All children receiving palliative care have unique needs.
This page is part of a whole section on palliative care [1].
All children receiving palliative care have unique needs. Palliative care involves some or all of the following:
Symptom management is the control of both physical and psychological effects of your child's illness. Management of symptoms often needs to be combined with attention to the psychosocial, spiritual and cultural aspects of care.
Advance care planning is a process of identifying what is really important to you and your child during their care. It includes planning, making decisions about your child’s care and, identifying what your wishes are if your child was to deteriorate or become sicker. It can be required for months or years before the end of their life. Advance care plans are often developed over time and can change depending on your child's condition. Having a trusting relationship with your child's healthcare team and shared decision making is helpful in this process.
These discussions are necessary but may be difficult for everyone involved. It may help to look at this planning from the viewpoint of your child's and your wishes at 4 possible stages:
It's important to remember that:
There is an advance care plan document for children, called Te Wa Aroha. It is available and used at Starship Children's Health and other hospitals in New Zealand to make sure there is a record of these discussions.
When talking about an advance care plan for your child, the following concepts or words may be discussed.
A decision to allow natural death does not indicate a withdrawal of care. As well as agreed interventions, your child will continue to receive:
The expression 'CPR' or 'cardio-pulmonary resuscitation' includes a number of management options, when a person's heart or breathing stops. It includes:
Where cardiopulmonary arrest or death is considered a likely possibility in a child with a known serious illness, some or all medical interventions, including CPR, may not be in the best interests of the child.
The advance care plan is the responsibility of the lead health professional and must, wherever possible, be fully discussed with:
The plan may change over time depending on circumstances but each change requires further discussion.
You may be eligible to have some relief care for a number of days each year. Usually, this is money paid to an informal carer that you choose. This is called carer support.
In some situations, your child may be eligible for in-home and/or out-of-home respite care. This may require an assessment from an external needs assessment agency (NASC) such as Taikura Trust. See the needs assessment page [3] on this website. Ask your social worker for assistance or call HealthPAC, the Ministry of Health's help line on 0800 281 222 (press 2).
If you are eligible to receive respite care and carer support, this can be important for you and your other children. It can give everyone a break, including your child with palliative care needs.
The end of life phase of your child's illness may well not have a clear beginning but ends when your child dies. In some cases, you and your child may recognise the beginning. In other cases, it may be your child's healthcare team that recognises the start of this phase.
Care at this time focuses on preparation for the care your child needs for this stage of their illness to the time of their anticipated death and immediately afterwards.
You may find the following pages on this website helpful:
Royal Australasian College of Physicians (RACP): Paediatrics and Child Health. 2008. Policy: Decision-making at the end of life in infants, children and adolescents (PDF, 165KB) [8] [Accessed 22/05/2020]
Together for short lives. UK. https://www.togetherforshortlives.org.uk/ [9] [Accessed 22/05/2020]
The content on this page has been developed and approved by the New Zealand Paediatric Palliative Care Clinical Network, Paediatric Society of New Zealand.
This page last reviewed 22 May 2020.
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Links
[1] https://www.kidshealth.org.nz/tags/palliative-care
[2] https://www.kidshealth.org.nz/sites/kidshealth/files/pdfs/Advance%20Care%20Plan.pdf
[3] https://www.kidshealth.org.nz/needs-assessment-service-coordination-nasc
[4] https://www.kidshealth.org.nz/experiencing-grief-after-your-child-has-died
[5] https://www.kidshealth.org.nz/what-do-after-child-has-died
[6] https://www.kidshealth.org.nz/helping-your-child-after-their-sister-brother-or-cousin-has-died-information-parents-or-carers
[7] https://www.kidshealth.org.nz/bereavement-reactions-age-group-how-can-we-help-them
[8] https://www.racp.edu.au/docs/default-source/advocacy-library/decision-making-at-the-end-of-life-in-infants-children-and-adolescents.pdf
[9] https://www.togetherforshortlives.org.uk/
[10] https://www.kidshealth.org.nz/node/1520?language=rar
[11] https://www.kidshealth.org.nz/node/2492?language=rar
[12] https://www.kidshealth.org.nz/node/2818?language=rar
[13] https://www.kidshealth.org.nz/node/2819?language=rar
[14] https://www.kidshealth.org.nz/node/2820?language=rar
[15] https://www.rainbowplace.co.nz/service/referrals
[16] https://www.kidshealth.org.nz/node/2351?language=rar
[17] https://www.kidshealth.org.nz/contact?from=http%3A%2F%2Fwww.kidshealth.org.nz%2Fprint%2F1604%3Flanguage%3Drar