Twenty-four-year-old Ritu Kumari, a housewife at Abdulpur village in Muzaffarnagar district of Uttar Pradesh, basks in the joys of motherhood that her eight-month-old son brings to her.
But the joy cannot erase the memories of the excruciating pain in her lower abdomen she endured for six weeks after his birth, the outcome of a grave error during childbirth that could have claimed her life.
“If there is a hell where people are tortured in the worst possible way, then I can say I’ve been to hell and back," said Ritu, whose son was born on March 10 this year at the government-run Primary Health Centre in Purkazi, about 4km north of her village.
During the delivery, she did notice that instead of Kusumlata, the auxiliary-nurse-midwife (ANM) assigned to her, two other younger women at the PHC performed all the procedures.
But in the happiness of welcoming a new member in the family none of them suspected anything amiss.
Ritu and her family members - small farmers and daily wage labourers - returned home with the new-born that evening itself. But two days later, the pain struck.
“She would howl in anguish for hours and refuse to leave the bed. We didn't know what to do," recalled Ritu's mother-in-law Parvati Devi.
Along with the pain, a foul smell began to emanate from Ritu.
When her family took her to the same PHC where Ritu's son was born, they met Radha Dhingra, a doctor with a medical degree in Ayurveda working under contract. Dhingra refused to examine Ritu, complaining about the smell.
“She held her hand on her nose as I approached her and gave me a lotion and asked me to wash myself,” said Ritu, who also recalled that Dhingra then summoned a sweeper and asked him to clean the spot where Ritu was standing.
The family took Ritu home, where she continued to live with the pain - at times crying audibly, at times weeping silently - for over a month before she begged her husband to call a neighbourhood quack. “What choice did I have when the nearest government hospital had been of no use to me?" Ritu asked.
The quack - an unqualified, self-taught healthcare practitioner - who "helps" many residents of Abdulpur, treating "minor illnesses" for fees ranging from Rs 20 to Rs 100, examined Ritu and found a one-meter long cloth stuck inside her.
“When the rotten cloth was pulled out, it hurt more than what I had felt during childbirth," said Ritu, who then spent two weeks at a private hospital in Muzaffarnagar for treatment of acute infection of the uterus.
Ritu's family and other village folk protested outside the PHC and Dhingra, the doctor who had refused to examine Ritu, was transferred following a district-level enquiry. But, the primary "culprit" remains unpunished.
Kusumlata, the ANM assigned to Ritu on March 10, had asked her two daughters, Seema and Jyoti, to step in for her that day to manage the delivery. Kusumlata has no explanation for asking her daughters to step in for her.
Her act of violation would have gone unnoticed but for a blunder that Jyoti made during the delivery. To soak up the blood during postpartum bleeding, nurses sometimes place sanitary pads or sanitized cloth in the birth canal.
Neither Jyoti nor Seema, who were apparently "learning" midwifery that day, told Ritu to return to the hospital the next day to have the cloth removed.
"My daughters were there but I guided the childbirth," said Kusumlata who is still at the same PHC. Authorities at the hospital too said that it was a case of "misunderstanding."
Patients' rights advocates said Ritu was a victim of both an error during childbirth and a delay by the Centre and state governments to enforce a nine-year-old legislation designed to ensure that patients across India receive minimum standards of care.
India's Clinical Establishment (Registration and Regulation) Act, passed by Parliament in 2010, provides for the introduction of rules to govern all public and private therapeutic and diagnostic centres, including single doctor clinics, nursing homes and large hospitals.
"At the heart of the Act lies the welfare of patients," said Abhijit More, a Pune-based physician and health activist who is among those campaigning for its implementation.
Eleven states, including Uttar Pradesh, have adopted the Act that seeks to prescribe mandatory minimum standards for infrastructure and equipment, personnel, patient safety and standard treatment protocols to ensure that patients receive quality healthcare.
But no state has notified the rules under the Act.
"It is frustrating as progress under the Act has been slow and disappointing," said K M Gopakumar, a legal researcher with the Third World Network, a non-government organisation that is also urging states to enforce the Act.
Through the Act we are pushing for minimum-not gold standards for the hospitals. Why is it so difficult for states to enforce it?" he asked.
A note sent by Union Health Secretary Preeti Sudan to chief secretaries of all states and Union Territories earlier this year reveals that the Centre is aware of the problems in healthcare institutions.
The note said the Centre had received complaints alleging malpractices, including gross deficiency of services, lack of transparency in diagnosis and treatment, arbitrary and exorbitant billing.
Sudan had also urged state officials to implement a "Patients Rights Charter" prepared by the National Human Rights Commission and adopted by the National Council of Clinical Establishments in July last year.
Many key provisions under the Patients Rights Charter could be invoked had the Act been implemented, patients' rights advocates said. Instead, in the absence of rules or any mandatory standards, they said the quality of healthcare services available to patients, whether in government or private hospitals, are determined almost entirely by those who manage the hospitals.
Across parts of UP, this reporter encountered other examples of hospitals functioning with what patients' rights advocates would describe as arbitrary, self-set guidelines for its staff and infrastructure.
‘Blacklisted’ hospital
Around 30 km outside Barabanki district headquarters, Aarogya Dham is a 10-bedded hospital that was once empanelled to provide services under a Central government health insurance scheme-Rashtriya Swasthya Bima Yojana- but is now "blacklisted" for carrying out "unnecessary procedures."Its proprietor, Upendra Upadhyay, claimed he has a degree in physiotherapy "from Bengaluru" and said his hospital provides care in gynaecology, orthopaedics, ear-nose-throat specialities and even offers minor plastic surgeries.
Under existing rules, hospitals nationwide are expected to display names of consultant doctors and their qualifications, but Aarogya Dham does not.
Asked why the names of doctors are not on display, Upadhyay said the doctors "keep changing."
Two of the three nurses in his hospital told this reporter they do not have college or university degree but have learnt the trade through "experience."
Shabby structure
In Nawabganj town also in Barabanki district, Shagun Hospital has eight beds and is run by a homeopath-proprietor Vijay Narayan Patel, who said the hospital conducts 15 to 20 Caesarean section surgeries a month.
"We cater to pregnant women from the area who prefer us to the government hospital," Patel said.
Shagun has an unplastered wall outside, unfinished brickwork on its first floor and also does not name consultant doctors who provide services there.
Central government officials asserted that state governments are responsible for the implementation of the Act.
"The Act is comprehensive and covers various areas of healthcare that need tight regulation and monitoring," Sudan said. "We have repeatedly asked states to adopt the Act and make rules as per requirements. But there is a limit to which we can push as health is a state subject."
In UP the government seems to be in a quandary. State health minister Jai Pratap Singh said the first "priority" for him was to fix government hospitals. "We have a severe shortage of manpower and infrastructure and small level corruption is a huge problem," Singh admitted. "We want to make our own hospitals become more efficient before turning our eyes on the private sector."
Health activists said the lack of well-defined mandatory standards for infrastructure, equipment and treatment protocols might pose health risks for some patients and trigger patient-doctor conflicts, particularly after tragic outcomes.
Allegations
The conflicts often result in a cycle of allegations and counter-allegations between patients and doctors. Hemant Gambhir is embroiled in a conflict with Gunjan Gupta, a gynaecologist and chief service provider at the Gunjan IVF Clinic in Ghaziabad. Instead of taking home a baby after visiting the clinic, Hemant took home his wife's dead body.
He and his wife Ruchika, residents of Shahdara in Delhi, had approached the clinic on January 6, 2018, after Ruchika failed to conceive even after five years of their marriage.
"We went there to fulfill our dream of shared parenthood," said Hemant, an IT professional. "We were so hopeful about a possibility that had evaded us all those years."
The couple was scheduled for a cycle of in-vitro fertilisation following a battery of tests and medications that lasted nearly two months.
They were told that the chances of conception would be 60 to 70 per cent.
The day of the procedure, on March 5, Ruchika, 33, suffered a heart attack after being taken for egg-retrieval, a procedure carried out under short general anaesthesia.
"We were chatting minutes before the general anaesthesia was administered; she sent me a picture of herself via Whatsapp. That's her last photo," he said.
Ruchika had to be shifted to a larger hospital to manage her condition as the clinic, he has alleged, was not equipped to deal with an emergency situation. A few hours later after being shifted, she died of another heart attack.
Hemant has accused the clinic and Gupta of gross negligence, not explaining the risks associated with the procedure in detail, providing misleading information at the time of Ruchika's first heart attack, delaying her shifting to a hospital that could have probably saved her in the condition and not possessing proper equipment to deal with emergencies like cardiac arrests.
"I saw a defibrillator being taken inside the operation theatre from an ambulance an hour after I was first told that her condition was not good," said Hemant.
"Didn't the operation theatre have even a defibrillator? And the doctors kept telling me that her blood pressure was very low and she would need to be shifted to a bigger hospital."
He said he learnt about the heart attack only after Ruchika was shifted to Atlanta Hospital. Hemant approached the UP Medical Council and the Ghaziabad Chief Medical Officer, apart from the police.
In each case, the decision was given in favour of the doctor and the clinic. He is now fighting the case in the National Consumer Disputes Redressal Commission, where he has claimed a compensation of Rs 4.95 crore.
Gupta denied the allegations levelled by Hemant, saying Ruchika was attended by "four super-qualified doctors" and that Hemant was constantly kept in the loop when her condition started deteriorating.
"All inquiries, after rigorous investigations, have cleared my name in the case," she said. When asked why Ruchika had to be shifted to a different hospital if her clinic was equipped to manage cases gone wrong unexpectedly post-anaesthesia, Gupta said, "Not every hospital can be a Max (referring to a super-speciality corporate hospital)."
"If that happens, healthcare will become unaffordable for patients," she added.
A line in the note sent earlier this year by Health Secretary Sudan to all states and UTs reveals one reason why the implementation of the Act has stalled, a reason that the Centre acknowledges.
“It is felt there has been reluctance and resistance in the adoption of this legislation for various reasons, including reluctance and stiff resistance by lobbies of clinical establishments," Sudan wrote.
UP principal secretary, health, Devesh Chaturvedi conceded that while the state has prepared the rules for the Act, the notification is stuck because of resistance by the state chapter of the Indian Medical Association, a body of private doctors.But the IMA cited its own reason to oppose the law.
"The Act is a piece of legislation largely copied from the West without understanding Indian realities," said Pranjal Agarwal, a senior IMA member in Lucknow.
“How on earth, for instance, can all hospitals where Caesarean sections are carried out have intensive care units prescribed in the proposed rules?”
Agarwal argued that small hospitals and nursing homes offering maternal and newborn care will not survive or become too expensive for patients who turn to them.
But Hemant said his fight was precisely for the introduction of mandatory standards for clinics and nursing homes carrying out anesthesia procedures.
“My wife would have been alive today if the clinic had been equipped to manage her condition with trained critical care specialists and equipment,” he said. “My fight is to get small shops that sell healthcare shut or regulated stringently.”