I have been based in Trivandrum, India since the last update. It has been three weeks since I arrived, marking the longest that I’ve stayed in one place since beginning my Watson exactly 101 (!!!) days ago.
It feels like it’s been forever since I’ve written, and that’s because in some ways it has been.
I wrote my last update from London, drafting the post in a swath of hostel common rooms while inevitably sipping some sort of bitter black tea. Now, half a world away from all of that, I write this update from India, having drafted this entire post in intermittent bursts seated in the same spot while pondering why tea tastes so much better on this side of Dubai (the sugar!).
It’s been about three weeks since I arrived and started working with my current organization, the longest amount of time I’ve had a semblance of routine since beginning this journey some three months ago. When crafting my Watson proposal, most of the research I did about palliative care in India seemed to point back towards one organization: Pallium India. At the time, I sent them an email expressing my interest in learning from them, they responded by indicating their receptiveness and experience with international visitors. Life worked its mysterious wonder and exactly a year after initial contact with Pallium, I was sitting inside of its Trivandrum office.
Pallium India is located in the state of Kerala in the south of the country. For many reasons that I will not list here, Kerala is quite different from the rest of India, so much so that some have jokingly welcomed me to the ‘Country of Kerala.’ It’s estimated that less than 2% of patients in need of palliative care in India actually receive it, but Kerala, a state with 3% of the country’s total population, boasts over 90% of all palliative care programs in the country (1). Even though I was aware my exposure to palliative care in this southern state would be far from a representative sample, I was interested in learning more about what has been dubbed ‘The Kerala Model,’ a model of development characterized by the creation of a strong social infrastructure, and particularly its impact on palliative care development (2). (Over)Simply put, as it applies to palliative care, the main components of this approach rely on community mobilization and engagement, involvement of local self-government institutions, and attempts to incorporate palliative care into primary care.
Having accommodated so many international clinicians in the past, it’s often assumed that I am a doctor or a nurse even though I am quite far from either. Since being a Watson Fellow is not necessarily something that can be described succinctly, I’ve settled on saying that I am studying palliative care anthropologically. It’s not entirely true, and I take some issue with the label, but it’s the most accurate way to describe what I’m doing quickly.
Perhaps that raises the question: what have I been doing? For the better part of three weeks, I’ve been learning as much as I can from the folks here. I’ve joined clinical teams on home visits, went for rounds on the inpatient unit, and interviewed just about every person working in or around the organization. Prior to arriving, I had read enough about their model of delivering care to understand how the proverbial machine worked, so I endeavored to use my time here to learn how all the pieces and parts come to function in unison.
After all I’ve learned here, I may be better off asking ‘What isn’t palliative care?’ than ‘What is palliative care?’ A 2017 Lancet Commission Report describes palliative care well through one of the five key messages it identified for global access to palliative care and pain relief, “Alleviation of the burden of pain, suffering, and severe distress associated with life-threatening or life-limiting health conditions and with end of life is a global health and equity imperative” (3). Notice in this definition that both life-threatening and life-limiting health conditions are separately acknowledged.
Recently when talking about my work, someone affiliated with Pallium asked, “When speaking about your project, you mention palliative care and death, so which is it about?” A few months prior I think I would have quickly come up with an answer that may have made it seem like the overlap was entirely intentional and very well-reasoned. Instead, I answered honestly, “You know, I sometimes have to laugh at myself because I confused end-of-life care and palliative care in my proposal, using the two synonymously when really they are quite distinct. I think there is a tendency to confuse, and I am guilty as charged.”
Watson has made me bolder, more willing to be vulnerable.
It common to confuse palliative care with end-of-life care, and astute observers will notice that I have here at times. I am far from alone in doing so. Even as someone who worked in a department of palliative care for two years, my conflation is largely subconscious. True that illnesses which are life-limited are often also life-threatening, but to assume that palliative care should only be available to that subset of individuals is to deny many more much needed care. I hypothesize that this occurs because in countries like the US, where for most people (but certainly not all) aspects of life that may be impacted by illness such as employment, education, and rehabilitation needs are taken care of by established support systems, the services rendered under the guise of palliative care may only be needed at the when facing the end stages of a life-threatening illness. It can also be argued that there is just not enough awareness or development of palliative care provisioning to have the field understood as holistically as it endeavors to be. Either way, it was an Indian palliative care physician who recently told me that he had to help lobby tirelessly to make sure the language surrounding palliative care included both life-threatening and life-limiting health conditions, explaining that “clinicians from other countries just have not seen the scale of suffering here.”
It is tempting to write an entire post delving into just that, exploring the heartbreaking magnitude of need that I have witnessed. Certainly, it would be an appeal to pathos, and perhaps because of that the most effective way of convincing others of the importance of palliative care. Yet, I have always felt a great reticence in showcasing any suffering that is not my own. Instead, I will describe one of my most impactful experiences I’ve had on my year thus far:
I am on a home visit and see a woman with a stomach tumor so large I initially thought she was pregnant. Despite the rural location of their home and the financial constraints under which they live, she’s been to a number of hospitals and had a number of procedures done. I don’t speak a word of the language, but I don’t need to in order to sense how much distress she and her family are under. The clinical team rushes around me; I can’t take my eyes off of her. All I can think is ‘I am here with you,’ then do my best to allow every part of myself to be in those moments with her. I can feel the tears welling—are they mine or hers? I can’t be sure. I don’t cry, but as I leave, I met her eyes giving a soft smile and a small nod.
Did I make any difference? I don’t know, but no longer think ‘making a difference’ is what really matters. I think what matters is being a human; is embracing all of the pain, the tragedy, and the joy that comes with it; is being unafraid to touch others with our humanity and to allow ourselves to be touched theirs.
I decided to extend my stay with Pallium India for another week, meaning I will be based in Trivandrum until nearly the end of the month. With this extra time, I’ve been working on a social media campaign for the organization that will form the substance of the next update to this blog.
(1) “Models of delivering palliative and end-of-life care in India.” Suresh Kumar, 2013. https://pdfs.semanticscholar.org/3fe1/388e88d07934f1215a33cb79fd206d914545.pdfd
(2) More can be read about the Kerala Model can be found in this article: “Growth and Success in Kerala.” Alexandra Brown, 2013. The Yale Review of International Studies.
(3) “Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.” https://www.ncbi.nlm.nih.gov/pubmed/29032993