Author: Sue Boucher, Director of Communications, ICPCN
What is palliative care for children?
The World Health organization (WHO) defines palliative care for children as “the active total care of the child’s body, mind and spirit, [which] also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child’s physical, psychological, and social distress”.
The aim of children’s palliative care is to significantly improve the quality of life of a child who has been diagnosed with an illness or condition that is life threatening, such as cancer, or will limit their life, such as cystic fibrosis. Those providing palliative care to children take active measures to provide physical, emotional, social and spiritual support and care to the child and the child’s family. It is not a single intervention but an ongoing system of support that can be provided alongside active interventions and treatment aimed at cure.
Who provides children’s palliative care?
In an ideal situation, this care is provided by a team of professionals that could include paediatricians, doctors, nurses, psychologists, social workers, counsellors, physiotherapists, play therapists, music therapists, educators and any others, according to the specific and individual needs of each child and the resources available. In less resourced countries, palliative care is often provided by teams of home based care workers under the supervision of a professional nurse and with access to a doctor.
Members of this multi-disciplinary team need to undergo specific training in children’s palliative care in order to be effective in lessening any physical, social, psychological, emotional, cognitive or spiritual suffering the child and family members’ may experience.
Palliative care for children is appropriate from the time of diagnosis, even when there is hope for a cure, it continues throughout the course of the illness and, should no cure be possible, supports the child and the child’s family through death and into the bereavement period for as long as it is needed.
Where is children’s palliative care provided?
Palliative care for children can be delivered in a diversity of settings, including a hospital, an out-patient clinic, an in-patient care unit, a purpose-built children’s hospice, a community centre, or in the child’s own home. In sub-Saharan Africa, it is more usual to find palliative care provided in the patient’s own home as this is more cost effective.
How do you identify those who need palliative care?
In order to help identify children in need of palliative care, the Association for Children’s Palliative Care (now called Together for Short Lives) and the Royal College of Paediatrics and Child Health developed categories of children with life limiting and life-threatening illnesses. These categories act as a guide, but the most important factor is not identifying which category fits a child but ensuring that the child has access to palliative care.
The four categories are:
- Life-threatening conditions for which curative treatment may be feasible but could fail. E.g. cancer, irreversible organ failures of heart, liver and kidney.
- Conditions for which there may be long phases of intensive treatment aimed at prolonging life, but premature death is still possible. g. cystic fibrosis and Duchenne muscular dystrophy.
- Progressive conditions for which there is no curative treatment. E.g. Batten disease
- Conditions that are not considered progressive but are characterised by severe neurological disability, which may cause the patient to deteriorate unpredictably. E.g. Severe cerebral palsy, multiple disabilities, such as following brain or spinal cord injury.
How is children’s palliative care different from adult palliative care?
Children and young people with life-limiting or life-threatening conditions have distinctive palliative care needs, which differ significantly from those of adults. These differences include:
- Fewer children die than adults, so there is less awareness of the need for these services.
- Some rare conditions and illnesses are only found in childhood populations so specialised medical intervention is necessary.
- Children may live for many years with an illness or conditions that will ultimately shorten their lives, so palliative care services should be willing to provide long term care. In some cases patients survive into early adulthood, which means they will transition to adult based palliative care services.
- The involvement of the family is critical in children’s palliative care and embraces parents, siblings and grandparents.
- As children grow and develop, their needs and their understanding of their illness will change. Care providers must take this into account and adjust their interactions and interventions accordingly.
- Children have the right to continue their education and to play, despite their condition. Care providers must ensure that these rights are realised.
Children’s palliative care resources for sub-Saharan Africa
In 2009 the Textbook for Children’s Palliative Care in Africa was published by Oxford University Press. This text book, edited by Dr Justin Amery with contributions from a group of professionals with wide experience of caring for children with life-limiting illnesses in Africa. The book is primarily aimed at health and social care professionals but is written with sufficient depth to be used by specialists. However, the easy style of writing makes it accessible for anyone involved in the care and treatment of children with life-limiting illnesses.
This text book can be downloaded completely free of charge from the ICPCN website at: http://www.icpcn.org/textbook-for-cpc-in-africa/
To learn more about children’s palliative care, please refer to the resources below:
- The International Children’s Palliative Care Network (ICPCN) icpcn.org
Membership of this organisation is free.