When life-limiting illness moves into a child’s sphere, or when a young person faces their ownend of life, the impact can be profound. The wider burdens are not just emotional or physical, but extend to social, psychological, financial and isolation issues. These situations are some of the most challenging in palliative care.
The young person may be a patient themselves, or it may be a sibling or other child they have befriended in hospital, school or other care settings. They will look to parents, family members and other safe places in trying to cope with changes they may not fully understand. At times, this can mean they are exposed to ideas and concerns far beyond their years.
In Queensland, there are specialist palliative care services, counselling and community supports designed to help children or young people and their carers through these difficult times. PalAssist can provide support and navigation for anyone affected by paediatric palliative care on 1800 772 273.
Paediatric palliative care in Queensland
Paediatric palliative care focuses on children and young people personally facing any type of life-limiting illness and can be offered at any age. It is not limited to care at the end of life and ideallywould begin at diagnosis and continue alongside other treatment options. The primary goal is to give children the best possible quality of life and to support their extended family and carer network over the long term.
In Queensland, specialised services may include:
- Paediatric Palliative Care Service, based at the Queensland Children’s Hospital in South Brisbane. They are a state-wide service who may provide care in the home, within the Children’s or other local hospital, or in a hospice setting. They also provide Queensland-wide families a telehealth service, so they can access services without needing to travel, and a Bereavement Support Program.
- Hummingbird House, located in Chermside, is Queensland’s only dedicated children’s hospice. They provide medically supported in-house accommodation, for short breaks (respite), care planning, symptom control, crisis management, end-of-life care, and family support programs. Their services can extend into the home or other community location. Connection continues into the grief and bereavement space after death.
- Community nursing and allied health services that visit families in their own homes or see them in outpatient settings.
These services focus not only on medical and practical needs but also on play-based therapy, psychological support and helping families and friends make meaningful memories together.
Support for children and young people
It is important to talk openly with children about death in an age-appropriate way and to reassure them that their feelings are normal. Younger children can experience grief differently but still need honest information about death. They may not have the words to express their emotions or understand what is happening. Using the correct terms, like ‘died’, is important. If we instead use phrases like ‘gone to sleep’, they may become frightened of going to bed themselves later. Similarly, they may be familiar with some words, however it might mean something different to them, like when a video game character ‘dies’. It is important that children know that death cannot go away and isn’t reversible.
Adolescents and young adults may grieve differently from younger children. They may withdraw socially, act out, or appear detached. They may also have symptoms, like feeling anxious, or even appear or report they are okay, while struggling internally. Try to be available, flexible and guided by their preferences. If you are worried about them, talk to them privately, or reach out to your GP or health professional for help.
Children are also at risk of re-experiencing grief when they grow older and develop a more mature lens to understand loss through. Support tailored to their developmental stage is important. Providing reassurance, maintaining a safe place to ask questions, and accessing professional support when needed are key to helping them during this time and later. If you feel additional help may be of benefit, support is available through various sources. These services give young people safe spaces to talk about fears and feelings without judgement. Support may be found with:
- GP or other health professionals
- School counsellor, teachers or other support services
- Kids Helpline-a 24/7 phone and webchat service for ages 5 to 25
- Headspace provide mental health and wellbeing support for ages 12 to 25
- Canteen help young people facing cancer themselves or in people they love
- Cancer Hub helps families who have children under 25 and are impacted by cancer
Advance care planning
Like adults, children may or may not have wishes, preferences, hopes and needs for their own lives, end-of-life care and death. Children who are facing their own life-limiting diagnosis, may have been in the medical system for years and are well-versed with what happens in a hospital or health setting, right down to quite specific cares.
Advance care planning for children and young people is often similar to that in adults- it is about having conversations and information sharing. The additional aspect is that the parent or care giver may struggle with their own burdens, such as what a ‘good parent’ looks like, how far to pursue a treatment option or what the effect on a sibling or wider family may be. Sometimes, context can be provided by:
- Understanding what role you want your child or family to have in the overall process. Do you want to be fully involved or hand over decision making to a trusted person who knows your child and family well?
- Seeking medical advice and information about the current situation and future possibilities forthe illness’s course, potential risks and treatment options
- Asking your child age-appropriate questions around what they feel, think or want
- Considering what quality of life means for your child. What is important to them? What do they find joy in? What do they struggle with at times?
- Speaking to family and loved ones who know your child and family, including values, preferences and special needs
- Having a conversation with health professionals familiar with your situation, like social workers
Supporting children when a parent or carer is ill
When a parent or carer is facing a life-limiting condition, children often sense the changes but may struggle to express their feelings. Honest, age-appropriate conversations are important. Children need reassurance that they are not to blame, and that their feelings- perhaps sadness, anger, or confusion- are absolutely normal.
Practical ways to support children include:
- Using clear, simple language to explain what is happening
- Encouraging them to ask questions and express feelings through play, art or writing
- Keeping routines where possible, to provide stability
- Involving them in care in small, safe ways if they want to help. This may be reading to a loved one or fetching a blanket.
Raising Children Network provides parenting advice on a number of related topics and for age-specific groups. Specialist counselling can also help children process what is happening and prepare for loss. Both Cancer Hub and Canteen help young people and their impacted by cancer.
Young carers
Some children and teenagers take on practical caring responsibilities when a parent or sibling is ill, living with a mental health condition or has a disability. They may not see themselves as a carer.Young carers are people up to 25 years who care for a relative or friend. This may include tasks like helping with meals ormedications, running errands or caring for younger siblings. While many young carers take pride in their role, it can have flow-on effects to theireducation, friendships, social development and mental health. They may receive compliments around their maturity, responsible nature or caring side, or even prefer the focus to be on their loved one,therefore be reluctant to ask for help.
The Young Carers Network provides resources, scholarships and peer connections for young people in caring roles. Carers Queensland also offers programs and advocacy specifically for young carers, including the Young Carer Navigator service who help widely to lessen the daily impact of caring in a young person’s life. Recognising and supporting young carers is essential to protect their wellbeing, in both the short and longer term.
The role of families and communities
Families play the central role in supporting children and young people in palliative care situations, but they do not have to do it alone. Teachers, coaches, faith-based communities and the extended family and friend network can all contribute to providing a safe and supportive environment.
Healthcare teams are also there to help families talk about illness and prepare children for what is happening. Social workers, psychologists and pastoral care staff are a core part of the paediatric palliative care team and can assist with family conversations and provide ongoing support.
After the loss of a child
Nothing can be sufficient to prepare you fully for the loss of a young person in your life.
It can be hard to reach out, but engaging with someone specially trained in this area, can provide much needed reassurance, comfort and care. Support can also be available for others affected by the loss, like a spouse, siblings, grandparents or friends. Speak to the palliative care team about grief and bereavement services they may offer. Other options may include:
CRISIS AND EMERGENCY SUPPORTS
- If you are in an emergency situation, or your own or anyone else’s life is in danger, call 000 (Triple Zero)
- Lifeline (org.au, 13 11 14) provide 24/7 access to crisis support and suicide prevention services. You can also text or chat online.
- 13YARN (org.au, 13 9276) provide 24/7 crisis support for Aboriginal and Torres Strait Islander people
- Suicide Callback Service (org.au, 1300 659467) offer 24/7 telephone, chat and video counselling for those over 15 years at risk, or affected by, suicide
GRIEF AND BEREAVEMENT SUPPORT AND INFORMATION
- Canteen (canteen.org.au) provide various supports for young people dealing with grief and loss
- Griefline (griefline.org.au, 1300 845745) offers free telephone support, online forums, and grief and loss resources
- Beyond Blue (beyondblue.org.au,1300 224636) provides mental health support for people, including in grief and loss
- 13YARN (org.au, 13 9276) provide 24/7 support for Aboriginal and Torres Strait Islander people, including for grief, loss and Sorry Business
- Australian Centre for Grief and Bereavement (grief.org.au) provide information and resources about grief. They also offer the My Grief App
- Compassionate Friends Queensland (compassionatefriendsqld.org.au, 1300 064068) supports parents and families after the death of a child, of any age or from any cause
- Red Nose (rednose.org.au, 1300 308307)supports anyone affected by loss of a pregnancy, stillbirth, or death of a baby or child, 24-hours a day
Children and young people deserve compassion, honesty and support when facing palliative care situations, be it their own or that of a loved one. By reaching out to trusted services and supports, families can ensure that young people are not left to cope alone and that they have the tools, resources and guidance they need to navigate both the illness and the loss.
