India's unrecorded deaths show gaps in data

Nabeela Khan

Published on 5th June, 2017

Official data reveals eight leading cause-groups of deaths in India constituting around 88.5 per cent of total medically certified cause of deaths. It also shows that during the critical period that could lead to death, Indian women are less likely to get access to medical help. More Indian men are likely to be admitted to hospital during the last moments of life than women

India made the registration of every death compulsory in 1969. Fifty years later, 80 per cent deaths are officially not documented in India.  Official data from the Union Health Ministry shows that only 20 per cent of all deaths in India are medically certified, creating a huge data vacuum for preventive measures.

Data on causes of death is essential to undertake appropriate curative and preventive measures for various health problems.  The death registration data also plays an important role in strengthening medical research and is fundamental for monitoring as well as improving the methods of diagnosis and analysis.

The Medical Certification of Causes of Death - 2014, which is the most recent data set is based upon 10,66,221 total medically certified deaths, accounting for 20.5 per cent of total registered deaths.

As per the report out of 1.06 million certified deaths in 2014, 6,66,686 were male and 3,99,535 were female. This figure says that for every 1,000 men whose death is certified by medical professionals, the corresponding figure for women is 600.

The data reveals eight leading cause-groups of deaths in India constituting around 88.5 per cent of total medically certified cause of deaths. Diseases of Circulatory System (31.6%), Symptoms Signs & Abnormal Clinical Findings (13.2%), Infectious and Parasitic Diseases (11.9%), mainly constituted by Tuberculosis and Septicemia, Diseases of Respiratory System (7.8%), mainly Pneumonia and Asthma, Certain Conditions Originating in the Perinatal Period (7.2%), Injury, Poisoning and Certain other Consequences of External Causes (7.1%), Neoplasm (5.4%) and Diseases of Digestive System(4.4%), of which Diseases of Liver alone accounts for 68.1% of the deaths.

The age-wise data reveals that every tenth reported medically certified death has been of the infants (age less than 1 year) and about 73.0% of infant deaths have been reported to be caused by certain conditions originating in the Perinatal Period.  Among the children aged 1-4 years, Heart Diseases have taken the highest toll of 17.9%.

Among the youth (age-group of 15-24 and 25-34 years), “Injury, Poisoning  & Certain Other onsequences of External Causes is the first among the leading causes contributing 26.4% and 20.7% deaths respectively. It implies that these age-groups of youth and adolescent are more vulnerable to injuries and poisoning related deaths.

In the age-group 35-44 years, the first two leading causes, diseases of circulatory system and certain infectious and parasitic diseases are 25.4% and 17.1% respectively. For all the age-groups of 45 years and above, Diseases of Circulatory System is the first leading cause of death.

The highest number of deaths (2, 59,811 i.e. 24.4% of total medically certified deaths), as expected, has been reported for the age-group 70 years and above.

An estimated 26 million births and 5 million deaths (52, 12660 deaths) are registered in India every year. But only a little above 10 lakh deaths (10,66221) are medically certified implying that the reason behind 42 lakh deaths in 2014 is not known.

 Why is death registration so important?

“There are two important parts of death registration; finding the act of death and the cause of death” explains Dr. Prabhat Jha, renowned health economist and founding director of the Centre for Global Health Research.  He says in most low income countries, deaths occur at home and not in hospitals and consequently the cause of death is not known.  The result of which is that there is a data gap in reporting the exact percentage of deaths and the causes that could lead to death

For more than a decade, Dr. Jha has explored data related to death, with a keen eye on the economics of global health.  Dr. Jha is leading a survey of 1.3 million Indian households called the Million Death Study. Under the project, Dr Jha along with his team visited homes across India to conduct door-to-door surveys about recent deaths. They used verbal autopsies" or post-mortems - interviewing those close to the deceased about what happened before their death - as a way of addressing this gap.

The results of the study revealed astonishing facts about deaths. A paper published in fall 2010, for example, indicates that the death toll from malaria is an astonishing 200,000, or 13 times higher than WHO estimates, most of them adult deaths.

Dr. Jha also challenged widely held assumption of the United Nations that 400,000 people in India die of HIV-AIDS every year – more than any other country. The numbers had been based on clinical testing for HIV in young pregnant women. But Jha’s team found that the figure is likely far lower, probably closer to 100,000. The findings on malaria and HIV-AIDS are a part of Jha’s Million Death Study, one of the largest studies of mortality ever undertaken anywhere in the world.

By looking into home deaths as well as those under medical supervision, the MDS has built up a more complete picture of what people are dying of. This could help tailor disease control by identifying diseases common in one place and rare in another, as well as helping spot emerging epidemics. The study's results are already helping fight a major cause of death in India - smoking.  By number crunching the data they found the average male cigarette smoker is losing a decade of life in India. The findings helped prompt India's health ministry to recommend a 200% tax hike on cigarettes in 2014.

Death data collection is a huge task.

For medically certified deaths, data is collected in the prescribed forms. These forms are filled-up by the medical professionals attending to the deceased at the time of terminal illness. Thereafter, these forms are to be sent to the concerned Registrars of Births and Deaths for onward transmission to the Chief Registrar Office for tabulation. Every year Ministry of Home Affairs Statistics Division maps the data and releases these figures in form of a report. Karnataka is one of the first states to have initiated to strengthen data collection and introduce computerised collection of health data in India.  Yet only 35% deaths are medically certified in the state. Thereby revealing that even in one of the India’s most developed and literate states 65% deaths have not been certified, the reasons of which remain unknown.

Last year, the Union Health Ministry decided to collaborate with AIIMS to come up with a National Death Registry which will have data about deaths, including their causes across the country. This is being created because currently the entire death data is not being transmitted to the central depository, which creates hurdles for policymakers in framing health policies and disease related policies according to the official statement.

In order to better envision the future of healthcare system in terms of providing better care to people, devising preventive services and increasing mortality rate, death registration remains critical.