Parents’ Goals for Pediatric Palliative Care Change Over Time

Parents of children in palliative care placed the highest value on the child’s quality of life (QoL), but with considerable individual-level variation and substantial change over time, researchers found.

In a cohort study of 680 parents of 603 patients, QoL garnered the highest mean importance score among the five goals of care (GOCs) assessed at initiation of care — 31.5 points on the 100-point scale, found Chris Feudtner, MD, PhD, MPH, of the Children’s Hospital of Philadelphia, and colleagues.

Next most important to parents was pursuit of health (scored at 26.3), followed by pursuit of comfort (22.4), disease modification (10.9), and life extension (8.9), the researchers reported in JAMA Pediatrics.

“Parents often hold as important several goals of care,” Feudtner told MedPage Today. “Working with the parents to clarify their views and then, in a supportive manner, explore the tradeoffs between pursuing one goal versus pursuing another goal, and helping them to make thoughtful and loving decisions, is what decision-support is all about.”

He added that “these conversations need to be revisited, as parents’ views about the importance of different goals of care change over time.”

Findings in the study remained similar after adjustment for patient demographics and number of complex chronic conditions.

There’s broad consensus that GOCs are important, but there’s a lot unknown about how these are made and prioritized, Feudtner and colleagues wrote: “Most of what we do know is based on qualitative analysis of one-time interviews of parents of children or clinicians who care for children or adults receiving palliative care and medical record reviews … What is notably missing from the literature is information about how different GOCs relate to each other and how stable these GOCs are over time.”

In the study, as the duration of enrollment in pediatric palliative care increased, the importance of QoL grew (0.06 points per month, 95% CI 0.04-0.08), as did the importance of comfort (0.03 points per month, 95% CI 0.00-0.06). However, the importance score for life extension decreased by even more (0.07 points per month, 95% CI 0.04-0.09), and the score for disease modification declined (0.02 points per month, 95% CI 0.00-0.04).

Feudtner and colleagues wrote that, while trajectories presented a “pattern marked more by continuity than change,” this was at the group level rather than the individual level.

For individual participants, the likelihood over time that their GOCs would change in rank was essentially 80% over five separate time intervals at 2, 6, 12, 18, and 24 months after initiation of care. And the percentage of participants who changed their top goal during any of the intervals “hovered in the 35% to 40% range” throughout the course of the study, the researchers noted.

Parents with greater differentiation among GOCs at a point in time were less likely to change the ranking of any goal at a subsequent assessment (adjusted OR 0.78, 95% CI 0.69-0.88) or to change their top-scored goal (aOR 0.88, 95% CI 0.81-0.95), after adjusting for demographics and clinical characteristics.

To complete the study, Feudtner and colleagues utilized data collected between April 2017 and February 2022 from seven pediatric palliative care programs at children’s hospitals across the country. Participants were parents of patients ages birth to 30 years receiving palliative care services.

Most patients (83.7%) were technology dependent. All had at least one complex chronic condition diagnosis; the median number was five. The most prevalent complex chronic condition categories were gastrointestinal (66.3%), neurological (57.4%), and cardiovascular (54.9%).

Parents included in the study had a mean age of 37.7, and most were female (79.9%). Most self-identified as white (77.1%), and 12.6% self-identified as Hispanic. Nearly a quarter (23.0%) reported “quite a bit” or a “great deal” of financial difficulties.

Compared with parents of white patients, parents of Black patients scored life extension significantly higher (mean 11.9 vs 8.5, P=0.03) but gave lower importance to QoL (28.3 vs 32.2, P=0.003) and comfort (19.1 vs 23.2, P=0.02). Importance scores for each GOC varied considerably across participants, with an interquartile range span of 9.4 or more.

Additionally, the sort order of scores was consistent across 10 of 11 complex chronic condition categories, with the exception of parents of children in the neonatal category, who scored life extension as more important than disease modification.

That finding opens questions for further research, Jennifer Linebarger, MD, MPH, of Children’s Mercy Kansas City in Missouri, wrote in an editorial accompanying the study: “What about neonatal complex chronic conditions leads parents to score life extension as more important than disease modification? (Is this because they had congenital anomalies that were not seen as modifiable or prematurity that just is?)”

“Seeking answers to such cohort-level findings may help health care professionals anticipate GOC priorities for patients they are seeing,” Linebarger added. “Building off this longitudinal study, researchers could further examine how GOCs change over time within specific patient populations based on diagnosis category or on unique demographic characteristics.”

Limitations of the study included methodology that did not allow for a discursive GOCs conversation, the predominantly white study population, and potential biases from attrition over time.

After the baseline data collection, 195 patients died and 38 parents withdrew or disengaged from the study.

Importantly, choices that led parents to endorse the reported importance scores may not map to their decisions in a specific clinical situation, the researchers noted. “[W]hile these parents overall show somewhat stable patterns in their GOCs priorities, individual parents may often change their GOCs over time, particularly those who initially reported that all GOCs are equally important.”