There's No Such Thing As Strangers

Although it feels like I just landed in India, I have just rounded the corner on the halfway mark of my time here. When I was planning this portion of my trip, I always knew the time would fly – not only is February a short month, but India is my shortest stay out of anywhere I am living this year. I already know my future will hold a return trip to Thiruvananthapuram, Kerala, and to Pallium India, the organization I have been working with during my stay. I figure with half of my time here gone, I had to get in at least one blog post before monthly review and it had to be about Pallium itself and all the amazing things they are doing. I would be remiss if I didn’t explain Pallium and all the work they are doing, but I’ve included my reflections on what I’ve learned so far at the end if you want to skip there instead. And this time I might be onto something. Stay tuned.

The Story of Pallium India

Pallium India is a charitable trust that was founded in 2003 by Dr. M.R. Rajagopal. In medical school, Dr. Raj studied to be an anesthetist. He described himself as quiet but I would argue more that he was observant, watching the way the system around him worked – or rather did not work. In his role in anesthesiology, Dr. Raj witnessed lots of pain, specifically within India’s government (public) health system which was overburdened and under-resourced. When he could, Dr. Raj would spend a few extra moments with the patients who were experiencing extreme or chronic pain. He would listen to their complaints, of course, but it seemed he had a talent for eliciting their stories. The more he was let into the inner lives of people in constant pain or at the end of life, the more Dr. Raj felt called to this population. As a child, Dr. Raj read most of Mahatma Gandhi’s published works and was moved by his attention to the unnoticed, to those who had been cast aside. In his own life as a doctor, he couldn’t help but draw parallels from the class system discussed by Gandhi to those who were incurably dying or in pain in the medical system. Slowly, it became his life’s mission to serve this population of people, no matter their status or caste.

In 1993, Dr. Raj convened a group of stakeholders who also cared about this mission and established the Pain and Palliative Care Society of India. The values of this organization were deeply embedded in access, education (training), and community. As the project progressed, it was recognized as a WHO demonstration site and currently is a model for palliative care generally as it has transformed into the biggest palliative care system in the country, now known as the Institute for Palliative Medicine. One of the biggest barriers to palliative care in India during the project’s conception was access to opioids. Archaic and strict laws prohibited narcotic or psychotropic drugs from being available in India. Over many years, through lobbying, advocacy, and global partnership, Dr. Raj helped to demonstrate the need for palliative medicine and opioid availability in India. As of today, there is a constant supply of morphine as a first-line pain agent throughout India.

In 2003, Dr. Raj returned to Trivandrum after spending time at the Institute; he felt it was time to bring his work home. With the help of colleagues who had taken up his cause, the Pallium India trust was established and the Trivandrum Institute of Palliative Sciences (TIPS) was established as the living home for Pallium’s work in training, education, clinical activity, and volunteer coordination. Pallium’s mission is simple – to provide quality palliative care to all of India such that no one suffers needlessly. Today, 21/29 states in India have a Pallium center and are spreading Pallium’s mission. As such, Pallium has not only become a recognized palliative center in India but all over the world for its success in setting up true community medicine. Dr. Raj has been honored numerous times for his work – most notably perhaps he received an award for Extraordinary Activism by the Human Rights Watch and was named one of the 30 most influential leaders in palliative medicine by the American Academy of Hospice and Palliative Medicine. After meeting Dr. Raj in person, I can confirm he is just one of those people who has it – and by it, I mean the vision and capacity to change the world and the face of medicine.

If you are interested at all in more of Dr. Raj’s story, or by anything you read in the rest of the post, I highly recommend you order Dr. Raj’s book Walk With the Weary; it is truly a beautiful story.

Pallium India’s Work

One of Pallium India's home care visit vans!

Pallium itself is much more than one person though. There are so many different branches of the Pallium Trust – a national policy branch, a research branch, a global outreach team, a resource mobilization team, as well as the hundreds of regional centers and facilitators that help train healthcare workers and set up palliative care clinics all over India. All of this work relies entirely on donations from charitable partners and organizations. 55 million Indians are pushed below the poverty line every year, with one of the most overwhelming contributors to said poverty being the expense of healthcare. Like the US in many ways, healthcare in India is focused on curative solutions at whatever cost. To separate itself from this system, Pallium vowed to make its services free to be able to serve all Indians, no matter their socioeconomic status.

The facilitation of this free care does not just come from monetary donations from those who can afford it or from outside India itself. Oppositely, Pallium believes that the root of palliative care is in the community. At Pallium, healthcare and community are inseparable, specifically when it comes to palliative and end-of-life care. Most of the work that Pallium does relies on volunteers from the community, a model that Dr. Raj sowed the seeds for many years ago. When he began his community palliative care work, Dr. Raj simply started by asking questions; he knew that an important part of his mission would be meeting people where they were, in whatever form home took for each individual. Oftentimes, Dr. Raj would trek to meet his patients and treat them from their homes. But as time went on, and more patients were added to the list, Dr. Raj began asking around for help, for people to keep an eye out for those who were seriously ill in their communities or for someone to walk with him to help him navigate the confusing backroads of coastal and rural Thiruvananthapuram. As he asked more and more, he found just how many people were willing to say yes and help for no other reason than being a part of a shared community.

Since the very first Pallium volunteer, the network has grown incredibly extensive. And it has to be considering the amount of activities Pallium runs on any given day. Pallium has five main treatment platforms: inpatient care, outpatient care, telehealth, a halfway home, and home care. Inpatient care operates from the Trivandrum Institute of Palliative Science, my home base this month. TIPS includes a 7-bed ward, two private rooms, one end-of-life care room, and an addition known as the halfway home. Patients get admitted to IP (inpatient) for one of three reasons: they are acutely ill and at the end of life and wish to die in hospital, they require supportive care, or to provide respite to caregivers. Supportive care encompasses the overwhelming majority of patients who are admitted to IP. Doctors in “the field” during homecare or outpatient care will identify patients who not only could benefit from acute symptom management or psychosocial assessment but whose caregivers (typically a family member) could benefit from education. See Pallium has a near-genius strategy – while the patient is admitted and receiving care to make them more comfortable, a family caregiver will be required to stay with them the entire time in the inpatient ward and receive education for symptom management from the nursing and doctor staff. In this way, when the patient’s symptoms are under control, they will get sent home and the rate of readmission decreases as caregivers are more able to manage their family member’s symptoms on their own. Patients can stay longer in the comfort of their own home and caregivers can feel more confident in their ability to provide for their loved one. Additionally, each day, the inpatient unit is also staffed with a volunteer from the community who acts as an integral member of the multi-disciplinary medical team (doctor, nurse, psychologist, physiotherapist, social worker, and volunteer). The volunteer attends all medical meetings and rounds on the patients with the team which is an extremely unique feature of Pallium as most places discourage the presence of non-medical “lay” volunteers integrated in such a way. However, here, the volunteer has the immensely important role of connecting the patient back to the community. They will sing with the patients in their free time, pray during prayer times, provide physical touch and companionship, and overall try to make Pallium feel more like a home. In turn, patients feel more cared for and are more resilient when facing challenges as they know an entire community is behind them.

The inpatient unit also houses a telehealth suite, which was utilized mainly during COVID-19 and kept around afterward because Pallium found it increases its reach. Now, if a patient does not need a homecare visit but has a question or if someone wants to register for Pallium services, it can all be done through telehealth for those who have access to the technology. The last special future of the inpatient unit is the halfway home, a special two-room area set up specifically for those recuperating from extensive spinal injuries. These are patients who will live at Pallium and receive intensive physiotherapy and pain management, while also receiving psychosocial support to be able to adjust to their new lived reality. Many will be wheelchair-bound or paralyzed for life and thus this space is designed for accessibility; patients can relearn how to clean themselves, cook for themselves, and even do vocational activities through which to earn money. Again, the goal in mind here is to send people home on a more permanent basis with more quality of life.

Outpatient care has the same main goal as inpatient care but it operates in government “link centers” around the region. A link center is a hospital that has allowed Pallium to run a clinic there at least once a week. These clinics are another unique feature of the type of medicine Pallium has set up. Instead of having to make an appointment wait for a home care visit or bring yourself or a family member to the hospital, patients and their families can attend one of these clinics. Clinics are staffed with a team consisting of at least a doctor, nurse, social worker, and physiotherapist but a psychologist is often involved as well. The magic of these outpatient care clinics is that they work to bridge this continuum of care that Pallium has built. If medicine is running low, or a new symptom has appeared, or your mental health is poorly, or your socioeconomic situation has worsened, the clinic is open to you. It is also at these clinics that patients who are candidates for inpatient care can be identified. In a perfect world, no one comes to the clinic because inpatient education and symptom management as well as homecare visits have done well in addressing all patient needs. However, outpatient care is there to fill in any gaps. It is a truly genius piece of the system.

Finally, and possibly most importantly, there are the homecare visits. Every day between 8:00 and 9:00 am, if you happen to be by the TIPS center, you will see fleets of vans exiting and heading off in all directions. Each van carries a nurse, a social worker, and a patient care assistant, and is packed full with enough palliative medications and medical equipment to make it a moving clinic. Many times, when available, a doctor will join them. The vans will head off to different assigned regions, up to an hour away from the center itself, and when they reach their regions, they will likely be picking up a volunteer. This volunteer calls this region home, knows the inner workings of the streets and homes, and can help navigate the team to any home in which they are needed. These volunteers act as a “foot in the door” helping families feel comfortable letting the team into their homes and helping the team to facilitate quality care in hard-to-reach places. Home visits are a chance for doctors or nurses to assess patients every month at least. Think about the last time at home you got to see a doctor every month, it’s nearly impossible to schedule appointments 6 months out. In the home, nurses/doctors can address any new symptoms with new prescriptions, ensure old prescriptions are refilled, take vitals and blood sugar work, and even do procedures like wound dressings or catheter changes. Social workers can get a better sense of the home environment and any physical challenges it may pose since so many of Pallium’s patients are living below the poverty line. Additionally, the psychosocial status of both patients and family members can be addressed since being invited into someone’s private home also means inviting them to witness the intricate and complicated nature of family dynamics. I can’t stress enough the network created through this type of care. It also prevents any patient, regardless of status, from slipping through the cracks – everyone gets seen, and every single Friday, nurses who work in the community return to the TIPS center to report if any patients at home should be moved inpatient. Home care is the piece of the puzzle that makes Pallium run the way it does, that keeps medicine within the community and for the community.

All the "go bags" filled with medicine and medical equipment for home visits.

 There’s No Such Thing as a Stranger 

My time thus far with Pallium has been eye-opening in so many ways and I couldn’t think of a more creatively intuitive model of palliative and end-of-life care to learn from. Being welcomed as part of the multi-disciplinary team means I have spent intimate time with patients; most often, this occurs at their family homes, where I am accepted without question. Like so many of the other places I’ve been and worked, Pallium has provided so much insight into my project but more importantly, it has gotten me to ask new questions.

Last week, there was a particularly emotionally challenging case. I was working with the Palode home care team that travels about an hour from Pallium to reach the Palode region and the patients that live there. One of these patients was a four-year-old boy who I was told had advanced cerebral palsy. Having spent so much time at Butterfly Palliative Care home with children with severe CP, I thought I was prepared for what I was going to find at this little boy’s home. Our van pulled over on a dirt path with no houses in sight and the team hopped out and grabbed their various “go” bags filled with medications and equipment. We started down the path, which led to a mountainous forest area filled with rubber and cocoa trees. It was jaw-droppingly beautiful and also impossible to navigate without our Palode volunteer who knew the area like the back of his hand. We followed him for what felt like at least 20 minutes, hiking up toward an eventual end point I had yet to identify. Then, in front of me, appeared a concrete box that was open on two of its sides except for some hastily hung cloths. A small puppy that was all skin and bones lay at the entrance. At the sound of our footsteps, two heads, a young man and woman, peaked out from behind the cloth and beckoned towards us. It dawned on me then that I was entering the home of our patient. The house was a single room, with a mat-like bed on the floor on which the four-year-old laid, separated from the concrete and elements by only thin layers of clothing. His cerebral palsy was indeed extremely severe; his arms and legs were contorted at strict angles and his rib cage protruded profoundly from his chest. He was squirming in discomfort, contorting himself in a way that made it hard not to wonder what quality of life this boy truly had who was living in conditions so vastly different from my Butterflies.

I checked myself pretty quickly; if this year has taught me anything, it is not to mistake living circumstances for automatic misery. As I watched the parents, I could see how much love was shown on their faces and how much gratitude they had that the team had made it to visit their little boy. Immediately, I understood how special of a circumstance I was standing in. I understood the miracle that is Pallium for bringing palliative care quite literally into a forest home. However, that did not make the situation any less challenging emotionally. It was incredibly challenging to bare witness to this type of pain in this specific environment. I could see those around me shifting with sadness as we examined the little child in front of us. And then my eyes found the volunteer’s face. His face looked much more similar to that of the parents than of the concerned doctor, nurse, and social worker.

This stumped me. I knew why I was there in this room, why the doctor was there, nurse, and social worker, but I couldn’t help but wonder why this man was there. This older man who chose to spend his day leading us to Palode and witnessing the seriously ill and so much pain. This man with no medical experience. This man who was considerably older than anyone else on the team but had led us in our hike up to this very home. Then as I considered this, I considered all the other volunteers I had met up until this point who spend their whole days among the sick and dying, who take their “job” as seriously as the doctors, showing up to medical meetings with a notebook and pen and making sure they understand all of the cases. I considered the man on the street who flagged us down to tell us about his neighbor two doors down who he thought could benefit from our services. Or the people who gave van drivers various directions about how to navigate around town. All of these people were strangers to the patients in front of them. They had not taken a “Hippocratic” oath to care for these people. Most of them were also in older stages of life themselves, having worked hard for countless years to make a living in India (which is hard work) and now continued to show up for people they did not know from Adam.

India is the most populous country in the world with 1.45 billion people, with about 39 million of those people living in Kerala state where Pallium is centered. About 39 million people are living in California right now; Kerala is about 11 times smaller than California. The point of all these statistics is that I am not talking about a small town where everyone knows everyone, where people show up for each other because you’ve known them since they were in diapers. I am talking about the complete opposite of that, a place where most people are utter strangers to each other. And yet I have seen people show up more for Pallium and the ill in their greater communities than I have ever seen back home.

I thought that there must be something I was missing. Maybe these volunteers had previously had family treated at Pallium and were so inspired they wanted to carry on the work. Or maybe their family members had poor experiences with the medical system and they understand the importance of palliative care. But the more I spoke to volunteers, this did not seem to be the case. They had many stories about their lives – past lives where they were government workers, physicists, school teachers – but never a tangible reason for how they ended up here. Perhaps it was the language barrier, but they always just made it sound like “Well of course I did.” So, I took a different approach and sought out researchers at Pallium to ask their opinions after having studied this unique volunteer network.

I got my answer: there was no one answer. The state of Kerala has undergone so much in its history – mudslides, floods, poverty, governments overthrown or challenged, pandemics, and more. Every time they have gotten knocked down, everyone shows up to get each other back up. All 39 million, from the richest to the poorest of them, understand one thing: there is no such thing as strangers. We are all living and so we are all dying and we all must be there for those who are going through that process now, because who then will be there for us when we do? The reason the older man looked the way he did as he stared at the little boy on the floor of the forest was because he was looking at his son. It was me who mistook them for strangers.

Witnessing this aspect of how Pallium works, of how the secret sauce is the volunteers and the willingness of strangers to support others, has yet again made me towards inward to palliative and end-of-life care back at home. The fear we have around death and dying silos those who are dying into places we never have to see them on hospital wings we hope we never have to go to. And if we don’t see the dying, they are strangers to us. Dying becomes a thing of fear and mystery and the cycle repeats over and over again. Until someone we know is the person in the hospital bed being given the horrible news. Pallium has shown me that for palliative care to truly take hold, for people’s needs to get met at the end of life, this care must be established on a continuum. It must be upheld outside of the four walls of a hospital. And to do that, we will need to have some type of revolution where we all come to find that there is no such thing as strangers and that death itself is not so strange.

But if the solution to end-of-life and palliative care reform really does stem from the strength of our communities, what are we to do when communities are falling apart?  Even as I am separated from home by millions of miles, I am feeling the same stress and fear that many are about the future of our country. Now more than ever, it seems that we are more determined to make strangers of one another, more insistent that someone else’s load is not ours to carry. Those who are dismayed do not know where to help because they might not know anyone who is directly affected by the new policies and laws going into place. My time at Pallium thus far has shown me that this an excuse, an excuse to avoid the uncomfortable emotions that wait for us on the other side of bridging the gaps between people we view as unlike ourselves and therefore not our responsibility. In a world in which there are no strangers, this excuse crumbles; the reasons why we do not show up for each other become invalid.

We tell ourselves over and over again that there is no role for us to play. We are tired and in our lanes – we are starting our first jobs, applying to graduate school, graduating graduate school, settling down, raising children, or just trying to keep it together – and we have perfected the art of kidding ourselves to think it does not come down to every one of us. A community is only as strong as its weakest link. If we continue to view each other as strangers, if we only show up for those things that personally affect us the most, then what separates us truly from the “powers that be” that don’t care about us at all? They choose to view all of us as strangers because it feeds their evil, psychopathic agendas. But what makes us different from them if we still are not showing up for each and every last one of us?

The old man who trekked with us to the forest home has lived an entire life – he has worked for 50 years, has a wife, children, and grandchildren, and very well could say, “The dying people of Kerala are not my problem, I’ve done what I’ve can”. And who then would’ve been the only non-medical person in that home to look on to this sick boy with the kind of love that can only be given between family members? What I’ve learned at Pallium will forever refrain from how I think about the practice of medicine, about the end of life and palliative care specifically, but also what it means to be a human and the true responsibility we have to other humans.

When everyone is your neighbor, the world becomes a lot smaller and suddenly there’s no such thing as strangers at all.