Despite greater focus on pediatric palliative and supportive oncology services in the United States, children with cancer may not be receiving high-quality end-of-life care.
Many children with advanced cancer report incredible pain, fatigue, and nausea near the end of life, and over 60% of children with cancer die in the hospital, despite evidence that most families prefer to be at home.
Given this degree of unrelieved suffering, “there is an urgent need to benchmark quality of [end-of-life] care for children with cancer and to engage in quality improvement initiatives,” Emily Johnston, MD, MS, and colleagues write in a recent commentary published in Cancer.
Though there are nearly 200 adult-focused end-of-life quality measures, there are only two pediatric-specific ones, and both involve pain assessment in the ICU.
“None of the existing measures address children with serious illness who are near [end of life], which is problematic,” Johnston, with the Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, and co-authors write.
In their commentary, Johnston and colleagues propose a series of quality measures for end-of-life care for children with advanced cancer, which fall into six domains:
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Interdisciplinary care: assessing financial needs and challenges as well as providing psychological support for the child and family, palliative care and/or hospice services, and bereavement services after the child’s death
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Hospital policies and programs: eliminating visiting hour, age, and number restrictions at end-of-life
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Avoidance of medically intense end-of-life care: forgoing intubation in the last 4 days of life, two or more ED visits in the last 30 days of life, and death in the intensive care unit
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Meeting patient preferences: providing end-of-life care and location of death that adheres to the child and/or family’s wishes, using home care to cut travel time and time spent in the hospital, and having a documented advance-care plan in place in the last 30 days of life
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Communication: providing anticipatory guidance to families about the dying process and making sure families feel their child’s needs are heard by the healthcare team as well as communicating directly with the child and family about the prognosis and care preferences
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Symptom management: screening and managing physical symptoms during a healthcare visit in the last 30 days of life
These quality measures should be viewed as “an important first step” in evaluating end-of-life care for children with cancer, requiring greater refinement, the authors note.
“There is a clear need for improvements in the care of dying children with cancer,” said Holly G. Prigerson, PhD, director of the Cornell Center for Research on End of Life Care, Weill Cornell Medical College in New York City, who was not involved in the commentary.
Though this article makes the case to better articulate and measure quality-of-care indicators, as with most things, “the devil is in the details,” Prigerson notes.
For example, she thinks that the symptom management metrics only scratch the surface.
“There is a huge need for more nuanced assessments of psychological symptoms and measures that distinguish them from physical symptoms as the child’s life draws to a close,” she told Medscape Medical News. “This is by no means child’s play! The field should learn from the work to date in adults, but it will need a major overhaul to make it appropriate and impactful for kids.”
Although most children with cancer do quite well, cancer is the largest cause of anticipated or predictable death in children, says Chani Traube, MD, pediatric intensivist with Weill Cornell Medicine and NewYork-Presbyterian in New York City.
Given that, “one would think that only a tiny minority would die in my ICU, intubated and ventilated, with aggressive and ongoing invasive medical therapies. But sadly, that’s not the case,” she told Medscape Medical News.
Traube says there are many reasons for this, but perhaps the most modifiable reason is lack of adequate access to high-quality end-of-life care. In addition, creating all-encompassing quality measures for end-of-life care in children is incredibly challenging.
“Death in children, besides being unusual, is very complicated, not only by the family unit but also by developmental variability,” Traube explains. “The care that should be provided to a 2-year-old is very different than the care that should be provided to a 15- or 16-year-old. Yet, they all fall into this kind of pediatric basket.”
Traube says this commentary is helpful because it calls attention to this issue and “lays out some concrete anchor points — things that people engaged in palliative care and end-of-life care in children should look at.”
Funding for this research was provided by the National Cancer Institute, St. Baldrick’s Foundation and Conquer Cancer Foundation. Johnston, Prigerson and Traube have no relevant disclosures.
Cancer. Published online August 25, 2022. Abstract
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