Palliative Care For Children in NZ - What Does It Involve?

Key points about what palliative care involves for children in NZ

All children receiving palliative care have unique needs.

• palliative care means relieving or soothing
• palliative care can be available to children with a chronic illness, or to children with a serious illness who recover, as well as to children who are dying
• palliative care and curative care is available for children and young people with all kinds of illnesses
• palliative care provides hope, and aims for the best quality of life for children and family/whanau during stressful times

What palliative care involves

This page is part of a whole section on palliative care.

All children receiving palliative care have unique needs. Palliative care involves some or all of the following:

• symptom management
• psychosocial care
• cultural care
• spiritual care
• Te Wa Aroha - advance care planning
• respite care
• end of life care
• bereavement care

Symptom management in palliative care

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

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:

• wishes during your child's life 
• plans for when your child becomes more unwell
• plans for care during an acute life-threatening event
• wishes for after your child's death

It's important to remember that:

• you don't need to complete a plan for all stages at one time
• you can review and change an individual plan at any time

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.

A copy is available for you to use - you can take a copy of this plan to discuss with your child's paediatrician.

When talking about an advance care plan for your child, the following concepts or words may be discussed.

Allow natural death

A decision to allow natural death does not indicate a withdrawal of care. As well as agreed interventions, your child will continue to receive:

• prompt assessment and management of pain and other distressing symptoms
• other comfort measures including emotional, cultural and spiritual support
• privacy and respect
• management of hydration and nutrition needs as appropriate to the circumstances
• oral care and personal hygiene

CPR

The expression 'CPR' or 'cardio-pulmonary resuscitation' includes a number of management options, when a person's heart or breathing stops. It includes:

• rescue breathing
• cardiac compression
• tracheal intubation
• electrical cardioversion
• resuscitation medication

Treatment decisions

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 parent or guardians (first priority)
• the child (at a level appropriate to the child's understanding)
• any family and whānau members appropriate, to be included in collective discussion
• ward medical, nursing and allied health professionals

The plan may change over time depending on circumstances but each change requires further discussion.

Respite care and carer support

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 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.

End of life care

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.

Bereavement care

You may find the following pages on this website helpful:

• Experiencing grief after your child has died
• What to do after a child has died
• Helping your child after their sister, brother or cousin has died: information for parents or carers
• Bereavement reactions by age group: how can we help them?