Communicating Palliative Care’s True Value

Larry Beresford

At a time when many palliative care managers are busy trying to find their footing in value based models of managed healthcare delivery for covered populations (see “How Can Hospice and Palliative Care Clinicians Find their Home in Population Health,” AAHPM Quarterly Newsletter, Fall 2023), Academy member Sandra Gomez, MD FAAHPM, president of Symptom Management Consultants in Humble, TX, was gratified for a chance to speak at the national conference of the American College of Healthcare Executives (ACHE) on March 26, 2024, in Chicago.

There, she and colleagues Rodney Tucker, MD FAAHPM, of the University of Alabama at Birmingham and Tom Gualtieri-Reed of Spragens & Gualtieri-Reed presented palliative care concepts to the assembled leadership of a healthcare system in transition. They were invited by Chuck Stokes, FACHE, ACHE’s past chair and a retired healthcare executive who served as executive in residence at the University of Alabama at Birmingham. [Editor’s on July 23, 2024.]

When participants at her session were asked if their networks and organizations had palliative care programs, most hands went up. When asked if they knew whether their network’s palliative care program was healthy, robust, or well-staffed, most hands went down. “Those leaders affirmed that they have little idea what palliative care does,” Dr. Gomez reported. Most were unaccustomed to speaking about care at the end of life. “We had a good session,” she says. “The room wasn’t empty. They asked a lot of good questions.” But clearly there were gaps in understanding.

If palliative care advocates are trying to advance what they do best—managing the most medically complex and seriously ill patients at home, protecting them from avoidable emergency room visits and hospitalizations, managing distressing symptoms to prevent crises, clarifying these patients’ goals of care, offering medical care plans in accord with those goals, avoiding unnecessary and unwanted treatments, and supporting family caregivers—then they would seem to be facing a communication problem. That is, a gap in understanding about what palliative care offers, confusion about what value-based care entities might desire from this field, and lack of clarity about how their respective languages differ, overlap, or might need to be reconciled.

CEOs need to know that home-based palliative care can meet seriously ill patients’ needs, Dr. Gomez said. “It works beautifully as a wraparound service. But we need to know who is at financial risk for that patient. We need to look at the conversation with a different lens: Who am I trying to convince?” Where are they getting their information about palliative care?

Hospital systems have created palliative care programs, she said, “but they’re losing money on them. It’s expensive to deploy the full palliative care team.” There are demo projects at the Centers for Medicare and Medicaid Services (CMS), with people working with hospices to build community-based programs for seriously ill patients but without an appreciation for how expensive it is to actually care for such patients.

Leaders in palliative care, even at the highest levels, “usually only talk at each other’s conferences. We need to be talking to different groups, not just to each other,” Dr. Gomez said. “We need to be sharing our articles about cost savings with CEOs. We need to get in front of those folks in their venues. Chuck Stokes had challenged us to put together a palliative care model and value proposition for healthcare organizations and value-based care organizations. We needed a sponsor, and so we are aligning with Chuck[‘s work].”

THE VALUE PROPOSITION

In her career, Tara C. Friedman, MD FAAHPM, past president of AAHPM and chief medical officer (CMO) of Chapters Health System in Temple Terrace, FL, has gone from building inpatient palliative care programs in academic and community hospitals to Aspire Health, an early example of community-based palliative care as a direct contracting entity, to a large multistate hospice organization. “When I first got into the field, we were very focused on hospital-based care. We had no idea that the next big change in health care would be to push back into the community,” Dr. Friedman said.

“Our field is still very young. Twenty years ago, we were shouting from the mountaintop, ‘Look at us!’ With rapid growth in the field, we quickly realized we didn’t have enough people to do everything the system wanted from us. And now we need to refocus on how palliative care is important in this new context. In many ways we are still struggling with our own identity now that the need is to take care further upstream,” she said. “We also have to think about what resonates with a health plan or other risk-bearing entity.”

Palliative care advocates need to learn a new language, understand a slew of unfamiliar acronyms, and appreciate a new set of key performance metrics, keeping members healthier and well-informed and providing goal-concordant care for the sicker members, Dr. Friedman said. “We need to translate that into vocabulary risk-bearing entities understand, like days at home, medical loss ratio, hospital admissions and ER visits per thousand, and the like.”

With more than 40 years of experience delivering on full-risk care delivery, hospice has more experience in this type of care delivery than other sectors of health care. “We might consider how to leverage that experience into innovation, rather than waiting in the wings to see what happens,” Dr. Friedman said.

Dana Lustbader, MD FCCM FAAHPM, professor of medicine at Zucker School of Medicine at Hofstra/Northwell in New York and national medical director at Humana, started her palliative care career more than 20 years ago by creating an inpatient consult service, first in one hospital, then spread across eight hospitals and an entire health system. “We also built a hospice and palliative medicine fellowship. Then we started a supportive oncology clinic in a bricks-and-mortar cancer center and a palliative care clinic within a large provider group.”

She built out tele-palliative care 10 years ago, using video visits long before the pandemic, and then joined Optum, the clinical care arm of the health plan giant UnitedHealthcare, to scale up home-based primary care for frail seniors and those with advanced illness enrolled in Medicare Advantage, before moving on to Humana.

As Dr. Lustbader looks back on that experience, she is concerned that the hospital-centric way of delivering health care isn’t what many seriously ill patients or their families want today. Instead, they would prefer to receive reliable care where they live. “How do we think about preparing our workforce to pivot to where the puck is going—which is to provide care in the home, leveraging AI and remote patient monitoring, with a workforce that can manage medically complex patients at home—when nearly all medical training occurs in the hospital or clinic setting?”

Palliative care advocates should be asking how their own boss pays the bills and what is keeping the boss awake at night, she said. “What are the headwinds we might be facing” with Medicare Advantage and other risk-bearing entities?

Payment for home-delivered care is complicated, Dr. Lustbader said. “It’s hard, and one reason why is because it’s like the Wild West out there right now—essentially unregulated.” Palliative care is not a home health agency benefit and it’s not hospice care. It is difficult to sustain in a fee-for-service model and nearly always requires some sort of per member per month payment or shared financial risk arrangement.

WHEN HOME-DELIVERED CARE SAVES

Recent data from the CMS Innovation Center’s Independence at Home pilot showed that the most frail individuals with the most impairments in their activities of daily living saved the most money from home-delivered care. Dr. Lustbader was lead author of a 2017 Journal of Palliative Medicine study showing reductions of $12,000 in the last 3 months of life for patients receiving home-based palliative care implemented within an accountable care organization.1 Both pilot and study demonstrated improved outcomes and significant reductions in total cost of care for the most functionally impaired or seriously ill subgroups, she said.

Kimberly Bower, MD, palliative care physician at Rady Children’s Hospital–San Diego and former medical director at Blue Shield of California, said healthcare executives make decisions based on finances. A major financial driver for health plans is the number of members enrolled in the plan, which is closely linked to the satisfaction of members with the plan and its benefits package. Palliative care, through its whole-person, patient-centered approach, can be leveraged as part of a strategy to improve member satisfaction and the health plan’s net promoter score.

Palliative care providers need to remind plans of the power of high-touch care that is integrated with other interventions that health plans are investing in, such as hospital at home and home monitoring, she said. “We know how to do this. We have been doing it for a long time. We can create value by aligning patient values and preferences with their treatments and educating them on how to manage their disease and avoid the hospital.”

When it comes to palliative care’s role, generally payers are open to covering a doctor’s visit but not the whole palliative care team—which we believe is crucial to achieving optimal outcomes. And that’s probably not going to change until the overall financial model changes, Dr. Bower said. Groups like Sharp and Kaiser in California, where the payer and provider are closely related, are now significantly ramping up their palliative care programs because they realize the financial benefits of team-based, proactive, patient-centered care.

But value-based care elsewhere is slow in coming. “If you’re paying for care fee-for-service and not realizing the cost savings of avoidable hospitalizations and ED visits and unwanted treatments, it’s hard for palliative care to make sense fiscally. Additionally, we don’t have consensus on the best ways to measure quality in palliative care, making the implementation of value-based payment models challenging,” she said. “At Blue Shield we found that patients who received home-based palliative care were referred to hospice sooner. This resulted both in the patients receiving more benefit from their hospice care and overall cost savings.”

VALUE-BASED OR FEE-FOR-SERVICE

Charles von Gunten, MD, a hospice and palliative medicine veteran who is now CMO of Elizabeth Hospice in San Diego, CA, wonders if the field is overemphasizing the role of value-based care and the need to take on risk contracts, given the uneven and incomplete dissemination of value-based models into the population. Most hospitals, he said, still operate largely under fee-for-service reimbursement. And if they are only 60% to 70% full, a pitch by palliative care to keep their patients out of the emergency room and avoid readmissions may not be well-received.

“Value-based care is an interesting innovation, and it’s being talked about a lot. But who has actually successfully implemented it?” Dr. von Gunten asks, adding that he believes all health care, just like all politics, ultimately is local. “You need to know your audience and know your market. My suggestion: start your conversations with inquiry—not advocacy. Find out what they know and what they want.”

He said that when he was talking about palliative care recently to senior health system leaders, he found out that one of their biggest concerns was a 50% turnover rate among their oncologists, who were burning out from trying to manage difficult, complex patients without the right resources. And that is something palliative care should be able to help with.

“People in health care are enthusiastic for what we have to offer. They’re not opposed to palliative care. They’re eager to collaborate. Engaging with humility is first as you reach out in the larger environment of health care,” he said.

Dr. Friedman thinks it’s important to dip a toe into the pool of value-based care, no matter how slightly. “It’s being a partner with someone. It’s going to your C-suite and asking: ‘What kinds of value-based approaches is our health system involved in? And how come palliative care isn’t included in that?’” When the next CMS Innovation Center model comes along, is your hospice or palliative care service considering being part of it?

“We need to start talking about being involved now, proving that we can be part of it and can learn along the way. As a field, we have continued to evolve. But now we need to be nimble in navigating the changes, not just as consultants, but taking risk and considering novel reimbursement and payment strategies for sharing that risk,” Dr. Friedman said.

No one should be in a position of overseeing a home-based palliative care service until they have gone on a home visit to see how palliative care patients are really managed in the home—and what all that entails, Dr. Gomez said. “I took my CEO on a home visit and have asked his boss on one.” But also, find the palliative care team in the hospital and ask to round with them and learn. She encourages palliative administrators with a clinical background to keep one foot in clinical practice, if possible.

BUILDING A BETTER MODEL

For Chuck Stokes, the field’s next step is to make its contributions easier to understand by putting together new and better “models” for palliative care (and for hospice, which is just as important)—models that can be replicated in different communities and different parts of the healthcare system. Stokes’s hospice model proposes a more consumer-centric language and approach to how hospices present themselves to their community and how this image could be aligned with consumer expectations.

“I’d like to see the hospice program develop to another level,” he said. Develop a palliative care and hospice scorecard and share the data transparently with healthcare organizations and consumers. “You’ll have a higher probability of getting that value proposition through to healthcare executives,” Stokes explained.

Make sure everyone is clear on the distinction between palliative care and hospice and the point of appropriate transition and transfer between the two. “Can you bundle and package all of that into a model program for the home environment and then implement as much as your hospital or healthcare system can afford to implement, managing and caring for patients in the home, with greater use of telemedicine and other new technologies?” he poses. This reduces readmissions to the emergency department, the hospital, and the ICU, thus reducing overall costs of care.

Stokes thinks there are four or five things that people particularly care about at the end of life. That list could include the patient’s spiritual well-being; getting financial affairs in order with a visit from the hospice financial counselor; unresolved relationships; the control of discomfort; even the patient’s bucket list of things they wanted to accomplish before they transition from this life.

The goal of palliative care and hospice programs should be to help people live their highest quality of life and to be fully prepared for their ultimate, eventual transition. “The message is: we are going to put you in this hospice program, and we are going to try to create an exceptional experience as you transition, living fully for whatever time you have left. We’re going to try to create an experience for your family that you’re leaving behind.”

He also recommended a similar set of consumer-centric goals for palliative care to meet, “with the problems we will solve for the person. That should be attractive to the people who are responsible for the costs of caring for seriously ill patients,” he said.

“We could ask healthcare system foundations to help support and fund development of these models,” Stokes said. “Let’s enlist eight or 10 national leaders in hospice and palliative care—your best and brightest—who agree to spend the next 6 to 8 months creating these models of consumer-oriented best practices, asking what can be learned from other healthcare systems and from other countries, and then putting together a white paper of best practices.” Then quantify what hard dollar savings result from providing palliative care and how it improves patients’ quality of life.

Such a model may also improve engagement for doctors and other health professionals, bringing them back to their “why” in choosing a career in health care in the first place, he said. But these models have to be easily understood, easily communicated—and easily quantifiable. That is just essential in today’s healthcare industry.

Reference

  1. Lustbader D, Mudra M, Romano C, et al. The impact of a home-based palliative care program in an accountable care organization. J Palliat Med. 2017;20(1):23-28.

Larry Beresford is a medical journalist in Oakland, CA, with a strong interest in hospice and palliative care.

A friend of the Academy, Chuck Stokes died suddenly on July 23, 2024. Our hearts are with his family and friends in their time of grief.