At a time when the country’s public health system often buckles under inefficiency and neglect, it is reassuring to see that compassion still thrives through those who help patients and their families find meaning, strength, and control, even in the face of life’s most difficult circumstances.
Oftentimes, we are so focused on identifying, investigating, and treating the disease that we subject patients and families to a rollercoaster ride of hunting down the disease.
Dr. Xiohara E. Gentica, one of the leading champions of pediatric palliative care in the Philippines, highlighted this as she spoke about the importance of providing pediatric palliative care for children and their loved ones.
“I’m not saying it’s wrong; however, in our pursuit of providing or looking for a cure, we tend to lose focus and forget that we are dealing with a human who is also having psychosocial and spiritual sufferings that affect their quality of life,” said Dr. Gentica while explaining that “Pediatric Palliative Care is a holistic approach to providing relief of suffering of children with serious illness and their families that focuses on managing their physical, psychological, social, and spiritual sufferings.”
Human Side of Care
Dr. Xiohara E. Gentica recalled her first pediatric case was a male infant with Edward’s Syndrome. He was intubated for a long time with so much uncertainty about whether he would survive or not. While the infant’s mother at first looked depressed, unkempt, confused, and aimless, their difficult conversation made her understand her child’s condition and set realistic hopes.
“That span of time was enough to make her see her worth as a good mother and as a human being…to make decisions according to the best interest of her child,” said Dr. Gentica while adding that “Actually, some parents already understand what the end may be for their child but would portray as if they don’t until you talk to them intentionally. You’ll find out that they just wanted to hear a confirmation from someone they can trust that their decision is not harmful for their child, and what they think is not actually a sign of neglect but a product of love, even if it means withdrawing life support.”
She also recounted the case of an adolescent male with advanced osteosarcoma, through which she realized that the appropriate use of morphine can effectively relieve pain and dyspnea, thereby enhancing the patient’s quality of life.
Seeing the patient’s condition and the distraught mother, Dr. Gentica promptly intervened and ordered a minimal dose of morphine, even lower than the standard recommendation. Within minutes, they were amazed to observe the patient’s visible relief and relaxation.
She remembered, “He was even able to speak uninterruptedly. We have literally seen the power of morphine to change a devastating event into a calm situation. We were able to send him home that night, and he died peacefully and comfortably at home in the arms of his siblings the next morning.”
Practice in the Philippines
The best practice in pediatric palliative care involves strong multidisciplinary collaboration among various professionals to ensure the best possible quality of life for the patient and their family.
According to Dr. Xiohara E. Gentica, palliative care in the Philippines has been practiced for about four decades. However, a more focused movement toward developing pediatric palliative care in the country began around 2020, aligning with a growing global effort to strengthen the field. That year, several pediatricians from the National Children’s Hospital seized a rare opportunity to receive formal training from international pediatric palliative care experts. This initiative led to the establishment of the hospital’s first multidisciplinary pediatric palliative care team composed of doctors, nurses, and social workers.
“With a collaborative attitude, the team strived to connect with professionals, mentors, and several organizations that had been advocating for pediatric palliative care for years in the Philippines, like the Kythe Foundation, the Ruth Foundation, and Hospice Philippines, an organization that represents all the advocates of palliative care in the country,” shared Dr. Gentica.
She noted that some of the challenges in implementing pediatric palliative care in the country include the lack of trained providers, limited funding, and the absence of strong policies to ensure sustainable access to pediatric palliative care services. She emphasized that their role as advocates is to give children a voice and uphold their right to equitable and compassionate care.
The Ingasiq Palawan Project
Dr. Xiohara E. Gentica founded the Ingasiq Palawan Project with the goal of training healthcare professionals, allied health practitioners, and community health workers to provide palliative care wherever they are, particularly at the community level, to address the needs of people at the grassroots.
“Ingasiq” is a tribal word meaning generosity or inclination to help, a moral foundation of the Palaw’an tribe in the Province of Palawan, Philippines. The name reflects the spirit of the islands, long known for their compassionate people, making it fitting to revive and embody this enduring value through the project.
“Last October 11, we joined the global observance of World Hospice and Palliative Care Day. Here in Palawan, the celebration was made possible through the collaboration of the Ingasiq Palawan Project, Palawan Medical Society, Philippine Pediatric Society-Southern Tagalog Chapter, City Health Department, I-Care Physical Therapy Clinic, and Robinsons Place Palawan,” said Dr. Gentica.
She continues to hope that everyone who learns about palliative care will share this knowledge and take part in the greater mission of building a truly compassionate community.
As of today, the Ingasiq Palawan Project was able to hold three awareness lectures that equipped almost 300 persons with basic knowledge about palliative care.
These and other initiatives were made possible through the support and collaboration of various partners. Locally, these include the Palawan Medical Society, Philippine Pediatric Society, Community Pediatrics Society of the Philippines, Hospice Philippines, Cancer and Supportive Treatment Foundation, Inc., the Provincial Health Office of Palawan, and the City Health Office of Palawan.
International partnerships were also established with the Two Worlds Cancer Collaboration, St. Jude Children’s Research Hospital, Pain Relief and Palliative Care Society-Hyderabad, and the International Children’s Palliative Care Network.
Aside from stronger support from the local government to integrate and implement palliative care in communities, schools, and other sectors, Dr. Gentica emphasized the need for funding to develop more projects, train healthcare workers through online and in-person workshops, and organize a Pediatric Palliative Care Conference in Puerto Princesa City, Palawan.
The Ingasiq Palawan Project offers opportunities for individuals and organizations to help advance the cause of pediatric palliative care, whether by volunteering, sharing their expertise, or contributing resources. The project is also seeking champions and professionals who wish to join the first multidisciplinary palliative care team in Palawan.
A Champion of Pediatric Palliative Care
Dr. Xiohara E. Gentica shared, “During my training, I cared for children with severe conditions that were often life-threatening or life-limiting. My constant concern was how I could help improve their quality of life beyond providing curative treatment. I’ve also developed a deep interest in having meaningful conversations with people and nurturing compassion, both of which, I believe, enhance the way I care for my patients and make my practice more purposeful.”
As a pediatrician, Dr. Gentica has more than a decade of experience working at a tertiary government pediatric hospital in a low-resource setting. She helped establish the National Children’s Hospital’s fully functioning Pediatric Palliative Care Center, which is home to the first multidisciplinary Pediatric Palliative Care team in the country currently providing comprehensive pain and symptom control, end-of-life care, grief and bereavement support, and home care.
The Pediatric Palliative Care champion now remains steadfast in her mission to make palliative care services more accessible, especially to those who lack access to basic preventive and curative treatment for serious illnesses.