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Children and Decision Making in Palliative Care - Lecture Notes 24/1/2020

Kirsty Moreton

(Kids charity campaigning for childrens palliative care: Together for short lives)

TFSL categorise conditions:

  • 1- Life threatening for which curative treatment may be faesaible but may fail
  • 2- Conditions where premature death is inevitable
  • 3- Progressive Conditions without curative treatment options
  • 4- Irreversible but non-progressive conditions

~ 49,000 children in the UK that have conditions that may necessitate end of life decision-making

There are NICE guidelines from 2016 (updated in 2019) that focus on end of life care for infants children and young people

1.1.1 Children and young people and their parents should have a central role in decision-making. 1.1.4 When difficult decisions must be made, give children and young people their parents enough time 1.1.10 WHen deciding how to communicate with the child, focus on their views and the context in which they exist [I've paraphrased]

Why is it more difficult in kids palliative care

  • Taboo - "Kids aren't supposed to die"
  • Loss of potential life
  • Comprehension, the child may not understand it
  • Protectionist, worried about harming the child by telling them
  • Family, the parents position in the law is different, they have a greater authority than with adult patients
  • Number - It's rarer
  • Different types of conditions
  • Timescale - could be a lot longer
  • Whole family may be involved by the same illness
  • Unique Childhood Needs - Education and Play

Hannah Jones

Dx with leukaemia age 4

Cardiomyopathy as a result from chemo

Lives for another 8 years cancer free with a weak heart

At age 12, acute heart failure w/ liver and kidney involvement. Needed a heart transplant to save her life

Relatively high chance of this treatment failing, but no other options considered available.

Hannah refused the heart transplant age 12.

Hannah did agree to a pacemaker

Given 3-6months to live.

Chose to transition to palliative care. Parents supported her. Initial treating team supported this.

The hospital authorities threatened legal action against her parents at the time.

Specialist nurse collected evidence by speaking to the patient

The Law

For Children - Age 16-17 under the family law reform act, there would be a presumption of consent

Age under 16 would fall under Gillick

If not competent, best interests test

Children's Welfare

Joel Feinberg argues for the child's right to an open future - The idea that we shouldn't make a choice for someone that permenantly closes off doors for the future.

Alison Diduck talks about Romantic Developmentalism - the basis of developmentalism, that childhood is a process that we go through, that we are incomplete until we become adults. The romanticc version is an enlightenment idea of the "innocent child" that we need to protect.