I spent my final four days in India visiting Dr. Raj Gopal and the Trivandrum Institute for Palliative Sciences, (TIPS), which he founded and currently runs in the capitol city of Trivandrum, Kerala. The Institute provides both outpatient and inpatient palliative services, as well as home-visits throughout all of Trivandrum and into several of the rural districts surrounding the city.
My first morning there I arrived to attend the weekly team meeting of the TIPS medical and administrative staff, and experienced a wonderful, warm welcome from each person I met within the group. Soon Dr. Gopal was sending me with one of their mobile medical teams, including a physician named Dr. Sunil, two nursing assistants, a volunteer, and a driver.
We went to a nursing home/hospice/shelter run by Catholic nuns. Though the home itself houses some fifty patients, eight of them were currently TIPS patients, the entire group managed in-house by a very capable caregiver named Sister Elizabeth. I was taken immediately by the Sister’s unfazed manner, especially when I learned of her vast responsibilities and little help (two nursing assistants).
There was a small, elderly, mentally ill woman who, though not a TIPS patient, colored our time with her frequent appearances during patient visits, often with the potential for violence, at one point with a large bamboo stick in hand ready to beat one of Sister Elizabeth's nursing assistants. I noted quickly how all the staff embraced her with humor and understanding, quietly listening to her or, if need be, gently grabbing hold of her swinging arms and subduing her as they lead her out of the room.
I also observed Dr. Sunil's manner with the patients; the time he took respectfully listening to and examining them; the quiet, mindful tone he used as we walked from room to room, explaining to me each patient’s medical history and current plight. The entire TIPS team carried themselves in this quiet, engaged, respectful manner.
The first patient we saw had breast cancer with bone metastases and some psychiatric history. Dr. Sunil turned to me during a pause in her examination and said, "She's now over three years living inside these four walls, and we know that takes a significant psychological toll on her and are working to manage and recognize that in her care and treatment."
She was old and, in a certain light, haggard in her appearance – tousled hair, groggy, swollen eyes, confused. We’d awakened her by our arrival, and it took a marked period of minutes for her to begin to get her bearings, all of us standing close by and smiling, listening. But in between brief moments she would relax into the most beautiful smile. Inside those moments, an utter radiance beamed from this old, lonely, slightly deranged woman with cancer. We said our good-byes and left her there, sitting alone in her beige-colored room, the walls with scattered finger prints, cobwebs, unnamed stains, and toward the floor, the occasional reddish, dried-up spit-pile betraying her hidden betel chewing habit.
Next we saw a laryngeal cancer patient whose tracheotomy was stainless steel and wide open to air. I was jarred at the initial site of it, the patient putting his finger over the open hole occasionally to attempt to phonate as he communicated with us. He told us his pain was under control, he was sleeping well, having regular bowel movements, and seemed positive in regard to his current status and day-to-day comfort level.
After him, we saw what I call another "light-filled" patient, another older woman with breast cancer and bone metastases. She was less confused than the previous woman, in the company of her son who visited and stayed often with her, and had the funniest laugh and a candid, forthright demeanor. I found myself wanting to come over to her bed and grab her into a big hug throughout the examination, her laughter and humorous spirit so contagious. She made jokes and then would slap her knee as she laughed at them herself. It was during this visit that the little beloved insane woman came in and started punching one of Sister Elizabeth’s nursing assistants. Quickly detained, the staff smiled as she was taken out of the room, explaining that this particular assistant was new and thus not trusted as yet by her.
Next was and oral/cheek cancer patient, a young man whose entire mouth was covered with a large gauze dressing, but who spoke audibly through it throughout the examination. Upon removal, we saw what I can only describe as a gory wound of an advanced malignancy that had overtaken his entire lower lip and turned it flat and outward, about the size of a bar of soap. According to his chart, it had initially been infected with maggots, which Dr. Sunil explained to me to be a common occurrence in the TIPS patient population. Often patients are kept separate or even in seclusion in their homes before ever being diagnosed, with their cancerous lesions unclean, open to air, infected, and thus prime attractions for flies and their offspring. This current patient expressed to us a desire to go home and continue treatment there. Dr. Sunil later informed me this was not possible, as his family did not want him to return home.
We next met a warm, gentle-spirited 41-year-old woman with advanced pancreatic cancer. Again we had a good-humored visit from the tiny mentally ill woman, but this time on non-violent terms. I don't understand the Malayalam language, but I could see obviously she said things that made all parties laugh, including the pancreatic cancer patient. I remember thinking clearly that her presence and mostly harmless antics were in some way part of the palliative care and experience of these patients - she made them laugh, an obvious and essential part of any quality of life.
Our final patient was a elderly man who was in remission from lung cancer, but who cried throughout the visit and examination. He'd had a trach, was unable to speak, and so would clap his hands feebly together during the brief moments that Dr. Sunil would look away in order to speak with Sister Elizabeth, or write something down, or go to grab his stethoscope. His affect was desperate, inconsolable. Later I learned he also had some underlying psychiatric issues, but there were limited means at the home to support consistent psychiatric care, and thus the TIPS team was attempting to manage this aspect of his treatment as well. He, too, wished to go home, but was part of a family that did not want him to return. He had two roommates of contemporary age. One sat and snoozed throughout the visit, while the other perched on the edge of his bed, listened intently, and occasionally looked to one of us, shrugging his shoulders and shaking his head in what read as resigned solidarity in the face of his roommate's woes. It was difficult to end the examination. Dr. Sunil, and eventually all of us, seemed hesitant to leave the patient, who was clearly not feeling better than when we’d arrived, and, despite our efforts, would continue into the day with his anguish.
Sister Elizabeth then brought us to the medication room where she filled the prescriptions for all the eight TIPS patients from the medicines we had brought along. We were then served fresh pineapple juice and some cookies. The room had a glassless window into the hallway, and as I crumbled through my cookie, I noticed the tiny, sweet insane woman standing by, looking in at me as I ate. Sister Elizabeth saw the exchange, and I smiled to her what I hoped was an expression of appreciation for the little woman, and for her presence here. Sister Elizabeth responded, calmly stating, “She is harmless. She is one of us. She has no where else to go.”
I thanked the Sister for the refreshments and followed the TIPS team out to the van. The visit to Sister Elizabeth’s shelter left me asking one question: "How do we manage the life and suffering of the world's unwanted?"
I was becoming keenly aware that Dr. Gopal had found and developed a myriad of ways of doing just that.
