Palliative care for children with rare diseases in Australia

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Rare diseases are often overlooked when considering children in need of palliative care. This article, taken from the 2015 report for World Hospice and Palliative Care Day, looks at the challenges of providing appropriate care to a small number of patients with many different diagnoses who are spread across a vast geographical area in the state of Victoria in Australia. 

In a paper entitled ‘Paediatric Palliative Care’ from the Italian Journal of Paediatrics, Benini et al state “Particular attention must be paid to the need for palliative care ….. bearing in mind the considerable diversity of the problems involved ….. the great variety and fragmentation of the diseases in question, which are often rare and demand highly-specialised measures. Given the above considerations, it is indispensable to organise dedicated palliative care networks for this age group that can guarantee the quality and specialisation of the action needed together with a global and multi-dimensional care for the children and their families.”

Consultation-liaison model
The Victorian Paediatric Palliative Care Program (VPPCP) is an alliance between two tertiary paediatric centres (The Royal Children’s Hospital (RCH) and Monash Health), and Very Special Kids (VSK), an organisation which runs a children’s hospice and family support programme. The VPPCP is a state-wide service operating using a consultation-liaison model since November 2000. The multidisciplinary team comprised of health professionals from medical, nursing, social work and occupational therapy backgrounds, assists in the care of around 180 children with life-limiting conditions across the home, hospital and hospice settings each year. 

Close working relationships
Significant challenges have been faced in providing specialist care to a relatively small and diagnostically diverse patient population spread across a large geographic area. The VPPCP has developed close working relationships with other organisations and teams including the Developmental Medicine team at the RCH and the clinical ethics service at the Royal Children’s Hospital. They work closely together to ensure children with life-limiting forms of illnesses, including rare diseases, are recognised early and receive support around symptom management, physical care, respite and psychosocial issues. 

Prognostic uncertainty
A key area of concern is working with families to make the best possible treatment decisions for the child and to ensure they are cared for in a place where they feel safe and supported. One of the challenges is the prognostic uncertainty commonly encountered in children with rare diseases but the palliative care team is able to move in and out of the family’s life over months and even years according to what is needed. VPPCP hopes to contribute more in the future to research in order to develop a greater capacity to care for children and their families.

World Hospice and Palliative Care Day
World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world and will take place on Saturday 10 October 2015. The theme for this World Day is “Hidden Lives, Hidden Patients”. 

To find out more and to download the full report, please visit the Worldwide Hospice Palliative Care Alliance website

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