Thursday, March 26, 2009

Spirituality and/in Medicine

Sultan passed away three days ago today. His condition had been rapidly deteriorating for six to eight weeks since the blood transfusions stopped. When he passed, the 27 year old Jamkhed resident was skinny as a stick, with bad bed sores on his back and arms (despite being moved into a waterbed), barely able to speak, with eyes as mellow but alive as ever. His nails were all raised, his tongue and eyelids pale, and his mother was reliably by his side. It is not the first time someone has died in the hospital since I arrived in Jamkhed, but Sultan was a particularly unusual case, considering he was active, happy and jumping around when I arrived in August.


Around eight years ago, Sultan went to a Jamkhed hospital presenting with kidney problems. He was treated for kidney failure but a side product of the toxic meds soon left him with aplastic anemia, rendering his bone marrow disabled in producing new red (and white) blood cells. Aplastic anemia is a very difficult disease to treat, requiring a bone marrow transplant available for a good amount of money, especially considering the risk after operation. Sultan, nor CRHP, could afford the transplant. Instead, he received blood transfusions every two weeks to reoxyginate his body. Oddly, even with the transfusions he would present with fever, chills, pain and vomiting. He was tested for malaria, typhoid, tuberculosis but none could explain the ongoing sickness, especially with the limited diagnostic equipment available in the hospital. Eventually, Dr. Shobha, Dr. Wout, Sultan and his mother sat down to discuss the options. They decided to take Sultan off blood transfusions and rest until death.


The healthy-looking Sultan soon became bed ridden, quiet and contemplative. He never seemed angry for the decision or for the chances and changes life had given him. There were few palliative medications to ensure he would live out pain-free besides the common pain meds. What seemed to do the most for Sultan, however, were the daily prayer sessions at his bed. During morning and afternoon rounds, the nurses, doctors and patients would stop, some holding Sultan’s hand or rubbing his leg while a nurse or doctor said a prayer. He would close his eyes, seeming to listen deeply, and then open them again to look at us afterwards. The prayer was not an excuse for lack of treatment but was in fact a constructive form of supplemental palliative care.


With Sultan I began to think deeply about the role of spirituality in medicine. It often seems like a taboo subject, a mixture of contradictions and worlds that should not collide. However, it also seems that spirituality should exist in health and the hospital as much as, if not more than, most anywhere else. The hospital is a place of life and death, healing and suffering, crying and laughing, of miracles and catastrophes, family and friends, love and closure, and of searching and retrospection. Something so important, so innate in a patient as their own health deserves to be accompanied by faith, by a belief in truth and security. Health is much greater than the pain and treatment that accompany disease or injury but involves equally mental and social well-being. For most, spirituality (in whatever form it may be) is a determining factor in this well-being which can greatly affect the patient’s compliance, motivation and success in overcoming the pain and disease.


Spirituality is different than religion, and it should not be used as a substitute for rational medicine or in the place of treatment, but it does deserve recognition and a place in healing. Sultan was dying – he knew it, his mother knew it, we knew it and, for him, God knew it. Is it wrong for the doctor to pray with Sultan, asking for his well-being after he leaves this earth? Was it not more comforting for Sultan to know that he was in the hearts and minds of those who were caring for him?


Spirituality, and especially religion, could be dismissed as counter-science and anti-medicine, but rather it is neither – it just happens to be most controversial when difficult decisions need to be made. Normally, though, spirituality helps treatment and medicine by supplementing it with a valuable service in a place where meds cannot reach. Sultan and his mother seemed to be at peace when he died, and I can’t believe it was the doctors, the medications or the hospital that did that for him. Rather, it seemed to be a faith in something larger than just himself and that he was far from dead even after his body left the hospital.

Saturday, March 14, 2009

Beginning part two of the alcohol and hypertension study

The hypertension survey is complete. From mid-December to early-March, three hundred and four men have been visited in their homes, had their blood pressure (BP) checked, and were asked questions relating to exercise, diet, tobacco use, and alcohol use. Initially, the goal was to simply collect data on alcohol use, but the strong alcohol-associated stigma prevented the sharing of honest and reliable answers. Rather, the survey was paired with a hypertension study. Using the local village health worker to gain trust and acceptance, the study focused on blood pressure to reduce the fear of stigma and create an environment where men could be honest. While many men continued to understate the amount they drink or chew, a safer environment was created and reliable data collected. Besides that, the study allowed me to explore the fascinating village and create relationships that otherwise would not have been made.


Of the 304 men, 46% had normal blood pressure, 37% were pre-hypertensive, 12% were stage 1 hypertensive, and 5% were stage 2 hypertensive (BP greater than 160/100 mm Hg). 31% of the men were found to drink at least once per week – 42% of whom drank up to seven glasses per week, 13% up to fourteen glasses per week, and 45% fifteen glasses or more. And this isn’t beer and whiskey but rather country liquor, as 82% drank an odd mix of distilled brown sugar with battery acid, trash, and other things I don’t know about. The more alcohol a man drank, the higher his blood pressure was found to be – of non-drinkers, 52% had normal BP and 10% were hypertensive, whereas of those who drank heavily, 28% had a normal BP and 37% were hypertensive.


77% of the men use a tobacco product, with 85% of these men chewing tobacco (grinded up in their hand) and others using bidi (cheap cigarettes), goa gutka, cigarettes, paan, or marijuana. Of those who drink or use tobacco, 12,045 rupees ($251) were spent on alcohol and 9991 rupees ($208) on tobacco per week. Thereby, 22,036 rupees ($459) are spent in total on both alcohol and tobacco, averaging to 92 rupees per week per drinking and/or chewing man, an astonishing amount considering the average female laborer makes 40-50 rupees per day and male laborer 60-90 rupees per day, five to six days per week. We also found that 90.5% eat mutton at least once per week (counter-intuitive to the western idea that India is a vegetarian country) and 93.5% eat green vegetables at least once per week (mostly palak – a form of spinach).


With the understanding that the data would be used to uplift the health of the village and direct community-inspired interventions, a meeting was held on Thursday for all the men and their families to learn about blood pressure, hear the results from the study and discuss solutions. The week previous was spent up and down the village informing people about the meeting and getting them prepared for it. By 6:45pm on Thursday, two men had shown for the 6pm meeting. Back into the village we went, a pack of six guys encouraging every man we saw to make their way to the hall. That helped to get fifteen men to the meeting. Then the rickshaw (three-wheeled taxi) with a giant speaker strapped to the top rumbled through the village, announcing the meeting that was now taking place at 7pm. The rickshaw, combined with the Hindi music blaring from the meeting site, attracted the other forty people by the 7pm start, many of them drinkers.


The meeting was intended to be led by Dr. Shobha (director of CRHP) and Asha (local VHW) but the meeting soon became dry and information-filled without proper context. So Dr. Arole (co-founder of CRHP) took over and began to place the data in the context of the larger problem, explaining the risk factors and ill effects of hypertension. Unfortunately, once the data regarding alcohol was shared, five men immediately felt targeted and left. The skit by four village health workers on the effects of hypertension and stroke made the situation even worse, as it merged into a skit on alcohol abuse by men, causing ten more men to leave, some taking friends with them. By the end of the skit and song, the safe feeling of the meeting had largely dissipated. The twenty or so men who remained were very interested and some discussion was held but with little lasting effect.


The most discouraging thing from the meeting is not the failure to create a safe environment for those using alcohol but rather the failure to even create a comfortable environment for them. While there were no direct attacks to the men who drank and they have certainly heard that drinking is a problem before, the values that supported and drove the survey to completion were lacking at the meeting. It was a meeting led by data rather than by honesty, trust, support, love and unity, all values that make the information understandable and introspective. Since this was the first meeting with the community, chances of getting full participation is low, so another meeting will be held in the following week to shoot for a different result. This time we hope to build on what was successful, including the informative survey results, and correct the downsides of the last meeting to create an engaging and comfortable meeting.

Monday, March 9, 2009

A matriarchal society outside of Kerala

Those who live in urban areas, rural settings, and tribal villages – India is largely made up of these three communities. Jamkhed is squarely in the rural setting but across Maharashtra state exist pockets of tribals who have congregated in hills and mountainous regions. While in Gadchiroli in early December, I had the opportunity to visit a tribal village with SEARCH India, learning about the very unique community and their traditions, in addition to the difficult work done by partnering NGOs.


The tribals in India are comprised of the groups declared as tribals by order of the president. The essential characteristics to be identified as a scheduled tribe are: primitive traits, distinctive culture, shyness of public interaction, geographical isolation, and backwardness, both social and economic. In 1991, the tribal population was estimated at 68 million, 8% of total population.


“Do not tell them you are American,” I was warned before exiting the bus into the village. “What should I tell them?” I asked. “Just tell them you are from Jamkhed.” From the beginning, the tribal area looked and felt differently from all the other rural villages I had visited, most prominently by the use of bamboo everywhere – building houses, serving as storage facilities, and as a fence around sheds and the village – anything to protect from tigers and panthers entering from the jungle. The tribal village was a part of the Madiya tribe, a tribe connected with the Naxalite community, a militant group of civilians in central India fighting the police and government for their rights and an independent state.


Tribals are matriarchal where the woman is respected above the man, a rare trait in Indian society. The praise for women seen throughout their beliefs (husband to wife dowry, female politicians, praising of goddesses) was most prominently showcased in two unique traditions. The kurma house is an external hut located in the village where women live for 4-6 days during menstruation. I have seen similar huts where women are kicked out of the house or forced to stay in only one room during menstruation because of its associated dirtiness and contamination. However, the intention of the kurma house was much different. Here, five to six women at a time stayed together to talk, rest, eat, sleep and abstain from work in order to regain energy and strength during this emotional time. In the home, the man would cook the food and bring it to her, take care of the kids, clean the house, and feed the animals.


The second tradition is that of the gotul, a community center located in the village center. Once or twice a year, usually once the harvest is finished, the gotul is set as a social event to bring together boys and girls to dance, sing, drink and socialize. During the event, a courting process initiated over the previous couple months is now cemented, as the interested couple will spend the night together, either going into the jungle or in a neighboring hut to be with each other. After the gotul, the female goes to live with the boy and his family in his house for six to twelve months, evaluating whether the boy and his family are a good fit for her. If so, then the marriage will take place. If not, then she will thank them and give a gift, and the courting process will begin again. As different as it may be, problems rarely arise. If the couple sleeps together post-gotul, it is always consensual (entrusted in the matriarchal society) and there has been little to no history of rape or abuse. If it creates a pregnancy, then the couple is highly encouraged to marry. If on the rare occasion that they do not, then the village will come together to decide who will care for the baby.


The gotul also serves as the center for teaching and tradition, where the history and culture of the tribe is passed down from generation to generation. Every father will take their son into the gotul and share with him the tribal traditions and beliefs. Yet it is all done by word of mouth, as there are no writings and all history is passed down through stories, songs and dance.


During my limited stay, I became very impressed with the ability of the tribals to maintain their unique tradition in a country that is very opposite in many ways. Tribals seem to get a bad rap in India because they are mountainous, segregated from urban life and shy in nature, yet my experience was very positive. The strong sense of belief and tradition has drawbacks, especially since a major part of their resources are used for ritual purposes rather than economic activities, such as in health. The literacy rate of scheduled tribes is around 29.6% against the national average of 52%. More than three quarters of scheduled tribes women are illiterate. In the Madiya community I visited, the three major health concerns were malaria, diarrhea and back ache – malaria due to the large amount of standing water in the open drains, paddy fields and jungle; diarrhea due to the unclean wells and poor sanitation; and back ache due to the constant bending required in farming.


Both SEARCH and CRHP have been working with tribals for years in health and social development. Their work with tribals has been understated by a recognition that education of the villagers needs to take place without stepping on long- and deeply-held traditions. In addition to dealing with disease, social barriers have been addressed, including access to government programs, increasing the rate of (higher) education, and in many cases working with government forest policy and conservation efforts that have divested tribals off almost all their rights in the forest.

Sunday, March 1, 2009

On the wrong side of the railroad tracks

The storage space on the tin roof was tiny, the boxes were warped due to rain from months back, and the tin roof shook as the fifth train went by since I had arrived. I looked down the row of clay and tin houses that bordered the train tracks, as children ran along adjacent tracks chasing tires hit with sticks, mothers beat wet clothes against stone platforms or bathed their children, and some men still passed out, now melting in the sun from the heavy night of drinking. We had stopped to speak with a mother in the women’s group who had no legs, cut off from an accident with a passing train as a child. The slum of Mayapuri in Delhi was not one of the bigger slums, and certainly nothing compared with Dharavi slum of Mumbai (and Slum Dog Millionaire), yet was nonetheless eye-opening. Houses were piled on top of each other and squeezed in between, so that each wall separated two houses. Roofs of tin were covered with bricks, sticks, cartons for storage, trash, or anything else that would weigh the roof down. The inside of the one room house was cozy to say the least, made for five to six people and their clothes, food and other needs, with parents sleeping on the bed and children on the floor or on mattresses.


Mayapuri’s roads had recently been upgraded, thanks in part to Asha - the NGO my supervisor had come to evaluate - so that the main road was concrete and side roads had ditches for water. The ditches were meant to be covered to prevent mosquito breeding but in many plays stood uncovered and unflowing, filled to the brim with dirty, soapy water. Some of the roads had yet to be converted to concrete and it was a jumping maze from one clean area to the next, splashing through mud or dust, walking through dirty water puddles and trash-filled passageways. The kids running around us had no problem as they fought for attention, running through and often falling into the mud, getting right back up and pushing the other kid down, squeezing into the photos we were taking. Clothes filthy, cuts and bruises covering faces and arms yet these kids were nothing but smiles.


The maze was equal for my nose, as different smells competed for recognition by my brain. At times the scent of animals dominated, where as at others metal dust (since the slum was situated next to a metal plant), or sweets and tea, or just of trash that accumulated in muddy piles along the street. In addition to smells, Mayapuri was pocketed with settlements, as most slum residents came from different parts of India in search of work and money. In one section were the Gujurati’s, in another from Uttar Pradesh, in another from Orissa or Bihar – all with different languages, trades, cultures, and work skills. Some helped to build the new upper-class mall, others rickshaw driving, or some in the local metal factory. It is exactly that need for work that drives people to the cities, yet without money they are forced to live in transitory and overcrowded areas, creating a slum. Slums are illegal, yet in places like Mumbai 55% of the population lives in them because other options cost so much money.


The traditional definition of a slum is a run-down area of a city characterized by substandard housing and squalor and lacking in tenure security. Mayapuri is an area of land also owned by the government yet inhabited by squatters, who settle in the very condensed area. As it is so condensed, slums are often subjected to abnormally high rates of disease, most commonly diarrhea (rotavirus), malnutrition, hepatitis, worms (round, hook), tuberculosis, HIV, pneumonia, or at times mosquito-born diseases like malaria, dengue and chickun gunya. As it is illegal, the slum is subject to destruction at the government’s will. Some of Asha’s other slums had been leveled in a matter of hours with a day’s notice because the land was needed, with no assistance in relocation. More than just a slum, the leveling destroys an industrious city-within-a-city, where businesses flourish and essential services provided.


As I looked down the row of shacks strung along the railroad tracks, I recognized the difference in the effect that Asha could make in a slum versus CRHP in a rural village. A slum faces a less united community as it is inhabited by pockets of people and most families are first-generation to the slum. In villages, though, residents know each other and relationships have been built through generations. It is more difficult to map out a slum, coordinate slum dwellers to identify their highest areas of need, and mobilize action when the population is so large, the problems so varied and the community so diverse. And as goals can be longer-term in a village, slums need more immediate impacts and are threatened to be destroyed the next day.


Asha has done great work, using CRHP’s model translated to a slum setting. Each area has a local dispensary, composed of a health clinic and classrooms. On the ground, community health volunteers are elected to monitor the health of 250 houses, performing pregnancies, prenatal care and necessary referrals. Female lane volunteers are further responsible for the health of their local lane of 40-50 houses, reporting to the CHV. Groups of women are organized into Mahila Mandels (for empowerment, decisions, and representation) and adolescents into Bal Mandels (for education on sexual health, diseases and nutrition through street performances). In the dispensary, computer and English classes are set up for the kids, encouraging higher education and career paths. On computers, young kids who cannot read English have learned to input data and write formulas in Excel, create logos on Microsoft Word, create powerpoint presentations with photos and graphics, and use google and check their gmail account – further signs that Indians are just way too smart. Success is on a smaller scale but nevertheless great, as 34 kids from the slum have free rides through college, roads have improved and water cleaned, tuberculosis and malnutrition has reduced, and a strong sense of empowerment, especially among the women who have demonstrated they are not afraid to hold their political representation accountable for problems in their city-within-a-city.