Today is World Hospice and Palliative Care Day. It’s a day that aims to bring awareness to the importance and value of Palliative Care and to share support for hospices around the world.
At Hannah’s House, we provide in-home respite and care for children with life-limiting conditions, some of whom are under palliative care.
Working in the children’s palliative care space, we are committed to raising awareness of the need to ensure that people understand the important differences between Paediatric Palliative and Adult Palliative Care.
Many of us would consider ‘Palliative Care’ to reflect the time when a person is reaching the end of their life. But when it comes to children, entering palliative care does not always mean end-of-life is imminent, but often means the child has a condition for which there is no reasonable hope of cure and the journey toward end-of-life is being acknowledged.
Paediatric Palliative Care has a strong focus on quality of life for children and young people.
Adult Palliative Care is usually provided when death is imminent and the focus is on mitigating suffering, quality of life and quality of death.
Paediatric palliative care is generally delivered over a longer time frame – children can remain under a specialist palliative team for months and sometimes several years.
Paediatric Palliative supports more than just a child’s medical wellbeing. It embraces their physical, emotional, social and spiritual needs. It also involves providing support for the entire family rather than being focused on the patient.
Health professionals in paediatric palliative care spend considerable time getting to know each family individually and ensuring their preferences and needs are well understood and respected.
Palliative care is generally provided by a variety of health professionals and health care providers working together in a care team. This might be a GP, Social Worker, Hospital, Nurses, Support Workers – it’s mostly up to the family to choose what support they need and are able to access.
Some of the key differences relating to paediatric palliative care include:
- Care of the entire family
- Family has an increased decision-making role
- Life-limiting conditions in children can be extremely rare and sometimes there is no definitive diagnosis
- Care is provided across a wide range of settings and healthcare teams (e.g. hospital, therapy centres, hospice, in-home care)
- Siblings can be vulnerable, with parents often juggling care for them with providing 24-hour care to an ill child
- Longer-term support
End of life care
When it comes to children and young people, end of life care is different to palliative care. But the focus of quality of life for the whole family remains the same.
End of life care refers to when a person has entered the last few days of life. It supports those with an advanced, progressive, incurable illness to live as well as possible until they die.
It enables the needs of both the child/young person AND the family to be identified and met throughout the last phase of life and into bereavement. This includes the management of pain and symptoms, as well as the psychological, social, spiritual and practical support for the family.
Hannah’s House is an organisation that often journeys alongside our children and families over many years. Our focus is always on quality of life and helping children and their families to live their best life possible.
Our vision is centred around providing care, comfort and joy. These three aims are met in various ways. Care is centered around ensuring a child’s medical needs are looked after, comfort is met by allowing the family respite time while they are supported knowing their child is safe with our staff.
We aim to bring joy through our play program, where our play specialist offers play dates and playgroups to every child supported by Hannah’s House. These play activities provide lots of joy and fun to our kids, but also allow our families to meet each other and build a community of people who can understand and identify with each other’s life experiences.
Through funding partners like Channel 7 Telethon and the Stan Perron Charitable Foundation, we aim to provide families with access to palliative respite and end-of-life care options at no cost to the family. Having choice is a very important part of palliative care for both adults and children.
Information sourced from ‘Background Report to the Paediatric Addendum to the Palliative Care Service Development Guidelines’, prepared by Aspex Consulting for Palliative Care Australia.