Joan Marston: ICPCN Global Ambassador for Children’s Palliative Care
Sunflower Children’s Hospice, Bloemfontein
Palliative care has developed from a niche or “nice to have” element of health care, predominantly the responsibility of civil society and NGOs, to global recognition of palliative care as an integral part of health care and health systems, and part of the whole continuum of care, especially since the passing of the historic 2014 World Health Assembly Resolution 67.19 on palliative care.
While specific reference to palliative care is not included in international declarations and conventions which include the child’s right to health, that right can now be seen as including palliative care in the recognised right to the best attainable standard of health. This has been universally accepted and enshrined in international documentation from 1924 when the then League of Nations included the right to health when they adopted the Geneva Declaration on the Rights of the Child, to the most ratified convention in history, the UN Convention on the Rights of the Child (UNCRC) which was signed in 1989 , and is universally accepted as the framework for children’s rights everywhere.
So the question is no longer “Does a child have a right to palliative care?” but “What are we doing and what are government and civil society’s obligations to ensure that right is met? “ How do we take palliative care to those “hard to reach” children , those living in rural areas, in poverty, refugees and migrants?
South Africa is a signatory to the UNCRC and the WHA Resolution on palliative care, and has recently developed a National Palliative Care Policy.
In South Africa children’s rights are entrenched in the Children’s Act which promotes all rights for all children and makes specific mention of children with special needs such as disabilities and chronic illnesses. It also states children have the right to ethical, meaningful participation in critical areas of their life including decision-making.
In general we have access to essential palliative care medicines including opioids. Education and training is available from short courses to post-graduate level and there are children’s hospice and palliative care programmes available across the country. Yet still too few of the over 800 000 children who require palliative care receive it. To achieve the child’s right to palliative care we require the national policy to be implemented with sufficient funding for children; involvement of the Department of Social Development; more health professionals to be trained; much more donor funding; stronger advocacy that includes patients and families; essential palliative care medicines in paediatric formulations; and for every health centre caring for children to include palliative care as part of their services. Churches and faith groups could be major role –players and sign on to the Religions of the World Charter for Children’s Palliative Care on http://www.fondazionemaruzza.org.
PatchSA is a vital force towards attaining the child’s right to palliative care and every individual or organization that signs on as a member will move our country closer to reaching more than 800 000 children who need palliative care.