Dr. Joanne Wolfe has spent her professional career dealing with some of the most emotionally challenging situations a clinician can face: helping children with advanced cancer. The driving force behind her research is a lesson she learned early on. It was, she says, “simply to ask the right question,” and the question she landed on was “whether the quality of care for children with advanced cancer is good enough.”
The answer that she has found through numerous studies and projects over the course of her career, thus far, is no. But, pediatric palliative care -- that is, care focused on the quality of life of children with life-threatening illnesses -- is getting better. This is due in large part to Dr. Wolfe’s lifelong efforts, which have earned her the 2013 American Cancer Society Pathfinder in Palliative Care Award.
Her latest research, which is to be published in an upcoming issue of the Journal of Clinical Oncology, sparked her idea for an innovative intervention to improve the lives of children with serious diseases, such as advanced cancer.
“There needs to be a more systematic approach to responding to child distress,” Dr. Wolfe says. By asking children directly how they feel she uncovered that, while doctors focus on fighting the cancer itself, the day-to-day experience of the child gets less attention. “So there needs to be processes in place to ensure that, concurrently, there is a focus on the quality of life of the child.”
Children Need a “Champion”
Her hypothesis, which she is testing now, is that each child needs a champion -- a clinical expert who is in charge of his or her daily experience. She is calling her solution “PediQuest Champions” because it will use the survey collection and reporting tool she invented -- PediQuest. The tool, the creation of which the American Cancer Society helped fund, asks children about their physical and emotional symptoms so that the care team can deal with any problem areas.
“This clinician -- such as a nurse practitioner -- will be the child’s champion,” Dr. Wolfe says. But the intervention will also involve family empowerment.
Dr. Wolfe believes that families need education about how to advocate for their child. She notes that an early study she did showed that families don’t just hold hope for a cure for their child, but also they hope their child doesn’t suffer. “We need to amplify that hope so clinical teams will respond sufficiently.”
She says parents need to ask that there be a high focus on the child’s physical, emotional, and spiritual well-being because a child’s day-to-day life during cancer treatment has long-lasting effects. “I want kids to emerge from cancer as children with greater strength and not undue or preventable injuries as a result of treatment.”
Dr. Wolfe currently sees a lack of knowledge as the greatest obstacle to improving palliative care for children, which is why she thinks research is so important to pushing the field forward. Those in her field, she says, “must continue to ask the right research questions.”
Editor's note: Dr. Wolfe has been a regular reviewer on the American Cancer Society Extramural Grants Palliative Care committee since 2008 and is a past American Cancer Society grant recipient. Dr. Wolfe is currently the director of pediatric palliative care at Boston Children’s Hospital and division chief of the Pediatric Palliative Care Service in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute.
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