Dr Chong, who founded StarPals, a palliative service for children and minors up to 19 years old, under HCA, published “A good death in the child with life shortening illness: A qualitative multiple- case study” with Catherine Walshe and Sean Hughes in Palliative Medicine December 2021. While current literature comparing dying at home or in palliative care has mixed views of individual impact, the study states, it is certain that the perceptions of a good death in adults with life-limiting illness may not apply to children. The study concluded that “the priorities of the child should become central”, caregivers learning to let go would result in “minimised overall suffering” and a supportive familial environment brings the most comfort.
On the IPS podcast, Dr Chong said that palliative care for young people who are still studying extend beyond the immediate family. He recounted times when he had to visit the school in advance of a returning student undergoing care in order to prepare the classmates and teachers on what to expect and also to inform them of the eventual final farewell that would take place.
Indeed, paediatric palliative care has improved by leaps and bounds since KK Women’s & Children’s Hospital Head of Service Associate Professor Chan Mei- Yoke published the “Paediatric Palliative Care in Singapore” chapter in the book Pediatric Palliative Care: Global Perspectives (SpringerLink, 2021) 10 years ago.
“There has been vast improvement but it can be improved further! Some physicians and families still feel that being referred to palliative care means that we are giving up on the child or that it is a failure on the part of the physicians,” said A/Prof Chan. “I see these situations very often when I was training in paediatric oncology. Paediatric palliative care is not just for end-of-life, it should be integrated into the continuum of care of children the moment they are diagnosed with life-threatening or life- limiting disease.”
Paediatric palliative care has always been difficult to broach, A/Prof Chan pointed out, because parents don’t want to face the possibility that treatment has failed and death is the only possible outcome, resulting in late referrals by physicians. “Active treatment aiming at cure (however slim) can carry on in parallel with comfort supportive palliative care,” she said.
Managing the family’s expectations is crucial as the progression of disease in children is not as predictable as for adults. Furthermore, the whole family has to be involved. “Palliative care also has to take the whole family unit into account and provide support not just for the child-patient but also the parents, siblings, grandparents and, in the Singapore context, the foreign caregivers too, who are often forgotten!” said A/Prof Chan.
Palliative care is a universal and human right. We all deserve a good death that gives us the dignity to leave well on our own terms.
Starting the Conversation
As Minister Ong pointed out, “We need to discuss the sensitive issue of deaths more openly and more honestly. This is probably the most important thing we need to do. It has to happen within families, between patients and doctors, and amongst members of our society and healthcare fraternity.”
SHC runs outreach programmes in the form of PC101 training, roadshows, library exhibitions and has both online and hard-copy resources such as the Hospice Link, to name a few. Its member organisations also run independent outreach programmes on Advance Care Planning.
Lyn Che, a pastoral care staff from St Joseph’s Home, shared, “We raise awareness through inviting the children from the Infant ad Childcare Centre and our volunteers to get to know our residents. Through conversations with residents or when residents they know pass away, the children and youths become exposed to the topic of death ad dying, and are open to learning about it.”
In particular, A/Prof Chan pointed out that there are ongoing efforts to raise the profile and need for paediatric palliative care to administrators in hospitals, the Ministry of Health and the government, “The concentration is more on the elderly than the children at the moment.”
Find the original article and more information from the Asia-Pacific ehospice edition HERE.
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