Most clinicians will relate to the emotional and professional responsibility that comes with caring for people – medicine is a science but one that is deeply rooted in our humanness.
For those who work exclusively in paediatrics, there are the added dimensions of innocence and vulnerability that comes with children and young people.
In the end, the pressures that all clinicians feel come from a place of wanting the best for the people in their care by offering hope and treatment.
The motivation behind the recently finalised Paediatric Palliative Care National Action Plan springs from these values.
Despite community preconceptions, hope and treatment are equally important to the practice of palliative care, especially in the context of paediatrics.
The idea of there being a paediatric specialty within palliative care challenges the picture many have in their mind, a picture where end of life has an elderly face.
Our society isn’t comfortable with the idea of children and young people dying – that will never change, but what does need to change is the understanding of and access to palliative care for them.
Recent data shows there are currently about 30,000 children and young people aged between 0 and 21 years, living with a life-limiting illness in Australia who would benefit from palliative care. When you add family and friends to the picture, the ripple effect of paediatric palliative care extends to many more thousands of people.
Palliative Care Australia adopts the World Health Organization definition of palliative care for children and their families:
- Palliative care for children is the active total care of the child’s body, mind and spirit and also involves giving support to the family.
- It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease.
- Health providers must evaluate and alleviate a child’s physical, psychological and social distress.
- Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources. It can be successfully implemented even if resources are limited.
- It can be provided in tertiary care facilities, in community health centres and even in children’s homes.
The action plan wraps itself around all aspects of this definition.
The physiological and psychological developments that are naturally a part of childhood and adolescence hugely influence the delivery of palliative care.
This expands the breadth of expertise required in the care team and is what the action plan informs.
Developed over three years as a partnership between Palliative Care Australia and Paediatric Palliative Care Australia and New Zealand, the action plan draws on extensive consumer co-design.
The families who took part did so as part of their children’s legacy, “so that our child’s death meant something.” In sharing their experiences, these families and carers see the need for us to do better and be better.
This groundbreaking document is a roadmap that guides the way children and young people with life-limiting conditions and their loved ones are supported.
Throughout a child or young person’s illness, their care needs will vary. They will potently dip in and out of palliative care and in equal measures engage with curative treatments.
The action plan strongly makes the case for a collaborative approach to that care, a practice that connects doctors, nurses, allied health, volunteers and specialist palliative care services.
The action plan has 18 recommendations including measures that deal with quality, access, information sharing, collaboration, data and research. Investment from governments and the sector is needed. However, much of what is outlined can be achieved by health professionals as part of their own clinical development.
Indeed, the bigger paediatric palliative care project that the action plan is a part of, has developed a range of tools to support care in acute, hospice and community settings – wherever the child, young person, and their loved ones choose.
The next phase of the project builds on enhancing paediatric palliative care for all who need it, wherever they are.
The action plan can be downloaded from https://paediatricpalliativecare.org.au/resource/the-paediatric-palliative-care-national-action-plan/
It was developed with funding from the Australian Government.