Culture and context in caring for the whole child
We seem to have set ourselves an impossible task. The claim of children’s palliative care is that we will care for the child ‘holistically’. If we took that literally, there would never be time to care for more than one child at a time, even if we set aside the need for us as carers to lead our own lives.
In practice, when we talk about holism we mean many different things. The idea of ‘holistic’ care is an acknowledgement that the child’s existence is complex; that it is more than the physical and includes the spiritual and psychosocial, and that the child’s illness is not separable from the child him- or herself. It expresses a commitment that in palliative care we are going to try and remember all these dimensions when it comes to caring for each individual child and family. Because if we are committed to an idea of holism, we are also committed to an idea of compassion that requires us to consider each child as though in that moment she were the only child.
But holism also represents a recognition that a child exists in, and is dependent on, a network of people that includes parents, siblings, grandparents and so on in ever-increasing circles that extend to include society as a whole. Society is people who have never met the child, but who we consider to have some role and responsibility in caring for her through their attitudes and the policies they support or enact. A society’s culture - the way it thinks about children in general and dying in general - therefore has a profound impact on the way we can care for each child and family. The more we try to consider the child’s needs multi-dimensionally, outside the traditional medical model, the more relevant culture and society become. Paradoxically, the more we expect a similar standard of care in all cultures, the more important it becomes to recognise how distinct those cultures can be.
This year we will consider the challenge of providing the same standard of care for children and their families in countries across the world, in the face of cultural contexts that can be vastly different in the way they understand medicine, dying, palliative care, ideas of family - and even the way they think of and value children themselves. The theme of the 2017 Cardiff Conference on Paediatric Palliative Care will be Worlds apart: culture and context in caring for the whole child.