Live well, die gently: Allied Health supporting children in palliative care
A blog post written by Sarah Baggio, Allied Health Clinical Educator, Quality of Care Collaborative Australia
The term allied health describes many professions which complement medical and nursing care. Examples in paediatric palliative care services are art therapists, bereavement counsellors, chaplains, dietitians, music therapists, occupational therapists, pharmacists, physiotherapists, psychologists, social workers and speech pathologists. Allied health professionals are an essential part of any paediatric palliative care service striving to ensure holistic care. [1]
According to Mattie Stepanek, a child with an old soul, who died from a life-limiting neuromuscular illness, paediatric palliative care:
“[…] no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently.”
Allied health professionals can help children and their families by providing holistic, wrap-around care. They can support children in a number of ways no matter where they are, including local hospitals, private practice, community health, at school, day-care, in hospices and at home.
Allied health professionals emphasise quality of life, including physical, emotional, psychological, cognitive or social support and can play a major part along the child’s palliative care journey. One way they may do this is to review the child and family’s goals of care. What is important and meaningful can change over time and is also very individual for each child/family: what is important for one child or family, may not be for another.
Allied health professionals are skilled at supporting children to participate in “occupations” (activities) that are meaningful to them, within the limits of the child’s illness, disability, and often declining functional abilities. Some examples of where allied health have assisted with these meaningful goals include:
- facilitating a child to go camping with their family when they were no longer able to mobilise and required pressure care equipment for sleeping;
- arranging a trip to the movies for a child and his dad, (the child was wheelchair-bound and oxygen dependant);
- visiting a school for a child who was no longer able to travel in a wheelchair;
- attending an NDIS meeting to support a parent to access a plan that met their child’s needs;
- assisting parents to deal with the emotional challenges of raising a child with a life-limiting illness; and
- helping a child to develop their own sense of their condition, and in the process, helping them articulate what matters most to them.
Depending on the child’s condition, allied health professionals often support families prior to a referral to the palliative care service. Therefore, continued involvement of allied health through a palliative care service can offer a sense of continuity to the families during a distressing time.
Allied health involvement during transition to the service, exacerbation of symptoms, deterioration and, when the time comes, and at the end of life has been shown to be beneficial to children and their families. [2] Allied health professionals may also assist family members and their local communities with their grief and bereavement – and from what we know about the anticipatory grief and loss families experience well before they are bereaved, it can be important to connect with allied health early.
Some generalised benefits of allied health involvement include coordination of care, symptom management (both pharmacological and non-pharmacological), equipment, general health and wellbeing, communication and advocacy.
You can’t really talk about the allied health role, without talking about the larger team. Wherever possible, on any given day, be it in the ward environment, home visit, clinic visit or teleconference, the interdisciplinary teams works to integrate separate discipline approaches, including nursing, medical and allied health, into a single consultation with the child and family together at the one time. This means less duplication and less repetition of the child/family’s story. It also helps clinicians to step out of professional ‘silos’. All of this enables the essential ingredients of holistic care. [3] Coordination of care allows for goals and actions to be carried out by the team, not just individuals.
If you would like to find out more about allied health education workshops for professionals working in paediatric palliative care, please contact the Quality of Care Collaborative Australia project (aka QuoCCA Project) at QuoCCAClinEd@health.qld.gov.au.
For more information about Paediatric Palliative Care, please visit our website: www.quocca.com.au
Acknowledgement
Sarah would like to acknowledge the support from Madelon Scully (Occupational Therapist, NSW) and Shaun Woods (Social Worker, NSW) in writing this blog.
References
- Atkinson N, Mather M, Clark K. Building capacity: opportunities for allied health in Australian palliative care. Eur J Palliat Care. 2011;18(3):144-7.
- Wolfe J, Hinds P, Sourkes B. Textbook of interdisciplinary pediatric palliative care. Philadelphia: Saunders; 2011. 512 p.
- Children's Health Queensland Hospital and Health Service - Paediatric Palliative Care Service. A practical guide to palliative care in paediatrics. Brisbane (AU): Queensland Government; 2014. 144p.
Sarah Baggio, Allied Health Clinical Educator, Quality of Care Collaborative Australia
To find more information relating to paediatric palliative care, visit the Paediatrics page in the CareSearch website.
For information on allied health in palliative care, visit the Allied Health section. Allied health professionals new to CareSearch will find the Getting Started with CareSearch Resources helpful.