Published online: October 26, 2016
This paper uses data from two fact-finding exercises in two districts of Karnataka to trace how government and private doctors alike pushed women to undergo hysterectomies. The doctors provided grossly unscientific information to poor Dalit women to instil a fear of “cancer” in their minds to wilfully mislead them to undergo hysterectomies, following which many suffered complications and died. The paper examines a review, made by two separate panels of experts, of women’s medical records from private hospitals to illustrate that a large proportion of the hysterectomies performed were medically unwarranted; that private doctors were using highly suspect diagnostic criteria, based on a single ultrasound scan, to perform the hysterectomies and had not sent even a single sample for histopathology; and that the medical records were incomplete, erroneous and, in several instances, manipulated. The paper describes how a combination of patriarchal bias, professional unscrupulousness and pro-private healthcare policies posed a serious threat to the survival and well-being of women in Karnataka.
Increasing privatisation of the public health system and the rise of the unregulated commercialised private sector over the years has moved the discourse of health from the human rights paradigm to the market paradigm. Health and healthcare are no longer a public good, but a market commodity governed by the logic of profit.
The commercialisation of healthcare, the concomitant erosion of medical ethics, and the neo-liberal colouring lent to the already patriarchal content of health policies have turned out to be a lethal mix for women, particularly the poor, Dalit and Adivasi women (1).
The lack of regulation of the medical profession, and gross violations of medical ethics and health/patients’ rights have recently been in the forefront of the discourse on public health policy and medical practice. The 92nd report of the Parliamentary Standing Committee on Health raised strong concerns about the erosion of ethical practice among medical practitioners and the failure of professional regulatory bodies, particularly the Medical Council of India (MCI) (2). On the basis of this report, the Supreme Court used its “rare and extraordinary powers under the Constitution” to set up a three-member committee to oversee the functioning of the MCI (3). This was an indictment of the medical profession, which has always enjoyed hegemony on the basis of knowledge, caste, and class.
Among the various forms of violation of health/patients’ rights, the issue of medically unwarranted hysterectomy has gained the attention of public health experts, women’s groups, policymakers and the judiciary in recent years.
Studies illustrate that an overwhelming proportion of coerced hysterectomies, involving mainly Scheduled Caste, Scheduled Tribe and Below Poverty Line women, were conducted by private hospitals after state-sponsored insurance schemes came into being (4, 5). In Bihar, an investigation into the alarming number of hysterectomies (5503 out of 14,851 procedures) under the Rashtriya Swasthya Bima Yojana (RSBY) between 2010 and 2012 in 16 empanelled hospitals found that hysterectomies constituted 37%–50% of all procedures in some hospitals (6). Similar stories emerged from Rajasthan, Chhattisgarh, Gujarat, and Andhra Pradesh (5, 7).
In fact, there were uncanny similarities across states in terms of the reasons put forward by medical practitioners, the diagnostic methods they used and importantly, the way they instilled the fear of “cancer” among the unsuspecting and gullible poor women, coercing them to undergo hysterectomy immediately (8). Certain studies also draw attention to the gender bias and other structural drivers of reproductive health morbidities, along with poor access to healthcare, as factors that underpin the increasing number of hysterectomies (9).
The present spate of unwarranted hysterectomies in Karnataka must be viewed in the context of increasing privatisation of the public health system, declining use of public health facilities (10) and poor progress on key health indicators (11, 12, 13).
The Karnataka Janaarogya Chaluvali (KJC), an unfunded people’s movement for health and healthcare rights, has ensured the presence of health activists in several districts of Karnataka to keep a close vigil on the public health system, as well as the private health sector. The activists undertook two fact-finding exercises after they observed an increase in the number of hysterectomies in their work areas.
The first was undertaken in June 2013 in Hebbalagere, a village of 500-odd households in Chikkamaglur district, about five hours away from Bangalore. In the second exercise, undertaken over a two-month period from June to July 2015, the activists followed the trail of the big bimari (illness), which women said was claiming their uteruses, from one village to the next, and covered 38 villages falling under 19 panchayats in four taluks of the Gulbarga district.
In both fact-finding exercises, initially group discussions were held in the villages. These were followed by interviews with women who had undergone hysterectomy in the past three years. In the villages of Gulbarga, the activists also line-listed all those who had undergone hysterectomy (see Table 1).
|Table 1: Sources of data in the two fact-finding exercises|
|S No||Chikkamaglur district||Gulbarga district|
|1||Number of villages covered by fact-finding||1||38|
|2||Number of women having undergone hysterectomy line-listed||Not done||707|
|3||Number of women interviewed||15||82|
|4||Number of medical records collected/documented||12||69|
Before the group discussions, the KJC activists explained that they wanted to understand why women were undergoing hysterectomy in such large numbers. They clarified that on the basis of the information gathered, a report would be compiled, submitted to the government and widely disseminated. The activists openly voiced their concern about the large number of unwarranted hysterectomies being reported from other states and told the women that they, therefore, wanted to understand the issue in depth in their villages. They sought the women’s oral consent for carrying out individual interviews and asked if they could take pictures/makes notes from their medical records. They explained that all information would be compiled and analysed in such a way that the identity of no individual woman or her identifiers would be revealed in the report. The names of the women and their villages were blocked out from the medical records before the latter were submitted to the KJC expert panel for review.
Drawing on data from the two fact-finding reports, we present the details of where the women underwent hysterectomy, their ages, their health problems and struggle with seeking treatment, the response they got and the advice they were given by medical practitioners, patterns in the events preceding hysterectomy, and various kinds of violations of the principles of treatment and medical ethics.
All 15 women interviewed in Hebbalagere village underwent hysterectomy in a government facility, 14 of them in the Birur government sub-divisional hospital (GSDH).
An overwhelming 98% of the 707 line-listed women in the Gulbarga villages underwent hysterectomy in a total of 61 private hospitals. These were located in the towns of Gulbarga, Omerga, Tandur, Jairabad and Bidar. Four of these 61 private hospitals accounted for 344 (55%) of all the hysterectomy cases.
The ages of the women who underwent hysterectomy in Hebbalagere ranged from 26 years to 40 years. In Gulbarga, 51% of the 707 women who underwent hysterectomy were below 35 years of age at the time of the operation and 22.5% were below the age of 30 years.
In the village of Hebbalgere, the women reported that prior to the hysterectomy, they had sought treatment for reproductive health problems such as foul-smelling white discharge, white discharge that was curdy, “passing white discharge like urine”, “excessive” bleeding during menstruation, and lower abdominal pain for a duration ranging from 2 months to 5 years. Two women reported that they felt something was “sticking out” and two said they were told that they had “gedde” (tumour).
Of the 82 women interviewed in Gulbarga, 14 complained that they had had excessive bleeding during menstruation, 47 mentioned abdominal pain, 24 had had menstrual irregularities, 15 spoke of white discharge, and 4 said they had had abdominal cramps for a period ranging from 10 days to 3 years. Vomiting, body ache, lack of appetite and giddiness were the other symptoms that were reported.
Women at both sites reported that they had heard of the doctor from their neighbours and acquaintances. The women in Hebbalagere said that the doctor in the Birur GSDH was very popular in the region for his expertise in performing hysterectomy. Therefore, they preferred to visit him directly for their reproductive health problems.
In Gulbarga, the first port of call was a private hospital suggested by the women’s neighbours and relatives. Certain private hospitals were popular in a particular geographical location, forming “hysterectomy hubs” that covered towns in the neighbouring states. For instance, 41of the 173 hysterectomies carried out in the Chincholi taluk were performed in one private hospital in the town of Tandur, 30 km away in Telangana. Similarly, 47 of the 231 hysterectomies carried out in the Aland taluk were performed in one private hospital in Omerga, 36 km away in Maharashtra. Very few women here reported having visited the local primary health centre (PHC). Those who had done so gave up very soon because the centres had neither doctors, nor medicines.
Neither in Hebbalagere, nor in the villages of Gulbarga had the women sought treatment through any of the government insurance schemes. None of the women in the two sites reported receiving any information on the schemes.
The women’s experiences in the Birur GSDH followed a typical pattern:
“The doctor did not even touch me or examine me. He just sent me to the scanning centre across the road. He did not say what the problem was or why it was taking place. After scanning, he said, ‘You need an operation…otherwise, you will get cancer’.”
(35-year-old, Hebbalagere, government hospital)
The women said that the doctor asked them to get admitted immediately, though they had merely gone for a consultation.
“I had gone just for a consultation. But the doctor said the operation was urgent and I had to get admitted immediately. I had not even taken any clothes or money.”
(31-year-old, Hebbalagere, government hospital)
Even in Gulbarga, the private doctors whom the women consulted urged them to undergo the surgery immediately.
“The doctor told my mother-in-law that I had to be admitted immediately in order to save my life….. We couldn’t mobilise funds that day. But the doctor did not allow us to go home. That night, we slept outside the hospital. I was admitted the next day, after my relative brought money, and I underwent the operation….”
(28-year-old, Aland taluk, private hospital)
In some instances, the doctors prescribed medicines for a short period but insisted that a hysterectomy was inevitable.
“The doctor told me whether I take medicines or not, or whether the pain reduces or not, I had to undergo surgery within a month because my uterus had got swollen. I took the medicines, which relieved the pain. Yet I returned after a month and got my uterus removed. I was scared it would turn to cancer.”
(25-year-old, Aland taluk, private hospital)
In both sites, doctors had planted the fear of cancer in the women’s minds and this seemed to be driving the hysterectomy “epidemic”
“Doctors say bilimuttu (white discharge) can cause cancer. I was very scared. So I decided to go for this operation. My sister-in-law has also got it done.”
(28-year-old, Hebbalagere, government hospital)
“What can I do if the doctor says I will get cancer and will not survive if I don’t get this operation done?”
(24-year-old, Aland taluk, private hospital)
The women’s difficulty in managing menstruation in the absence of access to water and of privacy, and due to the discomfort and disruption it caused in their lives provided the medical fraternity with a fertile ground to plant irrational fears in their minds and create a “demand” for a booming hysterectomy “business”.
In Hebbalagere, the women reported paying the government doctor Rs 5000 on an average, with the payment ranging from Rs 2000 to Rs 10,000, minus the costs incurred on medicines or blood. In Gulbarga, the women had spent an average of Rs 26,900 in private hospitals. The amount ranged from Rs 10,000 to Rs 2 lakh. The latter included the amount spent on the treatment of postoperative complications. In both sites, the families concerned had paid out of pocket by taking loans from moneylenders.
In both sites, the women suffered postoperative complications that ranged from minor to major. They required a lengthy period of hospitalisation away from their place of residence. Some women reported sustained fatigue and back pain. Of the 82 women interviewed in Gulbarga, 68 complained of continued health problems even after hysterectomy. These included the symptoms for which they had sought treatment in the first place.
Also, in several instances, the family members of women who had undergone hysterectomy reported grave medical negligence during the surgery, leading to death.
“….she had had abdominal pain for three months. We were told that her uterus was damaged and she underwent hysterectomy at one of the hospitals in Tandur. Fifteen days later, she developed a severe swelling in the abdomen. The doctor who had done the operation refused to treat her. We went from hospital to hospital for almost six months. Finally, she underwent another operation and died three days later. We spent several lakhs for her treatment….”
(Husband of a 25-year-old woman who died, Chincholli taluk, private hospital)
In both sites, there was a serious violation of professional integrity and ethics – hysterectomies were performed even when they were not warranted; the women were provided with grossly unscientific information; a nexus was created to recruit unsuspecting patients; problems evident in the test reports were wilfully ignored; the doctors undertook interventions about which the women were not given prior information; violent, humiliating means were used to extract money/bribes, and so on.
The doctors who performed the hysterectomies seemed to be taking advantage of a huge vacuum in the availability of standard treatment protocols and flouted even the basic principles of good clinical practice.
In the absence of a single standard treatment guideline to assess the women’s medical records, the KJC constituted a panel of three practising doctors (two gynaecologists and one community medicine doctor) to independently review the records and assess whether hysterectomy was indicated. It submitted 66 medical records from the private hospitals in Gulbarga, along with interview narratives and the patient’s clinical history, to the panel. The panel reviewed the records for the diagnosis and their completeness and quality, and matched the clinical history and symptoms as obtained from the interview narratives with the medical records to arrive at its medical opinion.
“Most women who have had multiple pregnancies would have a ‘bulky uterus’, which is normal. It is merely an observation made in the ultrasound scan reports. Hysterectomy should not be conducted in women with ‘bulky uterus’. Citing a bulky uterus as the sole reason for hysterectomy is a gross violation of standard treatment protocol.”
(KJC expert panel member 3, Bangalore)
Following the protest by the KJC, the state Department of Health and Family Welfare constituted a four-member statelevel enquiry committee to probe the issue of hysterectomies in Gulbarga. The team visited four hospitals and met some of the women, including those who had suffered complications.
The enquiry committee’s report, accessed by the KJC through a right to information (RTI) petition, concurred with the KJC’s expert panel on several issues (14):
As per the Karnataka Private Medical Establishments (KPME) Act, 2007, it is mandatory to maintain medical records for a period of five years. However, in this case, the failure to maintain records was a norm, and not only that, it seemed to be a wilful act on the part of the medical practitioners to protect themselves.
The doctors involved had misused their position and power and exploited the women by providing misinformation, instilling irrational fear in their minds and misguiding them to undergo hysterectomies which were medically unwarranted. In Gulbarga, private doctors used various descriptions to convey that the women’s kotali (uterus) had become kharab (damaged). For example, they said that the uterus had become “swollen”, was “burnt”, had turned “green” or “black”, had “worms in it”, was “stained”, and so on.
In both Hebbalagere and the Gulbarga villages, the women reported that the doctors kept in touch with them even after the surgery and urged them to refer other “cases” to their hospitals:
“X in our village underwent hysterectomy. Through her, 15 other women went to Birur hospital and got the operation done. The doctor calls me (on mobile) and asks, ‘How come you have not brought any case for operation?'”
(38-year-old, Hebbalagere, government hospital)
In Gulbarga, ASHA workers, too, reported that private doctors in the district called them and asked them to bring them cases in return for a commission:
“The doctor (private) calls me and says he will pay Rs500 per case. But I have not brought him any case so far.”
(ASHA worker, Gulbarga)
So we see that the doctors were developing a “network” of patients and others to ensure a steady “supply” of patients and thereby, “sustaining” their “caseloads” and “profits”.
In several instances in Gulbarga, the scan reports indicated problems with different organs, such as the kidney, urinary bladder or pancreas, but the doctors did not treat the problem. Instead, they chose to perform hysterectomy. The horror of this approach could not get worse in the case of a 21-year-old woman with cancer of the pancreas. The treating doctor did not even reveal that the patient had cancer, let alone refer her for treatment. Instead, he performed a hysterectomy, following which she developed complications, from which she died three months later.
In another instance, the ultrasound abdomen and pelvis scan of a woman before she underwent hysterectomy revealed “acute cystitis”, while her uterus was a “normal study”. The post– hysterectomy scan also revealed a renal calculus of a size of 6 mm. Yet, the woman had neither been referred for treatment, nor been treated for the stones. Instead, she had been tricked into undergoing hysterectomy:
“I had difficulty passing urine. They said my uterus was swollen and I was told to get it removed. I underwent the operation, hoping that my abdomen pain and urine problem would be solved. Even after hysterectomy, the abdominal pain continued. It did not subside even a little bit. I went to another hospital, where they told me I had stones in the kidney. I have spent nearly 2 lakhs on treatment.”
(35-year-old, Aland taluk, private hospital)
The medical records of two of the 12 women in Hebbalagere and 14 of the 69 in Gulbarga revealed that hysterectomy was performed along with appendectomy. Several other women had reported undergoing both the surgeries together, but these were not mentioned in their medical records. The women concerned were not given prior information that an appendectomy would also be required; they were told only after the surgery.
During the group discussions in Gulbarga, the women revealed that several people in the community settlements, including men and children, had undergone an “operation to remove appendix worm”. Appendectomy seemed to be another intervention being used to make money.
The doctors and staff in the Birur hospital had devised violent ways to extract illicit money:
“Earlier they used to remove the urine pipe after three days. Do you know what they do now? They do not remove it till the time you pay. I was alone, on my own, after the surgery. I was wearing a nightie and dragging that pipe along in front of everyone. It is horrible and hurts a lot. When I asked the sister to remove it, she said she would not remove it till I paid.”
(40-year-old, Hebbalagere, government hospital)
Women in Hebbalagere also described humiliating experiences at the time of the surgery:
“There is no screen… nothing. You have to strip off all your clothes and walk completely naked across the corridor to the operation theatre. The OT is full of male doctors and attendants. If we try to cover ourselves with a sheet, they shout at us. It is so humiliating. How can you look those people in the face?”
(40-year-old, Hebbalagere, government hospital)
Refusing to treat complications and trivialising the women’s problems were the other serious ethical violations committed by the doctors:
“Even now, I have a body ache, lower back ache and giddiness. When these symptoms did not subside, I went back to the doctor who had done the surgery. The doctor said that I had mental problems and that there was nothing wrong with me now. But that’s not true. My pain is not decreasing. I feel I am sick. Even yesterday, I went to a different doctor in Solapur. Since this operation, there is not a single hospital I have not visited. Now my expenses have gone up to 2 lakh.”
(32-year-old, Aland taluk, private hospital)
The government’s response to any form of violation involving poor, Dalit or adivasi women has been to shift the blame on them, pointing to their “ignorance”, “illiteracy”, “lack of hygiene” and “poverty” and the practice of “early marriage”. It would seem that these problems are of their own making and that it is their fault that they have been exploited. Although these are structural drivers of ill health and disease, medical practitioners and administrators use them to engage in “victim-blaming”, akin to the “she asked for it” argument in sexual assault cases. For instance, one of the state enquiry team members asked: “Why didn’t the women seek a second opinion? And why did they go to private hospitals if they didn’t have money?”This betrayed her elitist position as a medical professional belonging to a dominant caste, the upper class and urban stratum, unconnected with a world that is very different from her own.
The violations brought to light by the fact-finding exercises must be understood in the context of a failing public health system, the erosion of ethics among the medical fraternity and government healthcare policies favouring the predatory private sector.
The prevention and control of reproductive tract infections/sexually transmitted infections under the government’s Reproductive and Child Health (RCH) programme seems to have fallen by the wayside. Even though women from Hebbalagere had been suffering from several reproductive health problems for over five years, neither the local PHC, nor the Birur SDGH took any measures to prevent/control them. Women in Gulbarga had stopped going to the PHCs, which were reeling under acute shortages of medicines and staff, including doctors. In the absence of any meaningful engagement with the community, the women had no information on the various symptoms they were suffering from, their causes or ways to prevent them. This erosion of the preventive/promotive aspect of the public health system was conducive to an increase in the incidence of reproductive health problems. This, in turn, fuelled a “demand” for curative care, which the medical practitioners literally cashed in on.
The fact-finding exercise both in Birur and Gulbarga exposed how the medical profession (whether private or government) had turned into a predatory force, seeking to make money from the suffering of the most vulnerable. The Indian medical fraternity has gained global notoriety for engaging in unethical practices and adopting irrational diagnostic and treatment methods, all with the aim of increasing profits (15). Be it in government or private settings, there is no regulation or oversight of their functioning, whether in the matter of adherence to standards, ethics or ensuring patients’ safety and rights. With no protection available against exploitation, the only “choice” that patients seem to have is to “choose” the place of exploitation – government or private facility.
In Karnataka, the acute shortage of doctors in the public health system is a factor that in itself gives them a sort of immunity from disciplinary measures. For instance, the district collector of a certain district publicly admitted that he could not suspend a medical officer from a community health centre, even though he was facing charges of neglect, because he was among the only two gynaecologists in the entire district. Similarly, the government has not initiated action against the doctor in the Birur GSDH even 15 months after the submission of the enquiry committee’s report. Government doctors in Karnataka are allowed to have a private practice “after working hours” in any one private hospital, thus erasing all distinctions between “government” and “private” doctors.
The government is unable to discipline its own doctors and does precious little to regulate private practitioners. Even though the KPME Act, 2007 is in force, it merely serves as a means of registering private medical establishments and its mechanisms for oversight or the enforcement of standards and/or quality of care are poor. Importantly, it has no provision for receiving or acting on complaints related to any kind of violations of patients’ rights.
It seemed that little could be expected from professional bodies such as the Indian Medical Association (IMA). Following media reports of the hysterectomies, the IMA of Gulbarga expressed solidarity with the doctors and denied that any of its members were engaging in medical malpractices.
With the Medical Council of India itself at the centre of several controversies, the crisis within the medical profession has reached epic proportions, with dangerous ramifications on the rights of patients, particularly those from vulnerable groups and communities.
Instead of strengthening regulatory mechanisms to protect patients’ rights and curb malpractice, the government is presently expanding the managed care model by empanelling the very same unregulated, unaccountable private hospitals under various schemes (16, 17). In the process, it is providing private hospitals increasing access to marginalised communities, which are becoming victims of these institutions’ exploitative, profiteering policies. A recent study in Karnataka illustrates not only how private hospitals empanelled under insurance schemes were cherry-picking patients, but also how the authorities concerned felt helpless when it came to controlling profiteering by the hospitals (18). The fact that the government is empanelling unregulated private hospitals over which it has no control is tipping the balance against democratic, transparent, accountable people-centric systems.
The KJC’s fact-finding exercises revealed how a medical procedure such as a hysterectomy has morphed into a “business strategy” in the “medical/healthcare market”, with poor women’s bodies being trafficked for profit. Governments that ought to protect citizens from such predatory motives have not merely failed in their duty, but have turned accomplice in these crimes by ushering in policies that encourage exploitation.
A patriarchal, casteist and commercialised medical profession, which has reduced women to their constituent parts, either pathologising or trivialising their health issues to suit its “business” interests, has exacerbated the misogynist culture that views women’s bodies and biological processes as polluting. The medical profession, which represents the hegemonic power of gender, caste and class, is on a collision course with the democratic socialist paradigm of healthcare and poses a formidable barrier to the evolution of socially just, egalitarian, ethical, scientific healthcare systems and practices.
So long as the profit motive drives the provision of healthcare, the most vulnerable will continue to fall prey to the predatory motives of the system. Radical policy shifts aimed at reining in the medical profession, transforming medical education, disallowing “profit” in healthcare, rolling back public–private partnerships, and strengthening the public health system meaningfully to regulate and deliver healthcare are required urgently to reverse the commercialisation of healthcare. Enacting a broad-based law to protect health/patients’ rights and to bring the medical profession under the ambit of criminal prosecution is of critical importance to ensure the safety of citizens, particularly those most vulnerable.
The authors are activists with the Karnataka Janaarogya Chaluvali (Karnataka People’s Health Movement). They thank the anonymous reviewers for their inputs. The authors continue to stand by the women in their struggle for justice and are deeply grateful to the women and all the progressive sanghatans in Karnataka for their support and solidarity in this struggle for justice.