“If we have no peace, it is because we have forgotten that we belong to each other.” - Mother Teresa
I have spent a lot of time over the last few months learning about palliative care in global health. One of the projects I am working on this year is to create an online course in palliative care and medical ethics from a global health perspective for the residents and fellows here in Chiang Mai. I will admit that I knew very little about global health aspects of palliative care when I started, and even less about building a website! But now after immersing myself in this topic for a few months, I feel like I have a better understanding of what it takes to build a successful and sustainable palliative care system. If I had to summarize the most important component of a successful system in a single word it would be: community.
The quote above comes from Mother Teresa, who might be considered one of the very first advocates of palliative care in global health. She was famous for her personal and organizational outreach to patients dying of diseases that carried great social stigma (HIV/AIDs, leprosy, TB) at the time. Instead of retreating from these patients, she reached out her hands to touch, her ears to listen and her heart to love them as best she could. In doing so, she resisted the strong currents of an increasingly modern society which preached a gospel of individualism, capitalism and distraction rather than service, compassion and presence.
Unfortunately, many healthcare systems around the world are based on individualism and capitalism. This can lead to a variety of problems when it comes to the equitable delivery of healthcare, but perhaps even more importantly, it obscures the truth of our interconnectedness as human beings and the incredible power of community. In the “Public Health Strategy for Palliative Care” promoted by the WHO there are four aspects to palliative care development: (1) policy (2) drug availability (3) education and (4) multi-level implementation. The model is visualized as a pyramid with community care as the base and with primary palliative care (all healthcare professionals) and specialized palliative care (palliative care experts) care at the top.
At the heart of many palliative care initiatives in low and middle income countries are community volunteers. The Neighborhood Network in Palliative Care (NNPC) in Kerala, India is just one example of a successful community-owned program that is run largely by volunteers. Founded in the year 2000, it is based on a philosophy that problems associated with chronic and incurable illness are considered to be “social problems with a medical component”. Community volunteers complete a standardized training program that includes an introduction to palliative care, the role of the community, cancer basics, last hours, and others and use this knowledge in the community to help identify problems and intervene with support from physicians and nurses.
As of 2014, this program has grown to have more than 15,000 trained community volunteers, 50 physicians and 100 nurses. It is almost entirely community-funded with most neighborhood groups (80%) managing to raise the money needed to deliver care locally through donations and local government support. I think it is important for Westerners to learn about programs like this because in the US people are often set in their ways of viewing healthcare as a commodity (i.e. something that can be bought and sold). But as Mother Teresa and the volunteers in the NNPC and countless other programs demonstrate, it can also be something that is freely given. At the very least, we need to realize that there are different ways of approaching medical care and that it might be beneficial to “think outside the box” (i.e. Western culture) sometimes.
In order for a palliative care system to be successful, I would argue that it needs to be built around principles of inclusion and connection rather than individualism and consumerism, with the community serving as the foundation. Additionally, we need to improve our ability to conceptualize the end of life as simply another part of the life continuum, not something that is separate and needs to be hidden. I am reminded of a quote which I believe was initially intended for individual people, but I would argue that it also applies to the development of systems and institutions:
“Watch your thoughts,
For they become words,
Watch your words,
For they become actions,
Watch your actions,
For they become habits,
Watch your habits,
For they become character,
Watch your character,
For it becomes your destiny.”
Resources:
Sternsward J, Foley KM, Ferris FD. The Public Health Strategy for Palliative Care. Journal of Pain and Symptom Management (2007). 33(5): 486-494.
Kumar S, Numpeli M. Neighborhood network in palliative care. Indian Journal of Palliative Care (2005). 11(1): 6-9.
*Movie about Kerala program: https://www.youtube.com/watch?v=JBYS3h2EEg8
Photos: Around Chiang Mai
The Ping River at dusk (east of the Old City).
The city was decorated in lanterns for Loy Kratong Festival (November).
Just another smiling life-size statue in Chiang Mai. We need more of these in the US.
Dinner with Thai family medicine residents and visiting resident from HCMC.
