Ahead of World Hospice and Palliative Care Day, Joan Marston, Chief Executive Officer of the International Children’s Palliative Care Network, explains the theme of this year’s event and why so many of the world’s children are ‘hidden’.
“Every child is my child” African proverb
Children are different – and the provision of palliative care to children is different. From the tiny newborn baby, through developing infancy and childhood and into adolescence, the child is changing in the ability to communicate, and to develop motor development, understanding and independence. Too few healthcare services are providing palliative care for the many babies, children and young people living with life-limiting conditions around the world, despite the World Health Assembly Resolution of 2014 calling on governments and UNICEF to work with civil society to provide palliative care for children.
Recent research carried out for the International Children’s Palliative Care Network (ICPCN) indicates that more than 21 million children globally would benefit from palliative care, and more than eight million of these children will need specialized services. Yet, with the development of palliative care services for children developing at a slower pace than those for adults, we are probably only reaching one per cent of these children.
So where are these children and why are they hidden? Or are they hidden? If so – where does the fault lie? And what can we do to make these children visible? We fail to see them and to meet the needs and human rights of babies, children and young people for many reasons.
Some are linked to the fact that children are dependent on adults for many years and can seldom advocate for themselves; they are often too young, too disabled and too weak.
Lucy Watts, a young woman living with Ehlers-Danlos syndrome in the UK, and a Global Youth Ambassador for the ICPCN, speaks of being seen and heard as a person, as ‘Lucy’, for the first time when she was visited by a children’s hospice service. Lucy is now a powerful voice and advocate for palliative care.
Children are disempowered by age, their condition and by cultural norms around children 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 ‘hidden’ in plain sight – 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.
We will only truly see our ‘hidden’ young patients when we have successfully advocated for sufficient trained healthcare workers, services and medicines to provide palliative care for all children; when families understand the benefits of palliative care and when children with life-limiting conditions have a voice to call us to account.
This is our moral imperative.