By Busi Nkosi, International Children’s Palliative Care Network (ICPCN)
Globally over 21 million babies, children and young people are living with life-limiting conditions and serious, life-threatening illnesses including HIV and AIDS. Most of these children are in the developing world, especially in sub-Saharan Africa and Asia. These vulnerable children would all benefit from palliative care to relieve their suffering and promote the best possible quality of life. While some developed countries have reasonable access to children’s hospice and palliative care services, globally less than 1% of children needing palliative care actually receive it. In South Africa an estimated 801,155 children are living with life threatening and incurable illnesses but only 4, 76% have access to palliative care services.[i]
Children are disempowered by age, their condition and by cultural norms that leave them unable to speak out and seek the care they need. Parents are often exhausted caring for their child. Some may hide their child from guilt, shame or a belief that they are at fault. An unknown number are neglected, hidden and allowed to die; and many are born in remote and rural areas with little access to basic health care let alone palliative care. Social challenges, lack of finances for transport and health care, and competing priorities for their limited funds often keep these children from palliative care. An unacceptable number of children may be seen in healthcare services but not referred for palliative care because there are no palliative care services for children, or because clinicians do not understand the potential benefits for their young patients.[ii]
“Palliative care for young children is an obligatory part of health-care services . . . [They] have the right to receive the necessary physical, social, psychosocial and spiritual care to ensure their development and promote their best possible quality of life . . . Health systems must have adequately trained professionals to assess and treat pain in children of different ages and developmental stages and ensure the availability of paediatric diagnostic procedures and palliative care medicines in paediatric formulations…”II
—UN Special Rapporteurs on Health and TortureIV
Without urgent and concerted action to make palliative care available for children, vast suffering will continue.
Governments should take the following steps:
- Develop a national palliative care strategic plan with a specific focus on the needs of children, addressing obstacles and setting benchmarks to ensure progress.
- Ensure children’s palliative care is progressively available, accessible, acceptable, and of sufficient quality for all, without discrimination, particularly supporting homebased pediatric palliative care.
- Eliminate regulatory barriers that restrict the availability of and access to essential palliative care medicines for children, especially oral morphine.
- Include pediatric formulations of essential medicines for pain treatment and palliative care in the national lists of essential medicines.
- Integrate children’s palliative care into the curriculum and training programs of medical, nursing, and other health care professionals—with training on communicating with child patients and their families, taking into consideration the child’s age, maturity, family dynamics, and clinical context.[iii]
What is palliative care?
Holistic care that addresses the physical, emotional, social and spiritual needs of the child and family. It seeks to relieve pain and suffering and to enable the child to enjoy the best quality of life. Where necessary it supports the child and family at the end of life and continues to assist the bereaved family for as long as is needed.
[i] ICPCN. Joan Marston. The Need for Children’s Palliative Care, South Africa, 2015
[ii] Report of the UN Special Rapporteur on the right to the highest attainable standard of health, Dainius Puras, A/70/213, 30 July 2015,http://ohchr.org/EN/Issues/Health/Pages/SRRightHealthIndex.aspx#, para. 52.
[iii] Open Society Foundations. Children’s Palliative Care and Human Rights. Public Health Fact Sheet. New York, 2015.