Gauging pediatric patient preferences can come with nuanced challenges as palliative care providers contend with a lack of consistent, standardized measures for these populations.
Measurement of pediatric palliative care preferences is evolving compared to adult populations, said Dr. Toluwalasé Ajayi, director of pediatric palliative care and interim chief of palliative medicine at Rady Children’s Hospital-San Diego. Ajayi is also clinical professor at the University of California San Diego (UCSD), program co-director of the university’s Scripps’ hospice and palliative care medicine fellowship program and digital health equity lead at the Jacobs Center for Innovation.
Palliative providers need a wider, more inclusive lens to better understand pediatric-specific priorities and drive more person-centered care approaches, according to Ajayi.
“This is one of the most nuanced areas in pediatric palliative care,” Ajayi told Palliative Care News in an email. “For pediatrics, caregiver reports often substitute for direct patient input — especially in younger or developmentally-limited populations, which creates a gap in centering the child’s voice. We need developmentally-tailored, culturally sensitive tools and longitudinal data that capture evolving preferences over time.”
Knowns vs. unknowns
Various avenues exist when it comes to examining adult palliative care preferences such as patient-reported outcome measures (PROMs), Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys and advance care planning documentation.
A patient’s age and cognitive abilities become key factors in their involvement in the decision-making process, Ajayi said. Disease-specific legacy and decision-making tools exist, but these are used inconsistently, she said. Tools such as the Voicing My CHOiCESTM planning guide can help young people with serious illnesses to communicate their care preferences, but broader integration of standardized approaches is needed, according to Ajayi.
Patient-decision aids help create a framework that allows for greater understanding and communication of pediatric patient priorities, health literacy levels and ethical considerations.
Pediatric care preferences are typically identified through shared decision-making models that involve the patient, parents, guardians and health care professionals. These models can extend to involve greater insight and influence from peers, and other family and community members, said Trish Murphy, pediatric palliative care nurse practitioner and a member of the National Association of Pediatric Nurse Practitioners (NAPNAP).
A broader range of perspectives and considerations are needed when developing goal-concordant care plans for children, Murphy said.
“It’s really being able to see the complexity of care for kids, their families, extended families and communities,” Murphy told Palliative Care News. “That all comes into play in combination with chronological and developmental age and really layers of complexity of pediatrics in comparison to adults. Palliative care reaches across a huge spectrum of medical conditions and you may be caring for kids with chronological ages that don’t match their development.”
Pediatric patient priorities often focus on minimizing suffering, preserving family time, maintaining school and social identity and receiving care that reflects their values and culture, Ajayi stated.
Similar to adults, youths also typically express a desire to receive home-based care, particularly as they near the end of life, she added. Barriers curbing greater access are a lack of pediatric-trained clinical resources, workforce shortages and inconsistent hospice eligibility criteria for children with terminal illnesses.
Though home-based care may be a priority for a pediatric patient, several obstacles may prevent the ability to provide it, according to Allison Grady, pediatric oncology nurse practitioner and chair of the NAPNAP’s Pediatric Palliative Care Special Interest Group.
Family caregivers may not have sufficient support systems to help care for a seriously or terminally ill child in the home, Grady said. Parents also may not feel confident navigating medical changes or symptom and medication management. Others may not wish to have a child die in the home due to the potential for negative bereavement outcomes.
“Oftentimes pediatric [patient] goals are similar to that of adults,” Grady told Palliative Care News in an email. “They often do wish to die at home and they do not want to be a burden for their loved ones. Finding home care services who feel comfortable prescribing for and caring for children can be difficult to access. Having a child pass in the home can [also] be an ongoing reminder of what is lost and difficult for parents and siblings alike. There is no ‘right’ way or place to die — it is really what the patient and family wants. When children do want to die at home, the medical team will often try to move mountains to make that happen.”
Unwrapping the challenges
Funding models can stymy progress toward improved measures. Some for pediatric care are uniquely complex compared to those for adults, according to Ajayi. Reimbursement reform would be needed to fully realize both the cost and caregiver benefits at scale, she stated.
Studies examining adult and mixed patient populations show that home-based palliative care reduces emergency department visits, intensive care unit admissions and hospital deaths — all of which are cost-intensive, she said. Pediatric-specific cost data are limited, largely due to variation across different state-based and private insurance payment methods. Large-scale data regarding pediatric preferences are lacking, particularly across diverse racial, cultural and linguistic groups, Ajayi said.
Palliative care providers prioritize developmentally appropriate communication with pediatric patients and seek alignment between their expressed values and their caregiver’s decisions, according to Ajayi. But the wishes of parents, guardians and other family members play a large role and can contrast with patients’ goals of care, she said.
Conflicts are typically approached using shared decision-making models that integrate an ethics support expert, child life specialists and cultural mediators. A key strategy is facilitating early goals-of-care conversations, which can anchor later decisions in shared understanding, Ajayi indicated.
Miscommunication is a leading driver of conflicts during decision-making processes, Grady said. Making the “right” decision is a larger priority for parents who often seek to balance the physical, emotional and psychosocial needs of their child with the information received from medical teams, she said. They also desire for their child to live a “normal” life while weighing the needs of other family members such as siblings, Grady stated.
Involving social workers, hospital discharge planners, primary care providers and advance care planning professionals can help with ensuring greater goal-concordant care delivery, she said. Ensuring everyone is on the same page often goes a long way to resolving conflict, according to Grady.
More autonomous pediatric palliative preference measures may be taking shape, according to Murphy. Researchers are looking more closely at ways to examine priorities of adolescents, teens and young adults in particular, she stated.
“There is more literature out there on the retrospective look of parents’ experiences with [seriously ill] children and there’s a new budding area with adolescents and young adult programs,” Murphy said. “That’s where we’ll see true measurements being done from more of a research standpoint.”
Greater data have become available in the past 10 to 15 years in regard to pediatric preferences, particularly around death and dying, Grady indicated. Much of the research has predominantly focused on parental priorities as the main health care decision makers. A prominent issue is that the research is often from a qualitative perspective with less evidence-based emphasis on existing care models and outcomes, she said.
Minors are a protected patient group, which can make it challenging to record, track and measure their goals in alignment with laws intended to safeguard these populations, according to Grady. Their sometimes limited ability to clearly understand their illness trajectory and communicate their preferences also creates complications.
“Overall there is less research as compared to adults, in part because of the developmental stages of children,” Grady said. “ It is not until school age (about 7- or 9 -years-old) that the child is able to grasp the permanency of death. [This] does not mean they do not have opinions, but giving weight and meaning to preferences would be very different as compared to adults and children are a protected class when it comes to research.”
