DEAD MAN COUNTING

OFF THE RECORDS

At 23, a pregnant Abhilasha (name changed), in pain and weak, was asked to leave the government hospital in Jamshedpur and go to Lucknow, because the hospital couldn’t handle the complications. Unable to pay travel costs, her family took her home and had a midwife deliver the baby. Frail Abhilasha lacked strength to push, so the midwife had to pull the baby out. The newborn died five minutes after birth; and Abhilasha thirty minutes later.A close family member narrated this story to a doorstep surveyor, who noted every heartbreaking detail . The story then traveled to two doctors to determine cause of death. Prabhat Jha professor of Global Health and an epidemiologist at the University of Toronto, and his team are collecting a million of these stories to one end — they want to find out how Indians are dying.Death data — especially cause of death — is crucial for determining how the country spends its health budget because a death foretold is a life saved.Jha’s Million Death Study (MDS), which dovetailed into the Census of India’s Sample Registration System (SRS) set up to provide demographic data, has emphasized the failure of our civil death registration system, dating back to 1886, to capture deaths. Started in 2001 and aiming to cover a million ‘ verbal autopsies ’ MDS has thrown up big surprises, overturned various estimates of deaths and exposed new causes.“Each story can show the failures of the system from administration to public health. There is a real elegant truth to asking houses respectfully about what happened. In rural areas, people do tell you what is going on in an unblemished manner. We had thought we would have a problem with sensitive things like suicides or AIDS, but people are very forthcoming,” says Jha, who credits the decision to include verbal autopsies in the SRS to Jayant Kumar Banthia, former census commissioner and registrar general of India.Banthia reveals that the SRS, when set up in 1969, was only supposed to provide death rates. It was later improved upon by adding age and sex, and information on agespecific mortality, leading to estimates of life expectancy. But the absence of queries regarding cause of death led to policymaking that was not in consonance with health priorities. “The entire health expenditure was focused on family planning and infectious diseases till even three years ago. There has been an epidemiological transition in most states but we were not prepared for that. Why are we not in a position to control diabetes or the epidemic of cervical cancer in women today?” asks Banthia.Surveyors from MDS’s 800-strong team visit a nationally-representative random sampling of areas, knocking on the doors of each house to record births and deaths. If someone in the family has died, they record a simple recounting of events in the local language and ask a checklist of questions. The story is then sent to two of 350 trained physicians who assign a cause of death using the WHO International Classification of Death (ICD 10) system, which the MDS has adapted to India, covering 250 diseases that account for 90% of all deaths. The two doctors have to agree on the cause of death; if they disagree, a third doctor adjudicates the case. Jha says, “The system has worked quite well. There can be error when the narrative is not good but about 80% of the field staff writes a good one. It depends on whether the person who is talking lived with the deceased.”The MDS has helped India reexamine cause of death. For instance, data from the last decade has shown that…Malaria deaths were 13 times higher than the number reported by WHO. HIV/AIDS deaths were lower than official estimates Suicides and snakebites were taking more young lives than estimated from crime or hospital records.One of the biggest surprises was smoking deaths. “Earlier estimates by WHO and others had pegged the number at three lakh during the same time period. But MDS showed that one million deaths had already occurred by 2008,” says Jha. “This gave the health ministry further ammunition to argue for higher taxes or pictorial warnings on packs.”The success of large sample surveys like MDS only highlights the inadequacies of the 1969 Registration of Births and Deaths Act, which has crippled district officials and researchers collecting mortality data. The process of collection and maintenance of vital statistics is in place in all state governments, down to the panchayat or municipal level. But Banthia says, “Death registration in India is extremely low, especially among children and women because they are not associated with property rights.”Abhilasha’s death would probably not be registered in the system, and Jha claims that of nine million deaths in India roughly a year, about six million have some kind of registration that is typically in urban areas but the cause of death is missing for most of these registered cases.It’s not that the data isn’t collected. When a family registers a death certificate at a local administration office, say the panchayat office, the written report goes to the District Statistical Officer (DSO). But the DSO’s monthly report, collected for the state registries department, lists only the number of deaths — male and female — wiping away other information captured in the death report such as caste, income-level and cause of death. Prashanth NS figured this out when, as a public health researcher trying to collect district level data for death research, he asked a DSO how many people were dying of cancer. Pointing to a pile of files, the DSO said, “Who can find out?”Through a series of RTI requests Prashanth and his team from the Institute of Public Health, Bangalore found that the only data publicly available was state-wise death totals. In that too, age-wise disaggregation was not available. Prashanth’s team filed several RTI requests, one to the Registrar General of India (RGI) urging him to make the data publicly available. The RGI in March 2012 directed all chief registrars of states to computerize their systems and make disaggregated data available. In late 2013, a second phase of RTIs revealed that not much changed. “All of this gives the impression of a very poorly performing registration system that is of no use for public policy,” says Prashanth.While studies like MDS provide insightful analysis on country-wide deaths, the disaggregated data at micro-levels that help districts plan health expenditure or researchers advocate policies is practically nonexistent . For instance, how many women between ages 30 and 50 in a district died of malaria? And how many of them were from marginalized communities? While this data is being collected, it is lost in the ether of official procedures. Banthia says the system of death reporting from the ground up has broken down. “No one takes interest. Directors of statistics of state governments hardly have time or inclination . There is no uniformity in the way it is collected either. There is no one person who is given this exclusive appointment and that is the problem. It is always an ‘additional responsibility’,” says Banthia, revealing that SRS is the single most credible source today.The epidemiologist, demographer and public health researcher all agree that while sample surveys like MDS, which are expert led, are important, a civil registration system needs to be the basic source of data. “MDS requires constant funds and manpower. In a large country like ours, we need lot of sources to triangulate our data. The MDS gives us a lot of hypotheses — like the snake bite data is great but not helpful at the district level,” says Prashant. Jha agrees, but argues that since India is well ahead of other countries, it’s natural to extend cause of death surveys to the district level as a feasible alternative until civil registration improves or Aadhar kicks in.Experts agree that while civil registration on the “act of death” will improve, “causes of death” will take longer. But Jha feels India doesn’t have to wait that long. “The future of good public health in India is in getting things down to the district level and household reporting. The Delhi CM, for instance, has suggested mohalla-level decision-making . So each mohalla could commission one person to knock on doors to ask about deaths. You will always need local accountability. The truth is in the households,” he states.