Hospis Malaysia, a charitable organisation offering community palliative care, has been instrumental in the development of paediatric palliative care in Malaysia.
In her maiden speech while abroad in 2012, the Duchess of Cambridge lent support to the development of paediatric palliative care in the country by describing how palliative care provides a lifeline to life-limited children and their families.
During this visit, she also witnessed the Minister of Health launch the National Paediatric Palliative Care Initiative with Her Royal Highness Raja Zarith Sofiah Binti Almarhum Sultan Idris Shah, as the royal patron of the initiative.
“Since then there has been an impetus by paediatricians around the country to develop and improve palliative care services for our children,” said Dr Ednin Hamzah, CEO and Medical Director of Hospis Malaysia.
“Despite policy makers being approached to prioritise paediatric palliative care in the nation’s health care services, there has been minimal progress in this area since the launch in 2012. There is no will to establish a national framework.”
Awareness for this medical subspecialty remains low amongst healthcare providers and the general public. “In Malaysia, data is scarce; we don’t know how many children there are with life-limiting illnesses that need help,” said Dr Chong Lee Ai, a palliative care doctor with a special focus on paediatrics, at Hospis Malaysia.
Nationwide, it is estimated that thousands of children are suffering from such illnesses, such as cancer, HIV/AIDs, severe cerebral palsy, neuromuscular conditions, congenital anomalies or extreme prematurity. But referrals to palliative care providers are in the low hundreds.
“Who is seeing these patients? What type of care are they receiving? What more can we do to help them?” asked Dr Chong.
To address this gap, Hospis Malaysia in collaboration with the Department of Paediatrics, University of Malaya, hosted the Malaysian premiere of the advocacy film: ‘Little Stars: Accomplishing the extraordinary in the face of serious illness’. This film aims to increase awareness of the unique needs of children’s palliative care and how lives can be transformed with proper access to palliative care.
With the support of CIMB Foundation, three paediatric patients of Hospis Malaysia and the initiative spearheaded by the Sultanah in Johor are featured in this 52-minute documentary together with its accompanying short stories.
The film aims to put children’s palliative care on the global media and public health agendas. The powerful documentary and fifteen short films celebrate how children’s lives worldwide are transformed by making the most of every moment, with the support of their loved ones and their palliative care teams.
Training is needed
In a panel discussion on the current state of children’s palliative care in the country, Dr Yap Tsiao Yi, Paediatric Oncologist at the University of Malaya, highlighted the need to introduce the teaching of palliative care at medical and nursing schools.
“We teach so much in medical schools on how to do a medical examination but little is taught at how to deal with end of life issues.
“How do you talk to someone when their child’s life expectancy is limited? In the medical profession – we are taught how to save lives. It is one intervention after another after another – where do you draw the line and stop intervening and begin conversations about what the child or family may want?”
Dr Richard Lim, Head of Palliative Care Unit at Hospital Selayang, and National Advisor on Palliative Medicine for the Ministry of Health, highlighted that the challenges faced by the Ministry in pushing the initiative further were the lack of human resources, funding and awareness.
Joan Marston, CEO of the International Children’s Palliative Care Network, commented when she watched the film: “Far too many people either do not know of the suffering of children with life-limiting illnesses, or who knowing; don’t care enough to do something to change it.
“Watching the children, families and care programmes in the Little Stars films, I have realised that it is the stories that the children and families share that will make a difference and could do so much to change indifference into action”.
Host a screening
Together with the International Children’s Palliative Care Network (ICPCN), World Hospice Palliative Care Alliance (WHPCA) and Moonshine Movies, Hospis Malaysia is inviting organisations, activists and individuals to host a screening of this documentary film – Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness or to use the short-films for public education or advocacy. To find out more, visitwww.littlestars.tv or contact Hospis Malaysia at firstname.lastname@example.org