Palliative care

Although both parents remember consideration and care from the clinicians who first introduced the concept, they also described feeling very confronted initially, because the very idea of palliative care meant the end and giving up. Amy’s family was introduced to the palliative care team at Louis’s formal diagnosis meeting, when he was 11 months old. With only adult experiences of end-of-life care to compare it to, Amy recalled not being able to look the team members in the eye. To her, they represented a sense of giving up. Rose was asked by her son’s paediatrician whether she had considered palliative care, several years before Thomas needed end-of-life care at age 23. She remembers shutting that first conversation down, due to similar negative associations with the word palliative.

Although their circumstances of care were different, both parents came to similar understandings of the potential benefits of palliative care over time. For Amy’s family, the palliative care team provided individualised specialist care to Louis over many months through both 24/7 phone support, and home visits. Amy reflected that palliative care could do with a rebrand, and that rather than being a point at which care stops, it can work as a quality-of-life enhancer. Rose reflected that for children with childhood dementia, these days she sees palliative care as a type of care, rather than a (chronological) stage that signals you are ‘at the end’.

A few weeks after Amy met Louis’s palliative care team, they discussed accessing Bear Cottage, a children’s hospice in Sydney, for additional support and respite stays. After agreeing to a first stay, which included a tearful and overwhelming first night, Amy shared that a key turning point happened the very next day, when she ventured out of their family room to discover the gentle and warm welcome from hospice staff, offers of shared meals with other children and families ‘like ours’, in a kitchen that felt more like a home than a hospital. The warmth of the welcome really shifted how the family felt about accessing the hospice. They would go on to do so many times in the coming months.

Amy offered gentle guidance for families who have not yet met a palliative care team: ‘engage as early as you can, so the team knows you and knows your child’. Amy had contrasting recollections. At their local hospital, they encountered staff who were either shocked by Louis’s condition, or who didn’t know how to care for him. At the children’s hospice, nothing staff encountered while caring for Louis seemed to surprise or faze them. The nurses at Bear Cottage also taught Louis’s family practical skills, such as how to use a suction machine, and supported them to practise these during stays. This extra layer of care for them as parents was another highlight of engaging with hospice and palliative care.

As Amy faced the challenge of allowing other staff to learn how to hold and care for her son, visits to the hospice shifted from hesitant to what became known as ‘Louis’s tune-ups.’ Amy shared ‘we would arrive with a problem, and they would support us by reviewing medications, offering care and Louis would always leave better than he arrived’. Amy had found comfort in the idea of building their life around the goal of focusing on ‘what (our) children can do, rather than what they cannot’. Over the months, the family planned many experiences and outings together. The palliative care and hospice teams were a great support for these outings, from packing feeds to helping adjust medication dosages ahead of time, so that Louis wasn’t sedated during their special time together. Through the holistic support from the teams, Amy has a unique memory of leaving a Bear Cottage stay just before Louis’s second birthday, and seeing him smile for the first time in many weeks. It’s one the family still carries with them.

Both families made a decision about where they wanted their child to be for end-of-life care. Amy’s family decided early that Louis would be at Bear Cottage and they were able to plan this care at their own pace. Rose shared that Thomas being cared for at home was a key priority for everyone in their family. This highlighted that although conversations about the death of your child can be very confronting, there is value in having them with your partner and family before you need to. It offers more time and space to think about who is most important to have present. Both Amy and Rose shared that although they initially put off conversations around end-of-life care planning, they now recognise the benefits these conversations brought. They encouraged families to consider exploring these conversations earlier than they may think they ‘need to’.

Thomas died at home at the age of 23. Rose’s palliative care nurse told her that Thomas could stay at home for a time afterwards, which Rose had not known was possible. Thomas’s carers, many of whom are from Papua New Guinea, held a vigil with him for 48 hours: staying by his side while singing and praying. The family also had time to be with him. A smoking ceremony, a traditional cultural practice, was held as he was taken from the house, and a traditional dance was performed at his funeral. Amy’s family arranged Louis’s funeral through a not-for-profit that finds venues outside the usual settings. They built it around the space theme that ran through his life. Both parents said families have more choice here than they expect, and that it is worth asking.

Amy offered reassurance for future families who might be worried that all professional services just fall away after your child dies. Support from palliative care teams continues on into bereavement — the time after a child dies — and these are relationships that Amy’s family has really valued. As an example, she shared how Bear Cottage runs events for bereaved families as well as its regular events. The family still attends, and she can speak to the hospice team whenever she wants to.

Members of the session acknowledged that the death of a child is still often considered a ‘taboo subject’. Hearing from parents who have lived through it is valuable, and may relieve fears held by families who haven’t experienced bereavement. Both Amy and Rose also offered to speak further with any other families in the Parent Knowledge Network who may want to.

Finally, we are especially grateful to both Amy and Rose for sharing some of their experiences of palliative care with the network. In particular we appreciate how the legacy of Louis’s and Thomas’s lives continues to bring care and support to other families in turn.

• Understanding Paediatric Palliative Care: A guide for parents of children with childhood dementia conditions. A resource guide from Childhood Dementia Initiative, co-designed with parents.
• What is Paediatric Palliative Care?: A 3 minute introductory video, produced by Palliative Care Australia and the Quality of Care Collaborative Australia (QuOCCA).
• What do you know now that you wish you had known before?: A 4 minute video of reflections from multiple families who have accessed paediatric palliative care.
• A Guide to Children’s Palliative Care: A detailed guide produced by Together for Short Lives in the United Kingdom.
• Specialist Paediatric Palliative Care Services: Australian State Directory: A webpage with contact details for hospital and hospice palliative care teams, plus an overview of typical roles on a palliative care team.

If reading or listening back to this session has raised questions for your family that you would like to discuss, we encourage you to reach out to us at services@childhooddementia.org

To view the parent presentation from this session, please register to become a member of the Parent Knowledge Network. Presentation recordings will be shared with members. 

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Publication date: August 2026. This written summary reflects the transcript from parent presentations.