Women from marginalized sections have been either denied life-saving maternal health care or received it after inordinate delays

reportA combined effort of 22 civil society organizations, the report, “Dead Women Talking” (July 2014), prepared by B Subha Sri and Renu Khanna for the Common Health and Jan Swasthya Abhiyan, is based on documentation of 124 maternal deaths over a period of two years, January 2012 to December 2013 in 10 states — Maharashtra, Gujarat, Rajasthan, Uttar Pradesh, Bihar, Jharkhand, West Bengal, Chhattisgarh, Odisha and Assam. Among those involved included three NGOs from Gujarat, Area Networking and Development Initiatives (ANANDI), Centre for Health Education, Training and Nutrition Awareness (CHETNA), and SEWA Rural. Excerpts:

Almost 45% of the women who died are from scheduled tribes and a further 17% are from scheduled castes. Most of the deceased women were wage labourers or agriculture workers, in addition to being responsible for their daily household chores. Six women were migrant labourers and four home-based (beedi) workers. Two of the women were accredited social health activists (ASHAs) themselves, one was a sahayika in an anganwadi and one a midday meal in charge of a school — it is also noteworthy that while these women were workers in public institutions, they were also the lowest and most peripheral workers in the hierarchy of these institutions.

Of the 124 deaths, the majority (82%) took place in the post-partum period. Of these, 52 women died within 24 hours of delivery. This is not surprising as most maternal deaths are known to occur in the immediate post-partum. Almost 40 percent of the women died during their first pregnancy and another 38 percent during their second or third pregnancy. Only 28 out of the 124 (22.5%) women had four or more pregnancies. Twenty eight deaths took place in the antenatal period and 9 in the intranatal period. Five women died during or after an abortion.

The large number of deaths in the antenatal period has implications for policy and programme as interventions to address them would be different from those in the intranatal and post-partum period. Care in the antenatal period is found severely wanting and this contributes to these deaths. Similar is the case of deaths in the post-abortion period and its implications for comprehensive safe abortion care.

Two deaths were late maternal deaths (beyond the period of 42 days). While standard measurement procedures for maternal mortality in standard databases like the Sample Registration System or even the Maternal Death Review process of the Government of India measure deaths only up to 42 days, recent literature is showing that deaths beyond this period can be intimately related to the pregnancy (22) — our documentation of the two deaths that took place beyond 42 days substantiate this and highlight a need to start documenting such deaths.

report1Sixty of the 124 women died at home; it is noteworthy, of these, 12 women had sought care in one or more facilities, public or private, for the final event before reaching home and dying. This shows that nearly 60% of the women managed to reach a facility when faced with a complication. Sixty of the 124 women died in health facilities. Of these, 42 women died in public facilities and 18 in private facilities.

Thirty one women died on the road — 7 of these deaths took place before reaching the first facility, 22 women died while travelling from one facility to another, again highlighting that they had sought care at a health facility before dying, and two women died while being brought home after the families decided not to seek any further treatment. One woman died of an abortion complication in the home of an ANM who was an unqualified and unlicensed provider of abortion services

Cause of death

Efforts were made to assign a probable medical cause of death wherever possible from the family’s narrative. This was initially done by one obstetrician and subsequently finalized in consultation with two senior obstetricians. Where relevant, more than one cause of death was assigned. The most common cause of death was post-partum haemorrhage (29 women, 23.4%), followed by anaemia (22 women, 17.7%). Haemorrhage in the form of antepartum haemorrhage caused 6 deaths.

Fourteen women (11.3%) died because of severe pre-eclampsia / eclampsia. Notably, infectious diseases contributed to 4 deaths — two because of malaria and two due to tuberculosis. Latrogenic causes were responsible in 5 cases — 3 due to complications of caesarean section, and 2 where a reaction following blood transfusion occurred. In 35 of the 124 women, more than one cause of death was identified. These include anaemia (4), postpartum haemorrhage (6), eclampsia (4), sepsis (4), sickle cell anaemia (2) and tuberculosis (1).

report2It can be seen here that of the 28 deaths that took place in the antenatal period, 9 were due to eclampsia / severe preeclampsia and 4 due to anaemia — all of which could have been prevented by good quality antenatal care. Of the post-partum deaths, 18 were due to anaemia — again these could have been prevented by picking up the anaemia early and also by managing anaemia adequately in the intranatal and immediate post-partum period.

Majority (78 out of 124) of the women who died were very young, less than 25 years old. While it could be argued that most pregnancies occur in this age group, this is indeed a tragic loss of young women’s lives when performing a social role of reproduction.

Early marriage has been seen as a major problem affecting the health of women; 47% of young women in the country were married by the age of 18 years; 26 of the 124 women who died in this sample were between 16 and 20 years of age and all except one of them were married. It is also known that women who have a pregnancy at a very young age face a high risk of morbidity and mortality. In spite of this, the narratives revealed that several young women in the sample had not received any antenatal care at all during their pregnancy.

  • Rita was a 16 year old adivasi woman from Jharkhand in her first pregnancy. She had multiple problems during the pregnancy — malaria, jaundice, swelling of feet and face, night blindness –but her antenatal care was restricted to receiving one dose of tetanus toxoid. She died of eclampsia, a condition for which younger women are at much higher risk and which could have been prevented had the risk factor been identified and acted on during the antenatal period.
  • Urmila, a 32 year old migrant woman in cotton mills, had a past history of tuberculosis. Of her three previous deliveries, one was at a construction site where she worked and the next two at home. In her fourth pregnancy, she had had only one antenatal care visit at a PHC where only a tetanus toxoid injection was given and she was handed ten tablets of iron folate. No haemoglobin or BP check had been done. Urmila subsequently developed severe breathlessness and after desperately seeking care at seven different facilities over 5 days, her family gave up and took her back home where she died.
  • Similarly, a 28 year old ASHA from Jharkhand died during her fifth pregnancy, two of her previous children having died in infancy. She did not receive any antenatal care at all.
  • The stories of two other women highlight such lack of antenatal care for older, multi-parous women.

report3This leaving out of both young and older multi-parous women may not be entirely coincidental considering that, until recently, both these groups were excluded from the Janani Suraksha Yojana. Their exclusion from the scheme makes frontline healthcare providers ineligible for incentives when caring for them, and it has been anecdotally reported by several grassroots activists that thus many of these women do not get the required care.

Caste and religion

Majority of the women whose experiences we documented belonged to scheduled tribes, scheduled or other backward castes, social groups that have been historically deprived of fruits of modern development. Previous studies have also shown that these groups have a disproportionately higher maternal mortality.

In Assam, it is noteworthy that all eight women whose deaths were documented from Darang district were Bengali Muslims. It is well known that this group has been traditionally marginalized with their citizenship being questioned, thus denying them several privileges and rights.

Double burden of responsibilities

In addition to their domestic responsibilities, more than 52% of the women for whom data on occupation was available, worked as daily wagers and labourers. The fact that the narratives reveal that some of them worked in the last month of their pregnancy indicates that these women were extremely poor.

Geographical location

Another group of women who were especially vulnerable and were excluded from care were those in remote hamlets. Families revealed that these hamlets did not receive any services at all.

  • Kamlalived in Jharkhand in an adivasi hamlet where the nearest road is 10 km away. The ANM and the Mamta vahan only travelled up to the point with road access; to receive care, Kamla would have to walk to this point 10 km away from her village. Thus, it is not surprising that Kamla did not receive any antenatal care during her pregnancy. When she started having labour pains, there was no way she could reach the Mamta vahan pickup point as her husband was unwell and there was no one to carry heron the 10km journey, so she delivered at home and died a few hours later.
  • Similar is the story of Rupa, a 17 year old adivasi woman in Chhattisgarh. Her family had been resettled because her village was in an area declared a tiger reserve. The resettlement village was 10 km away from the road and was inaccessible during the rains. There was no ICDS centre in the village, the ANM did not visit there and no immunization took place. Rupa, pregnant with her first child did not therefore haveany antenatal care. She delivered at home developed post-partum haemorrhage and died before the family could get a vehicle to transport her to a facility.report5

Migrants

Yet another group of vulnerable women that were not covered by the health system were migrant workers. At least six out of the 124 women who died in this sample were migrants. Portability of services was an issue for these women. Migrant women were not covered by antenatal services or ICDS services, and when they died, their deaths were not officially recorded because they did not belong to any ones area.

A special group of migrants is those in tea estates in Assam. Two women in our sample from Dibrugarh district of Assam were tribals living and working in tea estates. Civil society organizations working in these estates have observed that health facilities for these tribals are almost non-existent. Bengali Muslims in Assam are also treated as outsiders and therefore migrants.

Similarly, the cultural practice of women moving between their marital and parental homes was not adequately addressed in the programmes, and these women were perhaps made ineligible for certain services and entitlements that were considered to be only for daughters-in-law and not daughters.

Gender as a cross cutting issue

Gender issues were seen to be cross-cutting across other social vulnerabilities. Women’s lack of decision making, a lesser value placed on their lives, and the health system’s neglect of issues affecting women, all came up from the narratives.

That son preference can be such an overarching determinant of maternal death is aptly described by the story of Baria from Banaskantha district in Gujarat. She was diagnosed with a heart ailment in her earlier pregnancy. Baria had three children including one son earlier but had a desire to have two sons, and so she went ahead with a fourth pregnancy despite her family being aware of the risk.

Social stigma and total lack of care attached to a pregnancy out of wedlock can also subject women to high vulnerability. The story of Neeru from Poreyahat in Jharkhand who died of an unsafe abortion after getting pregnant before marriage is a case in point Even though young people’s right to seek reproductive healthcare, including abortion services, is recognized in international human rights law and in India under the MTP Act and various programmes, such cases show how these are not translated into reality on the ground.

System induced vulnerabilities

The impact of the family planning programme and the two child norm on frontline workers and how it affects maternal health is amply highlighted by the case of Shanta, an adivasi woman in Gadchiroli district of Maharashtra.

In her third pregnancy with two previous girl children, Shanta was under tremendous pressure to produce a son. The ANM however insisted that her husband should undergo sterilization as they already had two children. In this scenario, no antenatal care was provided to Shanta this time, nor did she seek care. She later delivered a boy who however died of prematurity. Shanta went into depression and died four months later of a worsening infected ulcer on her leg.

Until recently, the Janani Suraksha Yojana programme excluded women at extremes of age and in many states still requires documentary proof of poverty that many poor women may not possess to be eligible for cash incentives. Thus the most vulnerable women do not receive benefits. The whole premise of the programme that assumes that bringing women to institutions will automatically translate into safe deliveries has been questioned.

Socioeconomic vulnerabilities of women: The role of the health system

Many of the women who died were socially, economically vulnerable. In several of their lives, these multiple vulnerabilities coalesced to produce cumulative effects. These women, because of these vulnerabilities, faced severe challenges inaccessing healthcare. The aim of public health services – both community based and facility based – is to ensure maximum access to services, including antenatal care, emergency obstetric care and post-partum care. A rights based approach to providing universal access would focus on equity and social justice and make special provisions for women with vulnerabilities to ensure they definitely have access to care.

However, based on the narratives of the deaths, it seems that women with vulnerabilities are actually getting left out of services like antenatal and post-partum care because of the way health services are structured and delivered presently. Highlighted below are some instances where multiple vulnerabilities coalesce in women’s lives and how the health system fared in addressing their problems:

The death of Dhani

Dhani was a 26year old tribal woman living in Sonitpur district of Assam. She had two sons, 4 and 3 years old. Both Dhani and her husband were daily wage labourers. Their house was made of just three small mud huts with thatched roof. They did not have any agricultural land, the only piece of land they ownedis where these huts stood.

According to her mother-in-law, Dhani was normal during her third pregnancy and working as usual. She started having pain a week before the birth of the baby, and she was facing difficulty passing urine. After two days, she was unable to pass urine at all and was in severe pain.

The family decided to take her to a doctor so they sold their only cow but they did not take her to a properly qualified doctor, instead they hired a car to take her to a nearby pharmacy where someone somehow managed to extract urine from her bladder. The pharmacist advised them to take her to the city for better treatment, but they took her back home. When asked why they did not take her to a government hospital, her mother-in-law said the local ASHA had come to their house once and given some tablets and asked Dhani to go to the sub-health centre for checkup, but Dhani did not go. When Dhani developed problems, they were worried to take her to the government hospital because they felt if they took her to the government hospital after she had problems, the staff would mistreat them and ignore Dhani – they avoid the government hospital staff as much as possible because they often mistreat them.

When labour pains started in the evening a few days later, they called the traditional dai; she helped Dhani to deliver a girl child.

When asked why they did not call an ambulance to take her to a hospital, Dhani’s mother-in-law explained how difficult it is for them to organize money, vehicle, ambulance, other resources or any kind of help during the night. Rivers surrounding the village do not easily allow the villagers to communicate with rest of the world. It is almost impossible for people like them to organize help from the other side of the river especially during the night when a broken wooden bridge is the only access to the outside world.

Dhani’s husband could not be interviewed as he was away at work. He couldn’t stop working even though his wife had died just a few days back. He had to support his 6 member family.

The death of Heena

Heena was a 22 year old tribal woman who lived in Kendujhar district of Odisha. Both she and her husband were illiterate. They did not own any land, were certified to be below the poverty line, and according to her husband, often did not have enough to eat. They lived in a remote hamlet where the nearest motorable road was 10 km away, and the nearest ambulance pickup point was 40 km away.

This was Heena’s second pregnancy. Her first child had died at the age of 6 months due to an infected abscess. The nearest sub-centre was 6 km away and though the ANM did visit once a month, the hamlet could not be reached in inclement weather. Heena did not seek or receive any care during this pregnancy.

When Heena’s labour pains started, her husband tried to arrange for some form of transport to take her to a health facility. It took him about 8 hours to do so they did not have the number of the Janani Express, nor did — they receive any help from the ASHA or ANM. They set out to the nearest CHC that was 50 km away, but Heena delivered on the way and died soon after, probably due to excessive bleeding.

The death of Nayana

Nayana lived in Azamgarh district of Uttar Pradesh and belonged to a scheduled caste community. She had been married at the age of 14 and was 25 years old at the time of her fifth pregnancy. Of her previous pregnancies, three children survived.

Nayana and her husband had migrated to Delhi in search of a job. While there, Nayana was diagnosed to have tuberculosis and received treatment. Once better, Nayana returned home. She did not realize she was pregnant till 6 months later. By then, her husband had lost his job and this made food availability for the family a problem. The lack of nutrition made her weak and tired. As Nayana’s condition worsened, her family took her for a checkup she was diagnosed to have tuberculosis again, for which treatment was begun in the nearest CHC.

In the meantime, Nayana went into labour. she was taken to the CHC by the 108 ambulance and had a normal delivery. The baby’s birth weight was found to be low, and after a days’ treatment with oxygen, both Nayana and her baby were discharged.

Once home, Nayana developed fever — she was taken to the PHC on the second day where she was given some medicines by the doctor and sent home. However,  her condition kept worsening. About a week later, she was admitted in a private hospital in the nearby town. Although treatment was initiated, Nayana died a few hours later.

These stories of the deaths of women show how multiple social determinants interacted to produce adverse health outcomes — the relationship between rural residence, migration, food security, tuberculosis, pregnancy outcome, neonatal outcome, are all starkly visible in these narratives. The health system could have responded in multiple ways in mitigating some of the problems these women were facing. Instead, we find that it miserably failed in doing so.

For example, Nayana was registered for tuberculosis treatment with a public health facility. Even though she delivered in the same facility, no particular care was given in the post-partum period and in fact she was discharged before the mandatory 48 hours. Even when she sought care in a public health facility for post-partum fever, the relationship between this and her tuberculosis was not picked up, with grave consequences for her. While there were factors like migration, loss of livelihood and absence of food security that greatly contributed to her death, the health system could have definitely saved her life, given that she specifically sought care from it not less than at three different times, if it had at the least coordinated between her tuberculosis treatment and her pregnancy care, and ensured quality in both.

Similarly in Heena or Dhani’s cases, systemic neglect of their hamlets over several decades is obvious from the lack of roads and connectivity these definitely do need to be corrected — however, in the short term, the health system could have made special arrangements, for example boat ambulances in Dhani’s case, that would have ensured that they received timely emergency care.

The Government of India is a signatory to various international declarations and covenants of human rights. It has a constitutional obligation to respect, protect and fulfill the rights of all of its citizens. However, here we find that women from the most marginalized sections of society – scheduled castes, adivasis, migrants, poor women – have all been either denied life-saving health care or received it after inordinate delays. By allowing this to happen, the state has failed in its duty to protect their human rights.

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