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Development of Palliative Care End-of-Life Improvement Measures

November 28, 2022

Blog: Family Connections with Pediatrics

Children with complex chronic conditions (CCC) – meaning a condition or conditions that last more than a year, involve more than one organ, and require specialists or hospitalization deserve high quality health care. The American Academy of Pediatrics calls for a palliative approach to care for CCC through their entire life course, including end-of-life.1

Palliative care is an approach that provides care for the whole person (not just the disease), preventing or treating symptoms, minimizing suffering, and providing spiritual, psychological, and social supports.

While many children receive some form of palliative care, almost one-third of families of CCC share that their child suffered greatly in the last 48 hours of life, and that they did not feel prepared for their child’s death.2,3 In this month’s Pediatrics article, “Development of Primary Palliative Care End-of-Life Quality Measures: A Modified Delphi Process”, Bogetz et al raise concerns about the quality of care being received at end-of-life for CCC and share ways to improve that care (10.1542/peds.2022-058241).

What are quality measures and how can they be used at end-of-life?

Quality measures are a way to look at how well a health care process, outcome, or structure is working and how to find ways to improve. In this case, the authors wanted to look at how well palliative care is doing  to help children at their end-of-life. Are children getting the care they need?

The authors began by looking at quality measures for adults and children with cancer, because there are no quality measures right now that look at CCC end-of-life experience. They asked a panel of families, doctors, and others in health care to review and provide input on a group of palliative care end-of-life measures in a process called “Delphi.”

What are the measures in this study?

All quality measures are important, and many are needed for CCCs, but some take a lot more time and resources to create. The authors chose measures that could be taken right out of the electronic health record (EHR), instead of having to search by hand or survey, to get a baseline of the quality of care at end-of-life for CCC as a place to start. The panel approved measures in these categories:

  • Healthcare utilization
  • For example: “Patient referred to hospice more than 5 days before death if discharged home”
  • Interprofessional services
  • For example: “Patient/family received child life support within 14 days prior to death”
  • Medical intensity
  • For example: “Patient died outside of the intensive care unit”
  • Symptom management
  • For example: “Documented pain scores less than 7 out of 10 in the last 3 days of life”
  • Communication
  • For example: “Documentation of code status more than 2 days prior to death”

The authors are sure that more quality measures are needed in the future, but they wanted to start looking at the type of end-of-life care CCC are getting now. For example, with these measures we can find out how many children have basic access to hospice. With these base measures identified, we can then find and fill gaps to help build systems and services that make sure all CCC have access to high quality end-of-life care.

How can you use this article?

  • Read it to understand more about quality measures and one way of creating them.
  • If your child is using palliative care or if you think your child may need it, take this article to your child’s doctor, and use it to start a conversation.
  • If you are a family advisor partner in your health system or elsewhere, share this article to talk about palliative care, end-of-life, and quality measures. Use it to ask if such care is offered and how it is measured. Use it to start or strengthen your collaboration with your health care team!


  1. SECTION ON HOSPICE AND PALLIATIVE MEDICINE AND COMMITTEE ON HOSPITAL CARE. Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations. Pediatrics. 2013;132(5):966-972. doi:10.1542/peds.2013-2731
  2. Marcus KL, Kao PC, Ma C, Wolfe J, DeCourcey DD. Symptoms and Suffering at End of Life for Children With Complex Chronic Conditions. J Pain Symptom Manage. 2022;63(1):88-97. doi:10.1016/j.jpainsymman.2021.07.010
  3. Bogetz JF, Revette A, Rosenberg AR, DeCourcey D. “I Could Never Prepare for Something Like the Death of My Own Child”: Parental Perspectives on Preparedness at End of Life for Children With Complex Chronic Conditions. J Pain Symptom Manage. 2020;60(6):1154-1162.e1. doi:10.1016/j.jpainsymman.2020.06.035
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