Dr. Afsan Bhadelia is co-chair of the Scientific Advisory Committee of the Lancet Commission on Global Access to Pain Control and Palliative Care, conducts health systems research — especially on chronic diseases, and is co-editor of the book Closing the Cancer Divide. In this Q&A, we asked about Universal Health Coverage, palliative care, and her thoughts on how they can be achieved.
1. Can you describe in a few words what Universal Health Coverage (UHC) is?
Universal health coverage is when everyone — worldwide — has access to affordable, effective, equitable, and quality health services without the risk of catastrophic health expenditure, which can create a great burden on families. Simply creating access, however, is not sufficient. UHC should generate better health outcomes for all.
2. How is palliative care a component of UHC?
We have to think about care across the continuum and life course; palliation is an expression of that care. In practical terms, it means ensuring care from diagnosis to end of life. There has to be an Essential Package [as identified and itemized by the Lancet Commission on palliative care] free for all, and an augmented package that is affordable. Ideally it would be free, but countries have different trajectories due to social, political, and economic priorities.
3. How does palliative care fit within UHC?
Through integration of palliative care as part of UHC, the cost is minimal. The Lancet Commission priced its Essential Package at $3USD per person; or 2-3% of UHC health services. The cost is so minimal, and the impact can be so vast.
The Commission calculated that more than 61 million people experience serious health-related suffering annually. When thinking about the framework around serious health-related suffering, the priority has been to extend life and improve productivity; we need to also focus on the notion of suffering and its impact on the individual, on caregivers, on the family as a whole. As a society, we can no longer neglect something as important as suffering.
4. What is the state of UHC within low- and middle-income countries today?
Most LMCs [low- and middle-income countries] are still struggling to achieve UHC, and most who have it usually do not include palliative care. It’s a neglected area. An example of a country that has made great strides is Costa Rica. But then there are countries like India, with an immense, diverse population. I spent some time working in Kerala; it has the made the most advancements on palliative care in the country, but tribal communities, and trans-gender communities barely have any access. Some doctors will not even touch trans-gender patients. We have to think about the worst off, and the status of care for the worst off when assessing the state of UHC.
5. What are the main barriers to the implementation and adoption of UHC?
The main barrier is often said to be financing, even though we have identified strategies to counter it. Other barriers include political leadership, social determinants of health, and geographic isolation.
We need to overcome each of these to enact and implement policies that advance better health for all. Simultaneously, citizens need to demand universal health care. Health care should be a right — not just one that is listed in a country’s constitution, but a right that is realized.
6. WHO Director-General Dr. Tedros called palliative care ‘part of the journey of universal health coverage’ in his description of the Lancet Commission report. In your view, can palliative care flourish outside of UHC?
There are models that exist outside of UHC, but that’s not a sustainable strategy if you want to ensure universal access. You cannot achieve UHC without palliative care; they go hand in hand. It has to be part of a national effort, which makes it both more efficient and more affordable.
7. In a paper in 2015, you described the diagonal approach to UHC for low- and middle-income countries. What is the diagonal approach?
It’s about finding and generating synergies between disease-specific programs and priorities, and overall efforts to strengthen health systems functions. For instance, if you expand and train health care workers to deliver palliative care, you can build human resources for health as, with appropriate planning, these same workers can be trained to deliver other health services. Health care planners and implementors need to take a holistic approach and keep in mind that the same person receiving cancer care is also receiving palliative care, for example. In designing and reforming the health care system, we can better coordinate, identify, and take advantage of synergies. Family planning, for example, involves sexual reproductive health, which presents an entry point and opportunity to increase awareness about women’s cancers.
8. Is cancer care a prime example of emerging needs that will necessitate palliative care/UHC?
Oftentimes, one issue or condition, such as cancer care, can drive a broader movement. As part of the Global Task Force on Expanded Access to Cancer Care and Control, I partook in reviewing national cancer plans and found that many countries have national cancer strategies that emerged from efforts to treat one cancer type, such as breast cancer.
Of the 61 million people with serious health-related suffering, 15 million are cancer patients. We often need an entry point. Where palliative care for cancer exists, we need to now push and broaden it.
9. From the point of view of bioethics, what is the best argument for UHC?
Dignity in life and at the end of life. If we think about social values and the explicit ethical frameworks that drive health care reforms, for example in Mexico, dignity has often been at the center of them.
My work on health justice, and how individuals define it, led to focus groups where people said, ‘If my care provider is kind and respectful, if I feel that the care is dignified...to me, that’s half the treatment.’ That’s powerful.
It leads to other questions. How are we training the health workforce to promote respect and dignity? How are our policymakers making decisions based on these values? We have national household surveys that capture various data points; we could include a module on health justice. You could assess over time how people view different dimensions of health justice.
We need systematic guidance from the ethical perspective. I have been developing a health justice scale based on public discourse, to complement other tools. The work is very preliminary, and needs to be validated, but can serve as an argument for UHC.
10. You are an advocate of promoting justice in the setting of health priorities; how is that effectively done?
Citizen-driven and participatory approaches to generate evidence are key. I think we need to allow for engagement of communities in effective ways; we need to understand what people — not experts and politicians — prioritize, and understand the value of care to individuals and communities. Focus groups are usually the way, but there can be other means.
11. What promising signs do you see toward the expansion of palliative care, particularly within a push for UHC?
There is a lot of emerging conversation about dignified care and quality of health services, not just access to care, as well as the need for ethical frameworks to guide health systems strengthening. It’s really going back to what patients value, and that is a promising sign.
There have been efforts in Costa Rica to develop a program on patient navigation to address the hurdles people face in accessing care, and making sure the care they receive is effective. Many policymakers are not thinking of that. A lot of conversations are about increasing the volume of services, but not the value to individuals of services delivered, such as the value of alleviating suffering. We need to talk about that, and I think it’s starting to happen. The more we promote public discourse, especially on ethical considerations, the more we can alter policies towards better quality of health care for individuals and care that aligns with societal values.
12. Any final words?
There is increasing interdisciplinary research that has generated more effective results; we need to continue down that line.