Archit Baskaran, a recipient of the John and Martha Mabie Fellowship for Public Health Research, spent his summer researching the experiences of LGBT+ patients in Nepal. Archit says he ultimately wants to turn this research into a book and continue with this research as a career.
Tell us about your project. How did you decide to study this topic?
I was investigating Blue Diamond Society in Nepal and their hospice program for LGBTQ+ people. I was trying to elicit illness narratives from people who were receiving care, either hospice or palliative. I was also trying to figure out what types of programs they were running and the types of care they were providing. A lot of people in Nepal end up receiving quality care and feel comfortable opening up about their identities and problems.
I think it’s my fascination with death and mortality that sparked my interest in this topic. One of my close friends and debate coach passed away when I was a senior in high school. That really took a huge toll on me but it also catalyzed my interest in the medical maladies at the end of life. When I applied to college, my essay was about death and the ethics of mortality and how doctors treat patients in their last days.
Then I started reading about it. Atul Gawande, one of my role models, wrote a book called Being Mortal: Medicine and What Matters in the End investigating a lot of these topics. So I sent him an email about my interest and how I had this idea. I didn’t think he would reply but he ended up responding. I still remember, he responded January 3rd of this year. I knew at that point that I should definitely go for this. His email really gave me a lot of motivation. Eventually, what started as a Circumnavigator proposal got narrowed down and I decided to focus on Nepal. What they manage to do in Nepal is revolutionary—nobody has been able to do what they’re doing there, even in America I think.
Then I started my literature review and read over three hundred articles on whatever I could find. There was a meta-analysis that said there was something like twelve studies on this topic in the world. I tried looking up as many of those as I could and they even said: we need more data. For example, nobody has studied hospice care for trans people; it’s mostly been on gay and lesbian people and in America. So there was a huge knowledge gap.
How did your experience on the ground vary from your expectations?
The biggest thing that I think everybody knows about research is that there are so many unexpected variables that you cannot control for until you are there. To be honest, the organization is underfunded. It doesn’t have a lot of staff. It doesn’t really have a functioning website with enough details; it doesn’t even mention the hospice care program on the website. So finding out information was very difficult until I actually landed. The only way I could communicate with them was through email since it was a logistical hassle to try to call them and figure things out. Once I landed there, the biggest thing I noticed was that the hospice care program is more than just a hospice care program. It is a homeless shelter, it is a palliative care facility, it was a temporary resting place for children or old people, and it was also partly an orphanage. It was run by significantly fewer people than I thought. They didn’t have all the equipment that you would see in a Western-scale hospice facility like tracheotomy equipment. It was a very old building. All of these things were very shocking to me.
At that point, my research, which was just centered on end of life care, expanded in scope. I had to now talk about care in general. Some of the patients I interviewed were nearing the end of life but none of them were specifically in their last days, presumably. Two or three people I interviewed reported getting ill four to five times a month. The doctors I spoke to called it terminal HIV. Most of the narratives I elicited out of people at the end of life came from the people who cared for them and eventually saw them pass. They told me the entire life stories of those people and what happened to them from the day that they came in to the day that they died.
The biggest thing for me was arriving there and realizing that what I wanted exactly was not going to play out. It ended up being even better than I expected because once I got there, this health care program was doing more than giving hospice care to people, which allowed me to expand my research hypothesis. A lot of what I learned could even point to potential solutions for people in the West. Something I didn’t really realize going in was that we have a lot to learn.
What was your most meaningful experience abroad, and what did it teach you?
There was one hidden trans woman that I met in an outskirt village from the main city. It was in a remote area with high poverty rates. The compound where we were sitting was constructed from cow feces; it was just a very rotten environment that they were living in. In that environment, this woman was a farmer, still hidden obviously, and she was forcibly married by her family. She opened up about her whole life. Anything you could imagine that could possibly wrong in someone’s life had gone wrong in her life. It was a very saddening interview and at the end of the interview I asked if she could describe just one moment in her life when she experienced happiness. She said, “no, I can’t describe a moment where I felt happy.” She was also, based on the way she described her illness, nearing her end. When I left that area, I knew that I probably wouldn’t see her again. I didn’t have that same emotional feeling with a lot of others because I always said I was going to keep my distance but I really couldn’t with that one.
At the very end she said, “in my last days, if I could, I would try to buy a small shirt for my daughter but I can’t afford it.” I learned a lot from her, because she spoke about all of the things that everyone else had spoken about and more. She was one person telling me everything that was wrong with the system in both a social and institutional sense. I got a lot of narrative from that especially.
What do you plan to do with this research moving forward?
I think that experience is what inspired my goal afterwards. Initially when I was going in, I didn’t know exactly what I wanted to do with all of this. I knew I wanted to approach somebody and analyze it and maybe work towards a study of sorts. But that interview in particular changed my outlook. Instead of only restricting it to academia, I kind of wanted a general readership for a lot of this. I mean people suffer around the world but people don’t even know about what this organization has been doing or even that fact that there is something called LGBTQI hospice care. Then the idea for a book came in and that’s what I am talking to Professor Locke about. That’s the long-term goal right now. I started writing and I don’t know if it will go anywhere.
Basically I want to empower their voices by telling their stories through their words. It will be their words. If it’s translated into English it’s not a hundred percent but it conveys their meaning to the best possible ability.
How has your summer experience impacted your future goals and interests at Northwestern or after?
I am going to start medical school next year. Once I am there, this is what I’m planning on doing—longitudinal research. I think this is what I want to do with my life.
Also, I ended applying to Fulbright by taking a segment of this and expanding upon it. I chose to write a proposal about transgender people and their health disparities both in palliative and hospice care. My data did not uncover too much on this topic and there’s a lot to be researched there.
The second short-term thing was that I was able to meet the hospice care professor at Feinberg. He has agreed to be a mentor for this project. We’re going to analyze the transcripts and everything together, provided I get my IRB approval for that.
Do you have any advice for students wishing to conduct research in an unfamiliar location?
I think cultural competency is of prime importance. It’s very easy growing up in a Western society, America specifically, going to Northwestern, to embrace a neo-colonial mindset of the savior complex. Their culture in many ways is rich and it adds to our knowledge. I think embracing the growth mindset instead of the helping mindset is hugely important. I have to admit that when this first came up, I was in this paradigm of I want to go to developing countries and help people there. Especially Nepal shows me how much we lag in even just a general understanding of rights and how we can provide for people who are marginalized. I think that’s the biggest thing. And on that note, the cultural competency thing is important. Before going into these places, it’s vital that people at least try to understand what they’re getting themselves into and not be that dumb tourist who goes in very uninformed and ends up offending somebody.
Lastly, when you are there, try to expose yourself as much as you can to different events and people. I would regularly try meeting people on the weekends that I didn’t really know. I would spend personal time with the people in the organization outside the research time, which is why I think the research was so successful. Especially as a foreigner, there is a weird dynamic of, I’m the researcher and you’re the research subject. But I used to go out with them to the tourist district and we would go shopping together, watch concerts together, I would just go with them to hang out. And there would be days I didn’t do anything for the research but would just go to spend time with them. Building those relationships definitely helped me surpass my research goals in the end.