Larry Beresford
It has often been said that children are not little adults and should not be treated as little adults when it comes to their medical care or to the roles played in that care by palliative care and hospice teams.
But what should that truism convey to members of AAHPM? How do hospice and palliative medicine (HPM) professionals ensure that children with serious, incurable, or life-threatening illnesses are managed with due consideration of their differences and distinct needs? What do adult palliative care professionals need to know—and contribute to ensuring that these children get the age-appropriate support they need for the duration of their illness?
“If you think of the kinds of buckets that describe what hospice and palliative medicine provides to patients, things from symptom management to advance care planning to goals of care and even aspects of quality of life, all of those buckets are different for pediatrics,” explained Benjamin Moresco, MD FAAP, an assistant professor at the University of Utah School of Medicine and chair of the AAHPM Pediatric Council established last year.
In the area of symptom management, some pediatric patients have genetic or progressive diseases, whose management is outside of the usual scope of adult symptom management, Dr. Moresco said. “It’s often weight-based, off label, off protocol, and unpredictable, and it can be more intensive for a child in the dying process.” Beyond that, there is much new technology for the care of very young children, newborns, even neonates, with diseases once thought to be terminal.
Defining goals of care is also challenging, according to Dr. Moresco. Most children present with blended goals, meaning both to live as long as possible and be as comfortable as possible. Many of these seriously ill children are living longer than in the past, some into adolescence and young adulthood—which may involve transitioning out of pediatrics into adult care. And those transitions can be difficult. “Our kids have high levels of medical complexity,” he said. “But their goals of care haven’t necessarily changed.”
What else is different with children? Challenges of consent, guardianship, and surrogacy for children who are too young to assent to their medical treatments mean this responsibility falls to their parents and guardians. The traumas of a serious childhood illness can also lead to broken families, and the siblings of the ill child present their own ongoing needs and concerns.
“IN THE AREA OF SYMPTOM MANAGEMENT, SOME PEDIATRIC PATIENTS HAVE GENETIC OR PROGRESSIVE DISEASES, WHOSE MANAGEMENT IS OUTSIDE OF THE USUAL SCOPE OF ADULT SYMPTOM MANAGEMENT.”
Some of the other distinctions involve the professional’s developmental expertise and knowledge of family systems, said Esther Ammon, LCSW APHSW-C, director of palliative care and family guidance services at Stanford Medicine Children’s Health in Palo Alto, CA. “As we accompany these children and their families throughout the illness course,” she explained, “their understanding of their illness may develop, their goals may evolve, the child’s ability to participate developmentally, cognitively, psychologically is going to evolve.”
Hospice care for children includes a model of concurrent care—simultaneous hospice support with medical treatment aimed at cure—that was enacted in the 2010 Affordable Care Act but was left to each state to decide how to implement. Although the option of allowing patients to receive the support of hospice while continuing to pursue other treatments can be helpful for some families, this benefit is often undercut by the requirement that the patient be diagnosed as having 6 months or less to live—which is a difficult determination to make given prognostic uncertainty.
Concurrent care is not offered with a unified approach nationally, and many states are struggling with it, said Alexis Morvant, MD, medical director of pediatric palliative care at Stanford Medicine. Dr. Morvant’s preference “would be to do away with the 6-month prognosis so that all kids with a serious illness diagnosis would have access to a concurrent care model of pediatric services in the home.”
A GROWING, RECOGNIZED ROLE
Erica Kaye, MD, pediatric palliative oncologist and director of the quality of life and palliative care research division at St. Jude Children’s Research Hospital in Memphis, TN, says the clinical practice of pediatric palliative care (PPC) is increasingly recognized in this country as essential to person-centered quality of care for children with serious illnesses.
“Over the past 5 years, we’ve seen a profound increase in awareness at leadership levels, at institutional levels, of how important it is to have palliative care for children with medical complexity.” The number of children needing palliative care is also going up, in part because many of these children are surviving longer than in the past due to advances in medical science and technology.
“There are lots of opportunities for our clinical work to be recognized, appreciated, and resourced to meet the needs. And there are opportunities for us to train the next generation of pediatric palliative care clinicians and researchers,” Dr. Kaye said. “And yet there is a lag. We have a gap in the personnel needed to do this growing body of work and in our current ability to train people.”
The Academy, as the home for clinicians involved in hospice and palliative care, also provides a home for PPC and for the clinicians who are caring for children with serious illness—as well as those who are studying and training in this specialty or advocating for these patients. PPC specialists have often served in leadership roles for the Academy, which collaborates and networks with other groups like the National Hospice and Palliative Care Organization (NHPCO), National Coalition for Hospice and Palliative Care (NCHPC), Center to Advance Palliative Care, and Hospice and Palliative Nurses Association.
These partnerships and collaborations include seating two Academy members on the pediatric division of NCHPC, a group of 14 organizations focused on hospice and palliative care. That group represents the range of professional perspectives of the PPC multidisciplinary team, broadly defined, ensuring that the pediatric voice is represented at the table, explained Devon Dabbs, director of NCHPC’s pediatric division. In February NCHPC and NHPCO hosted a convening on the issues of concurrent care across the lifespan, exploring opportunities to create more consistent care and improve access.
“AAHPM fosters communication and helps PPC clinicians, researchers, and educators to come together, including at the Annual Assembly, with time to network and review issues important to us as a community,” Dr. Kaye said. The Annual Assembly of Hospice and Palliative Care’s educational programs include a full pediatric track and abstracts. Last year the Academy launched its Pediatric Council, building on a long-standing pediatric special interest group for members, giving pediatrics a stronger voice in Academy governance.
The Pediatric Council’s chair, Dr. Moresco, attends board and strategic planning meetings. Sarah Ehrman, MD, director of inpatient palliative services at Ohio State University and a member of the Pediatric Council leadership team, said the council is working on a national needs assessment in order to compile and develop comprehensive resources for adult providers caring for pediatric patients and for adult HPM fellows seeking to enhance their pediatric training experience.
In 2022, AAHPM hosted its first ever State of the Science in Hospice and Palliative Care virtual conference, with a track for PPC, and held a second such meeting in conjunction with the March 2024 Annual Assembly.
AAHPM’s 14-member Research Committee includes PPC researchers who promote prioritization of pediatric research. The Academy aims to launch a pilot program of consultations for early-career investigators, provided by experienced mentors in palliative care research. “The Academy has done a great job in bringing the scientific community together,” said Abby Rosenberg, MD MS MA FAAP FAAHPM, director of pediatric palliative care at Boston Children’s Hospital.
WHAT’S MISSING IN RESEARCH?
Although a number of leading researchers in PPC are pushing the research agenda, more support and resources are needed, Dr. Kaye said. Currently there is no national institute or funding source specific to PPC research. As a result, researchers have to turn to disease-specific institutions, even though their projects may cut across single disease entities. Recently, the National Institute of Child Health and Human Development convened a virtual State of the Science of Pediatric Palliative Care Conference to examine the current state of knowledge in the field.
“If I, as a palliative care investigator, want to study something that includes kids with cancer and kids with heart disease and kids with serious neurologic impairment, there is no clear home within the [National Institutes of Health] for me to submit a grant,” Dr. Rosenberg said. “Our study populations are smaller, and we end up having to silo ourselves to a degree that hurts our science. That is a real gap for us.”
“ALTHOUGH A NUMBER OF LEADING RESEARCHERS IN [PEDIATRIC PALLIATIVE CARE] ARE PUSHING THE RESEARCH AGENDA, MORE SUPPORT AND RESOURCES ARE NEEDED.”
As a result, she explained, PPC compared with adult palliative care is lagging behind in building its evidence base. “In pediatrics, we have fewer investigators and far fewer senior investigators. What that translates to is a gap in the abilities of people to find mentors, and in turn, to advance the field,” she said. A rough tally from a 2024 list of 159 HPM fellowship programs showed 29 pediatric-focused fellowship positions, two internal medicine–pediatrics (med-peds) slots, and 23 pediatric tracks within adult-oriented training programs, in addition to two known fellowship programs for pediatric nurse practitioners and two for pediatric social workers.1
What’s needed in the next decade is the deliberate development of the cohort of talented young investigators making their way up in the field. “There’s a whole bunch of stuff we need to better understand and study to improve patient and family experiences,” Dr. Rosenberg said. “When we’ve done surveys, it’s clear that a lot of HPM nurses caring for peds patients felt that they lacked training, lacked skills, and weren’t comfortable with providing hospice care to children at the end of life,” Dr. Kaye said. If you are only seeing a small handful of these patients, it’s hard to stay up to date on the science or your skill set.
One pragmatic solution is to make sure the nurse who would be asked to care for a child with serious illness has access to the resources and support they need to feel that they can do the job. Children’s hospitals and academic medical centers with PPC specialists have created hub-and-spoke models to support hospice nurses regionally, Dr. Kaye said.
An example is the REACH (Regional Pediatric Education and Assistance Collaborative for Hospice Nurses) initiative, a quality improvement project developed and implemented by Taylor Aglio, MD, at St. Jude Children’s Research Hospital. It brings interested hospice clinicians together virtually each month for tele-educational sessions with case-based learning and opportunities to talk about challenges. A similar coalition, the 70-plus member Gulf States Pediatric Palliative Care Coalition, was started at Children’s Hospital New Orleans by Dr. Morvant, who recently relocated to Stanford.
“When I first moved to Louisiana after finishing my fellowship at Boston Children’s, I contacted almost every hospice in the state. I knew I needed boots on the ground in order to successfully ensure that my patients were able to get excellent care when they went back home from the hospital. So I offered my expert consulting services as part of our hospital, serving as a bridge to relationship-building,” she explained.
“IF CLINICIANS WHO PRIMARILY FOCUS ON ADULTS CONTINUE TO PERPETUATE THE IDEA THAT DELIVERING CARE TO SICK CHILDREN IS SO COMPLICATED AND NUANCED THAT THEY ABSOLUTELY DON’T KNOW HOW TO DO IT, THAT DECREASES THE NEEDED WORKFORCE AND SOMETIMES SCARES ADULT CLINICIANS AWAY FROM UTILIZING THE PALLIATIVE CARE SKILLS THEY DO POSSESS.”
“What I’ve learned over the years is that when I’ve been able to share a patient with an adult HPM colleague and really be present for them to lean on me for expertise, after the second, third, or fourth child they take care of while leaning on me for support, then they are able to stand independently and deliver excellent care.”
If clinicians who primarily focus on adults continue to perpetuate the idea that delivering care to sick children is so complicated and nuanced that they absolutely don’t know how to do it, that decreases the needed workforce and sometimes scares adult clinicians away from utilizing the palliative care skills they do possess, Dr. Morvant said. “I think the Academy needs to continue to try to rise to the occasion and optimize training opportunities and activate our adult colleagues—who need to lean in and be able to partner in this care.”
She also suggested that the connections between community programs and academic centers can be taken to the next level, with the PPC expert at the hub of the consortium taking on a formal consultation role for the spokes and even billing on an hourly basis for clinical consultations. “That consulting relationship could potentially turn into some kind of medical directorship.”
THE PLACE FOR “COMBINED CLINICIANS”
An important, if insufficiently discussed, component of PPC is the practice of clinicians trained in both adult medicine (eg, med-peds, family medicine, emergency medicine) and pediatrics, along with those who simply practice in both arenas, said Michael Barnett, MD MS FAAP FACP FAAHPM, a physician at Four Seasons, a regional hospice and palliative care provider in western North Carolina.
For more than a decade, the pediatric focus within AAHPM has included a significant involvement of combined clinicians—“doctors with training in both specialties,” Dr. Barnett said. “As we started to explore the issue a bit more, we discovered there was this whole group of providers who practiced across the age spectrum. So, the Academy created the Combined Clinicians Forum to make a home for those who care for both children and adults. And that grew into trying to define a curriculum around the essentials of pediatric palliative care for fellows in adult HPM.”
In August 2020, the group that worked on this pediatric curriculum issued a document outlining 20 pediatric objectives for adult-track HPM fellows, who may at some time be asked to care for children with complex, chronic conditions.2 “But there are so many other aspects of serious illness care that we want HPM fellowship graduates to have. It’s been a challenge for program directors to figure out how to put all of that into a 1-year fellowship,” Dr. Barnett said. These objectives may be beyond the reach of many fellowship programs, he said.
Dr. Moresco said that most adult HPM providers are likely to encounter a pediatric patient. “Right now, the most common response I hear is discomfort and a request for pediatric support, but what if you don’t have that support or they’re far away or unreachable? It’s a priority of the Pediatric Council to create one place where you could go to build your knowledge—in terms of how to care for that occasional pediatric patient in a safe and comprehensive way,” he said.
“Let’s start to pool our resources. Who’s already doing good work in this space?” Dr. Barnett suggested, adding that it is important to remember that there is only one HPM board certification exam, which includes questions about adult medicine and pediatrics. “We all take the same board exam. If you want your fellows to be prepared to do well on the boards, they need to have some of those fundamentals of pediatrics,” he said.
“I think there is a great opportunity for the PPC community to really lead and teach in this space, even as we continue to grow our subspecialty pediatric fellowships and PPC programs.” Dr. Barnett’s own background in med-peds has motivated him to do more teaching of pediatric fundamentals to adult palliative providers.
Dr. Rosenberg agrees that PPC has a lot to offer to adult practitioners. “I’d encourage adult folks to reach out to their peds colleagues and explore some of these issues and learn together. Palliative care, better than any other field, understands the value of the interprofessional approach and shared learning. How we include and integrate is our bread and butter.”
Just don’t forget that pediatrics is an important part of all that, she said. “We also have stuff to contribute and learn about, and we want to be part of the conversation.”
References
- Pediatric palliative care fellowships and pediatric tracks [list]. Compiled by A AHPM Pediatrics Special Interest Group. Updated February 20, 2024.
- American Academy of Hospice and Palliative Medicine. Pediatric Objectives for Adult-Track Hospice and Palliative Medicine Fellows. 2020. https://aahpm.org/uploads/PO_for_Adult-Track_HPM_Fellows_Sept2020.pdf. Accessed March 2024.
Larry Beresford is a medical journalist in Oakland, CA, with a strong interest in hospice and palliative care.
Those who are interested in joining in these efforts to advance PPC or working on developing resources for adult providers are invited to contact Dr. Moresco at [email protected].