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LEARN@STAR PALS: Painting with Colours of the Wind Workshop
30 January 2017

“Since Star PALS started in 2012, we have journeyed with children in a ‘dramatic’ way. But over the years, we learnt a lot from the children we cared for and felt that the legacies should be shared with others,” shared Dr Chong Poh Heng, Medical Director of HCA Hospice Care, at Star PALS’s “Painting with the Colours of the Wind” workshop.

Many asked about the curious title given to the workshop. “The song, taken from the Walt Disney movie Pocahontas, is about respecting nature, the cycle of life, and how things are born into this world and eventually die. There is also a need to live in harmony with the creatures of this world,” relates Dr Chong, as he shared his reflection on the theme for the workshop. “Just like the children who are under Star PALS’s care, there is a need to be in sync with them and to meet them where they are at, to be able to speak to them at their level.”

Most of the attendees, comprising paediatric palliative-care practitioners, were seeking to uncover the mysteries of broaching the subject about death and dying with children. Others also wanted to know how they can help parents cope better with the given situation. “We want to do no harm when speaking with children, even if there may be no further cure for them,” one of the participants shared.

Speaking about death is generally taboo, especially in Asian culture. A plug is usually placed on the conversation about death and dying even before it begins, with a “choi ah!” or “don’t say die!”

A very real challenge which most participants faced, was the difficulty in discussing about Advanced Care Planning (ACP) with parents of terminally ill children.

Dr Richard Yap, a Star PALS resident doctor and presenter for the workshop shared that it is difficult when parents do not acknowledge that their child is ill and are not open to discussing about ACP while the child is still in a stable condition. However, parents become distressed when the child encounters his or her first medical crisis.

“Many people think that children are too young to know about death and dying,” says Lily Li, Star PALS Nurse Manager and presenter. “In fact, children are very much aware about death. They are exposed in their everyday life, be it through the death of their pet, or even a family member.” The older teens, on the other hand, are more mature and at an age where they begin to explore their existential presence and the afterlife.

Lily shares with fellow healthcare professionals six tips when broaching the topic on ACP with parents and their children.

  • Establish an agreement with parents, children and caregivers early on in the relationship concerning open communication
  • Engage the child at an opportune time
  • Explore what the child already knows and wants to know about the illness
  • Explain medical information according to the child’s needs and age. Children often have many questions about what is happening and what is going to happen to them. Children may want some specific information, but not all. Asking questions such as “What would you like to know?” and “What have you been worrying about?” will allow you to address specific information needs
  • Empathise with the child’s emotional reactions with “I can see that you’ve really been worried about this”, validating their reactions with statements such as “we’ve been wondering why you’ve been upset” and clarifying the situation with “can you tell me what you’ve been thinking?” These will help you understand the child better
  • Encourage the child by reassuring him or her that you will be there to listen and to be supportive

The exchange of knowledge and experiences drew lively discussions during the case-based group discussions and role-play sessions. The participants were able to delve deeper into specific cases and explore the needs of the patients and families and how they could address their needs and concerns.


We were also privileged to have with us Ding Shan, father of one of our Star PALS patients. Ding Shan shared his struggles and the emotions he bears in journeying with his child who has a life-limiting illness.

The unscripted dialogue session between Ding Shan and Dr Chong was one that was honest and raw. “I felt emotional during the actual ACP. Hearing the dilemma the father experienced; it made me think deeper about how I should manage my own emotions as well as the parents’. The choice of response and commitment from the healthcare professional can bring great relief to the family, while ACP helps prepare the family in advance, thus allowing the family more time to make an informed and guilt-free decision,” shared Jinxia, a participant at the workshop.

Pocahontas famously said, “If you walk the footsteps of a stranger, you’ll learn things you never knew.” ACP is more than just care planning — it is walking the journey with the child and their parents in the midst of uncertainty, with patience and an open heart.