Patient-Reported Outcomes for Palliative Care Point the Way to Becoming Better
Two new, painstakingly developed, rigorously tested patient-reported quality measures offer palliative care organizations new opportunities to not only measure and refine the quality of care they provide but also document for healthcare colleagues the benefits of the patient-centric approach to serious-illness care.
These two patient-reported outcome performance measures (PRO-PMs) for palliative care were developed over 3 years by AAHPM as part of the Palliative Care Quality Measures Project, funded with a $5.5 million grant from the Centers for Medicare and Medicaid Services (CMS). Partnering with the Academy on this project were the National Coalition for Hospice and Palliative Care, comprised of 13 leading national hospice and palliative care organizations; the RAND Corporation, a well-known not-for-profit research organization; and the National Patient Advocate Foundation (NPAF).
These two measures are being considered for endorsement by the National Quality Forum, a key arbiter of quality metrics nationally. They could be incorporated into CMS’s commitment to value-based purchasing through its Quality Payment Program, including the Merit-Based Incentive Payment System and alternative payment models. Those federal programs propose to reward physicians with quality payment based on performance and participation in new payment and delivery models.
But all of that might take a few years. In the meantime, the two palliative care measures, which were completed in September of 2021, can be adopted by palliative care providers as part of their own institutional quality improvement (QI) efforts—or as the foundation for building such a program. The goal is to fill a gap in patient-reported measures and to capture patients’ perspectives on how well their care needs are being met. One four-data-element measure asks whether patients felt heard and understood by their palliative care provider and team, and the other asks if they received the help they wanted for their pain from their palliative care provider and team.
“Think of the broad things we do in palliative care, having the conversations we need to have with patients so they understand their situation, so that their care matches up with what matters to them,” said AAHPM’s Chief Medical Officer Joe Rotella, MD MBA HMDC FAAHPM. “‘Did you feel heard and understood’ gets at the quality of that communication. But we also try to control their symptoms in order to help them live better with their pain or shortness of breath or nausea managed. With these two measures, we’re getting at two very important parts of palliative care,” Rotella said.
“You don’t need to wait for the government to implement these two patient-reported quality measures,” said Katherine Ast, MSW LCSW, AAHPM’s director of quality and research. The Academy has completed an implementation guide for how its members can adopt the measures, but many palliative care programs are already incorporating them into their internal QI efforts.
The measures were specifically validated for adult community-based and outpatient palliative care, but settings like hospitals or home-based teams can adapt them to their needs and QI processes. Other settings, including oncology or primary care, could also find the input helpful from systematically asking their patients these relevant and valuable questions. But they likely would benefit from their palliative care colleagues showing them the way to gather patient-reported perspectives.
The Voice of the Patient
Elevating the voices of patients and caregivers was prioritized throughout the development of PRO-PM, explained Rebecca Kirch, JD, executive vice president for policy and programs at NPAF and a member of the measures project’s Technical Expert Clinical User Patient Panel (TECUPP), which advised on measure development. Patients with serious illnesses and family caregivers were integrally involved in the TECUPP for every stage of the process.
“It was the patients in the room who drove the advisory committee to determine that being heard and understood was the innovation that separates palliative care from other medical disciplines,” Kirch said. “What should excite this field is that patients and caregivers have made it clear through their involvement in developing these measures that this is a high priority for them.” The validated measures should also help to legitimize what too often has been labeled a “soft” skill: communicating with patients and families about difficult topics.
“Palliative care organizations should first of all be holding themselves accountable for making sure that their patients feel heard and understood,” Kirch said. “Then they can encourage their colleagues in other disciplines to recognize and embrace the idea that practitioners at every level should be holding themselves and their institutions accountable for this kind of communication. That means making sure staff get trained in the communication skills necessary to make patients feel heard and understood—with palliative care leading the way.”
Patient-reported quality information also fits with the current national discourse around equity in health care. “You have to be culturally sensitive and competent in order for all of your patients to honestly say, ‘I felt heard and understood.’ We know that the field of palliative care is having a reckoning around diversity,” Kirch added. Part of ensuring that patients feel heard and understood is making sure that staff are trauma- informed, culturally competent, and healthcare literate. These quality measures capture the essence of what palliative care does and the importance of skilled communication that helps people get the care they want and avoid the care they don’t want, regardless of race, religion, or socioeconomic status.
“If we ask people about their needs, we can refer them to the services they need to make sure their priority worries are being dealt with,” Kirch said. Knowing what patients identify as most import to them helps in connecting them to the services they need. It also helps to demonstrate the palliative approach in clear, concrete terms for other professionals. “You can also use demonstrated patient-centered performance to request and obtain sufficient institutional resources to meet the demand for palliative care—and for the palliative care team to be recognized and adequately paid for what it does,” Kirch said.
Involvement of the Team
All members of the interdisciplinary palliative care team should be involved in measuring and improving quality, including the use of these two questions, according to George Handzo, BCC CSSBBC, director of health services research and quality for the HealthCare Chaplaincy Network. “Palliative care, by definition, is fully interdisciplinary, reflecting a philosophy of whole- person care,” Handzo said. “Another founding principle: you start where the patient is—which is also a foundational principle of chaplaincy.”
Patient-reported measures are critically important, Handzo explained. “We’re now going to learn a lot more about our patients’ perceptions. These are powerful tools. If we all do it and take the results seriously, it will change how patients relate to us,” he said. “If I am the head of hospice or palliative care, and my scores show that our patients aren’t feeling heard and understood, then I am going to make some changes.”
For Lama El Zein, MD MHA FAAFP FAAHPM, a professor at Columbia University Mailman School of Public Health; a family medicine and palliative care physician in Summit, NJ; and chair of AAHPM’s Quality Committee, the new PRO- PM measures reflect the spirit of palliative care: “These are different from other quality measures. We now have measures that fit what we do in palliative care.”
Official quality measures as part of formal programs such as CMS’s value-based purchasing may not be available for palliative care at this time. “But unofficially, there are a lot of data we can access by doing it for ourselves,” El Zein said. Everyone in health care is now paying more attention to patient experience. The new measures will help with self-evaluations and frame palliative care communication within the health systems in which it is based. El Zein suggested the PRO-PMs could also contribute to value-based purchasing outside of Medicare, and she plans to help inform private health payers about how to use the new measures.
A lot of things can affect patient perception, including how often the doctor encounters the patient, which other members of the palliative care team are involved, or the site of care. Also important are differences between teams, regions, or rural and urban settings. “We can also use the data to find out what else plays a role in what the patient thinks,” El Zein said. “I might walk into the cancer center’s infusion center and talk with the patient. That’s not a billable visit, but it could reflect on me and my program.”
Some programs may have information technology limitations or other limited resources and may have to do things a little differently. According to El Zein, “This is the start of a long path, and a step forward, even for programs that have resource disadvantages. Take these two questions and try to integrate them into your self-evaluations. We need to build. Start simple.”
Aligning Care with Values
Right now, palliative care programs incorporating the two new PRO-PM measures into their internal QI programs are using a variety of approaches reflecting their needs and existing QI infrastructure. The Alliance of Dedicated Cancer Centers (ADCC), representing 10 leading academic cancer hospitals in the United States, has been working for the past 3 years on the Improving Goal Concordant Care (IGCC) initiative.1 The overall vision is that “all patients with cancer and their families should receive care that aligns with their values and unique priorities,” said Kristin McNiff, a consultant with KM Healthcare Consulting in Atlanta working with ADCC.
“Three and a half years ago, leadership including CEOs at ADCC hospitals recognized that there was a gap in trying to make sure all patients are getting goal-concordant care,” McNiff said. IGCC was designed to address system gaps across the 10 centers and establish new expectations for when and how goals-of-care conversations should occur. By happenstance, the project coincided with the COVID-19 pandemic. At the same time, the development of PRO-PM offered the promise of adapting two new measures reflecting the values of palliative care and patient-reported perceptions for an oncology environment. “We were fortunate to have AAHPM’s work to build on,” McNiff said.
Palliative care teams do not have enough staff to hold goals-of-care conversations with every patient, according to McNiff. Under IGCC, primary oncology teams are responsible for timely initiation and ongoing conversations with their patients regarding goals of care using a primary palliative care model of disseminating the basics of palliative care to frontline providers. A series of interventions are being put in place using rigorous training techniques adapted to oncology practices, with an enabling infrastructure.
Oncologists would say primary palliative care is part of what they already do. But they could benefit from enhanced training in how to elicit goals from the patient as part of a primary care model and then build that into the treatment plan and electronic medical record, McNiff explained. As more oncologists receive training to have these conversations from organizations like VitalTalk or Ariadne Labs, “we expect to see increasing scores of patients feeling heard and understood,” she said. These courses are not just didactic but also include role play and other interactive techniques.
The measurement and evaluation have to do with being part of a collaborative and sharing lessons and resources. “Our leadership committee is made up of palliative care, supportive care, and oncology leaders from the 10 centers, including a lot of members of AAHPM,” McNiff said. “There is real enthusiasm and buy-in from our institutional leaders for this project, whose goal is to change practice and create enthusiasm to use these resources to improve quality.”
Has there been pushback from oncologists about requiring communication training? Some, according to McNiff. “It’s a big culture change. These are busy clinicians and researchers who are being asked to do one more thing. Each center is handling that issue in its own way, but they’re all sharing with the collaborative how individual centers are overcoming such resistance,” she said.
Learning from Pediatrics
Another example of building on the work of the PRO-PM measures is the Pediatric Palliative Improvement Network (PPIN)—a national healthcare learning collaborative formed in 2016 by six pediatric palliative care physicians and experts on quality with a goal of helping programs increase their capacity for surveying their quality.2 It now represents 146 members at 51 organizations, including leading children’s hospitals. Because the two PRO-PM measures were developed for an adult community-based palliative care population, they have not been validated for pediatrics. However, pediatric programs can use them to gather basic patient-centered quality data.
PPIN first tested the feasibility of the network through completion of one small QI project. Since 2017, members have held monthly conference calls offering refreshers in QI methods and have hosted two national QI workshops.
“Pediatric primary care often does not have access to quality surveys, so we decided to do our own,” said PPIN cofounder Emma Jones, MD, a palliative care physician at Dana-Farber Cancer Institute and Boston Children’s Hospital. “At my institution, I did it myself the first year, with the idea that I could then go to my hospital’s survey people to take it on for subsequent years.” She plans to distribute a survey card with a QR code at the end of visits.
There’s not enough funding for pediatric palliative care research, added Rachel Thienprayoon, MD, a palliative care physician at Cincinnati Children’s Hospital Medical Center. Quality surveying is done by clinicians on the team who have limited time and bandwidth. “Usually, there’s no third party to hire. Plus, we don’t have drivers like value- based purchasing to push QI. Most of our group is dedicated to putting in the hours because we want to know the data,” she said. “Now we have 30-plus sites rolling out quality measures, including the new patient-reported measures, in standardized ways.”
Jones thinks the adult field can learn from pediatrics in terms of how to standardize implementing quality initiatives. “Because our field is small, we have been able to be nimble and a testing ground for adult palliative care to learn from,” she said.
Mobilizing the Community
What are ways to mobilize the community to support palliative care that make patients feel heard and understood? “We’ve spent a lot of time for years trying to build public awareness through campaigns, some funded by the government. That hasn’t gotten us very far,” Kirch said. “But now a lot of consumer-oriented groups are singing in a community chorus.” Patient advocacy groups are advocating for palliative care to create public demand and providers are serving as effective advisers in their community.
“Embrace it. Pursue the things that [ensure] you can impeccably deliver care that makes patients feel heard and understood,” Kirch said. “This is something providers should welcome with open arms because it’s the next step in legitimizing the key skill palliative care brings to the table that’s different from everyone else. It’s the way we continue to legitimize and elevate the field. Help to create a common chorus of public demand and practitioner advocacy.”
These measures can help palliative care teams gauge whether their program is truly providing patient-centered care and, if not, identify the need for resources such as training and protocols. Skilled and effective communication around difficult subjects is essential to providing patient- centric palliative care for serious illnesses. Even though such communication skills are embedded into palliative care education, additional targeted training may be needed for the team—especially if initial results from the quality measures suggest less-than-optimal outcomes for patient perceptions of being heard and understood.
Two common sources of such communication training include VitalTalk and the Ariadne Labs Serious Illness Care Program. AAHPM also offers resources on communication and teamwork, which can be found at AAHPM Learn. For more information about the PRO-PM initiative generally, visit aahpm.org/quality/cms-quality-reporting or nationalcoalitionhpc.org/qualitymeasures.
- McNiff KK, Caligiuri MA, Davidson NE, et al. Improving goal concordant care among 10 leading academic U.S. cancer hospitals: a collaboration of the Alliance of Dedicated Cancer Centers. Oncologist. 2021;26(7):533-536.
- Thienprayoon R, Jones E, Humphrey L, Ragsdale L, Williams C, Klick JC. The Pediatric Palliative Improvement Network: a national Healthcare Learning Collaborative. J Pain Symptom Manage. 2022; 63(1):131-139.
Larry Beresford is a medical journalist in Oakland, CA, with a strong interest in hospice and palliative care.