Pediatric Palliative Care
Overview
Palliative Care is a comprehensive supportive care addressing the SUFFERING, pain, discomfort, symptoms and stress of cancer and any serious life-threatening disease. It is a key part of care for our children living with cancer and is an important source of support for their families. It is not “Giving-Up”. It is offered in tandem with cancer treatment first day of diagnosis and is not offered only when no treatment is possible. It aims to improving the Quality of life.
Program objectives
The Pediatric Palliative Care Program at CCHE seeks to improve the quality of life of the children with cancer and the entire family through its supportive services. It aims to alleviate the “Suffering” of the children with cancer and their families. Palliative care gives holistic care and comfort throughout the whole course of the child’s illness with cancer. Palliative care serves the physical, emotional, social and spiritual needs of children living with cancer and their families.
Palliative and Hospice Care services include: pain and symptom management; nursing care; psychological support; social services and spiritual care; sibling support; respite care; complementary therapies such as music, art, aroma therapy etc..; and bereavement care if needed. Services can be provided at the hospital and/or home.
Development of Pediatric Palliative Care in Egypt
In December 2010, The Children’s Cancer Hospital –Egypt 57357 (C.C.H.E.) launched the first Pediatric Palliative Care Program (P.P.C.) in the East Mediterranean Region. The aim of this P.P.C. is to alleviate the “SUFFERING” of the Children with Non-Curable Cancer and their families.
This palliative care program offers a holistic supportive care for the children and their families when the child receives palliative chemotherapy and/or radiation therapy. It responds and finds solutions to their physical, psychological, social and spiritual issues and needs. It covers also the end-of-life phase, the dying process, death and extends as long as needed to cover the bereavement phase and prevent complicated grief.
Pediatric Palliative Care services are offered daily through the Emergency Room, Outpatient Clinic, In-patient Units, home-visits and on the phone for those who live outside the big city of Cairo.
The Pediatric Palliative Care team is multi-disciplinary. It is composed of a pediatrician highly trained and specialized in Palliative Care and Pain Relief and an oncologist, helped by three nurses, two Social Workers and one Psychologist. There is also an on–call team of chaplains and two psychiatrists and some volunteers for Respite-Care. All the team members receive regularly continuous training in Palliative and End-of-Life Care.
Palliative Care Home Visits
Palliative Care Home Visits is a service of the palliative care unit that was organized in 2016. The goal is to provide nursing, social and psychological support to patients that are unable to visit the hospital or do not need to visit the hospital but need some type of care that can be given in the home. The visit is done by the palliative care team composed of a nurse, a social worker, and a therapist as needed.
During these visits, the team determines who needs care in the home and how frequent the patient will be visited. Details of the provided care are recorded in the patient’s hospital chart just as it would be if the patient were in the hospital or visiting a hospital clinic, enabling a comprehensive record of the patient’s medical history.
Home visits are organized geographically covering the area of great Cairo. The visits are provided as long and as frequent as the patient needs them. The focus is on comprehensive care that encompasses medical, nursing, social and psychological needs. It is a regular service.
The Palliative team consists of two nurses, a social worker and a consultant responsible for the case who follows up over the phone.
A psychologist and a religious man will stay according to the needs of the patient’s condition.
End of life care
It is offered for those who are Off-Therapy those patients who are receiving treatment aiming at alleviating symptoms but non-curative, and it is a part of Palliative care.
Education and Training
Our program offers training to the nurses, nurse-aids, psychologists, social workers from Egypt, and Iraq. It trains also residents and oncology fellows from the CCHE and Harvard Dana-Farber Program, the National Cancer Institute of Cairo University and some African nations.
We hope to cover all cancer children from the first day of diagnosis and not only those that receive palliative chemo or radiation.
We look forward to have a residency-training program for young doctors, nurses, psychologists and social workers. We also hope to train local mobile teams to provide “in-situ local ambulatory care”, serving in the remote areas and villages of Egypt 24h/7, as well as having a Hospice facility or more to offer Comfort Care, a Peaceful and Dignified Death to those at the End-of Life Phase.