Integrating palliative care for children with cancer can mitigate suffering for patients and their families, but there is a disparity between palliative care for adults and children.
Integrating palliative care for children with cancer can mitigate suffering for patients and their families. Photo: Josue Michel
Many people, when considering the words palliative care, think predominately of end-of-life or hospice care. However, the World Health Organization (WHO) defines palliative care as “the prevention and relief of suffering of adult and paediatric patients and their families facing the problems associated with life-threatening illness”. These problems include the physical, psychological, social, and spiritual suffering of patients and family members.
Children with cancer and their families suffer greatly during their cancer journey from the symptoms associated with the disease, the potential side effects of treatment, and the stigma and cultural perceptions that a diagnosis of cancer might have in their community. There is substantial evidence that integrating palliative care for children with cancer significantly reduces suffering for both patients and their families. Palliative care has been shown to improve symptom management, enhance quality of life, and foster better communication between the family and the medical team. Therefore, all children with cancer may benefit from having palliative care integrated into their treatment.
Although integrating palliative care into patient care is recognised as an 'ethical responsibility', significant gaps remain in its implementation, especially in paediatrics.
Ten years ago, at the 67th World Health Assembly, diplomats and health officials from around the world approved resolution 67.19 which states that palliative care is an “ethical responsibility of health systems”. Although integrating palliative care into patient care is recognised as an ethical responsibility, significant gaps remain in its implementation, especially in paediatrics. The Global Atlas of Palliative Care highlights that over 97% of the global need for paediatric palliative care is in low- and middle-income countries (LMICs), yet more than 60% of countries worldwide have no recognised paediatric palliative care services. Furthermore, even in countries where paediatric palliative care is recognised, there are significant disparities in access, with high-resource (often urban) areas having much better availability than low-resource (often rural) regions.
Mexico is a beautiful country, rich in biodiversity and culture and home to more than 130 million people, one third of whom are children. As a paediatrician dedicated to paediatric palliative care, I have witnessed firsthand how inequities turn into a harsh reality, where social determinants negatively impact my patients' right to healthcare, many of whom are battling cancer. Despite Mexico's strong legal framework mandating that every child diagnosed with a life-threatening or life-limiting disease should have access to palliative care, the reality is that access varies significantly depending on where the child is born and lives.
In a recent geographical analysis of paediatric palliative care development in Mexico, we found that the majority (68.8%) of the 31 states have either no paediatric palliative care activity or very limited services. These states are home to nearly half of the paediatric population, meaning that one in every two children in Mexico lives in areas with little to no access to paediatric palliative care. As a result, these children experience unnecessary suffering and a diminished quality of life as they and their families navigate their illnesses. Additionally, none of the states had fully integrated services or continuous availability of child-appropriate opioid medications.
Access to palliative care varies significantly depending on where a child is born and lives. Photo: Getty Images
Another significant finding from our research is the disparity in the development of palliative care for children compared to that for adults. While palliative care in Mexico has been recognised as having a high level of development and is in the early stages of integration within the health system, this progress does not automatically extend to paediatric palliative care. Our work clearly shows that advancements in adult palliative care do not necessarily translate into adequate palliative care for children.
Children are not simply little adults...A strong adult palliative care system does not equate to a strong paediatric palliative care system, and it is crucial to study and understand these distinctions.
Children are not simply little adults; they have unique pathologies and needs, which is why the WHO advocates for specialised training in paediatric palliative care. Ultimately, a strong adult palliative care system does not equate to a strong paediatric palliative care system, and it is crucial to study and understand these distinctions.
Mexico is not alone in facing these challenges. It is imperative that nations, organisations, and leaders take action to assess the state of palliative care for children with cancer—and for all children, including those with non-cancer conditions—by studying their needs separately from those of adults. Moreover, it is crucial to conduct in-depth evaluations within each country to identify potential inequities between high-resource and low-resource settings.
This will help ensure that every child, regardless of diagnosis, prognosis, or location, has access to high-quality paediatric palliative care.
The opinions expressed are those of the authors and do not necessarily reflect the position of Re:solve Global Health.
Dr Jorge Ramos is a paediatrician in the paediatric palliative care team of the Department of Palliative and Pain Medicine at the Hospital General de Occidente (HGO) in Zapopan, Mexico. He is professor of the first specialty in PPC in the country, endorsed by the University of Guadalajara (based at HGO), and coordinator of the Pediatrics Commission of the Latin American Association of Palliative Care (ALCP).
Dr Michael J McNeil is a paediatric oncologist and hospice and palliative medicine physician at St. Jude Children’s Research Hospital in Memphis in the US. He is director of the St. Jude Global Palliative Care Program.
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