Shweta was in her 30s when she was diagnosed with uterine fibroids. Her gynaecologist recommended key-hole surgery to remove the growths. Not too long after the anaesthesia had worn off, Shweta began experiencing searing pain on the skin of her back and forearm. A family member found red and blistering patches. Upon asking, her doctor was nonchalant; no explanation was offered and a nurse was instructed to administer an ointment.
Three nights later, Shweta was discharged, but the pain continued. She visited another physician, who said her body might not have been grounded properly during the use of heat instruments in the removal of fibroids. Burns from heat instruments—to the skin and internal organs—are recognised risk factors. Yet Shweta was not informed, either before or after the surgery. “It was the not knowing that caused anxiety,” Shweta says.
Shweta healed in a few weeks, the only evidence was scarring, and the mention of an ointment in her discharge summary. Like most, Shweta didn’t know that clues to her injury lie in her medical record. “Most patients think the discharge summary is all they are entitled to,” says Uday P Warunjikar, Member of the Bar Council, Maharashtra & Goa.
The fact is, “Doctors are required to write notes of their in-patient and outpatient consults, and patients have a right to these notes,” he says. Often the first time a patient knows they can request their records is when insurance companies ask for them, or when shifting to another city or physician. “No explanation is needed to access these records,” says Warunjikar. “The hospital is required to provide copies within 72 hours.” If they don’t, a patient can approach the state medical council.
With government or government-aided hospitals, there is additional protection for patients under the RTI Act. Shailesh Gandhi, the former Central Information Commissioner, recounts a peculiar case. “The hospital claimed that the patient couldn’t request her records as her husband had admitted her, when she was too ill to sign herself into the facility.”
The woman was in the midst of divorce proceedings, so she couldn’t request her husband to petition for the papers. Gandhi ruled in the woman’s favour because patients have a right to their records.
An informed patient
The ongoing protest by medical professionals in Rajasthan, against the recently passed Right to Health Act, has once again brought patients’ rights under the spotlight. Among the 17 rights listed in the Charter of Patients Rights—a guiding document—notified by the health ministry in 2018, an important one is a patient’s right to information about their condition and the possible treatment as well.
The doctor-patient relationship is fiduciary, says SV Joga Rao, an advocate and research scholar in healthcare law and ethics, in which the doctor is required to act in the best interest of the patient. He says, “For a patient to make a decision, they must be made aware of available treatments, details of each modality, along with the risks and drawbacks.”
Despite this, it is not uncommon for this essential step to be glossed over, even as patients are made to sign consent forms before procedures.
Dr Sanjay Nagral, chairperson of the Forum for Medical Ethics Society, and publisher of the Indian Journal of Medical Ethics says the root of the problem lies in inequality in the doctor-patient relationship.
“Culturally,” he says, “doctors in India are placed on a pedestal, but they need to view patients as equals—if not higher—because they live with the consequences of a surgery or treatment.”
Sara, a first-time mother, delivered at a multispecialty hospital in Mumbai. She had been under their care throughout her pregnancy, but after her emergency C-section, she was extremely ill. “I was transferred to the ICU, hooked up to meds and machines. My husband kept asking the doctors what was wrong with me. They would offer reassuring words, but no diagnosis was shared,” she says.
Months later, Sara visited another gynaecologist who said she might have suffered eclampsia, but couldn’t make a definitive diagnosis because of a scant summary. Sara then tried to get a ‘detailed discharge report’. “We thought the discharge summary was all there was to my case,” she says. Sara was unaware that multispecialty hospitals have a medical records department. Did she suffer eclampsia? Could it have been prevented? These questions bother her as she contemplates having another child.
Not just records
Rao also reminds us that patients have a right to a second opinion. Dr Nagral goes further, saying doctors should encourage second opinions, particularly in complex cases. “Medicine is not an exact science, and is always evolving; a second opinion could enhance the treatment,” he adds.
Shiva, a senior citizen, developed symptoms that pointed to piles. He had undergone surgery for the same two decades ago and had since shifted cities. Now, in his late 70s, the symptoms reappeared. He visited a colorectal surgeon at a multispeciality hospital in Mumbai.
Shiva says, “The doctor was insistent that surgery was necessary. He asked me to check into the hospital the next day, as he was travelling the next week.” Given Shiva’s age and comorbidities, he sought a second opinion. This surgeon prescribed a course of medication. The symptoms disappeared and today, years later, Shiva remains problem-free.
In addition to a second opinion, a patient may also request a multidisciplinary appointment. For instance, the removal of a cancerous mass may require a surgical oncologist, a general surgeon, urologist, depending on the affected part of the body. In such cases, Dr Nagral says, patients can request a joint appointment, where various specialists together suggest the way forward.
Redressal under law
What happens when one suffers an iatrogenic injury/harm (caused by medical intervention)? In cases of medical negligence, patients have recourse to medical boards. They can also file cases at civil, criminal and consumer courts. Warujikar, who is also the President of the Consumer Courts Advocates’ Association, Mumbai, says consumer courts are preferred, as they are fast and economical.
Rao adds that patients don’t need representation by a lawyer at consumer courts. However, procedural matters can be daunting and require significant legal research. Many rights that protect patients are scattered across various legal documents, which adds to the challenge of a patient defending themselves in consumer court.
A 2019 WHO report says globally four in 10 patients are harmed in primary and outpatient care, and up to 80 per cent of this is preventable. Each year 2.6 million deaths occur in hospitals in low- and middle-income countries due to diagnostic errors, unsafe surgical procedures and transfusion practices, hospital-acquired infections, and delay in diagnosing sepsis.
Dr Nagral says victims are reluctant to litigate, more so given their physical suffering and debilitated state; instead, they want to be heard and supported when things don’t go as planned. Nagral’s conclusion appears to be supported by Jennifer K Robbennoit’s article in the US’s National Library of Medicine, ‘Apologies and Medical Errors’. The author says, “Incorporating apology into the conversations between physicians and patients can address the needs of both parties and can play a role in the effective resolution of disputes related to medical error.”
Systemic change won’t happen overnight, but if physicians and patients see each other as allies in
a flawed system, this could be a prescription for a healthier future. Names of patients have been changed to protect their privacy
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