Dr. Diane Meier on the History and Future of Palliative Care Research

The term palliative care entered the lexicon fifty years ago, through Balfour Mount at McGill University, in 1974. Our Academy was started in 1988 as the Academy of Hospice Physicians (changing its name to the American Academy of Hospice and Palliative Medicine, or AAHPM, in 1996, offering a certifying exam in 1997). In 1990, palliative care was recognized by the World Health Organization as a new specialty focused on improving the quality of life for people living with serious illness.

Thanks to the strategic efforts of Charles von Gunten, MD, and colleagues, in 2006, we became an official medical subspecialty of the American Board of Medical Specialties, with ten parent specialties. Subspecialty palliative medicine fellowship training is available at 195 academic centers. More than 95% of U.S. hospitals with over 300 beds—where most people with serious illness get their care—report the presence of a palliative care program, a tripling since the early 2000s. And community-based palliative care is proliferating, gaining attention as an essential element of value-based payment strategies.

A critical capacity for palliative care, as in any specialty, is a vibrant research culture. Research helps us identify clinical best practices and demonstrate the value of the work that we do. Our field’s main peer-reviewed journals are the Journal of Pain and Symptom Management (JPSM), launched in 1986 by Russell K. Portenoy and George Heidrich, and the Journal of Palliative Medicine (JPM), launched by Charles von Gunten in 1997. These journals have grown in subscribers, range of topics covered, international reach, and impact factors since their inception.

We’ve come a long way.

Among the most important recent changes in our field is the growth in research and researchers in palliative care.

When our field got started in the U.S., before 2000, there was little to no National Institutes of Health (NIH)-funding and research training, few centers of research excellence, and a scarcity of trained researchers in palliative care. Laura Gelfman, MD, and colleagues have been tracking NIH support for our field since 2006 in a series of articles on the NIH funding landscape for palliative care through 2020. Their work demonstrates steady growth in the number of NIH-funded palliative care investigators (especially early-stage), higher levels of NIH support for palliative care research, growth in publications of NIH-funded research, a broadening of research topics beyond pain and symptom management, and increased publication of our work in high-impact, top-tier, non-palliative care journals, suggesting rising interest in our field from other specialties.

However, the 2020 analysis demonstrated no change in the proportion of all NIH funding devoted to palliative care research. Just as in prior analyses, fewer than 1% of NIH grants in total supported palliative care research, despite the high prevalence of serious chronic illness (cancer, heart and lung disease, frailty, dementia, stroke, ESRD, other neurological degenerative diseases) studied by the Institutes. The authors called for more funding from both public and private sources, continued investment in the identification and development of early-stage investigators, and better representation of palliative care researchers in NIH study sections.

Two main entities—the National Palliative Care Research Center (NPCRC), established by the Kornfeld Foundation with additional support from the National Institute on Aging (NIA) and multiple private philanthropies from 2005 to the present, and the Palliative Care Research Cooperative (PCRC), funded by the National Institute of Nursing Research (NINR) from 2010 to 2023—have served as catalysts for our research capacity.

Through support for early-stage investigators, research training and mentoring, provision of technical assistance, and convening processes that created a collaborative research community, NIH- and Patient-Centered Outcomes Research Institute (PCORI)-funded and published research in palliative care has taken off.

This is nowhere better exemplified than the plenary at the State of the Science in Hospice and Palliative Care meeting during the 2024 Annual Assembly of the American Academy of Hospice and Palliative Medicine. We heard from three investigators: Katherine Courtwright, MD, MSHP, from Penn Medicine; Corita Grudzen, MD, from Cornell University; and Tom LeBlanc, MD, (Duke University). All three scientists carried out large, randomized, multi-site intervention trials on critical and practical clinical questions. I was so moved by the progress their presentations represent for our field that I nearly burst into tears.

1. Do simple electronic health record (EHR) nudges change clinician behavior and patient outcomes in the ICU?

Katherine Courtwright and colleagues studied the use of EHR ‘nudges’, reminding critical care doctors at ten hospitals and in seventeen ICUs to think about their patients’ functional and vital prognoses earlier in an ICU stay and to consider offering comfort care alternatives to see if either or both could improve the quality and outcomes of care. They enrolled over 3,200 critically ill patients. Clinicians were asked to document their opinion on the patient’s likelihood of survival at 6 months and the likelihood of functional impairment for those who survived. Clinicians were also asked if they had offered comfort-focused care, and if not, why not. In preliminary findings, these nudges did not reduce hospital length of stay but did increase hospice referral and earlier comfort care orders. Implications suggest broadened use of EHR nudges to remind clinicians of evidence- and guideline-based practices as a means of countering default clinical escalation.

2. Can nurse-led telephonic case management substitute for outpatient specialty palliative care for seriously ill patients seen in the emergency department?

Corita Grudzen and colleagues compared the impact of weekly palliative care-certified nurse-led telephonic case management versus monthly specialty MD or APN, office-based outpatient palliative care in more than 1,300 older adults with serious illness, who visited one of nineteen EDs across six states. Preliminary analyses yielded no difference between groups in terms of quality of life, symptom burden, loneliness, or healthcare utilization in those randomized to nurse-led telephonic case management versus specialty, outpatient palliative care. The implication is that palliative care nurse telephonic case management may be a high-quality strategy to meet the palliative care needs of ED patients with serious illness, while extending the capacity of outpatient palliative care providers.

3. Does inpatient palliative care improve outcomes for patients undergoing stem cell transplant?

Tom LeBlanc, Areej El Jawarhi, and colleagues randomly assigned 360 hospitalized stem cell transplant patients to usual care versus inpatient palliative care consultation at three major academic cancer centers. In this population, integrated specialist palliative care markedly improved patient experiences of illness at the two-week mark in terms of quality of life, symptom burden, fatigue, depression, and PTSD symptoms as compared to patients receiving usual care. PTSD benefits were sustained to the six-month follow-up point for patients. Family caregivers experienced reduced anxiety levels. The implication is that concurrent inpatient palliative care consultation should be the standard of care for patients undergoing stem cell transplant.

What is striking about these studies is not only their focus on testing feasible interventions to improve real-world patient care challenges but also their multi-center designs, large study samples adequately powered to answer the questions, and use of randomization. These investigators come from the worlds of critical care, oncology-hematology, and emergency medicine and are choosing to focus their research on palliative care access and quality. The quality of these studies makes their findings convincing and directly applicable to day-to-day practice.

The next step is translating these findings into practice. These studies fuel our local advocacy and have the potential to transform “usual care” through the application of the principles of implementation science in our organizations and health systems (engaging key stakeholders, adapting to context, small tests of acceptability/feasibility, larger pilots, guideline creation, audit and feedback, and policy change, among other aspects of ‘system science’).

In March 2024, after many years of sustained advocacy by the American Cancer Society Cancer Action Network, the Patient Quality of Life Coalition, the National Coalition for Hospice and Palliative Care, and AAHPM and HPNA advocacy teams, an NIH trans-institute palliative care research funding initiative was announced. Allocating $12.5 million dollars per year for palliative care research across the lifespan, this level of sustained funding from the federal government will strengthen the legitimacy and recognition of our field, add evidence to improve our clinical practice, and drive academic commitment to research and teaching in palliative care across the country.

Given this rapid progress in research and research funding, I’m genuinely optimistic about the future of palliative care. It’s time for a celebration!

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.