The article, written by Eleanor Cummins and entitled ‘American Children Deserve a Better Death’ (published January 3, 2017) outlines the need for more and better care for the approximately 41,000 children and young adults that die each year from a variety of illnesses, ranging from congenital defects to accidents.
Cummins describes the present situation in her country as one where most paediatricians want to focus on children getting better and are not motivated to undergo the necessary training to help them die well. She also describes the situation as being exacerbated by the ‘U.S.’s death-denying medical system’ where interventions are often successful in extending lives and Americans reluctant to stopping treatments, even when these are clearly not working.
Suzanne Gwynn, a paediatric nurse who is working tirelessly to build and open Ladybug House, a children’s hospice in Washington State, explains why physicians trained to provide palliative care to adults are not a suitable replacement for those trained to work with children. She says, ‘Physically, children are smaller and more sensitive, especially to drugs. While too few painkillers can leave a kid to suffer, too many can hinder cognitive development or cause other damage. In a specialized fellowship, doctors learn how to walk this line, as well as navigate dosing for a patient too young to communicate the extent of their pain clearly.’
Gwynn goes on to describe how services for children are often more complex and comprehensive and without ‘doctors, nurses and social workers trained in the nuances of their grief, families can feel unsupported.’
Finance
Money and sustainability play a central role in the development of these services as hospice and palliative care for children can be uniquely expensive. ‘Children tend to die from more complex illnesses than adults, which require intensive management over many years,’ writes Cummins who goes on to add that the lower cost of adult care is further offset by the large number of adult palliative and hospice care patients, in comparison to children.
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