III. Recurrent Health System Gaps Reflect Accountability Deficits

Despite commitments toprovide free antenatal care, basic and comprehensive emergency obstetric care, and postnatal care, Indian authorities have not done enough to review existing schemes to ensure that they address the real health needs of women and girls. In our research, we found recurrent gaps in the provision of maternal health care, gaps that would not exist if policies were being implemented effectively. These include barriers to emergency care, poor referral practices, gaps in continuity of care, and improper demands for payment as a condition for delivery of healthcare services.

As noted at the outset of this report, the analysis that follows draws heavily on Human Rights Watch research in Uttar Pradesh. While not all of our findings will apply uniformly to all parts of India, we believe that they are particularly relevant to the eight Empowered Action Group states.[94] Discussions with public health experts and women's health rights activists have revealed that financial barriers to care are also common to many non-Empowered Action Group states.[95]

Poor Access to Emergency Obstetric Care

The vast majority of women in rural India have poor access to emergency obstetric care that could save their lives, including blood transfusions and cesarean sections.[96] Women with pregnancy complications such as hemorrhage, obstructed labor, and eclampsia are often in need of such life-saving care. First referral units that are supposed to be equipped with such life-saving facilities have existed on paper for years, even before the NRHM was operationalized.[97] Since mid-2005, basic and comprehensive emergency obstetric care are covered by the NRHM service guarantees. Yet, there has been little or no improvement in women's access to and utilization of such care in many parts of India,[98] indicating a serious lapse in accountability.

The Indian government has acknowledged these serious gaps in its surveys and review reports. The latest government District Level Household and Facility Survey paints a dismal picture in Uttar Pradesh. Uttar Pradesh is 583 short of the required number of community health centers;[99] less than a third of those that are in place have an obstetrician or gynecologist. In practice, roughly one in twenty first referral units (FRUs) offer cesarean sections and one in a hundred have blood storage facility.[100]

In its Third Joint Review Mission, a team led by the Indian Ministry of Health and Family Welfare found that none of the first referral units was providing emergency obstetric services as mandated.[101] Similarly, the Second Common Review Mission led by the Indian central government found that "out of 108 functional FRUs in the state ... blood storage facilities are non-existent."[102] These numbers have reportedly improved: in March 2009, one of the officers from the Uttar Pradesh NRHM State Project Management Unit claimed that at the beginning of financial year 2008-2009 (April 2008) only 23 of the 426 community health centers were first referral units, compared to 100 first referral units at the end of the financial year (March 2009). Stating that they had recently placed an order for blood storing facilities for 140 community health centers, the officer asserted that all district hospitals had blood storage and transfusion facilities. When Human Rights Watch specifically enquired whether there were any complaints about the lack of such facilities at district hospitals, the officer said, "No complaints from district hospitals on blood."[103]

Contrary to the official claim, activists, health workers and doctors, and families from two districts neighboring Lucknow city, the capital of Uttar Pradesh, reported that women requiring blood transfusions or cesarean sections were routinely referred to Lucknow city about 100 kilometers away.[104] 

A doctor at the Unnao district hospital confirmed that their facilities were inadequate, often necessitating referrals to Kanpur or Lucknow:

 [We have] [n]o surgeon in the female ward. This is a combined hospital [for men and women]. So many times a surgeon is not available. Blood is another reason. We have a blood bank. But not enough blood.[105] 

In southern Chitrakoot district, the district hospital that is supposed to be equipped with comprehensive emergency obstetric facilities did not have them in March 2009.[106]The staff at the hospital described their predicament:

We do not have a gynecologist now. No blood facility. So if there is any case that needs blood we refer the case to Allahabad hospital-Sadguru Sewa Trust ... Only normal cases [unassisted deliveries and episiotomy cases] are taken here. We do not take critical cases. In my time [more than two years], we have had only one cesar case [cesarean] performed.[107]  

As a result, many women who needed such care were referred to the Allahabad medical college hospital, more than 100 kilometers away, without support for referral transport.[108] The journey from Chitrakoot to Allahabad takes between three and four hours. The staff at the Chitrakoot district hospital did not know the outcome of such referred cases but remarked that it was possible that women had died in transit or at the Allahabad hospital.[109]In the last year about 1270 "complicated cases" were referred from the district hospital.[110]Human Rights Watch was able to trace one case in which the family of a pregnant woman who had been referred had taken her all the way from Chitrakoot district to Allahabad for a blood transfusion. The woman, Munira M., died at the Allahabad hospital because of complications.[111]

Munira M.'s death, Chitrakoot district, June 2008 Munira M., belonging to the Chamar caste (a Dalit community), was a mother of two children. Both her deliveries were conducted at home. She started bleeding in the eighth month of her third pregnancy, that is, in June 2008. No ASHA or ANM had visited the village and her relatives believed it was because no one was appointed for the village. Her family rented a tractor and took her to a private hospital nearby, where she was referred to yet another private health facility. Saying that she needed a blood transfusion that they could not provide her in Chitrakoot district, the staff at the second private hospital asked the family to take Munira to Allahabad, more than 100 kilometers away. Both mother and baby died in the Allahabad medical college hospital.

Manasa M., an ANM, had attended to Renu R.'s delivery in late May 2009 at a primary health center. Renu delivered but started hemorrhaging soon after and needed to be taken more than 30 kilometers away for a blood transfusion. Underscoring the importance of improving the availability of blood transfusion facilities, Manasa said:

There is no facility for blood over here. It is in Barabanki. Barabanki I think has only one blood bank. Sometimes whenever there is an emergency, [there is not enough blood in Barabanki] and the patient has to go to Lucknow, if in a PPH [post partum hemorrhage] case they have to go all the way there....[112]

Even where there are blood transfusion facilities, it appears that affordability is a significant barrier to access.[113] Human Rights Watch spoke with one pregnant woman who was receiving a blood transfusion at a district hospital in Uttar Pradesh, and found that she was not able to afford the six units of blood that she needed. Each bottle of blood cost her family 900 rupees (US$18).[114]

Access to blood transfusion facilities and availability of cesarean sections often means the difference between life and death for women.  While the Indian central and Uttar Pradesh state governments have taken some steps to improve women's access to such services, they are yet to continuously monitor implementation and rectify insufficiencies.  As a result, women continue to die.

Poor Referral Systems

What's the point of sending us away? If the doctor cannot deal with the case here, then why should we go to the doctor? For the 1400 rupees [US$28]?  Are we going all the way to kill ourselves?

- Trishna T., woman who had recently delivered, Chitrakoot district, March 7, 2009.

Poor referral systems leave women running from pillar to post even during emergencies. Of the nine deceased pregnant women's families that Human Rights Watch spoke to, five recounted serious obstacles in even reaching a health facility and being referred from one to another without any support. For women who develop complications during pregnancy and childbirth and in need of life-saving interventions, time is crucial. On paper the NRHM guarantees free referral services at primary, secondary, and tertiary levels.[115] But poor government oversight over referral systems leaves many women without timely appropriate emergency health care. As one UN expert group concluded: "[Even an] elegant model of poor referral from facility to facility could be worse than inefficient. It could be deadly."[116]

Pregnant women use bicycles, motorcycles, theliyas (handcarts), auto-rickshaws (motorcycle taxis), tractors, and jeeps to reach health facilities.[117] Often, families living in interior areas are unable to afford tractors or jeeps or find it difficult to organize such transport from their villages. In such cases the women deliver at home without any referral support.[118]

In January 2008, Vimala V. bled to death on the way to a health facility. She was being rushed to a health facility on a handcart because the family could not arrange for any other mode of transport.[119] She had delivered at home and started hemorrhaging, but had no referral back-up.[120]

Vimala V.'s death, Rae Bareilly district (Story as told by Vimala's relatives and neighbors) Vimala V., in her 20s, was pregnant for the first time. She developed labor pains at home at night. At midnight she delivered at home with the help of neighbors. No health worker was present. According to Vimala's relatives and neighbors, the ANM and ASHA assisted them only for teekakaran (immunization) and nasbandi (sterilization). Vimala was unable to deliver the placenta after her delivery. She started bleeding heavily. It took the family about two hours to arrange for a theliya (handcart) to take Vimala to the government health facility. Vimala died en route. Her husband and relatives now care for her baby.

ASHAs and ANMs sometimes use their personal motorcycles to transport pregnant women in labor to hospitals. Reena R., an ASHA, described how she often asked her husband to help transport pregnant women in labor to the nearest community health center when they could not arrange better transport. "My husband rides the [motor] bike, the pregnant woman sits in the middle, and I behind her," she said. "Three people on one bike, it is difficult but we have to manage," she explained.[121]

Poor access to affordable transport is exacerbated by repeated referrals from one facility to another. Even when families reach health facilities, it is often not equipped to provide the required care. Several doctors and nurses described how families of pregnant women often fell at their feet, begging to be admitted into the health facility because they could not arrange to go elsewhere for appropriate care.[122]

Nirmala N., a staff nurse at a community health center, described how they referred Kanti K., a pregnant woman, to the nearest first referral unit. But Kanti and her family returned to the community health center later the same day, surprising the health staff. Nirmala explaining why: "From Bachrawan [first referral unit] they sent the case to the Rae Bareli hospital and from there they were asked to go to Lucknow hospital. They could not afford to go there [Lucknow] so they came back here."[123]

Nirmala was there when the family came back, begging to be readmitted. She explained that the staff in the female ward refused readmission because they lacked the requisite expertise and facilities. She said,

But they [family] started falling at the doctor's [superintendent of the community health center] feet and holding his hand and leg. So out of mercy he took her and got her admitted. Not into our ward [female ward]. We said no. So he took her into the male ward. She died. He did not want her to die on the road. There is nothing we could have done in that case. We do not have the facilities here.[124]

In November 2008, Pragya P. died in the community health center. Sita S., her mother-in-law, recalled that that the community health center staff had informed her that they did not have the facilities to conduct Pragya's delivery and demanded money. But Sita asked the thakur (an influential person in the region, literally; landlord) to intervene and plead with them to admit Pragya. "Later on, [the nurse] said she would save the mother but not the child and we agreed," Sita explained. Pragya died in the community health center due to poor access to emergency obstetric care.[125] Angered by the experience, Sita's daughter who had accompanied her, vowed, "I will never go to the hospital. You can take my life but I will not go the hospital."[126]

One of the nurses at the community health center confirmed Sita's story. According to her, the health staff had asked that Pragya be taken to the Rae Bareilly district hospital about 30 kilometers away. The staff nurse claimed that there was an ambulance, but stated that it was left to the families to negotiate the payment with the ambulance driver, in violation of the free referral guarantee.

Eight days after a facility-based delivery, when Kavita K. developed complications at home, her father-in-law took her to the community health center for treatment. He narrated his harrowing experience:

We took her to the community health center and they said, "We cannot look at this here." So we took her to [the hospital in] Hydergad. From Hydergad to Balrampur, and from there to Lucknow-all government hospitals. From Wednesday to Sunday-for five days- we took her from one hospital to another. No one wanted to admit her. In Lucknow they admitted her and started treatment. They treated her for about an hour and then she died.[127]

In June 2009 Human Rights Watch documented another maternal death in Barabanki district. The death occurred due to complications arising from hemorrhage, which apparently could have been averted had there been a better referral system.[128]  Within 45 minutes of arriving at the Barabanki district women's hospital on a Monday morning, Latha L. died as the staff was organizing a blood transfusion. Recalling what he told a doctor at the district hospital, Latha's neighbor said, "We had gone to the PHC [primary health center] the previous night in a tractor. The PHC did not send us here [district hospital] on time. The ambulance was standing there [primary health center]-the white vehicle [but it did not bring us]."[129]

The back story was all too familiar and tragic. Latha had just completed eight months of pregnancy. She started bleeding profusely when she went to relieve herself on Sunday evening. "It was flowing, flowing-what can I tell you? There was so much blood. I got scared," whispered Latha's aunt, Warisha W., who went with her to the primary health center in the village tractor. The gates of the PHC were closed. They waited for the health staff to come and look at her. The PHC staff said they could not treat her and instructed them to take Latha to the Barabanki district women's hospital, about 40 kilometers away. The PHC did not provide any first aid to Latha. They did not offer any transport assistance.

According to Warisha, Latha was in too much pain and bleeding too profusely to be jolted along a one hour drive in a tractor to Barabanki district hospital. The family wanted some immediate medical assistance because of her condition. "They did not give her any medicine. Could they not have even given her something to help her until we reached another hospital?" asked Warisha, of the primary healthcare staff.  Out of concern for Latha's condition, Warisha explained that they decided to take Latha to a private nursing home close by. They reached the nursing home late Sunday night, where she was kept overnight and discharged because they could not make arrangements for her blood transfusion.

It is unclear how well different public and private facilities are connected in the referral chain or by referral transport in Uttar Pradesh. In the cases we studied, ambulances were present at times, but families were either not aware of the service or could not afford it. A 2008 USAID-funded study in Uttar Pradesh shows that 45 percent of the community health centers surveyed in the study did not have funds to operate even the one ambulance they had.[130] Several district chief medical officers said that the Uttar Pradesh government has piloted referral transport through a network of ambulances in a few areas.[131] We spoke with one such ambulance driver who explained how he was permitted to transport patients only up to the district hospital and if the patients were turned away he was not authorized to drive them to another hospital within or outside the district. He said, "If the patients beg me, out of mercy I take them to a nearby private facility. They have to pay me extra money."[132]

Gaps in Continuity of Care

Women in Uttar Pradesh seldom receive continuous care during and after termination of pregnancy, through the postnatal period (extending 42 days from termination of pregnancy).

Contrary to NRHM standards which require every pregnant woman be registered, provided with antenatal care, and taken to a pre-identified health facility for delivery, many pregnant women and women who had recently delivered told Human Rights Watch that they seldom had regular contact with ASHAs or nurse-midwives in the antenatal period.[133] Others said their contact was limited to receiving iron and folic acid (IFA) tablets and anti-tetanus injections, and there was seldom any birth-preparedness care.[134]

Norms for antenatal care go far beyond distribution of IFA tablets and anti-tetanus injections. However, government surveys show that the entire package is seldom provided.[135] Activists and many doctors and nurses experienced in conducting deliveries repeatedly told us that pregnancy-related morbidity, particularly anemia, is a major concern; ASHAs and ANMs often are not providing or facilitating adequate antenatal care.[136]

A gynecologist who routinely conducts deliveries in Chitrakoot district said that she believed 95 percent of the women she saw were severely anemic. Even a slight delay in treating women with severe anemia reduced the chances of their surviving any crisis, the doctor explained.[137] Another gynecologist working at a government district hospital said,

You want to prevent maternal mortality, yet nobody is bothered about antenatal care ...Even if there is any antenatal check-up, the focus is on injections [immunization] and some iron tablets. ASHA does not give any information about check-ups and physical examinations. What about all the suffering of the pregnant woman during the nine months?[138]

Voicing similar concerns about antenatal care, a staff nurse at a community health center said, "Often we deal with cases where the woman comes for her first check-up when she is nine months pregnant and is in labor. And on top of that many of them are really anemic, only three or four grams blood [referring to hemoglobin levels]."[139]

A staff nurse from a different community health center said,

I see so many cases of APH [antepartum hemorrhage or bleeding during pregnancy], placenta previa [low-lying placenta that can cause bleeding], and malnutrition. Most of the women who come here are those patients who do not have any ANC check- ups. We do not know their [medical] history.[140]

Care in the immediate postnatal period (24-72 hours after childbirth or abortion) is critical to averting maternal deaths; deaths are highest in the postnatal period.[141] Postnatal care also helps women address both short-term and long-term health issues arising out of pregnancy and childbirth.

The NRHM guarantees a minimum of 2 post-partum care visits within 48 hours and another visit within 7-10 days of termination of pregnancy. [142] But government data reveals that such care is seldom provided.[143]

None of the women with whom Human Rights Watch spoke reported any contact with a health worker after delivery, that is, either after they were discharged from a health facility or after they had a delivery assisted at home.[144] Several women who had delivered at primary or community health centers reported being discharged from the health facility within 24 hours. Rohini R., for instance, who had delivered at a primary health center in Barabanki district was discharged within two hours of delivery.[145] Shanta S., who had accompanied her relative, Sunidhi S., to a community health center for delivery said:

[Sunidhi] delivered yesterday. It was a normal delivery in the CHC [community health center] ... ASHA took us there. I was also there. ... We took her to the hospital at 8:30-morning-and she delivered within two hours around 10:30 ... She was discharged in the evening.[146]

Human Rights Watch documented four maternal deaths in the postnatal period. In all cases the families reported that no health worker visited or assisted the mother in this period.[147]

Many factors contribute to the poor state of antenatal and postnatal care, and a discussion of all of them is beyond the scope of this paper.[148] Nevertheless, we were struck by the frequency with which doctors and activists mentioned the amount of healthcare worker time taken up by polio eradication and sterilization programs as cause for concern.[149]

Financial Barriers to Care

The cost of healthcare services, including emergency obstetric care continues to remain a barrier for many poor families. The NRHM framework recognizes "exemption...of below poverty line families from all charges" as an important strategy and guarantees free care to such families.[150] Likewise, in many states JSY benefits depend upon whether the beneficiary is below or above the poverty line.[151] Many activists stated that one of the biggest barriers to benefiting from government healthcare schemes is the non-issuance of government cards certifying poor families as below the poverty line (BPL cards).[152] Explaining how she finds it hard to help poor women, one ASHA said, "The people who are really poor don't have these things [BPL cards] and many others who are better off have BPL cards. So that is a big problem."[153]

Many activists, women from rural areas, and ASHAs in Uttar Pradesh consistently complained to Human Rights Watch that staff in government health facilities demand money for supposedly free services under the NRHM, including out-patient and in-patient care, and drugs.[154]

This was sometimes a bribe. Explaining how the care she received during pregnancy depended upon the money she had, Trishna T. said,

I have never had a check-up [referring to a physical examination during pregnancy] ... Nurse didi [showing respect, literally "elder sister"] has not called us for any check-up. If we have money, then we can go to the doctor and he will look at us. If we don't have money then we can be dying in pain. Just left to be lying in pain. It's like that.[155]

Niraja N., an ASHA explained:

Nothing is free for anyone. What happens when we take a woman for delivery to the hospital is that she will have to pay for her cord to be cut... for medicines, some more money for the cleaning. The staff nurse will also ask for money. They do not ask the family directly ... We have to take it from the family and give it to them [staff nurses] ... And those of us [ASHAs] who don't listen to the staff nurse or if we threaten to complain, they make a note of us. They remember our faces and then the next time we go they don't treat our [delivery] cases well. They will look at us and say "referral" even if it is a normal case.[156]

One activist who unsuccessfully intervened when a staff nurse at a CHC demanded money said,

One man I know had taken his wife for delivery to the CHC. He had sold 10 kilos of wheat that he had bought to get money to bring his wife for delivery. He had some 200-300 rupees [US$4-6]. Now in the CHC they asked him for a minimum of 500 rupees [US$10]. Another 50 [rupees] to cut the cord and 50 [rupees] for the sweeper. So he started begging and saying he did not have more money and that they should help for his wife's delivery. I... asked them why they were demanding money. The nurse started giving us such dirty abuses that even I was getting embarrassed and wanted to leave. You imagine how an ordinary person must feel who wants help.[157]

Several health workers stated that demands for high sums of money were particularly a problem where women came for abortion-related services. Under the NRHM, abortion services in accordance with the law are also guaranteed free of cost to women below the poverty line. For example, one ASHA said of the staff in the government community health center:

Sometimes they charge up to 5000 rupees [US$100] for abortion. Other cases 300 rupees [US$6] after one month, 600 rupees [US$13] after two months... it goes on like that. They do it properly so even though they charge money I convince women to come here. At least they are safe instead of going to a jhola chaap doctor [unqualified doctor].[158]

Many government officials and hospital staff explained to Human Rights Watch that, if money is exchanged, it is because women from rural areas follow nyauchawar, a custom under which they give money when a baby is born. If women in rural areas are happy to follow such a custom, they reasoned, then there is no cause for the state government to intervene to stop the payments. Such an argument to justify service providers demanding payment from vulnerable women without a lawful basis should not be condoned, but it is all the more egregious given that it seeks to justify behavior that leads to women being denied timely medical assistance.

The government has itself guaranteed free basic and comprehensive emergency care to poor rural women under the NRHM, and extralegal demands for monetary contributions should be seen as unlawful whether termed payments or customary shows of gratitude. Any expectation that money must be handed over in order to receive care, or the best attainable care, will disproportionately affect those in no position to pay-women from poor and marginalized communities. The government has a duty to prevent or put an end to such practices which will inevitably intimidate poor women and girls.