Life Tipped Upside Down – Kate’s Story

In Search of a Good Death
Program 10
Life Tipped Upside Down – Kate’s Story
Palliative care for a dying child
A PBA-FM Award-Winning program

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Interviewees
Sue Bartolini, Bear Cottage, Manly, Sydney
Associate Professor John Collins, Westmead Children’s Hospital, Sydney
Fiona Engwirda, Hummingbird House, Brisbane

Overview
Parents and health professionals caring for dying children have frequently commented that, when a child dies the proper order of things is somehow tipped upside-down: an adult parent – someone who has had chance to live much of their life, should not outlive their children. Innocence and justice seem sorely violated, and what is left behind is often an ache of emptiness, deep sadness, and an unremitting sense of powerlessness.

The grief of a dying child’s parent can be the most painful and enduring of any grief. Little wonder so much effort often goes into keeping every small and treasured memory alive.

Some parents struggle with disconcerting murmurings of guilt – arising from a deep primal sense of having ‘failed’ in protecting the vulnerable. But of course, how can one protect against disease processes that our best collective knowledge still cannot fully understand or treat? Still, such guilt can be hard for some parents to shake off.
Professionals and voluntary carers who provide end of life care to children, are themselves often drawn into a place of acute intensity of emotion, and must develop a sturdy capacity of resilience and self-care, without which, they could not continue to do their work.

Remarkably, both parents and carers usually somehow discover the strength and capacity to cope in these most difficult of circumstances. Routines and rituals can play a vital role: framing experience so it is more manageable, and focussing a concerted effort of attentive care.

Discussion Starters
1. How do parents find the strength and meaning to carry on, and to grieve in a way that permits life to continue on its way?

2. What are the particular capacities health professionals must have to work in this setting?

3. What are the ways in which they find meaning in their work, take care of themselves and preserve their own ability to continue on?

Dr John Ashfield
Project Consultant
www.aimhs.com.au

Tony Ryan
Producer/Presenter
In Search of a Good Death