Overcoming barriers to hospice care for children with cancer: Promoting active participation of the oncology team.

Abstract

131 Background: The concept of pediatric hospice care is a natural progression of the hospice philosophy as it has been applied to adults, although, there are unique challenges presented by children. At our institution hospice service for children are offered by the adult team. We evaluated the number of children with cancer eligible for hospice between July 2009 and May 2015 and also explored the barriers that prevented hospice enrollment and the experiences of families, and hospice staff. Methods: Retrospective Review, Programmatic Initiative. Results: Thirty-two children diagnosed with cancer died in a 6 year period. Diagnosis breakdown was: Solid tumors 17/32 (53%), brain tumors 8/32 (25%), leukemia/lymphoma 6/32 (19%), 1 rare hematology condition. Twenty-one patients (65%) were 0 – 9.99 years and 11(35%) between 10 – 19.99 years. Fifteen patients (47%) were enrolled in hospice and all died at home except one. 18/32 (56%) children died in the hospital, of those 10/18 (55%) their parents chose the hospital as the site for their children passing, 6/18 (33%) died from an unexpected acute episode that resulted in death, and 2/18 (11%) patients had an acute episode that lead to un-planned patient hospitalization. The identified barriers to establishing and delivering hospice care were: a) family unwillingness to work with the hospice team b) family desire to have the patient die in the hospital c) hospice services not available in the patient’s residential area and, d) low level of comfort in the care of young children on the part of the hospice staff. Families expressed mixed feelings regarding hospice services. Conclusions: Hospice services for children with cancer are underutilized. There are family, institutional and community barriers to hospice enrolment for children with cancer. The great majority of patients still die in the hospital. We propose to improve our regional pediatric hospice service by strengthening collaboration between pediatric oncology, palliative care and hospice to better serve children with cancer at the end of life with a programmatic initiative involving the oncology team. We aim to evaluate the impact of this initiative on families, hospice staff and the oncology team.