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Pediatric palliative care is recommended by many organizations. Yet, there is no information available on the progress that has been made in providing this care or the gaps that still exist in provision around the world. We conducted a systematic review to address this gap in knowledge. The systematic review identified 117 peer-reviewed and non-peer reviewed resources. Based on this information, each country was assigned a level of provision; 65.6% of countries had no known activities, 18.8% had capacity building activities, 9.9% had localized provision, and 5.7% had provision that was reaching mainstream providers. Understanding the geographic distribution in the level of provision is crucial for policy makers and funders.

The purpose of this study was to examine the symptom prevalence, characteristics, and distress of children dying in hospital. Symptoms during the last week of life were obtained from the medical records. Symptoms and their characteristics during the last day of life were determined by nurse interview. Thirty children with an average age of 8.9 years were evaluated. The dominant disease process was cancer (n=18), most likely location of death intensive care (n=20), and major physiological disturbances at the time of death respiratory failure (n=9) and encephalopathy (n=9). The majority of children (90%) did not have a pre-existing Do Not Resuscitate (DNR) order and 58% of these children had this addressed for the first time in the last day of life. The mean (+/-SD) number of symptoms per patient in the last week of life was 11.1+/-5.6 and six symptoms occurred with a prevalence of 50% or more. The location of death had a significant (P<0.02) impact on the mean number of symptoms: ward (14.3+/-6.1) vs. intensive care (9.5+/-4.7). In general, symptoms in the last day of life were not associated with a high level of distress. In summary, the symptom burden of dying children is high. Symptoms were, at times, distressing but children were generally comfortable. The findings suggest the application of the palliative care paradigm and a more aggressive approach to symptom control to all areas of the hospital may prove beneficial to dying children.