Global palliative care requires on-the-ground understanding

When I entered medical school, I had every intention of becoming an orthopedic surgeon. Broken bones and torn ligaments from playing sports as a child were my only exposure to medicine. I wasn’t aware of the world of possibilities that existed. Now, I’m a Clinical Instructor at St. Jude Children’s Research Hospital working in palliative care and global health. My career shifted the first time I encountered pediatric oncology and palliative care. It wasn’t just the cutting-edge medicine, but the humanity and care I witnessed that drew me to this career. My passion for global health was fostered through travel and work opportunities abroad, in Argentina, Kenya and work at World Health Organization (WHO).   

For a while I didn’t think there was an opportunity that would allow me to cultivate these interests in pediatric oncology, palliative care and global health. But at St. Jude, by working in the Department of Global Pediatric Medicine and with St. Jude Global in partnership with the Division of Quality of Life and Palliative Care, we can improve access to palliative care around the world, especially in low-and middle-income countries.

Palliative care around the world

As an oncology community we’ve made great strides over the last 50 years in addressing pediatric cancer. In high-income contexts, five-year survival is now greater than 80%. But most children with cancer live in low- and middle-income countries, where the five-year survival is only 20-30%.

Palliative care is the treatment and prevention of suffering. That includes physical, emotional, psychological and spiritual suffering of both the patient and their family. Every child who's diagnosed with cancer goes through suffering at some point in their care, as does their family.

When you look at palliative care needs worldwide, the numbers are stark: 97% of palliative care needs occur in low- and middle-income contexts. There is a need to address the suffering of both the patients and the families of children with cancer in these contexts.

However, over 60% of countries worldwide have no access to pediatric palliative care. Where the need is the greatest, the access is the lowest. That means we have a huge opportunity to help scale up capacity for palliative care around the world. We want to ensure that a child, no matter where they live, no matter their diagnosis or prognosis, has the best quality of life possible. That means making it possible to support and accompany them during their difficult cancer journey through access to palliative care.

ADAPT study in Latin America

To better understand the barriers that exist and block the widespread adoption of pediatric palliative care in Latin American countries, we ran a survey study of physicians. Called Assessing Doctors’ Attitudes on Palliative Treatment (ADAPT), the study was based on earlier work done in the Euro Region. Through the study, we asked our collaborators in 17 Latin American countries to share with us:

• What they already know about palliative care.
•  What their understanding is compared to published guidance.
• What their comfort level is in addressing patient needs.
• What barriers stand in the way of earlier integration of palliative care into treatment.

A total of ­­­­831 physicians participated in our survey, which was distributed from August 2020 to January 2021. Recently published in JAMA Network Open, the study revealed some important takeaways.

First, understanding the reality versus the ideal reveals a big gap. From the survey, it was clear that physicians were hoping that palliative care could begin earlier. While there may be more access to palliative care in Latin America than in other regions of the world, those palliative care professionals are overwhelmed with the tasks they have in hand – often having to split time between adults and pediatrics.

We also found that the top barrier to early integration of palliative care was access to home-based care. Due to challenges in socioeconomic status, distance to medical care and the fact that robust home-care systems don’t exist in many areas, it can be very difficult. However, for one country, that’s not the case. Costa Rica has a well-established home-based care program. It provides a blueprint for the region that we can build on for home care in other areas.

Examples like Costa Rica show that solutions shouldn't only come from St. Jude; they should come from within the region. By connecting these regional champions to learn from one another, we can play a role in helping build capacity for improved palliative care access.

Building Connections

This project created a natural network of colleagues who have interest in improving access to high-quality palliative care for children with cancer in these different regions. Their engagement is essential for this work. There's no way we can reach all the children we hope to reach without participation, contribution, collaboration and leadership from our colleagues around the world, especially when it comes to palliative care. The co-design approach of ADAPT, where our collaborators are engaged from the beginning in the development, execution, analysis and implementation of these efforts, is essential for improving access to palliative care around the world.

Colleagues on the ground are leading the research, and we're providing mentorship to help them get the expertise and experience they need so they can become regional champions. When people in their region have questions, we want our collaborators to be the experts they turn to. This work is too big for it to be housed only in Memphis, Tennessee. For us to have the impact we want to have, we need to make sure we support our colleagues around the world and give them the resources, support and training they need to achieve it.