Two Months Sans Palliative Care

After spending six weeks in Auckland, I’ve headed to the South Island for a few days of exploring and enjoying its natural beauty. 

I’ve done New Zealand differently than I’ve done anywhere else this year. 

Rather than chasing down different organizations whose work I was interested in, furiously interviewing individuals who may help me understand how palliative care is established in that place, and frequently changing locations, I didn’t leave Auckland proper for six weeks, didn’t interview a single person, and wasn’t even technically involved in ‘palliative care.’ 

Rather than working on my project, I just took a six-week vacation in one of the most beautiful countries in the world! (Kidding! Though at times even a short trip to a beach in Auckland felt like a full-blown getaway). 

The evidence: a beach 15 minutes from my house in Auckland. 

As I mentioned in the last post, I spent most of my time in Auckland volunteering as a hospital companion, a role in which the volunteering individual provides support to patients admitted to the hospital through talking, playing games, or doing just about whatever else the patient may need. The wards that I volunteered on were dedicated to the rehabilitation of individuals who had had a stroke, serving people experiencing dementia or delirium, or supporting soon-to-be mothers undergoing prenatal complications. True that some of these patients may have been simultaneously followed by the hospital’s palliative care team, though I was not privy to that information. This work, which may seem like a deviation from my project as proposed, actually represents an evolution of my topic: as I’ve wondered what palliative care is and why it matters, a burgeoning topic of interest has become thinking about the balance between curing and healing in the medical encounter.   

Linguistically, curing and healing are quite similar. Both are colloquially used to signify the process of recovery from illness or injury.  

In actuality, curing and healing are quite distinct. 

Delineating the difference between curing and healing was not an insight from my Watson, but rather a hard-earned insight I went into this year with. Whilst enduring the multi-year process of rehabilitating a torn ACL and meniscus sustained during my junior year of college, I began to realize that while the surgery and subsequent physical therapy were a means to ‘curing’ my injury, the process of healing from it—regaining confidence in my knee, learning to relive in my world with limited mobility, finding activities outside of sport or physical exertion that provided me with a sense of meaning and vigor, shaking the complicated mix of anxiety and grief that pervaded thereafter—was a much different, more circuitous endeavor. 

One of the best answers that I’ve come up with to explain the importance of palliative care is that, in a medical world hyper focused on curing, it attempts to shift the focus back towards healing. However, despite being an answer that I believe to be true, this thinking is not without its criticism. The criticism (which, in my opinion, is one of the strongest critical views of palliative care) is that in its effort to shift the focus beyond purely curative medicine, palliative care has unknowingly assumed itself to the sole provider of compassionate, healing-centric care. Basically, if we imagine curative medicine and healing-focus medicine in a game of tug-of-war, each striving to be the predominate value system in the provisioning of care, those that espouse this criticism would say that rather than jumping to aid healing-focused medicine’s side, palliative care has engaged in an entirely different game of tug-of-war to see whether it or the other clinical disciplines should be the purveyor of healing.

My feelings on this argument are ambivalent at best. As a non-clinician observer who has spent the better part of year seeing all the different ways this palliative care thing comes to be understood and defined, it is difficult to decide where I stand on the matter, particularly in the abstract, devoid of any situational context. However, in the spirit of the Watson and all its freedom, I decided to spend my time in New Zealand seeing how the ethos of palliative care (dignity, respect, and compassion for all afflicted by serious health related suffering) is cultivated sans palliative care. What better way to do that than volunteer in a role whose position description is quite literally to engage with patients in a variety of ways characterized always by a spirit of dignity, respect, and compassion? 

Being a presence on the hospital floors every day for six weeks allowed me to learn the unique rhythm of the wards. By the end of my tenure I could, with a fair degree of accuracy, guage what time it was by taking note of where the rounding doctors stood in the ward, which patients were being taken to various appointments, or how many rooms the tea cart had already visited.   

I’ve since left Auckland, allowing some time to hike in the South Island before moving onward to the next country. The nagging question ‘so what did I learn from all of that’ has been a near constant companion on my otherwise solo treks. Now, at eight months into the Watson, the finish line in frighteningly close sight, I find myself wondering in a general sense what I’ve learned from all of this and how it has changed me. I sometimes try to list out all the things I’ve learned in my mind, line them up as if they were mere items on some sort of personal growth CV. Though, if I’m being honest with myself, the immensity of the change that I’ve underwent is impossible to quantify, impossible to record. 

It just is. 

And yet, in my innocent way of being human, that knowledge doesn’t stop the part of me that loves numbers and quantification (the part that, to many people’s dismay after I explain my project, had me study economics and math in college) from trying to do so. 

I’m six haircuts, two hair colors, one nose ring, four plain grey shirts, and five countries from the me that last touched US soil. 

I’m also five days away from seeing my family and best friend for the first time since last July. 

And that makes me nervous, 

because if I’ve travelled all these miles, seen all of these things, lived out of just these two bags for all this time, what does it mean to go back to something as familiar as the people I grew up with? To the individuals cast as leads in the all-important, ceaseless drama that is “My very big and very important life”?   

(Tangentially: If I feel this way now, how will I feel when the Watson is officially over? Is it possible that this year has only fed my love for existentialism and the unique sort of distress that it inspires?) 

Distractingly, here’s a picture from one of my hikes this week. 

I’ve become very good at saying ‘I don’t know’ this year. I also think ‘I don’t know’ is the most truthful answer to my ramblings above. However, I do think that I have an answer to what was learned from my time as a hospital companion and think that it may also be an answer to my musings. 

It became very clear to me very quickly while volunteering that indeed palliative care is not the only discipline concerned with healing—that clinicians across the spectrum of specialties are also concerned with the whole person (shocking !)—but the choice to keep the whole person in focus must be a deliberate, conscious one when so many factors (whether that be time pressures, norms, name your favorite constraint here, etc) are encouraging otherwise. Palliative care just so happens to be a discipline whose guiding value is to do just that, to keep the whole person in focus. So, analogously in my view, it just so happens that proportionally more clinicians trained in palliative care are thinking of the whole person than clinicians trained in other disciplines.

But here’s the fun part: change away from previously predominate values or qualities can be encouraged in any setting, by any person, so long as a sustained, deliberate effort is made to do so. 

I am now starting to think about why, if it is the case that dignity, respect, and compassion can be fostered in any setting, it seems as if modern medicine has moved away from them as guiding principles. But, before that, I’ll head to Toronto to spend a week on vacation with family. I’ll pick things back up (in Spanish!) when I land in Colombia in early March. 

Something different

This post is different from the others that have appeared previously. Much like last month, I’ve struggled to sit and synthesize the past few weeks. So, rather than forcing something, I’m going to share three poems I’ve written this year which I feel capture distinct, important moments from this experience along with a brief update covering my project-related work here in New Zealand.

Project Update: I decided to spend almost all of my time in New Zealand in Auckland whilst engaging with the same two organizations, splitting my time between volunteering as a hospital companion (a role that essentially means I get to walk through the wards and be companionable to the patients admitted there) and poking around a university’s palliative care research group. Volunteering and researching are a return to my roots in some ways; my life as it relates to palliative care now is largely the same as it was exactly a year ago in Boston. I was aware that my arrival to New Zealand marked a return to the familiar: I’d be doing volunteer work similar to that I’ve done in the past, able to take advantage of a university research environment, and be back in a county where English is the predominately spoken language. I worried that all of this familiarity wouldn’t stoke growth in the same way the change I’ve experienced thus far has, but what I neglected to realize was that the familiar provides a basis for comparison. It’s almost as if after seven months of diligently honing my skills, I finally have a chance to utilize them.

Wednesday Afternoon
He’s translating the form twice over.
Greek to Farsi,
Farsi to French.
Just like the girls,
the young girls whose hair has just been covered,
just like they do when I say:
Don’t Hit!
Don’t Fight!
i know.
i’m sorry.
Mytilene, Lesvos (August 2019)

Untitled
It’s this thing called life, you will
know it by its seriousness. By sneakers whose
souls are made black by city streets, but lose
any pep in steps when feet toil
when they drag against ankles. Mile
after mile wondering why yours won’t bruise
but his, that man you see, who only gets to choose:
park, corner, overpass? Why his don’t heal.

Give him your shoes, white and new.
But they’ll refuse to fit. Feet too worn
from the scraps scattered in the street. Torn
promises of change, of ideas that imbue
who he is and who you may become
all while neglecting the free in freedom.
Trivandrum, Kerala (October 2019)

Floating
I collect these ink stamps
with vigor
with a fervor. 

In eight years, 
eight impossibly definite years, 
they’ll be taken back. So I 

recall the sunsets, 
all the stories, 
every one of these miles

as if it would make
the ink indelible, 
inseparable, somehow. 

//

But really it was 
never
about any of that—

Not the Acropolis, 
Not the Channel, 
Not the Arabian Sea. 

Not the memories, 
not You, 
and hardly even Me. 

//

It’s been about floating
in dark water under
an even darker sky. 

About letting doting
drops fall, with no
worry of clouding my eye. 
Singapore (January 2020)

I will be based in Auckland through late February before heading to the South Island for a few days then onward to Colombia for most of the spring.

India was/India is

December was another month littered with travel. From Mumbai to Delhi, Delhi to Mumbai, Mumbai to Varanasi, Varanasi to Delhi, and finally from Delhi to Singapore, I can only hope that my refusal to eat meat will continue to counterbalance my existential distress over my carbon footprint. 

I’ve delayed writing this post for a while. It’s not been for lack of activity nor lack of stimulation. In the time since I penned the last update, I’ve shadowed a pediatric palliative care unit in Mumbai for a few weeks, attended a conference about the future of public health, travelled to Varanasi, and celebrated the holidays. 

There are actually numerous drafts of this post saved to my computer, each of which I scrapped for one reason or another—too much focus on the work, too much focus on my personal experience; too meandering, too pedantic; too much, too little. 

Writing has always been an outlet for me, a means for creation when comprehension fails. There’s a lot about India that didn’t make sense to me (many things that, in three months, would’ve been unrealistic for me to completely understand), so I wrote. A lot. However, regardless of how many words I spilled into Microsoft Word, each was spurned for its inability to cohere with the others and accurately convey my experience. 

It wasn’t until late last night as I replayed my memories in the liminal space between wake and sleep, did I realize that my time resists synthesis because it largely existed in fragments. 

India was a place that completely upended my understanding of palliative care. 
India was a place whose chaos and cacophony often left me enervated. 
India was a place that I stayed a month longer than I originally intended.  
India was a place whose current political situation is equally heartbreaking and terrifying.
India was a place where I made friends that continue to inspire me. 
India was a place that pushed my boundaries, that forced me to be more open and understanding. 

India was all of those things, but it also still is. It is a place that is nuanced, layered, and difficult to make sense of; it is a place I that miss. 

A picture of the River Ganges from one of the ghats in Varanasi

I spoke with an American physician who has worked extensively in India a few days after my arrival in September. He offered advice and suggestions for things to do near where I was staying, he also cautioned that the country could be extremely frustrating. Naïve (and nervous), I laughed at that, a reaction which lead him to explain that he’d once read a book about an Australian couple who lived in India for years yet, when boarding the flight back home, flipped the country the bird out of exasperation.

He assured me that he did not flip India the bird, though he’d come close. 

And so, I’ve had trouble writing because as I boarded my plane, I had the simultaneous urge to give India the middle finger and to run off the air bridge, out of the airport, and back to all that I’d started there. 

When comparing palliative care in the UK to Greece I wrote, “If my project in Greece was a matter of trying to locate disparate puzzle pieces to put together a cohesive image, my project in the UK is a matter of looking at a mostly completed puzzle and trying to understand how it was pieced together.” Continuing with the analogy, my project in India was largely a matter forsaking my fluency in puzzles to learn instead how to solve a rubix cube. A rubix cube is not inherently more difficult to solve than a puzzle, though it certainly is if you’ve only ever solved puzzles and have the cube thrusted into your hand with minimal explanation. 

The rules that govern are just different. 

To understand how palliative care is provided to individuals in India, I had to struggle to understand, among many many others things, why palliative care services take such a different shape than elsewhere that I’ve seen, how communal culture impacts medical decision making, why intersections of identity (which dictate, even if only subtlety, how care is provided in most places) really dictate how it is provided in India. 

An interlude before the punchline: the tiny Christmas tree that my friend and I adored with gifts

To be entirely honest, as I write this, I’m still not sure where all of these experiences leave me. I have thought a lot about something a psychologist I shadowed for a while said to me when chatting about the importance of palliative care, “There is not always a cure, but there is always an opportunity to heal.” 

As readers of this blog will know, the last two posts have struggled with the realizations that: (1) we all generally want the same things—to love, to be loved, to feel valued, to be free of pain and (2) that experiences, particularly unfamiliar or overwhelming ones, can be made manageable, easy even, when we are met with kindness and compassion. I’ve wondered out loud if I really needed a trip around the world to realize those things; to conclude at the halfway mark of the most immense opportunity of my life that we just need to do a better job being beings felt a little unsatisfactory. 

In my last few days in India, as I allowed a bit of time for rest over the holidays, I began to think differently. Rather than accusatorially asking myself ‘did I really need a trip around the world to realize those things,’ I began to question ‘why has a trip around the world spurred those realizations?’

I now wonder if this trip around the world has spurred these realizations because it’s the first time there’s been no pressure for an answer or a cure, no pressure to immediately understand all that is in front of me. Instead, it’s the first time I’ve been able to think deeply about curing’s elusive and enduring cousin, healing.

In some ways I’ve always been aware of the omnipresent opportunity for healing—intellectually, theoretically—but now I know it differently, know it as a part of my constitution rather than my consciousness. India, I believe, is largely to thank for that. 

I am spending a few days in Singapore for a short vacation before heading onward to New Zealand where I will be based through March. 

Watson Magic

I’ve been all over India since the last update, traveling to Rajasthan (vacation), Bangalore (conference), back to Kerala (convenient stop-over that afforded a few days for administrative work), and lastly to Mumbai (to shadow a pediatric palliative care team for two weeks).

In recent months, I’ve been drawn towards memoirs recounting thru-hikes and mountain climbing expeditions. Though I’ve always indulged the idea of one day completing a long distance thru-hike, at present there’s something about the narrative of a transformative, personal journey that resonates (wink).

Beyond describing all the ways one grows after living life out of a backpack and with only a few changes of clothes (I, for the record, have a few changes more than just a few changes of clothes), integral to any thru-hike tail are the instances of ‘trail magic.’ The Appalachian Trail Conservancy defines trail magic as, “an unexpected act of kindness, [that] is a quintessential part of the Appalachian Trail experience for many long-distance hikers.” Trail magic is unpredictable, unannounced, often exactly what you needed when you didn’t even realize how much you needed it. I’m convinced that this sort of serendipity isn’t limited to those on the trail—there also seems to be a special type of ephemeral providence that punctuates this experience. 

The most recent and almost unimageable instance of ‘Watson magic’ came by way of a familiar accent. On a whim, I booked a ticket from New Delhi to Bangalore two days after learning about a conference entitled ‘Death and Dying in India: Navigating the Maze’ set to take place four days later. I had made a strong connection with an NGO that provides home-based palliative care—and had even spent a few days shadowing them— but I was beginning to feel restless. Much of what I would be doing with that NGO was similar to what I had just spent a month experiencing in Kerala; and, though there are many differences between Delhi and Kerala that could have led to fruitful investigation, once I caught myself naively thinking ‘I’m not sure there is much more I need to learn about palliative care in India,’ I knew it was time to start looking down other avenues. 

As I settled into my seat at the conference, behind me I heard whisper in an unmistakably American accent. Almost subconsciously, I turned around and asked, “Where are you from?”

“Pennsylvania,” she responded. 

“Oh, I’m from Ohio!” I answered, somewhat surprised to have found someone not only from a neighboring state, but who also appeared to be approximately my own age. 

We continued chatting, uncovering that she had actually also lived in Ohio for a period of time, but most recently found herself based in South America. Then, for reasons I still can’t quite understand, I said to her, “You’re a Watson Fellow?!” 

“Yes!” she responded, equal parts surprised and confused at my ability to somehow identify her. 

Watson magic. 

There are very few rules to the Watson Fellowship, though one that they stress is to refrain from connecting with other fellows during the year. The idea behind this rule, I believe, is to guard against the very human tendency to compare. This year is all about learning to calibrate your own compass then to follow it confidently; seeing how another is engaging in the same task (particularly in a moment of self-doubt) runs the risk of distorting your own sense of direction. 

However, when you’ve met one of the only forty other individuals in the world—who could be anywhere in the world—engaging in the very same intense journey that you are, it’s impossible not to ‘talk shop.’ We spoke of our projects, but more so about what it means to be a Watson Fellow, about recognizing that you are living a year that is equally incredible and difficult; about acknowledging the extreme privilege inherent to this opportunity and the perceived burden felt to rectify it. 

Despite allowing our time together to drag out just a bit longer than we perhaps should have, we eventually partook in the ritual we’ve both come to know too well this year: saying goodbye. As we lingered in the doorway, exchanging an elongated farewell and promise to compare notes again at the returning fellow’s conference in August, we agreed that meeting each other had been ‘a nice break,’ verbiage that I didn’t think much of in the moment, but have thought much of in the time thereafter.  

‘A nice break’ implies respite, relief from the learned rhythm—or the lack thereof. In wondering what was meant by it, I was reminded of a conversation I had with a British expat while traveling with my friend in Rajasthan. She’d been living in India for two years but was eager to talk about how I’d been adjusting after two months. With a bit (too much) gusto, I told her that while I was certainly overwhelmed the first day—something I attributed mostly to having not slept for about 24 hours en route to India yet still choosing to start work the same day—since then I’d felt the transition was quite easy.

Perhaps put off by my cavalier attitude, she pushed back, asking the question again but with a bit of an accusatory tone. Feeling defensive, I doubled down on my initial response. Sensing a point of tension, we wisely let our conversation fade into the larger one being had by the group. Worried that I’d come off as arrogant or just plain ignorant, I leaned back onto my elbows, giving myself space to think. While reclining, I could see the molten flicker of my friend’s cigarette out of the corner of my eye, the same friend who’d coordinate this entire trip to Rajasthan, carefully crafted our itinerary based on my interests, and had been consistently checking in to make sure I was enjoying myself. 

In that moment, I realized that I haven’t felt overwhelmed because I haven’t been doing this alone. Due to good luck (or a bit of Watson magic), since arriving in India I’ve met, or been introduced to people, who have been extraordinary generous with their advice, their time, and their care.

A picture I took just outside of Pushkar, Rajasthan

With every new project-related opportunity I’ve been asking myself the same question: ‘Why does palliative care matter?’ Asking this question allows me to think critically about what palliative care is and what good it does, probing that I hope comes to guide some of the work I do in the future. 

As I’ve argued before, I think palliative care matters largely because what it is and what it provides can be tailored dependent on an individual’s needs in that moment (though always limited by available resources), even and especially when those needs are outside of the scope of traditional curative medicine.  However, the two conversations I recounted reminded me of another reason why palliative care matters: it facilitates, as my friends in India have done for me, a ‘soft landing.’ 

I can’t take credit for coining the term ‘soft landing,’ its rights belong to a friend who has often reminded me to think of ways to land softly when I switch countries or settings. Controlled landings are important because they prevent against the worst—a crash landing—while also mitigating peripheral damage. Palliative care can do this for individuals when a diagnosis makes a crash landing seem like the only possible outcome through working to rewrite their story, to define their goals, and, often, just begin to understand what is happening.

Last post I wondered, “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?” I’d be lying if I said I didn’t feel a similar worry while writing this post: am I really going around the world to discover experiences, particularly unfamiliar or overwhelming ones, can be made manageable, easy even, we are met with kindness and compassion?  Does it take a trip around the world to realize that? Does it take a separate discipline within medicine expressly dedicated to those values to integrate them widely into care?

The answers to each of those questions is a definitive yes-no. Yes, you sometimes need the nudge from outside to challenge latent, guiding norms; no, needing a nudge doesn’t imply that those norms are inherently bad or incongruous with what the nudge hopes to accomplish.

There is always much more that I’ve learned and thought about than I can ever include in a post, so I’ve used this space as a place for me to wrestle with the difficult topics or questions that emerge. Some are eloquent, some (like this one) seem to ramble. Either way, it’s my hope that they do this experience even 1/10th of the justice its magic deserves.

I’m just finishing my two weeks in Bombay, heading next up to New Delhi and then Varanasi. It’s hard to believe that I have less than a month left in India and that my original itinerary had me in Australia by now.

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

Navigating the Valley

Since arriving in the UK, I’ve spent time in London, Bath, and Dorset County.  

My time in the United Kingdom can be best described as a whirlwind. Before I’d even stepped off of my flight at London Heathrow three weeks ago, I knew a shifting of gears would be necessary. Rather than arriving and immediately navigating to an unknown place to be greet by strangers, I headed directly to a house rented by my grandparents who would be visiting for about a week. No scrounging for dinner or awkward small talk upon this arrival—just the pile of clothes from home and known faces. 

Transitioning to the UK also marked a significant change for my project. Unlike Greece which is in the preliminary stages of palliative care development, the UK is the birthplace of many of the ideas integral to palliative care as commonly understood. If my project in Greece was a matter of trying to locate disparate puzzle pieces to put together a cohesive image, my project in the UK is a matter of looking at a mostly completed puzzle and trying to understand how it was pieced together. 

Ostensibly, this makes my work here ‘easier.’ In reality, I’ve struggled to navigate as I’ve felt pulled in many directions.

To put it into perspective just how many ways I could have taken my project in the UK, here is a list of all that I have done while here: 

  • Attended…
    • A Death Café 
    • The garden of a hospice for its open afternoon 
    • A poetry event put on by a public health commission 
    • Two conferences
  • Spoken with…
    • A poet who works with individuals with dementia and their caregivers 
    • Academics who work at the intersection of death and either art, humanities, philosophy, or education 
    • More than a handful of clinicians—doctors, social workers, etc. 
    • The fundraising and marketing team of a hospice 
    • Many more who I am forgetting to include 
  • Participated in…
    • A one-day conference on broadening the LGBT Health Care agenda 
    • A four-day conference on the social context of death, dying, and disposal 
    • A poetry workshop 
    • The Summer Fete of a hospice organization—both as a volunteer and attendee 
  • Plan to (in the few days before I leave)…
    • Interview individuals about the foundations of the Death Café movement 
    • Spend an afternoon with an author who is writing a book about death festivals 
    • Be given a tour and a chance to interview folks at the oldest hospice in the UK 
    • Enjoy the last bits of cooler weather that I’ll feel until I return to Europe in March 
  • Been struck by…
    • A cold! My first this year which kept me in bed for two full days
    • The first ‘valley’ of this experience 

Things have been… crazy. Though the list above may make it hard to believe, I’ve regretfully had to turn down a number of opportunities. I’ve struggled to write this due to the sheer amount of learning that has taken place in such a short amount of time. I could write an entire blog about all of my experiences over the past three weeks, but instead I am going to take this one in a different, more personal direction: the first ‘valley.’ 

Before that, here’s a touristy photo I took outside of Windsor Castle while with my grandparents

In the time leading up to the Watson, when people would ask me how I felt about the impending journey, I would overconfidently assure that it would be a series of ‘peaks and valleys.’ If I could keep sight of that, I would be okay. 

I’d been keeping sight of it, but now I’ve also lived it. 

Greece was an extended peak. The country is gorgeous, organizations were very willing to accommodate my work, I quickly made friends. It was the perfect place to start this trip—just different enough to force me to stretch, yet similar enough that I could relish in familiarity when needed. My time there bolstered my confidence in a big way. 

Then came London. 

You wouldn’t expect London—with American creatures comforts and its resemblance to Boston—to be the place where I first floundered. Oh, but floundered I did. 

I really can’t explain how it all unraveled. Maybe it was seeing my family for the first since I started the trip, maybe I was a bit too ambitious scheduling six straight days of conferences immediately after five straight days of ‘vacation’ immediately after making my first country change, maybe I should have been more deliberate in choosing a direction to take my project beforehand rather than figuring it out upon arrival. It was likely a mix of all of those things, but all I really know is that I spent a few days walking around with two main thoughts: (1) how can I sustain this for nine more months?; (2) what would happen if, on July 1, 2020, I returned to the Boston Logan International Airport, laid on the ground, and never got up? 

My two thoughts were irrational (though imagining the second often made me laugh), and I recognized in the moment that they were an indication that I was in one of the inevitable lows that this year would bring. There are so many ‘maybes’ that may have contributed, though instead here I am going to focus on what got me out of the low.  

I had previously scheduled myself to spend the week down in Dorset county, a coastal region of country renowned for its natural beauty. In Dorset, I would learn from a poet who hosts workshops for individuals with dementia and their caregivers, and then spend two days with individuals at the Weldmar Hospicecare Trust—one interviewing with people from their marketing, fundraising, and operations teams, the other volunteering at their annual Summer Fete. 

Since poetry, marketing, and fundraising are not worlds that I typically spend much time in, I was excited to see how they may enrich my project. Admittedly, I was also anxious to leave London. The city, while endlessly fascinating and always buzzing, enervated me.

Dorset, however, was the perfect antidote. Looking down different project-related avenues awoke a sense of curiosity whilst my understanding of my project and its boundaries expanded. I was also inspired by the sense of purpose and community palpable in Dorset County surrounding Weldmar. 

As I’ve come to learn, many hospices in the UK are funded dually by state and charitable contributions. Both are important sources of funding, though money from the charitable contributions is more versatile, allowing the hospice to provide services such as art therapy or day centers with social activities. The more funding that is brought in through charitable contributions, the more ‘value-added’ type activities the hospice can provide. Hospices also serve a particular area, only admitting patients who live in that region or have a GP that practices within in it. This puts the hospices in an interesting position: in order to provide all of the ‘value-added’ services (which can and do make a big difference), they need to be well-supported by the community; in order for the community to support the hospice, they must know about it, believe it its mission, and not just see it as a ‘death house;’ in order for community members to believe in the hospice, the hospice must be highly visible and rely on word of mouth praise regarding its service.

If that seems confusing, it’s because it is. I’ve interviewed many people that work in the field and still feel like my understanding is shaky. Put simply (and over generally) it means that hospices often need to put on events that make them visible to the public and raise money. One such event is Weldmar’s annual Summer Fete, where I was set to volunteer. Held at Weldmar’s hospice house, this traditional English Summer Fete comes complete with carnival-like games, music, and a grassy yard full of stalls selling various items. The atmosphere was completely jovial, my time there even more so. I spent the day chasing after balls from the Coconut Shy game where I was stationed with a new thought populating my consciousness, “This is the exact sort of atmosphere you’d want surrounding a hospice, and exactly where I needed to be.”

It’s difficult for me to put into words what exactly about my time in Dorset and with Weldmar changed my perspective. Certainly it was important for me to give time to time to get through the low. The closest I can come to explaining it is through acknowledging how special it is to be a part of something that is not only believed in by the community, but also believes in the community.

Upon returning to London from Dorset, I felt reinvigorated. I am grateful for this short amount of time in the UK; for all it has afforded me, personally and intellectually. It’s because of experiences like mine here that I am learning to look in the unexpected places. To trust the voice inside me that nudges, “open yourself and this will open to you.” 

The sky literally did open to me during one of the walks I took along the coast in Dorset county. It was a profound moment for me.

On Thursday I fly to India where I will be based through late November. Amazingly, I am about a quarter of the way through this year.