Key points to remember about palliative care

• palliative care is the care provided to children with life-limiting or life-threatening illnesses, and their families/whanau
• it focuses on comfort and quality of life and support for the child and their family/whanau

What is palliative care?

Palliative care for children and young people with life-limiting conditions focuses on comfort and quality of life for the child and support for the whole family.
The term "palliative care" is used to describe the care and support that is provided to children in the following four groups:

Children with life-threatening conditions ...
...  for which curative treatment may be possible but may fail. Palliative care may be necessary during periods when prognosis is uncertain and when treatment fails. Children who have had successful curative treatment or who are in long-term remission are not included.

Children with conditions ...
... where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal childhood activities but where death could still occur.

Children with progressive conditions ...
... without the possibility of a cure. Palliative care in these children may be for many years.

Children with conditions not usually considered progressive ...
... but which may cause weakness and make children more likely to get complications. These children may deteriorate unpredictably.   

The aim of palliative care is to achieve quality of life for your child until they die, whenever that may be, preferably in a place of your child's and family's/whanau's choosing.

What is the goal of palliative care?

The goal of those working with you, your child and family/whanau is to:

• help your child to be comfortable and in the best possible condition so that they can go about doing things that are important and fun (such as going to school or kindergarten)
• help your family/whanau 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 sick child
• provide practical help with equipment, medications and respite care
• help your family/whanau to access support in bereavement

Does having palliative care mean giving up?

Who provides palliative care?

The community team
Many families will want to spend as much time as possible at home. General practitioners, local paediatricians and paediatric homecare/community workers form an important part of the team caring for your child and are able to provide support in the community.

The hospital team
The health care professionals who may be involved in your child's care include doctors, nurses, social workers, occupational therapists, physiotherapists, mental health professionals, dieticians and others. Family meetings with key staff can be organised and can help ensure everyone is clear about the plans for your child's care. These meetings can also provide an opportunity for you to ask questions.

Where can palliative care be delivered?

Hospital
While most symptoms can be readily controlled at home, some children may need admission to hospital from time to time and some families may feel unable to care for their child at home for various reasons. Hospital staff try, wherever possible, to care for children in a private room and provide a comfortable environment for the family. Children and families have access to the support of all members of the hospital's health care team including doctors, nurses, social workers, chaplains and others.

Hospice
Palliative care can be provided in a hospice and some children and families/whanau have chosen to use their local adult hospice for part of their care.

What does palliative care involve?

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

• symptom management
• advanced care planning
• respite care
• end of life care
• bereavement care

Symptom management

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 and spiritual aspects of care.

Advance care planning

Advance care planning involves the making and planning of decisions required for your child as they advance through their illness and can be required for months or years before the end of their life. Advance decisions are often reached over time and are helped by a trusting relationship with your child's health care team and shared decision making.

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 four 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

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 a NASC (Needs Assessment and Service Co-ordination) assessment. See the needs assessment fact sheet 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 able to receive respite care and carer support, they can be important for you and your other children. They can give everyone a break, including your child with palliative needs.

End of life care

The end of life phase of your child's illness may well not have a clear cut beginning but ends when your child dies. In some cases the beginning may be recognised by you and your child. In other cases it may be your child's health care team that recognises the start of this phase.

Care at this time focuses on preparing for the end stage of your child's illness, anticipated death and immediately afterwards. This includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.

Bereavement care

• Experiencing grief after your child has died: information for parents and carers
• What to do after a child has died – information for parents and carers
• 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?

Where to go for more information and support

Starship Children's Hospital (NZ)

The Starship website provides information about the specialist palliative care team who are available to provide advice. 

Acknowledgements

The Royal Children’s Hospital (Melbourne) Kids Health Info for Parents.

• Palliative Care – An Overview
• Palliative Care – Hints for Families