I arrive at Pallium under the twin hazes of newfound allergies and tropical heat. Perhaps because I struggle to focus, all I see for my first few days are slow paced rounds that lead to conversations about symptom management, a groggy version of a US palliative ward. I’m told it takes a couple weeks to get what’s going on here.
Pallium is a palliative clinic in Trivanthapuram, the capital city of the Indian state of Kerala. Its chairman and beating heart is Dr. Rajagopal, an anesthesiologist who came to palliative care after seeing how it could relieve patient suffering. The clinic has an inpatient wing, a halfway home, and a set of 16 volunteer link centers that compose the geographic map of its homecare team. The organization is also tied to advocacy and education around palliative care in India.
I spend my first few days trying to find my feet. I had hoped to fade into the background and watch, but it is clear that won’t work. First off, I don’t speak Malayalam, the main language in Kerala, so while I can watch for body language, most of my understanding comes through translations, abbreviated because of time and filtered through the physicians. More importantly, there is some confusion about my role. I’m visiting at the same time as an attending palliative physician and her Fellow from the University of Iowa and a fourth year medical student from Mount Sinai. While I lack any medical skills, it’s assumed I will offer guidance and clinical support. It creates an outsized Hawthorne effect, and not just from the clinicians.
This was apparent on my very first day, we visit a woman with post-polio syndrome that left her legs paralyzed. She lives in a two room house with her mother who is blind. The bathroom is a squatting toilet short walk away down an unpaved road, shared among the community. An architect joins us. She is hoping to pave the road leading to the communal toilet and install a European toilet, so that the woman could use a wheelchair to toilet herself. The woman survives on a government pension for her disability, which she only got when her case was in the local paper.
Afterward, we hear from another physician how the presence of international visitors could turn the community against the woman. It is assumed that we visited to give her money, and the community has already started to resent the woman and her mother for the media coverage and her pension. “Without the community, they have nothing,” the physician tells us. The neighborhood helps out with many of the small things the woman needs, and given that her ability to prepare food relies on her elderly mother’s capacity, that need is only going to grow. It’s disconcerting to realize how my presence moves me from observer to participant, and how that movement weighs on their relationships. In less dramatic terms, it means everything I understand must be understood through how I am read, just as I try to be aware of how my background influences my reading. In the immediate though, there’s a new rule: only one international visitor on each home visit.
At the same time, this interaction prompts me towards a specific question. Why is the community so critical? How does it play into medical care? Of course community matters in America, but I can’t recall a time where someone’s survival depended on such a network. Or at least, I can’t remember a time when I heard physicians discussing the community network in a clinical context. I’m told that I should talk to Sarath, the social worker, if I want to know more.
Sarath is young, almost baby-faced. In conversation he seems attentive and aware, with a constant quiet smile as though he’s anticipated what you’ll say next. He’s easy to talk to. Sarath has only worked with Pallium for the last one and half years. Before, he worked with an HIV/AIDS advocacy program, and before that, he studied chemistry at university. This sort of liberal arts transition seems to be rare in India, so I ask about it. “I fell out of love with chemistry.” he says. For him, the joy of the work is in listening to people’s problems, the fact that, “I [the patient] have a problem, and I share it with you.” That’s what makes it meaningful. For each patient, he writes a psychosocial evaluation, based on interviews with patients and their families, which amounts to a case history, an informal financial audit, and the family gossip. He creates a genotype, laying out a family tree in circles and boxes, diagramming who are the caretakers, who is absent, who has passed away.
Most of Pallium’s patients can’t live independently. Many are paraplegic, cancer ridden, or with other serious chronic conditions. But Kerala has few places where they can go, no nursing home or assisted living equivalents. Many people don’t have the money or insurance that could pay for them even if they did exist. The social worker’s map of who is involved with care is the registry of what care the person can get, who they can call. And it’s not just biomedical and it’s not just for the patient. The psycho-socio-spiritual stress is an element of the care for everyone in the network, and part of Sarath’s job is to know and build connections within the family.
I sit in on one of Sarath’s meetings, with a husband whose wife is unable to sleep, tossing and turning for two straight weeks. He discovers their social network is dissimilar from the Indian norm: no children, small family group. More so than the usual, the husband and wife are reliant on one another. The husband seems calm, his eyes shining beneath bushy eyebrows, thinning hair still more pepper than salt. He describes his wife’s medical history quickly in Malayalam, which I find out as I skim over Sarath’s notes. I have trouble focusing, but it seems like his composure is maintained throughout. A few times he seems frustrated, but with an insomniac wife, whose manic eyes dart around the room looking for any relief, how could any empathetic spouse not feel frustrated?
After the talk, Sarath and I debrief. “He says he’s coping well, but I guess not,” Sarath says. I nod on the principle that I have no idea how one could could cope well. “He knows it’s her last lap around,” Sarith continues, “A few times he almost started crying.”
I had not noticed the tears. Maybe because he was male and I didn’t expect it, or I wasn’t paying attention, or Sarath’s experience let him see things I missed. When I think about it later, I realize it reminds me of how physicians diagnose. There are subtle symptoms that suggest possible explanations, some that can only be picked up with a trained eye. But it requires an emotional sense and careful awareness of other people, without the crutch of scientific measurements and tests. And in the case where the caregiver determines the quality of the care, it’s at least as important. Here, the absence of close family places the total burden on the husband. He has to come to terms with his wife leaving him while providing for all of her needs. The care doesn’t stop at the patient. The caregiver needs to be relieved of their suffering too. Sarath plans to call their niece to see if she can help out. I suggest maybe calling their friends. He says that idea hadn’t occurred to him, that’s “not really what we do in India.” It’s the first time one of my questions surprised him.
That afternoon, I sit off to the side writing in my notebook. It’s incredibly hot. The power has been cutting in and out all day, with a brief pause as while the backup generator cuts in. The fans spinning overhead keep a constant buzz of electronic motors and rushing air. In this part of the hospital, the ward is open, separated by turquoise curtains made of thin plastic that the fans whip around. I hear someone wailing. A man with mouth cancer who had lasted two weeks past the single day a doctor had given him, has just died. His wife who had been unable to accept the trajectory now has to face his passing. She is inconsolable. The fans do nothing to mask her crying.
After a while, there’s a discussion of how to pull the wife away so the staff can prepare the body to leave. The mother of a patient with severe cerebral palsy gently holds her hand and guides into a room. She sits with the wife, giving her space to grieve for her husband. The body is wheeled out on a thin gurney, the man’s face out of the sheet, indiscernible beneath the bandages covering his tumors. The wife follows, carrying the things she brought with her, the turquoise curtains billowing.
Pallium’s work isn’t done. Sarath or another social worker will reach out to provide bereavement support, checking in on their grief. Some of that processing happens collectively. Sarath invites me to sit in on a bereavement session, where a group who have lost family share in their experience. Much is in Malayalam, but as each member of the group must introduce themselves, I go up and try to explain the strange reason I’m here. Dr. Rajagopal translates. Something about me provokes a laugh. That seems fair.
Dr. Raj and Sarath leave Susan, the palliative fellow from Iowa, and me in the hands of the group. They close the session with some songs. We start with “We Shall Overcome,” a song so caught up in a particular political moment in my country that I had failed to notice how it captures surviving more intimate pain. They call us up to sing, and we stumble our way through, with our efforts falling apart at the Hindi verse. We are told the event closes with the singing of the Song of the Republic. They ask us to sing some song for our nation’s independence. Neither of us feel completely comfortable jumping into the Star Spangled Banner, partly for its range and partly for fear we’ll somehow forget the words. They laugh at us, but find an alternate: Edelweiss. It’s a blessing for both our homelands. “America needs it,” one woman says solemnly.
At last we finish with laughter yoga. We hold hands and flip them up in the air, letting out a loud “Ha ha ha” as we go. Most people seem to leave with a smile.
Dr. Rajagopal is receiving an award tonight in honor of T. N. Gopakumar, a Kerala journalist notable for his emphasis on reporting on the lives of regular people. His speech is in Malayalam, but his delivery has the sense of a quieter Enjolras, similarly lit by a revolutionary spirit and a sense of justice. There’s a reason for this sentiment. 35,000 people committed suicide in Kerala last year for health related reasons. Medications like morphine are underused or inaccessible, leaving people in incredible pain. Even as the legal restrictions loosened, there’s still aversion to its use because of misplaced fears of dependency and respiratory depression. Dr. Rajagopal is in this fight, working to set up palliative clinics and pain free hospitals around India, educating other clinicians on the medications use, lobbying to increase access and funding. Lives are at stake.
Sarath gives me a ride home on the back of his motorcycle. I try to play it cool, though at first every turn seems terrifying. But Sarath exudes the same measured calm while driving as he does while speaking with patients. On our way, he chats about his plans for Pallium’s future. He wants to create smaller bereavement groups, places where quieter people feel comfortable sharing their experiences. We get back to Pallium in one piece.
I still feel like I don’t have a grasp on how volunteers work. For clarification, I talk with Dr. Amritha after rounds. The core of Pallium’s community network are the volunteer link centers. These volunteers are the initial contacts for care and coordination. They keep tabs on who needs what and providing what assistance they can. When someone has medical needs beyond their capacity, they call Pallium. It’s an inversion of the American model, with the clinic as the subcontractor to the volunteers and community.
It reminds me of an inpatient hospice I saw in Soest. Similarly, there the volunteers cooked, bathed, fed and ambulated the patients, only contracting with the nursing staff for some critical needs. The approach created a philosophical shift in the care. I asked the co-director of the hospice, Annemarie, if the care burden shifted to the clinical staff when someone started actively dying. Sure, she said, there was more of a role for pain relief, but she discourages nurses from waiting around unless the patient wants a nurse: “there’s nothing medical wrong with them. They’re just dying.” That approach, the idea that people aren’t a set of problems to be solved, comes more easily to people who aren’t clinically trained.
Of course, for many reasons it’s a bit different in Pallium. For one, it’s a community with prior relationships with the sick person. It’s not just their orientation that’s different from clinical staff, it’s their entire relationship. The care happens in people’s homes, not during someone’s shift at a physical building. Second, Pallium is entirely different in scope from palliative clinics I visited before. It isn’t just people with severe symptom management, or those who are close to death that appear in the clinic. In truth, it seems to be just about anyone with a care need. I asked several people about this, and they anticipated how Dr. Rajagopal would respond, repeating almost the same phrase: “would you rather I wait for them to be suffering more? Is it not relieving suffering to treat them now, to anticipate their decline?” It’s one of the things Dr. Amritha loves about her work. She sees a patient on a home visit and they are so excited to see her: “there would be no one there for him without Pallium.” She says she came to Pallium by accident. She started out as a dentist, just doing palliative care as part of her training. But the opportunity to feel like her work meant something to all her patients brought her in.
I go with Doctor Sreedevi to see the volunteer link centers in action. On our way, we stop to pick up Elsa. She’s a nurse trained by the link center, with less specific clinical training than a university degree. But, Doctor Sreedevi said, having less medical training offers its own gifts. One time, a patient had symptoms that suggested depression. Trying to judge motivation, the team asked if she had prepared any food. The patient said that sure, she had just had breakfast. The link center’s nurse went into the kitchen, digging through the drawers, pointing out there wasn’t any food in the place. Her connection to the community, plus the fact she lacked the blinkers that come from narrow training, helped her to see and communicate with the patient.
A lot of the visits I watch seem a lot like getting tea. Someone would flip through a box of medications, then we would sit around and chat. The conversation was in Malayalam, so I sat, sipping my specially prepared coffee. Supposedly it had less sugar in it, Doctor Sreedevi assuming I would prefer European style. It was still more recognizable as sugar water than coffee. I lean over to Doctor Sreedevi and ask “What are we talking about?”
“What the neighbors are up to, their kids.”
We go see a patient living with her daughter. Outside the door are a pile of sandals in all different sizes. Inside, the woman is in the late stages of dementia, non-responsive, curled up on her side. Dr. Sreedevi speaks to her daughter, asking about the care she was providing. Then Dr. Sreedevi asks how the daughter was coping. She starts to cry, even as the smile stays on her face. She says she is doing fine.
Dr. Sreedevi tells me she is the only caregiver for her 90-year old mother and her two toddlers.
“That’s not sustainable,” I venture.
“It’s not moral,” Doctor Sreedevi replies. The woman has seven other siblings who don’t help with the care. Doctor Sreedevi calls them with a lecture.
We see another old woman, her straight silver hair in a tight bun. Her eyes are perpetually 1/4 open, her body stooped over. Above her bed is a picture of an old man in a clean white shirt, his face serious. A small red rose is painted in the left corner. Around the simple gold frame is a garland of flower. The room is filled with images of Saints, Jesus, and Our Lady. She is suffering from the burning neuropathic pain, repeating herself over and over. She starts to cry, though again, her smile doesn’t leave her face. She asks why she should live, her duties are done, what’s the point anymore. The nurse. touches her head, pulls it in so their foreheads touch and pats her cheek, staring into her slivers of eyes, tells her she’s so pretty, she has to live so people can see her.
The woman seems calmer, as does her family looking on. It’s not the words. Presence and touch matter.
In my last couple days, I finally get a chance to sit down with Dr. Rajagopal. He’s below average height, which in India means I stand far above him, but like most revolutionaries, he carries himself with confidence. He has the look of men who are used to busyness and constantly ringing phones. But he also has the manners of someone with a fundamental sense of palliative care, the instant sense that he is listening to you and only you. I don’t know how he does it. Our meeting starts ten minutes late, and I don’t even notice. That is, until he has to take three phone calls in a row.
My sense is this busyness is only balanced through the work of Ashla, his assistant, who is constantly at his side, juggling her two cell phones, as well as fielding his calls. With an instantly winning smile and calm demeanor, she uses wheelchairs and lives in the hospital for her care needs. She reminds him to send me a promised article on social capital. I still haven’t gotten the e-mail.
I ask him about community and family in India and how it’s changing. He grabs a notepad full of memos, flips over to the other side of the page. He starts by drawing a small, scribbled-in circle, “Here’s the individual.” He expands the circle, the immediate family. Another larger circle, less filled in “the extended family.” And then a slow, easy spiral, the community, “that continues until eventually the connections fade out.”
He tells a story about the village where he grew up. His mother had to go to the hospital, but for a kilometer “there was no road. There is now, but there wasn’t then.” Four men picked her up in her easychair (“we didn’t have wheelchairs”) and carried her until they were tired. They set her down, and four more men appeared. In that village at that time, “If someone was crying alone, in five minutes, everyone would be there.”
At Pallium, the family is a unit. Patient-centered also means them. As Dr. Rajagopal tells me, the emphasis on the patient as an individual, with all “its positives and negatives, is more in your country than in mine.” One of those old orientalist adages is about how in the “East” there’s a different conception of the self. I want to avoid that. Despite my presentation, much, perhaps most, of Pallium’s care is directed towards individuals and their needs. Pallium as an organization emphasizes patient autonomy, pushing back on families that try to hide diagnoses. But there is something to the idea that care in India can’t just consider patients. The wellness of communities and families is critical for Pallium’s work. Perhaps this shouldn’t be postulated as a difference, but as a lesson.
On the scratch paper there’s another scribbled in circle in the bottom left hand corner, for an elder who is alone. Globalization, despite offering economic opportunity and growth, has changed communities. Children now move away for jobs and the rise of the nuclear family has shrunk the scope of the unit. Neighbors change year to year and month to month, relationships aren’t givens but temporary conveniences.
In the US, we’ve seen a similar loss of traditional community structures, but there we replaced them with safety nets and governmental support. In India, whether because of resource scarcity, or ineffiecient and ineffective government, “Or,” as Dr. Rajagopal says, “perhaps, because it is a better way,” they have adopted a different strategy. Dr. Rajagopal starts making little dashes around the edges of his drawing. “We can call it a hypothesis, but I think it is a fact” that there are compassionate people in the community, people who want to help, who find helping makes their life is more meaningful. He draws an arrow from the dots to the center. It’s about making the connections between these people and the people who are suffering around them. If you can find those people, it’s only a matter of organization.
“So this is Pallium’s mission?” I ask
“This is good, it lets me emphasize something,” Dr. Rajgopal responds. Pallium’s mission is not to build a replacement for the community. Their goal is to integrate palliative care into the medical system to relieve suffering. Some of that is through, as Dr. Raj says, “boring” measures like advocacy and changing laws, some of it is through educating others, and some of it are making for a more compassionate community. But it can’t just be that, the medical system “has to become more compassionate too.”
There are other challenges to this task that are closer to home. While it’s good that the pace of Pallium is slower than American hospitals, some of this seems to be tied to unclear clinical authority structures. Put another way, after two weeks I still wasn’t clear who was in charge of what. This led to some troubling clinical outcomes, like antibiotics given for less than the standard duration or wounds that were poorly managed partly because no one knew who was supposed to do the managing. It’s possible I missed something in translation, though it seemed like people were aware of the challenges. Some clear authorities with responsibility to address problems might go a long way towards helping patients.
We hear someone burst into tears, Dr. Raj rushes out. I sit, trying to collect my notes, think about if there’s another question I should ask. Dr. Raj returns, “someone just died.” He walks into his washroom to clean his hands. Our meeting is over.
The next day, I get another couple minutes with Raj. He talks about the challenge of making palliative care a priority in global health. Something like HIV/AIDs is a new problem, and it’s something, with good reason, that people will put resources into solving. But pain is an old problem, one we can’t even see. He mentions Terry Kettering’s poem “The Elephant in the Room”
There’s an elephant in the room.
It is large and squatting, so it is hard to get around it.
Yet we squeeze by with, “How are you?” and “I’m fine,”
and a thousand other forms of trivial chatter.
We talk about the weather.
We talk about work.
We talk about everything else, except the elephant in the room.
There’s an elephant in the room.
We all know it’s there.
We are thinking about the elephant as we talk together.
It is constantly on our minds.
For, you see, it is a very large elephant.
It has hurt us all.
But, to paraphrase what Dr. Rajagopal told me at the end of the interview, once you know the elephant is there, it won’t let you go.