Quality of life most important goal of pediatric palliative care, parents say
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Key takeaways:
- Parents place less importance on disease modification or life extension in their children’s palliative care.
- The importance they placed on quality of life and comfort increased in follow-up surveys.
Parents of children receiving pediatric palliative care named quality of life as the most important goal of that care, according to a study published in JAMA Pediatrics.
“Many of us are physicians and clinicians who provide pediatric palliative care, as well as care for children who are living with serious illness, and we realize the importance of goals of care conversations for the children and their families,” Chris Feudtner, MD, PhD, MPH, chief of general pediatrics at The Children's Hospital of Philadelphia and professor of pediatrics, medical ethics and health policy at the University of Pennsylvania Perelman School of Medicine, told Healio.
“The conversations occur in family meetings, and in less formal ways, many, many times,” Feudtner said. “As important as they are, they have not been studied in the way that we attempted to do. We thought that we could provide useful information by looking at the importance of these goals relative to each other and how they change over time.”
Feudtner and colleagues assessed goals of care for 680 parents of 603 children with complex chronic conditions and followed up with them at 2, 6, 12, 18, and 24 months. The most prominent conditions were gastrointestinal (66.3%), neurological (57.4%) and cardiovascular (54.9%). Among the parents, 23% reported some level of financial difficulty, 51.5% reported being moderately distressed and 17.4% reported being severely distressed.
Parents filled out online questionnaires, and from their responses, the researchers were able to rank their goals for care, Feudtner said.
Initially, they found that parents commonly scored quality of life as of the highest importance, with a mean score of 31.5 (SD, 8.4), followed by seeking health (26.3 [SD, 7.5]) or comfort (22.4 [SD, 11.7]) and disease modification (10.9 [SD, 9.2]) or life extension (8.9 [SD, 9.9]), with those scores summing to 100.
In later months, the quality of life was score was higher by 0.06 (95% CI, 0.04-0.08) and the comfort score was higher by 0.3 (95% CI, 0-0.06), whereas decreases were detected in scores for life extension by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04).
Feudtner said that, because of previous work with parents in qualitative interviews, the researchers “were not surprised” by the results.
“People who have not done that kind of work in the past often make assumptions that the study says were not correct,” Feudtner said. “One of the assumptions is that palliative care is all about making sure a child feels comfortable, but our data show parents care mostly about the child having the best quality of life possible. The second major point is that they are really going to care about trying to safeguard and maintain the child's health for as long as possible.”
In an accompanying commentary, Jennifer S. Linebarger, MD, MPH, section chief of pediatric palliative care at Children’s Mercy Kansas City said “the goals of care may evolve over time for a myriad of reasons: evolving perspectives on — or understanding of — the disease, narrowing scope of uncertainty regarding the impact of the disease on [quality of life] or health, altering degrees of potential improvement, or disease modification.”
“Understanding these tipping points may help health care professionals move beyond reserving regoaling as only needed when medical treatments are not working,” Linebarger wrote.
References:
Feudtner C, et al. JAMA Pediatr. 2023;doi:10.1001/jamapediatrics.2023.1602.
Linebarger JS, et al. JAMA Pediatr. 2023;doi:10. 1001/jamapediatrics.2023.1599.
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