Reimbursement pressures, workforce strains and lagging awareness represent pain points preventing greater utilization of palliative care. These factors can weigh even heavier on access and quality of life for seriously ill children and their families in need of these services.

The road to pediatric palliative care can be filled with many barriers for patients and families across the globe, with regulatory and reimbursement challenges a common thread, along with insufficient volumes of health professionals to deliver these services.

Seriously ill children represent some of the most underserved populations nationwide in terms of quality and access to supportive health care, according to Katie Leonard, director of pediatrics at California-based Anchor Health.

“There are so many things that need to be addressed to improve quality and access to pediatric palliative and hospice care,” Leonard told Palliative Care News in an email.

Each year an estimated 2.5 million children and adolescents 19 years old and younger die worldwide from a serious health-related condition, according to a World Health Organization (WHO) report. Many of these children live in countries with limited numbers of pediatric palliative care providers, WHO reported. Moving the needle forward will take improved national regulations and strengthen care delivery systems, the organization indicated in a separate report.

In the United States, about 177,360 children have conditions that warrant palliative care on an annual basis, according to the 2015 report “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” published by the National Academies Press.

While pediatric palliative care has been gaining recognition as a much-needed service the United States, the depth of community-based serious illness care is sorely lacking, according to Leonard.

There are so many things that need to be addressed to improve quality and access to pediatric palliative and hospice care. There is a great unmet need for supportive care at home.

— Katie Leonard, director of pediatrics, Anchor Health

Ramping up serious illness care in the home is crucial to better support children and families, she said.

“There is a great unmet need for supportive care at home,” Leonard said. “Many seriously ill children do not have access to palliative or hospice care that can come to their home and provide critical symptom management, care planning and psychosocial support. There is a lack of access to home-based pediatric services, especially at end-of-life.”

Demand for care outstripping supply

Less than half (42.1%) of counties in the United States have some form of home-based palliative care programs in place, the National Hospice and Palliative Care Organization (NHPCO) reported.

Hospitals represent the largest pediatric palliative referral sources (26.3%), with specialty physicians and primary care providers making up 25.1% and 18.7%, respectively, according to NHPCO. Home health teams represented 5.5% of these referrals.

The lack of connections to home-based services represents a large gap in serious illness care access for children, according to Jonathan Cottor, CEO and founder of the National Center for Pediatric Palliative Care Homes.

“Some of the biggest needs in my lens is really from a community-based perspective,” Cottor told Palliative Care News. “Pediatric palliative care has really matured in the hospital space, but what happens when the child is not in the hospital? Having palliative care in the home and community is incredibly important to support children and their families on these serious illness journeys. The home is where hope is and where life is happening for these medically fragile kids who aren’t intensively sick. How do we care for these families without better support there?”

A main challenge in shoring up more community-based palliative resources is that understanding the scope of pediatric populations in need of these services can be much like finding the proverbial “needle in a haystack,” Cottor added. Many medically fragile children have illnesses that may not qualify them for more palliation in the home, or they have conditions that may be flying under the radar of clinicians, he stated.

Children are most commonly referred for pediatric palliative care due to cancer or genetic conditions, with each area representing 36% of those who received these services in 2020, the NHPCO data showed. Neurodegenerative, neuromuscular, cardiovascular and pulmonary diseases were also common diagnoses among pediatric palliative populations that year, at 27%, 20%, 17% and 16%, respectively, the report found.

Home-based palliative care needs vastly differ for children and families compared to adult populations, according to Dr. Kathy Hull, founder, board president and pediatric psychologist at George Mark Children’s House in California.

For instance, respite care services need to cover a wider breadth of caregivers beyond just parents and guardians to include other family members such as siblings, aunts, uncles and grandparents, Hull stated.

Families of pediatric palliative patients are often at more active stages in life than older seriously ill adults, with much more “ground to cover” as far as other responsibilities and activities occurring alongside chronic illness management, Hull said.

“The biggest unmet need is respite for parents, not just from being 24/7 caregivers, but also just having support they need from someone they can trust to understand their child’s condition and how to best care for them when they aren’t able to be there,” Hull told Palliative Care News. “Even when families are eligible for nursing or home care support, they still wrestle with availability of these resources – particularly when it comes to respite care.”

The biggest unmet need is respite for parents, not just from being 24/7 caregivers, but also just having support they need from someone they can trust to understand their child’s condition and how to best care for them when they aren’t able to be there.

— Dr. Kathy Hull, founder, George Mark Children’s House

Caring for a seriously ill child can place financial, practical and emotional stresses on families, with caregivers often lacking supportive resources, according to Maria Graminski, pediatric palliative care social worker at Monmouth Medical Center, part of the New-Jersey based RWJBarnabas Health system.

Deeper integrations of pediatric palliative care in the home can help alleviate some of these caregiver strains, she said.

“There are these families caring for a child with serious illness where it’s so stressful that they really are lacking a lot of support that they could use and the resources they just don’t have,” Graminski told Palliative Care News. “That’s where, when they were involved with the palliative care program, they get that extra layer of support, and some extra resources tacked on to that.”

Staffing barriers

Not enough interdisciplinary health care professionals are trained to understand and deliver pediatric palliative care, leaving chronically ill youths with a lagging workforce to support them in their health care journeys.

A main barrier is that clinicians, social workers and spiritual care professionals often receive little to no exposure to palliative care in the course of their training and education. Even fewer are trained in pediatric palliative care.

This can challenge pediatric health care professionals in their ability to recognize when palliation may be beneficial, according to Susan Dulczak, director of Valerie Fund Children’s Center at Monmouth Medical Center and the RWJ Health’s Pediatric Day Stay and Pediatric Palliative Care. The lack of palliative education can also have negative impacts on providers’ ability to conduct disease trajectory and goals-of-care discussions with parents and family members, she said.

“There’s a real lack of understanding of palliative care versus hospice,” Dulczak told Palliative Care News. “And patients suffer, because that’s a real lack of referrals to palliative care early enough in their diagnosis. The lack of referrals leads to interfering in the quality of life as the patient and family would define it. So patients really suffer with pain and symptom management.”

High turnover rates represent another main barrier to growing a sustainable workforce. Much like trends across the care continuum, physicians have left the pediatric field in rising numbers, with rippling effects of clinical capacity strains.

About 7,330 pediatric physicians left the field in 2021, making it among the most impacted health care areas impacted by staffing shortages, according to Definitive Healthcare data. Pediatric medicine was among the health care fields that experienced the greatest decline of clinicians that year, a roughly 26% drop among 86,791 professionals in areas such as internal and family medicine, as well as psychiatry and emergency care, the report found.

Increasing access to pediatric palliative care will take significant investment in workforce development, according to Dulczak. RWJ Health system has developed a program that centers on primary palliative care education, training and mentoring.

The mentorship element is among the important factors in not just teaching, but sustaining future generations of pediatric palliative professionals, Dulczak indicated. Retaining and growing this workforce takes recognition and support of their mental health needs alongside communication skill building, she said.

“We’re now in our third cohort [of trainees], and it’s an incredible opportunity for us to meet with an interdisciplinary team that wants to be part of the curriculum,” she said. “It’s securing sustainability, because you can teach and teach, but it’s about what you put into place to make sure the program is really working with clinicians to try to train them at the bedside. That’s a lot of people who will touch families and hopefully make a bigger difference.”

Payment, policy and systematic issues in pediatric palliative care models

An “interconnectivity” exists around lagging awareness, workforce development and reimbursement issues in the pediatric palliative care space, according to Dr. Debra Lotstein, chief of the division of comfort and palliative care at the Children’s Hospital Los Angeles. She is also on the committee for Children’s Hospice & Palliative Coalition of California.

“Workforce is a number one issue. It’s also communication and messaging about pediatric palliative care and how access is driven by that,” Lotstein told Palliative Care News. “Even in reimbursement, there’s a common misunderstanding and confusion about what is paid for in pediatric palliative versus adults. And privately versus publicly insured children can have different routes of what they agree to pay for concurrently alongside palliative.”

Workforce is a number one issue. It’s also communication and messaging about pediatric palliative care and how access is driven by that.

— Dr. Debra Lotstein, chief, division of comfort and palliative care, Children’s Hospital Los Angeles

Without more sufficient reimbursement that covers the full scope of interdisciplinary care, growing the pediatric palliative workforce will remain a challenge that hinders access, Lotstein indicated. These professionals often get paid on average less than those in the adult palliative field without the payment mechanisms in place to support them, she said.

A top challenge for providers is the different payment structures across private insurance providers and state-funded programs, according to Lotstein. Many home-based palliative care programs are limited to funding from state policies or through philanthropic donations. Every state enacts different legislation and payment rules, meaning that pediatric palliative providers experience inconsistencies around who is eligible to receive their services, she stated.

“Who is eligible to benefit the most from this limited resource is not always clear, especially in pediatrics versus adults. That prognostic difference is very hard,” Lotstein said. “I think the pediatric palliative workforce needs more of a business case compared to the adult side. The reimbursement is lacking and worse for children. It’s also the nature of the illnesses where kids might live longer and have less predictable outcomes than adults. It might be less profitable and more labor intensive to cover, but it’s a challenge that needs the incentive to address.”

The nation’s health care reimbursement system is largely designed for adult care and less geared towards supportive structures for children, according to Cottor.

Policymakers and legislators need to meet “in the middle” to better understand what quality serious illness care means in youth populations, he said.

“The U.S. health care system needs to really try to recognize the importance of developing a pediatric palliative care model,” Cottor said. “Oftentimes, what policymakers and legislators try to do is crowbar an existing adult structure around something for children. But they are very different populations. Even basic illnesses and rare diseases in children can be much more difficult to diagnose, and prognostic terms around how long that child will live get more difficult to predict than in an adult. The payment system needs to reflect that.”

Oftentimes, what policymakers and legislators try to do is crowbar an existing adult structure around something for children. But they are very different populations … The payment system needs to reflect that.

— Jonathan Cottor, CEO and founder, National Center for Pediatric Palliative Care Homes

A barrier in pediatric palliative care reimbursement is the various courses these models can take in both private payment and government-funded realms, according to Dr. Michael Barnett, hospice and palliative physician at the North Carolina-based hospice and palliative care provider Four Seasons. He is also a fellow of the American Academy of Hospice & Palliative Medicine (AAHPM).

Children with complex chronic illnesses have much different disease trajectories, as well as goals of care, that are often under-funded or not supported by existing reimbursement structures, Barnett stated.

“Kids with complex illnesses have much different outlooks over the course of their illnesses medically and otherwise than adults,” Barnett told Palliative Care News. “That journey doesn’t magically start at six months, like hospice can, and palliative care sometimes does not allow concurrent care to fit into that with how certain states pay for it, or even private insurers. It’s a whole other world in itself in pediatrics for these providers, kids and families to navigate cost. Every decision in their care is a big deal in how they can pay for the child’s needs.”

A “great need” exists for policy and legislative changes that better define pediatric palliative care, as well as offer more concurrent care alongside it, according to Leonard.

The ability to offer curative care simultaneously with serious illness support can make or break a family’s decision to utilize pediatric palliative services, she stated. Reimbursement and regulation shifts can remove that difficult decision and improve quality among patients and families, Leonard stated.

“There needs to be a unified definition of concurrent care as well as expansion to all children under any insurance. That would be a good first step,” Leonard said. “We need to see more definition around concurrent care and what it includes. It is a very vague requirement that leaves each state, insurance, and provider to work out what constitutes concurrent care, what things are covered by each party, and how to coordinate the complex needs of these fragile patients. This also leaves all non-government insurances to decide whether or not to cover concurrent care.”