The Lancet Oncology – 1 May 2015

Little Stars – Talha Khan Burki

Lancet Oncology, The, 2015-05-01, Volume 16, Issue 5, Pages 495-495, Copyright © 2015 Elsevier Ltd
“Currently the prevailing view of ‘hospice’ as it relates to children is negative”, explains the production team behind the Little Stars project. “For many the word conjures up images of a death house—lonely, scary, full of suffering”. In partnership with the International Children’s Palliative Care Network (ICPCN), Moonshine Movies hopes to “reframe the stereotype of ‘children’s hospice and palliative care’, clearly showing that the discipline is focused on life, not death, delivering a service in the home (or a home-like environment) by a multidisciplinary team, focused on extending and enhancing life through wellness, relationships, community and love”.  The Australian-based production company will release one short film every 2 weeks, 50 in total. Nine are already available online—the project launched at last year’s Paediatric Palliative Care Congress in Rome. In April, 2015, an hour-long documentary will premiere on the Al-Jazeera Documentary Channel, and a global event is planned for later in the year, to mark Universal Children’s Day.

“Paediatric palliative care is holistic, looking at the body, mind, and spirit within the social and cultural context. It cares for the child from the time of diagnosis until death, and after death it does bereavement support for the family” explains the ICPCN’s Joan Marston in “Value Every Life”, the second film in the Little Stars series, which offers an introduction to the theme. She adds that the affordability of such care means that there is no reason for children to die in pain and suffering. “Palliative care actually values short lives”, she adds, in a clipped South African accent.

80% of the global burden of paediatric cancer is in low-income and middle-income countries. But the course of a child’s illness depends on more than just the available resources. “In some countries health-care professionals never acknowledge death in children”, notes the ICPCN. “The cultural denial of the fact that children actually die prohibits the development of children’s palliative care services”. It is a destructive taboo. “Without an open and honest approach in dealing with death and without adequate children’s palliative care options…families are often forced to make inappropriate and ill-informed decisions to attempt aggressive curative treatments”, concludes the ICPCN. Their point is lent eloquent support by Silvia Lefebvre D’Ovidio, who appears in Little Star’s short film “Matteo’s Story”. “These children live most of their time in hospital, uselessly, because they cannot be cured”, Lefebvre D’Ovidio explains. “If there is a good organisation of palliative care, these children can live with their families in their home, [with] their games, their pets—they have a completely different kind of life”.

“Marmaduke’s Story” is set in Melbourne, Australia. With remarkable fortitude, Simon Waring recounts how cancer killed his young son, Marmaduke, and his wife Millsom. Marmaduke was diagnosed with an inoperable kidney tumour when he was 15 months old. Intense chemotherapy offered a reprieve, but 10 months after the treatment ended, Marmaduke relapsed. In a dreadful twist of fate, around the same time, Millsom suffered a recurrence of her breast cancer; she died shortly before her son. Waring recalls the oblique language with which the physicians invoked the prospect of Marmaduke’s death—“they said ‘we’re going to be close to changing the conversation’”. Australia’s robust system of paediatric palliative care (outlined in “Charlie’s Story”) allowed Marmaduke to spend his last few months at home.

“We had some extraordinary days—it was a beautiful time”, says Simon. The film poignantly explores the value of well-structured palliative care. Marmaduke remained lucid and conscious—palliative care need not mean anything else, of course—and was able to remain in the heart of his family. “The only way I could get him home was with palliative care”, Simon points out. “The end of his journey, to have him at home in his bedroom with all his own colours, his own toys, his sounds, have his brothers climbing in an out of his bed—it was as normal an environment as he could possibly have”.

The films, which last a matter of minutes, span nine countries scattered across five continents. As the Little Stars project gathers momentum, there is every chance it will attract the kind of high-profile support and public awareness that can translate into action. Marmaduke’s sister Charlotte spent weeks sleeping in the same bed as him. “He knew that he was loved every second of the day—there wouldn’t be 5 mins that would go by without someone interacting with him”, she remembers. Palliative care allowed this to happen. Too many children, unlucky enough to be diagnosed with life-limiting condition, do not have the same opportunity.

For more on the Little Stars project and the films see http://www.littlestars.tv/

 

PRESS

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