For HCA Medical Director Dr Chong Poh Heng, it was a fortuitous encounter with a former patient, that cemented his resolve to make his foray into the field of paediatric palliative care.
B was just a baby when Dr Chong, then a General Practitioner, first met him. “His mom brought him for vaccinations soon after he was born,” Dr Chong shares. “After he completed all mandated jabs when he was two, I saw him only occasionally when he caught the common flu.”
Some years later, in the course of doing volunteer work at the paediatric palliative care unit of a hospital, Dr Chong met B again. “By that time, he was already very ill, with advanced metastatic cancer that caused severe pain,” Dr Chong recalls. “Somehow though, he remembered me and we connected almost immediately – with unspoken words.”
The little boy gave Dr Chong two stickers from his collection – one read “the best” and the other, “you are the one”. It was a simple affirmation for Dr Chong, who had been deliberating a major decision to commence training in paediatric palliative care.
As a General Practitioner, Dr Chong witnessed first hand, the suffering of his young patients who had developed serious illnesses, like cancer. To support these patients and their families, he started making complimentary home visits and soon realised he needed specific skills and knowledge to meet the unique needs of these children. More importantly, it became increasingly clear to Dr Chong that there was a major gap in the healthcare system.
Dr Chong examines one of Star PALS’s youngest patients, baby Elijah, on a home visit.
Dying children, having endured countless stays in the hospital, simply wanted to spend their remaining days in the comfort of their own homes. “The hospital had been their second home all this while, but when the situation turned dire, home became the place to be,” Dr Chong shares. “Critically, there wasn’t any service that met the child nor their family’s needs equitably when I started out.”
“Parents often needed to bring dying children back to the hospital, sometimes against their will, because in their helplessness, the child’s comfort always comes first.”
To further his knowledge and skills in the paediatric palliative care field, Dr Chong underwent specialty training locally and in the US and the UK. The exposure enabled a bird’s eye view of the situation locally – there was generally little public understanding of hospice and palliative care and the notions of death and hospice remained taboo for most.
Dr Chong at the official launch of Star PALS in 2012.
Changing the status quo required a multi-pronged approach. Grounded by the firm belief that no child should die suffering and no parent should feel helpless over it, Dr Chong launched the Star PALS (Paediatric Advanced Life Support) programme in 2012.
It was a beacon in paediatric palliative care, that gave voice to the young ones who had endlessly borne the ravages of illness. Through a holistic approach that cares for both patients and their families, the multidisciplinary Star PALS programme has brought quality medical care and comfort to almost 500 patients and their loved ones since its launch.
Each service under the Star PALS umbrella was carefully conceptualised and planned to attend to pressing needs. Recognising the immense physical and emotional toll of caregiving, the Medi-Minder service was established to provide respite for caregivers of critically ill children. Medi-Minders undergo rigorous training, in order to provide competent nursing care for these children, allowing their guardians to take a breather without worrying about their wellbeing.
Dr Chong, HCA Star PALS patient Amelia Ng and her sister, Amanda, at the Star PALS Family Camp in 2019.
Signature events like the Star PALS Family Day and Star PALS Memorial attend to the emotional needs of patients and their loved ones and enable them to gather as a community.
While Dr Chong is undoubtedly a trailblazer in the field, he also recognises that there is a limit to what he can do on his own. Through his efforts in research and training locally and overseas, Dr Chong aims to continually build capability and raise awareness. Over the years, he has shared his knowledge at international conferences and also mentored healthcare professionals overseas, including Bangladesh, Taiwan and Thailand.
Dr Chong (far left) on a training tour in Bangladesh in 2016.
As Vice Chairman of the Singapore Hospice Council, Dr Chong strives to dispel misconceptions on traditionally taboo topics like death and dying and to encourage the general public to plan for end of life.
To raise the overall standards of the paediatric palliative care field and to better reach patients in need, Dr Chong also formulated the Paediatric Palliative Screening scale (PaPaS). The standardised scale, which was eventually adopted and implemented by the Ministry of Health, helps doctors identify and refer patients for paediatric palliative care.
Dr Chong was recently conferred the 2021 President’s Volunteerism and Philanthropy Awards – Leaders of Good award, for his monumental efforts in advancing paediatric palliative care.
Dr Chong (right, second row) at the 2021 President’s Volunteerism and Philanthropy Awards ceremony.
For the pioneer who has made his mark locally and internationally, bringing care and comfort to young patients at home is a beautiful work in progress – one that requires the acceptance and support of parents and other healthcare professionals. “My hopes for the future, are that paediatric palliative care no longer instills fear among parents and paediatricians understand better what we do,” Dr Chong shares. “Most of all, I hope there will be more of us working in this area. It’s terribly lonely right now.”
“An advice (or two perhaps) that I would give to others who are contemplating working in this field – hone your craft in the care of children, in whichever field one may come from,” Dr Chong says. “Listen to children more and learn from them. When they say you’re good, go ahead and don’t look back!”
The journey has not been easy – from leaving his comfort zone to working hard to garner support for Star PALS before its launch and facing death on a daily basis. Yet, the greatest reward is being able to bring comfort to the young ones. “I cope by focusing on reducing children’s suffering and bringing out their little voices whenever I can,” Dr Chong says. “This brings me huge relief and gives my job great meaning.”