Sungazing

Last week I left Trivandrum for Delhi, then spent much of my first week here getting my feet back under me and recovering after falling sick.  

I feel a kinship to the sun over Delhi.

I’ll admit, it’s a weird thing to feel an affinity towards.

My infatuation began a few days ago while looking at the sky (leisurely sky gazing is one of the very few requirements of a Watson year). With my head tilted upwards, it suddenly dawned on me that I was staring directly into the sun. Even with sunglasses on, I’ve never been able to manage more than a glance, so the realization that I was not only looking at the sun, but had been so for quite some time, was a bit startling.  

It took a moment for me to realize that the sort of prolonged eye contact I was indulging in was made possible by the layer of polluted air kindly affording a few extra degrees of separation between the sun and myself.  

I’m sure it’s still not great for my eyesight to stare directly into the sun here, nor is the pollution going to have a net positive impact on my health, yet I found it hard to avert my gaze. While staring, it occurred to me that the experience of being a Watson Fellow is akin to being able to look into the sky and stare directly into the sun; the lack comfort, familiarity, and routine paradoxically providing a layer of protection, one that frees you to do and ask things that may otherwise glare too imposingly.  

Almost exactly one-third of the way through this experience, I’ve become a proficient sungazer. So much so that just looking no longer satisfies me. I’m eager instead to test limits, to see just how long I can hold the stare. The toll for looking directly into the sun is levied in hard questions: “What have I learned?” “How have I changed?” “In what ways do I want to shape the rest of this once-in-a-lifetime experience?” 

The most honest answer to ‘what have I learned?’ is that I framed my project incorrectly (and that it is not only okay, but wise, to acknowledge these sorts of things). As proposed, “through participant observation, interviews, and volunteer experiences, I [and my project] will explore how the notion of a “dignified death” is socially and medically constructed.” As written, this endeavor rested on two assumptions: (1) that palliative care, the medical lens through which I planned to approach the topic, was largely only concerned with end-of-life issues; (2) that notions of dignity and a ‘good death’ would vary greatly depending on culture and norms.

Both assumptions are only somewhat true. 

And continuing with the trend, the revision of my assumptions was not the result of engaging directly with my project how I had envisioned. Instead, it stemmed from doing something entirely basic and almost deceptively simple: just talking to people.

In the last few weeks that I spent with Pallium India, I worked with one of the staff members to coordinate a social media campaign aimed at inciting interest for World Hospice and Palliative Care Day. Together, we asked some staff members the question, “Why is palliative care important to you?” and then posted the response on Pallium’s social media pages. From personal anecdotes about a family member’s experience with palliative care to detailing the importance of the educational and vocational support programs provided to Pallium India’s patients, the answers revealed not just the range of personal experiences the staff had with palliative care, but the sheer breadth of how what is defined as ‘palliative care’ can be imagined. 

One of the responses to the question ‘Why is palliative care important to you?’

Even though palliative care is perhaps most often provided to individuals at or near death, to imagine it only as end-of-life care is to hugely discount both the vision and the existing work of the discipline (particularly in countries where the notion of ‘palliative care’ is still being developed and defined). 

First assumption, debunked. Now, onto the second.

In August, when feeling like I wasn’t ‘doing enough’ for my project, I decided to start asking individuals I met on the street three questions about death. Some may have noticed the dispatches from this project on the sidebar of this site; I’ve also written about the impetus behind it here.

I’m not sure what I expected when I started talking to strangers about death; however, what I didn’t expect was that so many of the answers would be so similar. That, when answering the questions, people would mostly speak of their desire to live life fully, to feel loved, and note that they do not fear death itself, rather the potential of dying in pain. 

One of the posts displaying an individual’s answers to the three questions about death

So, while it’s true that cultural and social norms may dictate how we understand and express ourselves surrounding serious illness and death, these differences don’t equate to radically divergent emotions or desires which underpin those experiences. 

Second assumption, also debunked. 

This raises an important (and hard) question: am I really going around the world to conclude that we all generally want the same things—to love, to be loved, to feel valued, to be free of pain?

Maybe. It’s too early to tell. But it’s not yet too late to allow this insight to remold my experience. 

Instead of asking how culture and norms impact approaches to death and dying, I’m beginning to ask how, within different contexts, can serious illness and death be approached in a way that upholds those basic desires that we all seem to share. I’m also pondering how this discipline of palliative care, whose conceptualization now has a certain air of ephemerality to me, can be harnessed to promote compassion and dignity. 

I was recently asked how the experience of being a Watson Fellow has changed my own attitudes towards death. Like a palliative care clinician when asked if they have completed their own advance directives, my initial reaction was to take the defensive, to interpret the question as an accusation that my lack of personal forethought on a topic that I spent most of the day engaging with is an insinuation of my own intellectual ineptitude. 

After taking a moment to lower my guard, I said I wasn’t sure exactly how my thinking has changed but that life as a Watson Fellow is sort of like dying every few months. With each country change comes new a life—new cities, languages, cultures, cuisines, experiences, and people. It’s a privilege, this making and remaking. It can also be exhausting and, at least for me, a bit heartbreaking to tear up roots so often. 

I am sustained, however, by all the ways I’ve grown as a result of staring directly into the sun. 

Today is Diwali (Happy Diwali!), so I will be spending this week enjoying the festivities and doing a bit of traveling before beginning ‘work’ next week.

(Not so) Peripatetic Palliation

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.

A picture of one of the Pallium India home care vans I took during a day of home visits.

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