Cox’s Bazar, the densely-packed district crammed with about a million Rohingya refugees in southeastern Bangladesh, is known as the world’s largest refugee camp. When the World Child Cancer team visited in 2018, they found Taslim, a 4-year-old with eye cancer, in severe pain.
“She desperately needed palliative care, including medicine to relieve her pain,” the international charity wrote that year in a report on the need for palliative care in Cox’s Bazar. With no morphine available locally, Taslim’s father took her to a government hospital. “Like the health facility, the hospital could not provide adequate pain relief. Tragically, Taslim died at this hospital only days later without the right care and support that she and her family so urgently needed.”
Taslim’s harrowing story is just one of many, highlighting the dire lack of palliative care in the developing world. In 2020, an estimated 56.8 million people in the world required palliative care, according to the World Health Organization, but the majority of these patients — especially those in low-income countries — do not have access to it.
“Inequities are vast in need and in terms of our responses,” says Afsan Bhadelia, an assistant professor in Purdue University’s Department of Public Health, who has researched the quality of end-of-life care around the globe. “This is a very vulnerable moment for individuals, for their families, and health systems have a responsibility.”
“This is a very vulnerable moment for individuals, for their families, and health systems have a responsibility.”
Although palliative care is often used interchangeably with hospice care, the two terms are nuanced in meaning. Hospice care refers to caring for patients who are approaching the end of their lives and entails supporting patients holistically.
Palliative care, however, is broader and is not necessarily end-of-life care. The WHO defines palliation as an approach for improving the quality of life for patients facing life-threatening illnesses and their families: “It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”
Stephen Connor, executive director of the U.K.-based Worldwide Hospice Palliative Care Alliance, says defining palliative care in this expansive way is important. “We’ve come to understand that the population that needs palliative care is much broader than those who are actively dying.”
About 80% of the need for palliative care is in low- and middle-income countries, Bhadelia says. “There’s a massive amount of need, and there’s a lot of unmet need because of [the] lack of access to this type of care.”
The WHO has mapped access to palliative care across its member states, and the data are telling. In 2019, only 48% of low-income member states had some form of government funding for palliative care, compared to 91% of high-income WHO member states.
Bhadelia and Connor were part of a team of researchers that sought to further quantify and assess the characteristics of end-of-life care models in general. For Bhadelia, examining these end-of-life systems is crucial: “It’s almost a litmus test. If a system is really value-based and value-focused, we would care about patients and families [at the end of life]. It’s a way to assess the performance of health systems and compare.”
In their peer-reviewed 2022 article in the Journal of Pain and Symptom Management, the authors quantitatively assessed 81 countries’ performances on 13 indicators of end-of-life care. Indicators included whether the places where treatment was provided were “clean, safe and comfortable” and whether health care providers “supported patient’s spiritual, religious, and cultural needs,” among others.
Based on their assessment, the highest-ranking low-income country, Uganda, was ranked just 31st. And among the 21 countries that received a “failing” grade, only two were high-income countries.
Bhadelia points out that the purpose of this study was not to point fingers or place blame on nations, but rather identify what needs to be done to advance palliative and end-of-life care systems. For instance, the researchers’ findings highlighted the importance of quality of communication in countries’ rankings. “How providers and healthcare administrators communicate with us, when they communicate with us, what information they provide — this is a cornerstone of the overall quality of death and dying and [prioritization] of end-of-life care,” Bhadelia emphasizes.
Indeed, fiscal resources aside, cultural attitudes play a key role in the adoption of palliative care. Death is a “social event,” says Bhadelia, and turning it into an over-medicalized process can deter families of patients from seeking care in the first place.
This is especially true in the developing world, where palliative care models developed in the Western world may not align with the cultures and practices of other societies. Here, community-centered palliative care becomes particularly important.
A winning model for palliation
Pallium India is an NGO based in Trivandrum, a city in the Indian state of Kerala, that’s demonstrating how local organizations can make an impact in increasing communities’ access to palliative care. In India alone, at least 10 million people require palliative care, the organization estimates, but only 4% of those in need receive it.
“Pallium India’s vision is to integrate palliative care into healthcare,” says Sunil Kumar, a director for the organization’s Trivandrum Institute of Palliative Sciences, a WHO partner. “We want to work with all healthcare centers; that’s our ambition.”
To best use their limited medical resources, palliative health care advocates in Kerala trained a network of community health workers — often volunteers – to meet the hyperlocal palliation, with physicians and nurses assisting as needed. Pallium India’s work has emerged a successful model for palliative care in low-income countries and under-resourced medical systems, Connor and Bhadelia say, with communities in Bangladesh and Ethiopia now following the blueprint.
Government funding and support of palliative care will be paramount in developing countries, but equally important is developing models of care that work for the communities they serve.
The organization uses a three-part model based on demonstration, education and facilitation, Kumar says. “Demonstration means we demonstrate patient care at TIPS. We also have an education or training department, where we provide training to healthcare workers, doctors, nurses, volunteers,” Kumar says. “We facilitate the formation of palliative care centers across India, so we have our facilitation team working in different parts of India.”
Last year, Pallium India reached 4,874 unique patients; trained 1,061 healthcare professionals; and catalyzed the development of 40 palliative care centers across India.
“Kerala represents a unique model,” Bhadelia says. “It demonstrates how in a [low- and middle-income country] context, there can be strong models of access to palliative care, and particularly community-based palliative care.”
One parent describes their experience at an event for Pallium India’s parent support group Rithu in a blog post: “The moment we arrived, we were greeted with tea and vadas, and the children were excited when the organizing team created beautiful henna designs on their palms.” The parent continued to describe the day’s activities and concluded, “To many families like ours, who carry an emotional burden due to illness, every day is about survival. There is time for little else. Rithu was a much-needed break from routine that we did not even know we needed. We made friends, and found solace from each other.”
Pallium India offers just one example of how community-based organizations can work with patients and deliver culturally competent care. Government funding and support of palliative care initiatives will be paramount in developing countries, but equally important is developing models of care that work for the communities they serve.
Ultimately, says Connor, palliative care is “everyone’s business.”
“The mortality rate remains stubbornly stuck at 100% — we’re all going to have to face it someday,” he says. “So let’s prepare ahead of time as much as we can, have conversations with our loved ones to make sure that we know what their wishes are … and help address those as best we can.”
