The month of October is a significant time of the year for people working in palliative care. A lot of activities are happening globally to celebrate the World Hospice and Palliative Care month worldwide. Meanwhile, the monthly conduct of the National Training of Paediatric Palliative Provider Workshop (NTP) Malaysia happened last October 5-7, 2023 and I had the privilege to participate in this intensive training together with our palliative care nurse at National Children’s Hospital Pediatric Palliative Care Center, Mr. Oyo Boy Casimiro, as its first foreign participants. It was held at the Hospital Pulau Pinang in Penang, Malaysia, a renowned leading centre for medical tourism in the island.
This unique opportunity was made possible through the generous sponsorship of the Malaysian Association of Pediatric Palliative Care (MAPPAC), led by the dedicated Dr. Lee Chee Chan as President. The Ministry of Health of Malaysia provided free registration for the program, enabling healthcare professionals like myself to acquire essential skills in delivering palliative care to children with life-limiting illnesses in our communities.
The first day of the workshop commenced with opening ceremonies attended by esteemed dignitaries from the Ministry of Health of Malaysia namely Dr. Norhayati binti Ibrahim, Deputy Director of Medical Development Division Ministry of Health, Dr. Jafanita binti Jamaludin, and Dr. Sangeeta A/P Subramaniam. The day was filled with didactic sessions, engaging case discussions, and enlightening role plays, all centered on the concept of Pediatric Palliative Care (PPC) and the crucial aspects of needs assessment, symptom management, and introducing PPC to parents. Topics ranged from pain and breathlessness management to addressing issues like feeding intolerance, drooling dystonia, and sleep disorders. We also delved into opioid initiation, titration, and switching, critical for improving the quality of life for these young patients.
On the second day, the focus shifted towards acquiring practical skills, with hands-on training in advance care planning, symptom management at the end of life, and the setting-up of equipment for home terminal discharge. We also created comprehensive symptom management plans ourselves to provide the best possible care to our patients during our case discussions.
As the culmination of our learning journey, we had to pass a theoretical examination and Objective Structured Clinical Examination (OSCE) to assess our competence in applying the knowledge and skills gained throughout the workshop.
Among the many valuable techniques I learned during the NTP, the “Button Game” stands out as the most unique and memorable. This creative approach involves using colorful and fancy buttons of different sizes and shapes to communicate with children, helping us better understand their feelings, thoughts, and wishes concerning their illness in a friendly, peaceful, and fun way. It’s a powerful tool to establish rapport and provide emotional support to our young patients.
My personal experience in Penang extended beyond the workshop. We have travelled a long 6-hour “adventurous” (that’s another story) drive from Kuala Lumpur to experience the harmonious blend of preserved heritage and advanced infrastructures of Penang, showcasing the best of nature and city life, making it a delightful place to explore. The rich culinary scene, featuring sumptuous and delicious foods from hawkers on the streets of Penang to exquisite Chinese restaurants, added a unique dimension to my visit. To say that I was fully fed is an understatement! One more thing that was very hard to miss was the deep sense of art and creativity seen through the graffiti art at several corners of Penang, artistic ideas and decors in cafés and shops, and most especially, the old British architectures that stood tall and mighty to this day.
Ultimately, the NTP workshop was truly a thorough educational program that is responsive to the practical needs of the community and healthcare professionals like me who works in a country that resembles the Malaysian culture despite the disparity in our healthcare systems. It was truly a combined fun and learning with camaraderie that fosters progress in our pediatric palliative care practice. I left Penang with a renewed sense of purpose and commitment to providing compassionate care to children with life-limiting illnesses and we look ahead into forging collaborative efforts with other inspiring champions in this field.
Article written by:
Xiohara E. Gentica, MD, DPPS
Diplomate, Philippine Pediatric Society
Pediatric Palliative Medicine Subspecialist