By Sunil Raj
The major component of my fieldwork was volunteering at Pallium, India. Pallium is a volunteer-run cooperative that provides home healthcare to underprivileged residents in the state of Kerala in India. Kerala has a state healthcare system as well as a private one. Most people cannot afford private healthcare so the state system is constantly overwhelmed. Societies like Pallium aim to bridge the gap. The palliative care society’s main function is conducting home care visits to patients in its registry. For most of these visits there is no doctor present, and the small team is made up of a driver, a nurse, and of course a volunteer, as this is a volunteer run organization. As a participating observer I would serve as a secondary volunteer on these visits, as well as a note-taking observer... or at least that was the intention. I met Mr. Rajendran, a fellow volunteer, who would serve as my liaison for the day. He was an older man, who had long since retired from the fisheries department. This wasn’t uncommon. Most of the people around that age, who had remained in Kerala, India, and had managerial jobs, seemed to have worked for the government in some capacity. He had held a relatively high position, and this was evident in the way that he carried himself. I later understood that the success of the program was in no small part due to the administrative experience of its volunteers. Rajendran told me he had been volunteering here for about 10 years now, and it had thus become part of his daily routine. At first, I wasn’t sure if he was enthusiastic about me joining him on today’s visits, but we soon warmed to each other.
An old Malayalam song bellowed through the transistor radio in the corner of the room, and amplified the sleepy aura that filled it. It was decidedly less chaotic than when the doctor was there, the morning prior, when I first visited the centre. The first thing that Rajendran showed me was the computer and database, which kept track of patient details and visits. It was made clear to me many times that a tight organizational system was imperative to the functioning of the program. This made sense since most of the volunteers were proficient in making and maintaining thorough records in their previous employment. The software which held the data had been given to them by the city government. The nurses would handwrite diagnostic notes and other information on paper during their visits. This was later entered into the system by volunteers. The database was also used to keep track of which visits were made, which visits were yet to be made, and when the next set of visits would be scheduled. The process seemed unsophisticated, but it was effective.
Rajendran told me that all volunteers underwent a 17-hour training course for dealing with patients, and that it focused mainly on communication. He stressed that when it came to patients there was no discrimination in terms of income or on any other basis. Their patients included everyone from the affluent to the destitute. While we spoke, I used what little medical jargon I knew in order to ingratiate myself. I threw out a ‘diagnosis’ and ‘prognosis’ here and there, and maybe a ‘sterilize’ for good measure as well. Rajendran told me he was proud of what the society had achieved, and in fact, the palliative care model from Kerala has become a phenomenon of world renown. The model has been studied and translated across various other states in India and even other countries. While he spoke to me, I glanced over at an emergency patient visit form that lay on the table in front of us. The field marked reason read ‘expired’, and I felt a cold chill go down my spine. At its core, we were dealing with the evitability of death and the issues it brought with it.
Shortly thereafter we were off in a donated van with Rajendran, the nurse, the driver, me, and a host of medical supplies. The nurse and the driver were the only paid staff on the trip. They were not paid substantially. Money was not the motive behind their endeavour. Driving or even just riding in a car in India is something that I still haven’t gotten used to. Roads have slightly improved over the years but there are no rules. It’s a see space - fill that space with your vehicle kind of philosophy. Cars and bikes frequently overtake one another by driving in the opposite lane directly into oncoming traffic as fast as possible, just to swerve away at the last possible moment.
As we made our way to the first house we weaved in and out of traffic, through the palm trees, open gutters, and communist flags that characterize Kerala. Our first patient had held a prominent job at a bank. He was a victim of a spinal surgery that went wrong, leaving him paralyzed. The nurse checked the patient’s blood pressure and took other diagnostic measures. They made some small talk. This was one of the volunteer’s major responsibilities - making conversation to help the patient feel at ease. This patient was a donor to the program, reiterating the idea that this program was not purely a charity, but rather it represented an investment in one’s own possible future. He told me that the state ran similar services to the palliative care society, but they were nowhere near as effective, or far-reaching. He felt the key to the program’s success was that there is a sense of ownership. Some of the patients who were registered with the program were also donors, and the patient registry often included friends and families of volunteers. They believe they are working to better the situation of their own peer group without assistance from the state.
I had some time with Rajendran while the nurse was changing the patient’s catheter, so I asked him a few questions. I asked him about the free government hospitals in Kerala. He said that they were decent, but they were too few and overcrowded. He showed me the treatment log each patient kept, which had a record of all the known treatments and medications they had received, so it could easily be accessed by any medical professional, or even family members. Digitized records were still an anomaly there. The patients were also left with a handbook for caregivers. Rajendran told me that these aspects of the program were developed as the program grew: “Necessity is the mother of all invention,” he said.