are in conflict with other previously established quality measures.

The importance of this PRO-PM is best illustrated by the comments of patients, families, and clinicians. As one patient/caregiver respondent said in the measure’s public comment period, “When you feel heard and understood you feel important and safe.” One clinician said, “Until the story is told, no other information can be received. Being heard and understood are critical for health care, yet the most underutilized.”

Measure 2: “Receiving Desired Help for Pain”

The second measure quantifies the proportion of ambulatory palliative care patients who report “getting the help they wanted for their pain” by their palliative care provider and team in the six months following an outpatient office visit. Like the first measure, this PRO-PM defines pain relief not based on a target pain score or degree of pain reduction, but rather against the patient’s perceived analgesic needs. The concept of “pain” in the measure was left intentionally undefined with the goal of potentially including physical, emotional, existential, or other kinds of pain, if desired by the patient. In addition, the emphasis on both the provider and the palliative care team recognizes the role of the entire interdisciplinary team (IDT) on treating pain as a biopsychosocial and spiritual symptom, defined in the context of a patient’s experience. The goal is to incentivize a process of shared decision-making surrounding the experience of pain, accounting for a patient’s concept of relieving pain.

So, what comes next? First, AAHPM looks forward to partnering with practices who wish to test these measures in their own patient populations. Second, these measures are currently undergoing review by the National Quality Forum (NQF) for endorsement, a crucial step towards operationalizing them as part of the MIPS program. For the AAHPM membership community, this is an exciting opportunity to show your support by engaging in the NQF process as a member of the public. Finally, these measures need to be tested in different populations—ranging from subspeciality palliative care patients to patients cared for by pediatric palliative care teams, to populations meeting broader definitions of serious illness—as a way to promote high-quality palliative care at both the specialty and primary palliative care levels. Stay tuned for subsequent blog posts that describe some of the ways the measures are being implemented.

Interested in helping? We’d love to hear from you! Please contact Katherine Ast (kast@aahpm.org).

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