Background: To add to the data regarding the quality of care given to dying children and their families.
Objective: To develop baseline of end-of-life care at a single pediatric facility to evaluate institution-wide palliative care initiative.
Design: Retrospective chart review of all known deaths during an 18-month time period.
Setting/subjects: One hundred forty-five charts of patients from a single pediatric cancer facility who died during designated time period.
Measurements: Variables included: cause and place of death; CPR/DNR status prior to death; length of end of life care prior to death; sibling counseling and bereavement counseling offered to family after death; and wishes or preferences of patient/family regarding the death experience.
Results: Results included: solid tumor patients more likely to die of progressive disease than leukemia or bone marrow transplant patients; bone marrow transplant patients 2-3 times more likely to die of cardiopulmonary or cardiovascular complications; solid tumor patients were more likely to die at home than leukemia patients; solid tumor/brain tumor patients had a median time in end of life or palliative care of 29 days compared to leukemia patients' median of 11 days; 48% of DNRs completed 11 days prior to death.
Conclusions: Relationship exists between diagnosis, cause and place of death in this population; findings replicate findings of 4 similar studies; accurate and consistent quality standards of care need to be established for this population as well as methods of documentation before reviewing/accrediting agencies impose standards that are not evidence based.