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Law and ethics in palliative care of children and young people

11 February 2021
Volume 30 · Issue 3

Providing palliative and end-of-life care for children and young people provides many complexities for health professionals. There are unique legal and ethical aspects of caring for children in a palliative or end-of-life setting due to the altered capacity of children dependent on their age. There is a difference between law and ethics: laws are binding and instructive of decisions and actions whereas ethics comprise principles and guidelines that inform decisions and actions in health care.

The United Nations Convention on the Rights of the Child (UNCRC) 1990 defines a child as anyone under 18 years of age. Until a child reaches 18 years of age, an adult (usually their parent—see the Children Act 1989) should have responsibility for this child and therefore the decisions about their care. However, the Mental Capacity Act 2005 states that everyone over the age of 16 has the presumption of capacity. This means that although parents (or whoever has parental responsibility) are still responsible for their children until the age of 18, children can make their own decisions on their care from the age of 16 years. Additionally, a legal precedent set in the UK in 1985 allows medical professionals to assess whether individual children under 16 years of age, have the necessary understanding to make their own medical decisions and are therefore ‘Gillick competent’ (NSPCC, 2020) (Figure 1).

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