Bereavement and end of life care issues of children with cancer and their families

Abstract

Background/Objectives: The Indus Children Cancer Hospital sees children from underprivileged homes, from the ages of 0-16 years, with 500 new cases every year from all over Pakistan and Afghanistan. Half of these cases will get treated successfully but there is a chance the some patients may die due to infection or progressive disease. Design/Methods: A bereavement support program was started in August 2014 to cater to the bereavement support required for the families of children who have died of cancer and to identify the areas of further improvement in services being offered. Fifty bereaved families were contacted, over the telephone, by the counselors fromthe department of psychosocial oncology, since it was not logistically possible to physically go to their homes. Results: The factors reported by parents, associated with end of life, were of excruciating pain that the children were in, the trauma of the parents to see their child in pain and the post traumatic stress experiences. Relying on divine will as the reason for the end of suffering through death, and relief at child’s death and end of suffering were also factors that came up. Some parents wanted there to be a way to ease the death of the child further as morphine would stop working after a while. The more supportive the families felt health professionals were, the better their coping mechanisms were during bereavement. Prior rapport with families was also essential in grief counseling. Conclusion: Condolence calls made by the counselors yielded the result that these calls were beneficial for the families as they were provided with continued support, as well as the need to make home visits as families were not ready to come to the hospital. However the counselors themselves reported distress at having to deal with the families’ distress, for which in house counseling was provided.