Compassionate Care

Palliative care for children with cancer is still considered taboo, yet more U.S. children die from cancer than any other disease. Unfortunately, the transition to palliative care is often late and abrupt. Medical training does not sufficiently address pediatric palliative care; instead, emphasis is put on accurate diagnosis and treatment. As a result, medical staff often feel ill-equipped to manage end-of-life issues when they arise.

Thankfully, national initiatives have begun to focus on relief of physical, psychosocial, emotional and social suffering for children and their families at EOL. People like Cynthia Gerhardt, Ph.D., are working to improve doctor competency, specifically regarding such issues as end-of-life (EOL) care and how families are affected by such issues. A pediatric psychologist and Assistant Professor of Pediatrics at The Ohio State University and Columbus Children's Research Institute, Dr. Gerhardt has worked with a team to create a palliative care workshop to enhance training for medical fellows.

Funded by Hope Street Kids, the two-year research project was piloted at Children's Hospital in Columbus, Ohio. Feedback from participants indicated they often felt competent with communication to families, but less competent in the delivery of end-of-life care and felt they don't have a good understanding of the issues affecting these families. Evaluation by workshop attendees was very positive—most highly recommended the program and believe it would assist them in their clinical practice.

Gerhardt then recruited 32 U.S. pediatric oncology fellows to participate in a national, day-long seminar on palliative care, including topics on pain/symptom management, ethics, communication, and grief; the National Seminar on Pediatric Oncology End-of-Life Care for Hematology/Oncology Fellows took place in Washington, DC, during the Pediatric Academic Societies and the American Society of Pediatric and Hematology/Oncology Annual Meetings. Questionnaires assessed fellows' self-reported competence, beliefs and knowledge regarding palliative care and baseline, six and 12 months.

The results of the workshop were somewhat encouraging. The seminar was well-received by fellow and showed some efficacy in improving knowledge in pertinent areas of palliative care. And at 12 months, nearly two-thirds of the fellows reported that the seminar had significantly influenced their knowledge, competence and beliefs with regard to palliative care. Perceived competency to handle families' unrealistic expectations and to discuss hospice care with patients and families were the two categories in which fellows showed the greatest improvement.

The findings, however, highlighted the need for more intensive education on pediatric palliative care that is integrated into medical training. Staff discomfort with death and a lack of knowledge were the most frequently cited barriers to providing effective EOL services. In fact, the percent that admitted having a difficult time telling patients and patients' families that the patient was dying showed the greatest increase after the workshop.

This would be helpful for all disciplines, but especially those who are likely to experience the frequent death of their patients. HSK is hopeful that this pilot project will develop into a national teaching module or be utilized as an online teaching guide, which other institutions could adopt and implement for new medical staff training.

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