Bereaved Parental Evaluation of the Quality of a Palliative Care Program in Lebanon

Abstract

Background. Palliative care (PC) is important in Pediatric Oncology as more than 20% of children with cancer still die despite modern treatment. As a significant number of children reside in countries with limited resources; more research in PC is needed there. This study aimed at evaluating the quality of care provided to children with cancer at the Children’s Cancer Center of Lebanon (CCCL) during their last month of life as perceived by the bereaved parents. Procedure. Between 2002 and 2007, 76 children with cancer treated at CCCL succumbed to their disease. Twenty-nine of the bereaved parents were interviewed at home about the symptoms and suffering experienced by their children during the last month of life, communication with the healthcare team, quality of care delivered, and recommendations for improving care. Results. Fatigue,anorexia, and pain were the most prevalent symptoms and edema was the most distressing. The overall communication with the healthcare team and the overall quality of care delivered was rated as ‘‘very good’’ to ‘‘excellent’’ by 86.2% and 93.1% of the participants, respectively. Parents suggested improving the organization of care, the communication, and the availability of human and material resources. Conclusions. This study is the first conducted in Lebanon to evaluate the quality of pediatric palliative care (PPC). The parents’ experiences in our country were similar to those described in other countries, religions, and cultures. Significant strengths and weaknesses in the management of the dying children, from the parents’ perspective, were uncovered and recommendations for improving practice were made.