The quality of end of life care can be adversely affected by ICU admission and other intensive medical treatments. The objective of this retrospective cohort study was to link population-based clinical and health services databases to determine 1) which children with cancer access specialized pediatric palliative care (SPPC) and 2) the impact of accessing SPPC on the risk of experiencing high-intensity end-of-life care such as ICU admission during the last 30 days of life.
This study uses a combination of a provincial (Ontario) childhood cancer registry and health administrative data predicting the type of care received by a combination of billing codes, diagnostic codes, and SPPC databases. Children from 2000-2012 were categorized as having received either SPPC, generalized palliative care, or nor palliative care within 30 days of death.
572 children in total received care at one of the three institutions with SPPC teams and died during the period in which SPPC databases were available. 243 (42.5%) received care from SPPC team and 166 (29%) received SPPC for at least 30 days before death. 100 (17.5%) received general palliative care, which was based on not being in SPPC database but having physician billings for palliative care. 306 patients (53.5%) had no palliative care. SPPC involvement was significantly less likely for hematologic cancers, living in low-income areas, and living farther from treatment center. Accessing SPPC more than 30 days before death was associated with five-fold decreased odds of ICU admission and other high-intensity end-of-life care, including in-hospital death, whereas general palliative care had no impact.
Children who had SPPC or general palliative care for 30 days before death were counted as having no palliative care. Data did not include family preferences or goals of care. Difficult to generalize because health care systems and cultural attitudes about end-of-life care are variable.