The death of a mother

(This article is a part of the web-exclusive series from our latest issue 'At the cost of health'. More from the print quarterly here.)

In August 2014, 24-year-old Masuhun Khatun from Fulvari village of Bihar's Kishanganj District was expecting her fifth baby. She was five months pregnant when she tripped and fell in the front yard of her house. Late that night, Khatun woke up writhing in pain and bleeding profusely. Her husband tried calling a government ambulance but to no avail. He then hired a private vehicle to get Khatun to the nearest government hospital. They found no doctors there and she was taken to a private practitioner, who said she needed to have an abortion.

Two weeks after the abortion at a private clinic, Khatun started bleeding again. This time she was taken to a state-run hospital where they found foetal remains in her womb. The hospital lacked adequate facilities, and so, Khatun was forced to undergo a remedial procedure at home. The operation was conducted by a state-appointed auxiliary nurse midwife (ANM), even though government rules do not allow this. For three weeks, Khatun shuttled between private practitioners and state-run facilities. Her condition worsened over several days until she died.

Stories of women like Khatun, who die in labour, are recorded only in the statistics. According to figures released by the Government of India, approximately 56,000 women die every year due to pregnancy-related complications. Even though there has been progress – maternal mortality rate has fallen from 437 deaths per 100,000 live births in 1990-1991 to 174 in 2015 – India still accounts for the highest number of maternal deaths globally. Most of these deaths would be prevented if the women received the medical care they are entitled to. Yet continuing deaths during pregnancy haven't pushed the authorities to take action or resulted in better policy planning to solve systemic issues. UNICEF's 2008 report 'India's Silent Tragedy' states how maternal deaths are invisible: "They don't leave any trace behind, and their deaths are not accounted for."

Khatun's story came to light after it was documented by Navita Devi, who combines her work as a Dalit activist with being a reporter for a community-media organisation, Video Volunteers, an NGO based out of Goa. Video Volunteers, with which the writers of this article are associated, has so far trained 75 women from socially-excluded communities of rural India to monitor and report on maternal health. These reporters are mostly from Dalit, tribal and religious minority communities of Jharkhand, Chhattisgarh and Bihar. Many of them have had terrible birthing experiences themselves and feel passionate about preventing other women from going through the same experience. "Delivering my first two children at a government hospital was a horrifying experience. The nurse scolded me repeatedly. I finally delivered on a hard, aluminium birthing bed. I decided to go to a private hospital for my next delivery. We had to take a large loan, but I wasn't going back to the government hospital. I report on maternal health because I don't want other women to go through what I did," says Mary Nisha, a land-rights activist turned community correspondent from Godda District of Jharkhand, the state with the fifth worse maternal health indices in the country.

What the law promises

Pregnant women and very young children in India receive healthcare through three main government programmes – the Janani Suraksha Yojana (JSY), the Janani Shishu Suraksha Karyakram (JSSK) and the Integrated Child Development Services (ICDS). Together, they are meant to comprehensively address maternal, neonatal and preschool-children's health.

Launched in 2005, the JSY is a flagship programme aimed at reducing the maternal mortality rate and supports safer maternal and neonatal health. It specifies that women below the poverty line should receive free prenatal and postnatal care at state-run health facilities. It also makes provisions for free medication, IFA (iron-folic acid) tablets, vaccinations and nutrition for both the mother and child, till the child is six. To reduce out-of-pocket expenditure, the scheme mandates free antenatal check-ups, blood transfusion and transport services to and from health centres. Finally, women are given cash incentives of INR 1400 (USD 21) in rural areas and INR 1000 (USD 15) in urban areas for delivering in state-run health facilities.

Launched in June 2011, the JSSK is meant to supplement the JSY, offering free services to all pregnant women and sick neonates at public health institutions. The scheme envisages free and cashless services to pregnant women, including normal deliveries and Caesarean section operations, and also treatment of sick newborns (up to 30 days after birth) in all government health institutions across the country. The cash assistance given to pregnant women under the JSY is supplemented by JSSK as well.

The third programme, ICDS, operates through the network of Anganwadi centres which are 'courtyard shelters' for government-run childcare services. It is meant to provide supplementary nutrition to young children up to six years of age along with pregnant and lactating women. In addition, Anganwadi workers' duties include scheduling immunisation shots, conducting regular health check-ups and providing referral services to government clinics in case of health issues that require medical intervention. Children and mothers visiting Anganwadi centres are also supposed to receive health and nutrition advice from the workers.

Sadly, none of these three schemes have been implemented properly. Between 2010 and 2015, 57 reports filed by grassroots reporters from Bihar, Jharkhand and Chhattisgarh documented 68 separate violations of government guidelines, representing the larger malaise affecting public-health services. They show that basic health infrastructure is either completely absent or compromised. Lack of trained medical personnel and corruption among the existing staff of health centres add to the inefficiency.

Collectively, the reports also document issues like gender dynamics, child marriage, forced sterilisation and unsafe abortion procedures that worsen maternal mortality rates. The current approach has been to give pregnant women cash incentives to increase institutional deliveries, but it is time to move beyond that. The results of on-the-ground documentation calls for a more holistic approach to reproductive healthcare where there is access to abortion and contraception, and most importantly, a focus on the quality of care. There is a need for government programmes to examine whether health facilities are equipped properly. The infrastructure and staff should be geared towards providing women with a safe and dignified environment in which they are treated respectfully and feel in control.

Tales of harrassment

The JSY happens to be the largest conditional cash transfer scheme in the world with over 50 million beneficiaries. Studies in nine of India's poorest states, including Bihar, Chhattisgarh and Jharkhand, have found that births in government-run clinics have increased from a pre-programme average of 20 percent to 49 percent in the last five years. JSY was formulated under the assumption that institutional births – deliveries in clinics and hospitals – were safer than home births because of the presence of trained healthcare professionals and access to emergency services. Significant financial barriers in rural areas have also been factored into the calculations, which is why JSY provides free access, plus cash incentives, for institutional deliveries in government facilities. However, this does not automatically translate into safer births or reduction in the maternal mortality rate.

A 2013 study conducted by Bharat Randive, Vishal Diwan and Ayesha De Costa, analysed data from the Sample Registration Survey of India and the Annual Health Survey, and showed that an institutional delivery is not a guarantee for skilled birth attendance. JSY has indeed resulted in a larger proportion of rural women coming to hospitals and health centres for deliveries, but requisite services and infrastructure are often missing at these institutions. Add to this, the culture of extreme neglect of patients in government health facilities.

Mukesh Rajak, a Video Volunteers reporter, has documented 15 cases of women who came for delivery at the sub-divisional hospital in Madhupur block, Jharkhand, and ended up waiting seven to eight hours before being attended to. Mukesh vividly remembers the case of Baby Devi who waited at Madhupur block's primary health centre (PHC) for 10 hours. She was also unable to get the free transport to travel to the nearest district hospital. Eventually the ANM at the centre made the delivery, assisted by the cleaning staff.

According to Mukesh, "If anyone can afford private healthcare, they do. It is only the poorest women, mostly from marginalised communities, who go to these facilities… they go, despite knowing about the lack of services and the possibility of extortion, because they need the money that they are promised if they deliver at the hospital." This is a severe indictment of the scheme that seems to statistically increase the numbers of women having institutional deliveries, but ignores the indignity, inconveniences and suffering they undergo.

Researchers Ashish K Jha and Kirstin W Scott in a 2014 paper published in the New England Journal of Medicine pointed out that JSY did not give importance to the quality of care. This, in turn, discouraged communities from using public health services, even when they are offered for free:

'Quality care' is a distant dream for rural women, especially for those from scheduled castes, scheduled tribes and OBCs. In districts with a large adivasi population under the Santhal Parganas administrative division in Jharkhand, the situation is dismal. In 2010-2011, Santhal Parganas had an MMR of 325, far higher than the national average of 225. Here, the hospital authorities charge patients even for using the toilet. Surujmini Marandi, a tribal woman Godda District, spent all her money on trips to the hospital's toilet while waiting for doctors to attend to her. Later, when she had run out of cash, she was forced to defecate in the open. The hospital had depleted its stock of free medicine and did not serve meals to its patients. Marandi stayed hungry and bought medicine from a private medical shop instead. Her baby was finally delivered by an ANM, even though, according to health ministry guidelines, at least two doctors should be present in a hospital for deliveries. Marandi had to pay an additional INR 400 (USD 6) for "services rendered" before she and her baby were discharged.

A large percentage of women accessing JSY come from lower castes and economically backward sections. According to a study by researchers from the Indian Institute of Technology, Patna, caste is paramount in determining birthing experiences. They found that in cases where the service providers were from the upper caste, pregnant women from low castes were mistreated. One of the service providers responded to the researchers’ questions by saying, “the low caste rural women should be happy that they are given money as well as facilities; they should not worry about the [quality of] facilities and treatment they get.” Such attitudes define experiences like that of Tanni Devi, who gave birth at the Madhupur District Hospital. “I was admitted but for seven or eight hours; nobody attended to me.” Like many, she too had to resort to using private services. Gyanti Kumari from Siwan District, Bihar has also documented how an entire Dalit village has been prevented from accessing free maternal-health provisions.

Pregnant women are entitled to free ambulance services to bring them to government health facilities for delivery. However, experiences on the ground show how difficult it is for pregnant women and their families to access these services. Shikha Pahadin remembers how her sister-in-law had to be carried in a makeshift bed to better roads because the ambulance refused to come till Baraghutu village in Sahibganj District, Jharkhand. Though there is a dirt road leading up to the village, government-run ambulances regularly refuse to use that road. “If influential people call for an ambulance, then it comes right up to their doors. But common people regularly get their requests rejected and the excuse is ‘bad roads’,” says Pahadin. In another instance, after being told that no ambulances were available, a family arrived on a private vehicle only to see two ambulances idly parked in the Madhupur hospital compound. According to Mukesh, the non-availability of transport services significantly affects the overall state of maternal health. “Most rural women don’t have access to regular antenatal check-ups. As a result, they don’t know their date of delivery and it is often difficult to get ambulances on short notice when labour starts,” he says.

A study conducted among over 300 respondents from six districts of Jharkhand in 2011 revealed that mothers opting for institutional delivery, on an average, spent INR 1000 (USD 15) more than mothers delivering at home. Tanju Devi from West Champaran District of Bihar, who did not receive any of the benefits promised under JSY, decided to conduct an in-depth investigation into the systemic gaps in the area. According to her, one ambulance serves all the 18 villages in the Gaunaha Block where she lives. As a result, it seldom reaches women on time during an emergency. The mother-in-law of Pratima Devi, one of the many pregnant women that the ambulance service has failed, told Tanju Devi, “Only divine intervention can ensure proper and free treatment at the government hospitals. Nothing is ever free.”

The JSY scheme’s cash incentives are supposed to be distributed to the women within 48 hours of giving birth. Yet Chunnu Hansda reported from Indra village in Hazaribagh, Jharkhand that over 70 women are yet to receive the money they are entitled to even two years after giving birth. Women from Chunnu’s village say that they had to keep going back to the hospital and reapplying for the money. Since transport is expensive and not easily available, these visits need a lot of planning and involve leaving their children at home for the whole day. Kavita Devi, one of the village residents, said, “This is just harassment! If the government does not want to give us the money, they should stop announcing cash incentives.” Part of the problem, according to Gyanti Kumari, who investigated hospitals in Bihar’s Siwan District, is that the rural poor often failed to assert their rights as they were either unaware of them or afraid of retaliation by government officials.

Corruption is the norm when it comes to funds for maternal health infrastructure and services – money ‘disappears’ routinely, often with the knowledge and support of local officials and the powerful elite in villages. In addition, women from poor communities often have to bribe ill-paid nurses and ward boys to access treatment. Shikha Pahadi, Gyanti Kumari and Mukesh Rajak have all reported about corruption, documenting cases where ANMs illegally demand payment for their services in district hospitals in Jharkhand and Bihar. For instance, Munni Pahadi was forced to pay INR 300 (USD 4.50) to an ANM when she gave birth to a boy in 2014 at the district hospital of Sahebganj, Jharkhand. Even after Munni’s family had paid up, fearing they would not be attended to, the other ANMs continued to ask the family for more money.

A health crisis

Adding to the overall bleak situation is the massive shortage of trained frontline health workers as well as doctors. According to Health Ministry guidelines, one ANM is supposed to look after eight sub-health centres. Yet, this is hardly ever the case. In Jharkhand’s Dhanbad District, two ANMs look after 23 centres in Baghmara block. Ahilya Devi, who is close to retirement age, looks after 14 of the 23 centres.

A sub-health centre (SHC) is a state-run ‘first care provider’, staffed by an ANM who is responsible for administering antenatal care to pregnant women. The average radial distance to a SHC is 2.5 kilometres, according to the Rural Health Statistics Report 2014-2015. However, in reality, most SHCs stay locked forcing women, and the Accredited Social Health Activist (ASHA) frontline health workers who assist them, to travel long distances to receive even basic treatment. ASHA workers, who are also called sahiyas, are massively overworked and underpaid. They ensure JSY is implemented by bringing pregnant women to hospitals for antenatal check-ups as well as for deliveries. For the former, they are paid five to ten rupees per beneficiary and for the latter about INR 150 (USD 2.25). A lot of this money then goes to the nursing staff as bribes to accept patients. ASHA workers have been threatened, turned away or shunted to hospitals in remote areas if they bring in poor patients.

Several testimonies reveal that women forgo check-ups altogether because they cannot afford to travel to faraway clinics. In interviews to correspondent Reena Ramteke, women from Khatti village in Chhattisgarh said that ANMs hardly ever visit the village, and that the SHC in the village always remains locked. Of the three women interviewed, one lost her baby within six days of birth due to lack of medical assistance; another had a still-born baby due to an unassisted home-birth procedure; and the third is nine months pregnant with no access to healthcare.

A case for community monitoring

There is no denying that the system needs an overhaul, requiring the state to employ more rural health workers, invest in basic infrastructure facilities and set due processes to establish accountability to stem corruption and ineptitude. But top-down approaches tend not to work, since on paper all the government schemes for maternal health look credible and seem to be delivering on all their objectives.

While certain components of government programmes have been successfully deployed, universal implementation is still a pipe dream. The immediate priority is to adopt and implement comprehensive labour policies that take care of the recruitment procedures, along with incentives and training modules for frontline health workers. Another aspect that needs attention is the problem of inadequate funds. Even when released, many disbursements lie unused because of the lackadaisical attitude of local public health officials. There is no monitoring body at the local level in India, which means that there is usually no action taken to improve the ground situation, even if it is a problem that can be solved simply by reporting it to the right authorities.

Given these realities, there is a strong case to be made for bottom-up interventions that involve the community. Take the case of Pipratand village in Jharkhand, where vaccination procedures had come to a complete halt for over a year at the Anganwadi centre. Women had to travel to the faraway primary health centre in Baghmara for vaccinations. Bharti Kumari reported the matter, screened her video for the Chief Medical Officer SM Jafarullah and wrote an application urging him to take action. “The ANM posted at the Angwanwadi centre in Pipratand had retired and there was no ANM was assigned to replace her. This is why no vaccinations were taking place,” said Jafarullah. He reassigned the centre to another ANM and vaccinations have now resumed at Pipratand.

In cases of corruption, local residents can be mobilised to actively campaign for their rights. After Aamna Bibi’s child died because of delays and ineptitude at the Madhupur sub-divisional hospital, Rajak was able to rally the community and get the women from the area to speak out, for the first time, against the ill-treatment they had encountered at the hospital while giving birth. Public demonstrations were organised to make sure the fact-finding process was carried out by senior officials. The story got considerable local and national coverage, which helped the community achieve its goals. A petition was launched on Change.org to end medical negligence at this hospital, which received 34,807 signatures from across the world. The government has since compensated the families of Aamna Bibi and provided them money through Indira Awas Yojana, the government housing scheme. The immense public pressure has also ensured better services at the hospital. Recent visits and eye-witness testimonies show that doctors are now available at all hours to attend to patients.

“A lone reporter is easily dismissed by officials. So it’s important to get the whole community together,” says Rajak, referring to how he tackled the problem of ANMs who illegally demanded bribes. He gathered a group of 20 sahiyas for a screening of his video about this corrupt practice. The sahiyas corroborated the truth of wide-scale corruption and the practice of extorting money from pregnant women. They decided to file individual complaints, which led to an investigation and resolution. Shikha Pahadi took up the same issue in Sahebganj, Jharkhand, interviewing residents from her village who recorded testimonies saying that ANMs asking for bribes was a common practice. After Pahadi approached the district’s chief surgeon and complained about the ANMs with her video documentation, and enlisted the support of journalists from the local news channel Nakshatra, the offending staff were finally reprimanded and transferred.

Another technique for galvanising the community to press for action, rather than accepting the status quo, has been through public screenings of video reports. This is especially true in areas that are not electrified with limited access to TV news programmes, and where the residents are lacking in formal education. India’s public broadcaster, Doordarshan, for example, airs video reports by grassroots correspondents on the IndiaUnheard show, which Video Volunteers produces for the channel. In addition to notifying the concerned community about the episodes that are broadcast, which legitimises the community’s call to action, the programmes are also screened in community gatherings through projectors and even on phones. Such video screenings become events that bring people together to discuss solutions, while also communicating the problems effectively to experts, policymakers and state MLAs. The video reports, collectively selected as the best electronic media campaign for the 2016 Laadli Media and Advertising Awards, organised by the United Nations Population Fund (UNFPA) and Population First, has solved 18 cases of multiple violations through community mobilisation. The significance of community monitoring goes beyond just giving people a voice. If we accept that we all should have a say in matters of governance that affects us, then the utter silence around these 56,000 annual avoidable deaths becomes an injustice.

One possible framework for creating a movement around the ‘right to voice’ is the idea of ‘monitorial democracy’, which was coined by the journalism scholar Michael Schudson. His model suggests that citizens have the responsibility to monitor powerful institutions, ranging from governments and corporations to universities and other large organisations. It is in this sphere of monitorial democracy where new media allows a large number of citizens to watch, document and share their reports.

Community monitoring has huge potential in India, once citizen and community-media groups succeed in scaling this to all corners of the country. But first, there is a need to popularise the idea that communities, not outsiders, must monitor government schemes. Given the ‘cult of the expert,’ this is going to be a difficult endeavour. But, if we want the shameful statistics around child birth and maternal health to improve, it simply must be communities who monitor and demand their rights as citizens; not outsiders.

~ Additional research and reporting by Nupur Sonar

~ Jessica Mayberry is the founding director of Video Volunteers, a nonprofit community-media organisation

~ Madhura Chakraborty is part of the communications team at Video Volunteers. She is an activist and researcher who co-founded ‘Take Back the Night’ in Kolkata.

~ Nupur Sonar is a journalist and works with Video Volunteers as a trainer and mentor