What is palliative care?

The term palliative means relieving or soothing. Palliative care focuses on comfort and quality of life and support for your child who is seriously ill and the family/whānau.  It is available to children with brain tumours who are working towards recovery as well as to children who are dying.

What is the goal?

Palliative care aims to provide hope and achieve the best quality of life for the child and family/whānau during stressful times. It can support what matters most to your family/whānau.

When a child is seriously ill, parents have said they most want

  • Reassurance that all that is appropriate is being done

  • Respect for parents and their decisions

  • Good pain management for their child

  • Understanding of their family’s unique needs

  • Clear and honest information

  • Reassurance that they are good parents

 From  Pamela S. Hinds, “Trying to be A Good Parent” As Defined By Interviews With parents….J Clin Oncol. 2009 Dec10;27 (35)5979-5985

Palliative care aims to:

  • Help your child to be comfortable and in the best possible condition so that they can go about doing things that are important to them, and that they enjoy (such as going to school or kindergarten)

  • Help your family/whānau with difficult decisions

  • Support you as the parents or caregivers

  • Help you to support your child around any worries or questions they might have

  • Help you to support the brothers and sisters of your child with a brain tumour

  • Provide practical help with equipment, medicine and respite care

  • Where necessary, help your family/whānau to access support in bereavement

From https://www.kidshealth.org.nz/palliative-care-children-nz-introduction

Who provides palliative care?

In Aotearoa/New Zealand there is a small specialist children’s palliative care team at Starship. They have written an information guide for families. There are also palliative care services in some other main centres that can provide advice to the local teams.

 

At home families are supported by a children's community nursing team, their GP, local paediatric team and where needed a palliative care service. Staff at the hospital are also available to provide guidance and advice. In hospital children and families have access to the support of all members of the hospital's healthcare team including doctors, nurses, social workers, chaplains and others.

 

What Does Palliative Care Involve?

The KidsHealthNZ website has detailed information on palliative care in Aotearoa.  It includes managing symptoms, psychosocial, cultural and spiritual care, advance care planning, end of life and bereavement care.