Charting a Path for Scientific Research on Serious Illness Care

Larry Beresford

Major changes are coming to the landscape of scientific research on the care of patients with serious illnesses. These impending transitions are creating questions for the community of hospice and palliative care research scientists. What will the future of serious illness research look like? Who will provide the needed funding, leadership, and home base to keep the field moving forward?

Recently announced developments include:

• the decision to close the National Palliative Care Research Center (NPCRC) at the Icahn School of Medicine at Mount Sinai in 2025
• the end of federal funding for the Palliative Care Research Cooperative group (PCRC) this year
• Cambia Health Foundation’s Sojourns Scholar Leadership Program choosing its 10th and final cohort of up to 12 researchers to receive 2-year awards for innovative and impactful projects in the field of palliative care
• the National Institute on Aging (NIA) leading efforts to convene subject matter experts from other relevant institutes to augment strategic coordination of palliative care research within the broader National Institutes of Health (NIH)—the leading federal agency supporting medical research.

 

“The Academy has been studying current and future needs and considering ways to increase its support for the research agenda. We don’t have all the answers but know we’ll play an important role,” said Joe Rotella, MD, AAHPM’s chief medical officer.

There is a tremendous need to study how to prevent and relieve the suffering associated with serious illness. Research costs a lot of money and thus depends on government support, he said. Can NIH provide the necessary funding and infrastructure for this important research within its relevant institutes?

AAHPM, along with other groups, is trying to step up its own leadership, collaboration, and community building. “We have a sense of urgency balanced with a deliberative approach to ensure that we can sustain our commitments over the long haul. In fact, we’ve always had a strategy to support research, even as we acknowledge that the funding picture has recently gotten tighter,” Rotella said.

At a Crossroads

“There are a couple of big needs in serious illness research. One is for solid funding to conduct the research, so that we can learn what works and doesn’t work for these patients,” Rotella said. “If you look at the NIH annual budget and how much of it goes to what we would call palliative or serious illness-related research, that’s less than 1% of the institute’s attention. We are asking for a larger share of that attention. We’d also like to see a more coordinated strategy.”

What is needed is a transdisciplinary, transagency approach acknowledging that palliative care doesn’t fit into traditional organ- or disease-specific research institutes, like those at NIH. Though many of the institutes, centers, and offices within NIH address populations that include people with serious illnesses, no single entity is in charge, Rotella said.

“I’m grateful that NIA is saying, ‘Let’s get the attention of the other institutes and talk about what a coordinated strategy would look like.’ NIH is a big agency. They need to help us figure out where we need to fit within the way they do business. We can’t do that alone,” he said. “Then we also need infrastructure that supports the recruiting, training, mentoring, sponsoring, growth, and development of the researchers who will do the work. Some of that support could come from NIH, as it has in the past.”

That will require funding, something AAHPM already has been pursuing. “We recently submitted testimony to the House Committee on Appropriations, Labor, Health and Human Services, Education, and Related Agencies Subcommittee to make the case that successful implementation of a transinstitute strategy at NIH requires enough financial support to develop the next generation of researchers, who will need career awards to get them jump-started,” Rotella said. “We asked for a $20 million appropriation to implement this transinstitute strategy and plan to continue working with lawmakers to ensure it is adequately funded.”

How Is AAHPM Advancing Research?

These major shifts in funding and infrastructure may have been an unpleasant surprise to some in the field. But the Academy was already working on building more infrastructure for this research.

Its first State of the Science meeting, which brought research scientists together virtually in 2022 to discuss these issues, will be followed by an in-person science meeting in March of 2024 in conjunction with the Annual Assembly of Hospice and Palliative Care in Phoenix, AZ.

The Academy also awards scholarships for new and early investigators to attend the Kathleen M. Foley Palliative Care Retreat and Research Symposium. The annual symposium was established by NCPRC to help develop research works in progress and teach competencies in research methodology. The next symposium is October 24-26, 2023, in Jackson Hole, Wy.

AAHPM urged Congress last year to ask that NIH report on what it is doing to develop a transinstitutional strategy for serious illness research and to ensure that palliative care is integrated into all areas of medical research. Congress included that request in its Consolidated Appropriations Act at the end of 2022. In March of this year, NIH responded with a Fiscal Year 2024 “Congressional Justification” document, in which it pledged that NIA would take the lead to convene subject matter experts from 10 other named institutes and offices to “expand and intensify the strategic coordination of palliative care research efforts, as well as identify future research topics and questions that pertain to palliative care.”

In concert with the National Coalition for Hospice and Palliative Care (NCHPC), the Patient Quality of Life Coalition, and senior research subject matter experts, AAHPM recently met with NIA leadership. Rotella characterized the meeting as “fantastic,” saying NIA “confirmed its intention to take the lead on working with all the other institutes, centers, and offices that address serious illness. They told us, ‘We’ll introduce you to the right people at the other institutes.’”

The Research Committee

AAHPM’s Research Committee aims to launch multiple projects over the next few years. The committee is eager to move from planning to action and will meet bimonthly, Rotella said.

“The committee recognized it needed to shift its focus and charges in this evolving research environment and spent much of the past year examining and updating its committee charges,” he said. “It’s time now to start putting them into action.”

Erica Kaye, MD, recently became chair of the AAHPM Research Committee. She is the director of quality of life and palliative care research at St. Jude Children’s Hospital in Memphis, TN. She credits early career awards from AAHPM and NPCRC, including an invitation to attend the Kathleen M. Foley research retreat, for advancing her own career in research.

“Those opportunities were instrumental in carving out the time and space and making the networking connections to launch my research platform. I’ve also been privileged to learn from existing resources and to be part of the PCRC. I can speak personally and professionally to how important those mechanisms were for allowing me to further my work as a research professional,” she said.

“Now, transitioning into medical leadership and other responsibilities, I oversee the career growth of a number of bright and motivated trainees and junior faculty across institutions. So I am acutely cognizant of the challenges they face in trying to obtain research support and opportunities.”

Kaye described palliative care as a relatively nascent field within medicine. “What’s important is that palliative care does not get siloed. Palliative care is integral to the practice of so many other fields, which rely on it to provide quality, person-centered care across the illness journey and at the end of life,” she said.

NIA has a vested interest in these issues—but palliative care is not just for older patients. “One of the challenges for research in this field is to have a home for palliative care when many fields, specialties, and disciplines claim it as integral to their own work,” she said.

Kaye is optimistic about her committee’s role in “offering some solutions. Our new charges are broad and afford us opportunities to think creatively about how to navigate the current gaps. One thing we aim to do is to partner more closely with the Academy’s Early Career Professionals and research special interest groups and collaborate on development of networking opportunities and logistical support for younger researchers,” Kaye said. “Additional strategies we have discussed include connecting early career professionals with formal mentorship, potentially leveraging existing AAHPM platforms such as its Connect [online community discussion platform].”

The committee plans to advance these goals by working with partnering organizations as well. “In the future, we hope to begin conversations to collaborate with research leaders at the Hospice and Palliative Nurses Association (HPNA) to propose research priorities for multidisciplinary investigators to leverage in their funding applications,” she said. “Additionally, representatives from the Research Committee have met with leaders at NPCRC and PCRC to brainstorm collaboratively about how best to fill the gaps left by their winding down, advocate for increased funding and resources, and create novel opportunities and forums for people in our field to support each other.”

‘Real Movement’

Amy Melnick, MPA, is the executive director of NCHPC, which represents 13 of the professional societies that speak for the various professions in the hospice and palliative care sphere. NCHPC also has submitted testimony on behalf of its members in support of a larger role for NIH in promoting palliative care research. Melnick thinks this time of transition is an exciting and pivotal moment for the field.

“It’s official that NIH and NIA have stepped into leadership roles on this issue. They have responded to Congress and said they will lead a transinstitute strategy for palliative care research,” Melnick said. “So far, no additional funds have been appropriated—but for me, having worked in this field for almost a decade, I see real movement.”

Melnick encouraged AAHPM members to follow developments in Washington, DC, and to be prepared to respond when asked to speak up. “When the time is right,” she said, “grassroots advocacy will need to be activated on these issues.”

Transitioning to Public Sector

The science of serious illness medicine was still in its infancy when NPCRC was launched in 2005, said NPCRC’s founding director, R. Sean Morrison, MD, professor of medicine and director of the Lilian and Benjamin Hertzberg Palliative Care Institute at Mount Sinai in New York City. At the time, there weren’t many existing mechanisms to support the field’s development, but the Kornfeld Foundation funded the center’s creation.

“We planned to have a 10-year run, with the goal of building research capacity and giving early-stage investigators needed support to secure NIH funding,” while creating a virtual organizational home for the scientists, Morrison said.

From the outset, the goal was to successfully transition science funding from private sector philanthropy to the NIH, along with the existing professional associations, he said. “We also wanted to create an evidence base that would bring palliative or serious illness care to the same level as research for diseases like cancer or heart disease, while creating a community of palliative care scientists.”

But after 10 years of supporting these goals with funds from Kornfeld and 20 other private philanthropic organizations or individuals, it became clear that funding cuts at NIH were reducing opportunities for investigators. “We felt we needed to sustain the field’s growth, so we extended NPCRC’s life for 10 more years,” Morrison said.

“I think we accomplished what we set out to do and more,” he said. “I’m pleased with what we achieved, with 90 percent of the scientists we funded going on to obtain other research funding sources, which were directly linked to their NPCRC awards.”

NPCRC channeled approximately $40 million to the field over the past 18 years, with $30 million in grants supporting research by 146 investigators, which in turn were leveraged into more than $250 million in federal funding.

“We put palliative care on the map through partnerships with leading federal and private sector organizations,” Morrison said.

Palliative care has established an extraordinarily strong clinical field with clinical models—particularly hospital-based models—and established strong clinical training programs. “I feel like the field is in good shape, and I’m proud of that,” he said.

But where does palliative care go next?

There’s always a risk with change, he said, “but I’d say there’s a greater risk in relying on fickle private sector philanthropy to fund research.”

Morrison, too, would like to see a transdisciplinary office of serious illness research in NIH or one of the larger institutes. It could provide both career awards for early-stage investigators and the research dollars needed to fund large-scale research studies.

When NPCRC closes, there will need to be a convening or intellectual home for the serious illness research communities, Morrison said. “NPCRC served that role for years. My hope now is that the professional member organizations like the Academy, HPNA, and others will be that home in the way that the American Society of Clinical Oncology offers an intellectual and scientific home for cancer researchers. Finally, there should be a periodic meeting focused on the science of serious illness research. The Academy’s State of the Science meeting last year was a good step forward for the field.”

Serious illness scientists have a lot more work to do, Morrison said. For example, there is a need to devise alternatives to opioids for treating the pain of serious illness and to develop treatments for fatigue. Those advancements won’t happen overnight.

“Science takes time. There’s no way around that,” he said. “We need to invest in science and research so that the care we’re providing is as high-quality as any other area of medicine. We are now at the point where we have so many clinicians, and so many graduates coming out of fellowships. We’ve got to give them the tools they need to provide high quality care, based in evidence-based, scientifically valid studies.”

That’s a need that AAHPM can help fill, Morrison acknowledged. “I think this is a prime opportunity for groups like AAHPM to step up and play a role in developing serious illness research scientists and being an advocate for their work.”

The Future of Serious Illness Research

The future of this field, Morrison said, lies with the next generation of serious illness research scientists. Many of these research scientist have been supported by NPCRC, PCRC, and other facilities or organizations. Morrison mentions researcher Abby R. Rosenberg, MD MS MA, as an example of that future. Rosenberg is chief of pediatric palliative care at the Dana Carver Cancer Institute and director of palliative care at Boston Children’s Hospital.

Rosenberg said pediatric palliative care research—compared to adult-focused palliative care research—can be difficult because of the small populations of both patients with serious illnesses and investigators trying to help them.

“What I love about our smaller community, though, is that we’ve quickly come together to collaborate and advance the field,” she said. Her own research has emphasized programs to address stress, resilience, and quality of life for people with serious illness and their families, including a resilience intervention called PRISM.

“Palliative care research faces significant challenges, which have been exacerbated by the looming end of the NPCRC and PCRC,” Rosenberg said. “Those programs have been critical to launch countless palliative care research careers, including mine—and still, we have too few scientists and too few training opportunities to support the next generation.”

Many of the people who identify primarily as “researchers” were trained in other fields, such as oncology or critical care, she said. “It would be great if there were more subspecialty palliative care clinician-scientists. That will require a research home for all of us.”

Another challenge is the methodology of serious illness research. “What are we measuring; and how do we interpret the results?” she asked. “For example, we can’t consistently find measurable impact from advance care planning (ACP), even though a patient who has been part of an organized ACP process will say it mattered. What can we do about that as researchers? We need to show robust value for our interventions, and that’s incredibly difficult.”

Rosenberg said that palliative care researchers also are looking at past research and identifying “gaps” that may require additional study. “For example, we need to better include folks in marginalized communities and address the paucity of long-term palliative care outcomes,” she said. “We are also starting to understand that our interventions need to meet people’s needs in the moment. How do we tailor our programs to be both person-specific and widely generalizable?”

She quotes Morrison in identifying a goal. “Sean Morrison muses: what’s in our syringe that is scalable, reproducible, and measurable? We want to partner with the larger palliative care community to determine how to answer that question, and we need platforms to share what we’re learning.”

For Rosenberg, those challenges point to the need for more than an office overseen by NIA.

“I love that NIA is helping, and yet—as a pediatrician—I worry it is not enough. I think we need a special institute for palliative care within NIH, dedicated to seriously ill patients across the entire lifespan,” she explained, mentioning the National Institute for Minority Health and Disparities, which cuts across other NIH institutes and populations. “I speak for those of us who have built our careers on studying serious illness. In the current federal research space, we feel homeless. An institute of our own would be great.”

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