Poh-Heng Chong1, Jin Ye Yeo2
1HCA Hospice Limited, Kwong Wai Shiu Hospital, Singapore; 2APM Editorial Office, AME Publishing Company
Correspondence to: Jin Ye Yeo. APM Editorial Office, AME Publishing Company. Email: apm@amepc.org
This interview can be cited as: Chong PH, Yeo JY. Meeting the Expert of APM: Dr. Poh-Heng Chong. Ann Palliat Med. 2024. https://apm.amegroups.org/post/view/meeting-the-expert-of-apm-dr-poh-heng-chong.
Expert introduction
Dr. Chong (Figure 1) is dually trained in adult and pediatric palliative medicine, and he leads HCA Hospice as Medical Director. He founded Star PALS (Pediatric Advanced Life Support), a specialist community pediatric palliative care (PPC) service that supports children and young persons with serious illness in the home setting. That was a first, and still remains the only such service in Singapore. His professional career spans almost three decades. Dr. Chong first trained in Family Medicine and ran his own general practice for a decade, before going on to subspecialize in palliative medicine.
Dr. Chong is regularly invited to speak at medical conferences as well as teach palliative care internationally. He chairs the Special Interest Group for PPC in the Asia Pacific Hospice and Palliative Care Network, driving various advocacy efforts and educational initiatives in the region. He has published peered-reviewed papers and written book chapters, particularly within the PPC domain. This included his PhD thesis “A good death in the child with life shortening illness – a multiple case study”. For his contributions within the charity sector, he was awarded Leaders of Good (adult category) winner in 2021 at the President’s National Volunteerism and Philanthropy Award ceremony in Singapore.
Figure 1 Dr. Poh-Heng Chong
Interview
APM: What inspired you to become a pediatric palliative care specialist? In the face of suffering and death on a daily basis, how do you keep yourself motivated?
Dr. Chong: I actually started as a family physician and ran my own private practice for more than 10 years before deciding to specialize in palliative medicine. In my private practice, I started seeing cases with end-of-life care needs, and began to explore my interest in palliative medicine. I eventually got hooked. It was in reality a calling to serve in palliative medicine. In relation to pediatric palliative care, I have always been inspired by great courage and resilience observed in the young person living with serious illness.
To stay motivated, I would think about how and what my patients and their families will do without me. Not to say I bring a lot to the table, but I am able to contribute ideas and solutions together with their own doctors. I utilize my experience in palliative medicine, including insightful interactions with children, parents, grandparents, and bring clinical wisdom to support everyone. Children are wonderfully adaptable; they cry yet re-imagine reality to then laugh the next moment, all while not forgetting what has just happened by parking negative emotions aside. Those are tricks of the trade that I learnt from children which I then utilize in my interventions.
APM: As a specialist in pediatric palliative care, what do you think are the common aspects that pediatric and adult palliative care specialists share? Compared to adult palliative care, what do you think is the biggest difference for a pediatric palliative care specialist?
Dr. Chong: As a specialist cross-trained in both adult and pediatric palliative care, I see that the theme of loss is universal. Loss in this case does not refer to just death and dying. It refers to a person losing function, a role in society, and most importantly, a future. It is similar on both sides of the age spectrum, whether it is a young person or an older adult. The common thing would be about recognizing each patient as unique and not judging or making assumptions about needs or how we should provide care. I have moved from a standardized way of engaging patients to one where I start meeting them as an individual, to understand who they are, what are their priorities, and what they have lost. In palliative care, a major part of our work is in mitigating losses or to patch gaps, if possible, by helping them learn how to let go so that they can move on. But there will still be some parents who are unable to let go. We help them reframe what they have lost as potentially what they might gain.
In my opinion, the only difference between adult and pediatric palliative care is understanding how each stakeholder deals with the losses and what practitioners like myself bring to the consult. Even after so many years, I am still learning ways to engage my patients using different interventions.
APM: In the field of academic publication, what aspects of pediatric palliative care do you think journals should pay more attention to?
Dr. Chong: Future research should look at how palliative care can get delivered beyond traditional hard science or evidence-based medicine, towards something more personalized and meaningful for the individual. It has always been difficult to measure or quantify outcomes in these studies. I have observed how challenging it is to research within palliative care, particularly in identifying appropriate indicators or instruments to apply that would make sense. Across both pediatric and adult palliative care, these are common challenges that we face, in both clinical practice and research.
In my opinion, pediatric palliative research has always been 10 years behind adult palliative research. Academic journals should not use the same standards to assess manuscripts from pediatric palliative care. I feel it is important to recognize that pediatric palliative care is very niche and nascent; it is very different from adult palliative care in terms of ethics, tradition, and context. The domain itself often calls for a different research design and methodology. Hence, if we have only one standard of how a paper should look like, it will prevent papers with good findings to see the light and move the field.
APM: We understand that having a goals-of-care conversation is one of the central tasks for palliative care specialists. Would you share what is critical when having this goals-of-care conversation with parents?
Dr. Chong: It is very interesting in this instance because you cannot always speak to children about their conditions; sometimes we do not even get the permission to do so. That should not imply they do not have goals. ‘Goals of care’ sounds like a massive label that is only befitting of adults, but children also have their own goals. I believe that because the children are the ones who are sick, they ought to be the ones who own the situation. Therefore, children ultimately need to be engaged and we must listen to them.
To return to the question, what is critical when discussing with parents is to first find out if they understand what is happening. Parents could not tell us what they want without understanding what is happening. This applies particularly for parents who are in denial, and we are unable to have conversations with them. Second, listen to see if they have understood us correctly as parents may think of the worst when the situation may not be as grave. Correcting misunderstandings will be important. Third, ensure that we do not impose our own assumptions, values, or recommendations too early, before we find out what is important to them. To summarize, listening is of utmost importance in ensuring that parents convey what is important to them, even if this may throw us off. Acknowledge and affirm what they share. Honoring these conversations are difficult but critical. We then use it to ensure whatever discussed afterwards is underpinned by keen awareness and understanding.
APM: In one of your previous interviews, you mentioned the importance of normalizing conversations around palliative care so that children and families can get help earlier. Would you share some specific measures or policies you and your department have implemented to achieve this goal?
Dr. Chong: Conversations around pediatric palliative care is difficult as there is a massive wall between us and the parents. Unless the parents have accepted us, there is no chance we can help the child at all. Therefore, what we have occasionally done is to ‘infiltrate’ our colleagues’ departments to join their team meetings or family conferences which the parents attend. During these meetings, we will introduce ourselves as “palliative care people” who support our colleagues to ensure that the children are comfortable when receiving treatment. While this is technically true, I also have a personal agenda to ensure that the parents are grounded and in control throughout. When this happens, I am always rewarded eventually as I meet them again for a consult to plan their child’s supportive or end-of-life care. There is a certain level of familiarity and trust by then, and hopefully they can see that I am earnest and I am there for them.
Another thing we have done is to let people have the ownership to approach us directly. For people who are not yet ready to meet us, we would just give them our name cards so that they can contact us when they need help. For people who have accepted us, we set the right expectations by telling them that when we talk, we are not merely advocating one line of management, but rather, what is best for the child on their terms. In some instances, I have encouraged parents to speak with their child’s primary oncologists or intensive care physicians to seek active treatments instead of stopping them.
APM: As the founder of Star Pals (Pediatric Advanced Life Support), apart from normalizing care conversations, what other goals do you hope your team can achieve in the next few years?
Dr. Chong: I have since passed the team’s leadership to a colleague of mine and also expanded the team. We started from zero to where we are now 10 years later. I am very proud of what we have achieved, both in terms of growth in service and research outputs. If we can achieve so much in 10 years, I am hoping that we can do so much more in the next 10, such that even more children and their families can benefit. I hope my team builds on the existing foundation to bridge a few more gaps. One of them is bereavement care: how well are we supporting families after the child passed? The practice tends to be very busy looking after the children who are still alive beautifully. And then everything fizzles out after they die. This gap apparently does not just exist locally, but also regionally and internationally. There have been early efforts to assess risks for complicated or pathological grief in this context. I hope to spearhead further research in this area.
Another area is to expand two services we have recently conceived: perinatal and neonatal care, as well as support of emerging young adults who lived beyond prior estimated prognoses. We recently piloted a program called ‘Twilight’ to help these young adults achieve normative aspirations despite various limitations. It is seeing early success and I hope we will see even greater achievement in the next 10 years.
APM: For young doctors who are going to specialize in the field and share the same passion as you, what would be your advice?
Dr. Chong: Based on my personal experience, having gone through family medicine, private practice, adult palliative care, and pediatric care, the lesson I have learnt is: nothing is ever wasted. The convoluted pathway allowed me to accumulate practical wisdom that I can use very freely now. I feel like I would not be as good as I am now if I had not gone through the whole package. Even if one has an interest in cosplay, watching Netflix, or reading comics, all of these could become useful, as they can reduce barriers between you and the child at relevant moments. There have been times where I regretted not having watched a film or learn that song which prevented me from connecting with a child. Whatever varied interests should be pursued with passion, not just in the sciences but also in humanities and art. Last but not least, one should continue to be humble and keen to listen.
APM: As an author and collaborator, what goals do you hope to achieve with APM?
Dr. Chong: I hope to have a closer relationship with APM as I have just started today to understand who is APM, what is APM, and where APM is going. From there, we can partner to ensure that it is a win-win for both contributor and publisher. APM could offer an attractive platform for novice researchers a chance to publish good papers and build greater confidence as they move up the scholarship ladder.