The Quest for Good Pediatric Palliative Care

16 February 2023

Originally published in the 2020-2022 Bloomberg Nursing Research Report. Read more research stories.

Professor Kimberley Widger has a lifelong vision, that any child diagnosed with a life-threatening condition, should receive optimal pediatric palliative care, in their location of choice, regardless of whether they survive or die from their condition. Her previous research has shown that not every child or family receives this kind of care, and that is concerning, particularly because of its potential impact on mental health.

“Good pediatric palliative care is family-centered, meaning it supports not only the child but the family as well,” says Widger who is also an Adjunct Scientist, and Nursing Research Associate with the Pediatric Advanced Care Team (PACT) at SickKids. “Recognizing that the family will live with the memories of their child’s illness and death for the rest of their lives is an important consideration from a mental health perspective, and something I hope to impact as a result of my research.”

Widger is currently launching an international study to identify the most important indicators of quality pediatric palliative care from the perspective of over 100 health professionals and 100 ill children and family members. The goal for Widger and her team of international researchers, will be to define from a large list, a core set of indicators that can be used across the field of pediatric palliative care research and clinical care to measure the quality of care.

“We often look at what is easy to measure as opposed to what is most important to measure,” says Widger. “In the case of palliative care, we often measure the location of death, for example, as an indicator of quality of care, but that is likely not the best indicator of care quality for children.”

While Widger notes that 70 per cent of adults are cited as wanting to die at home, the statistics for children vary significantly. What Widger thinks will likely be observed from her study is that quality of life, managing symptoms, and providing tools to address anxiety and depression in family members will be considered far more important indicators of care quality.

Widger and her team will use an online survey called a Delphi study, translated into English, French and Spanish to elicit perspectives from around the world, asking parents, children, and health care providers to rate the importance of over 100 quality indicators gathered from previous research. Those deemed critically important will be shared with study participants, who will also be asked to complete a Discrete Choice Experiment to create a ranked list of quality indicators. From this list, a core set of the 15 to 20 most important indicators will be identified for use in research and practice to assess care quality.

“The best kind of evidence to guide practice,” says Widger, “is a systematic review that combines results across many different studies, but that only works if everyone is measuring the same thing in the same way. This study will identify what should be measured.”

Widger’s future work will examine how to measure each indicator with a goal of advancing the field’s body of knowledge and research evidence to get better information about what is and is not working well in the field of pediatric palliative care.

Despite the likelihood that quality of life will be an important indicator of quality care, there is currently no good tool available to assess it in this population.

“Existing tools tend to focus on functional ability like walking to school or having trouble concentrating, but for seriously ill children they may be more concerned with feeling ‘normal’, maintaining relationships or being with people they care about,” says Widger. “That is important to take note of and include in how we measure and maximize the child’s quality of life.”

Children receiving palliative care are a challenging population to study. Obtaining the child’s perspective on the care they received is often difficult because they may be either too sick or not have the cognitive ability to answer questions.

It is challenge too on parents, who may be at their most vulnerable time, but are often willing to talk about their experiences to make things easier for other families.

Widger’s passion to make pediatric palliative care better, stems from her early career experience working with a physician who had been providing palliative care for many years. She recalls seeing that care in action, and seeing it done well, changed her perspective on what palliative care should and could be.

“Most care providers do not know what excellent pediatric palliative care is or the difference it can make for families until they have seen it. From our previous research, we know that is often true for parents as well, who may not know that better or different care to meet their needs is available,” says Widger

Her study will aim to alleviate this kind of guessing game, by actively assessing care and seeking ways to ensure patients are receiving the highest caliber of care available. This in turn will have a direct impact on supporting positive mental health outcomes for the entire family.

“To me, that is what palliative care is about, creating the best possible experience for people going through a terrible situation,” says Widger. “I hope my research will continue to have an impact on the way care is assessed and provided to ultimately have a positive impact on the rest of the life of the family, including their physical and mental health.”