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. 

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.