Soon, a clean bill of health

In his Independence Day speech, Prime Minister Narendra Modi had promised that some 10 crore families in the country would each get a health cover of Rs 5 lakh a year under a ealth scheme slated to be rolled out two days from now. About a fortnight after the announcement, the Union Health Ministry put up on its website a draft of the rights patients should be afforded in the country, in line with global health care and standards.

The draft Charter of Patients’ Rights, prepared by the National Human Rights Commission (NHRC), lists 17 specific privileges a patient might be guaranteed under law, if they are ratified. 

These include the rights of a patient to receive treatment without discrimination on sexual, religious or casteist grounds, or on the basis of their illness; to remark on the care they receive or even raise complaints if needed; to be informed how they may give this feedback in a user-friendly manner; to seek redress if any part of the charter is violated. 

The charter also states that hospitals cannot detain a patient, or confine the body of a deceased, over procedural grounds such as a dispute over medical charges, under any circumstances.

It is currently fielding suggestions and objections from the public and other stakeholders, so the draft may be improved upon. 

The consolidated document, if made into law, would ensure a standard health care in each state. 

Currently, some states follow the National Clinical Establishments Act 2010, while the others have enacted their own legislation to regulate hospitals and clinics. 

The draft also lays down the responsibilities of a patient. These include maintaining the dignity and safety of medical professionals and facilities. Bereaved patients or their kin often thrash doctors or vandalise government hospitals, as this newspaper has reported in the past. “Whatever the grievance may be, patient/caregivers should not resort to violence in any form or damage property of the hospital or the service provider,” the charter states. 

It puts some onus of self-care on patients as well, asking them to cooperate with doctors during diagnostic tests and treatment, follow instructions regarding appointments, avoid disturbing other patients, and keep the facilities clean.

“Most patients are seen littering, which is not healthy for anyone. We do not wish that they give us special treatment but the least they can do is treat us with respect. Even with all the stress we are under due to the rising number of patients at government hospitals, we do our best to do the job with integrity. Most doctors genuinely want to help. They intend to treat a patient well. In spite of all this, the assault cases against doctors are on the rise,” said Dr Nishant Ashwani, joint secretary, the Federation of Resident Doctors’ Association (FORDA), an umbrella body of resident doctors.

The charter aspires to world-class standards of health care, which essentially draw from the Universal Declaration of Human Rights adopted by the United Nations in 1948. The document underscores the fundamental dignity and equality of all human beings, and has been the plinth of certain basic rights accorded to patients across the globe over the last few decades. 

In other words, the patient is entitled to a degree of protection to be ensured by physicians, healthcare providers, and the State, which have been codified as charters of patients’ rights.

In India, there are certain legal provisions concerning patients’ rights, but they are scattered between disparate legal documents: Article 21 of the Constitution of India, the Indian Medical Council (Professional Conduct, Etiquette and Ethics) Regulations 2002, Consumer Protection Act 1986, Drugs and Cosmetics Act 1940, Clinical Establishment Act 2010 and related standards, judgments given by the Supreme Court, and decisions of the National Consumer Disputes Redressal Commission. 

Key safeguards stipulated by these regulations would be integrated under the charter.

“There is an expectation that this document will act as a guidance document for the Centre and states to formulate concrete mechanisms so that patients’ rights are given adequate protection and operational mechanisms are set up to make these rights functional and enforceable by law,” NHRC has said.

“While this is a good initiative, we will come out with our statement on the matter in the next two days,” said Dr Ravi Wankhedkar, president of the Indian Medical Association (IMA).

Holes in infrastructure are swallowing people alive

On August 24, 2016, a man in Odisha walked 10 kilometres with his wife’s lifeless body over his shoulder after he was denied an ambulance service.

Five days later, in the most populous state of Uttar Pradesh, a father’s sick boy died in his arms after a hospital in Kanpur denied him admission. 

It may be a long way before the regime can match up to the breadth of services offered by its counterparts elsewhere in the world. 

Social activists working towards better health care facilities in the country attest to that. They cite a plethora of cases where patients have suffered or died because they did not have a medical facility nearby, or were refused admission by a hospital over a petty reason, or because the doctor was not available, or because of rank negligence or callousness by staffers.

As per a state chapter of the IMC, the Maharashtra Medical Council (MMC), a majority of the complaints filed by patients or their relatives are related to inadequate communication between doctors and patients/patient’s families. As much as 80 per cent of the grouses are rooted in misunderstanding between patients and doctors regarding the treatment prescribed.

Swati Patil, a social activist from Lokjagruti Samajik Sanstha, a non-governmental organisation, has been raising awareness around the dearth, if not total absence, of medical facilities for patients in the state, as well as rights of patients to quality care. 

She said, “We have been raising the issue with the Maharashtra government through letters. The charter will help patients ask for their rights at the time of treatment. A large number of patients visit government hospitals daily, but the large-scale shortage of medical staff affects the quality of care that they 
receive.”

A medical social worker at Mumbai’s major civic-run King Edward Memorial (KEM) Hospital in Parel, Subhash Salve, said, “There are many communication gaps. Many times, patients do not know what kind of treatment they are undergoing and what exactly is the problem. They should have the right to know this, and this must be communicated to them by the doctor administering treatment to them. Sometimes, they are clueless about the kind of illness for which they are undergoing treatment, and the doctors should explain to the patients and their relatives the medical condition as well as their medical status.”

Sometimes, a patient is refused admission even when there is an emergency. Satyajit Burma, a health care activist in Mumbai, said, “There are situations where emergency cases are denied treatment and relatives are told to take them to another hospital. Then, we get complaints from patients that their doctor has prescribed them medicines for which the professional got a huge commission from the pharmaceutical company. Or, they would prescribe needless tests because they receive some ‘consideration’ from the diagnostic lab. Unwanted pathology tests need to stop as they can prove dangerous for the health of the patient, not to mention affect him financially. The patients should be clearly told the reason they have to undergo one or many tests.”

The Charters of Patients’ Rights hopes to plug these lacunae in both public and private medical facilities, as recommended by the rights panel.

Dr Abhijit More, a health activist who is a co-convener of Jan Arogya Abhiyaan, a non-profit whose name is similar to the Prime Minister’s National Health Mission, said, “If the state governments adopt the charter, it would be an effective tool for patients to get their rights. As things stand today, patients’ rights don’t have a statutory backing. If this draft is adopted, then it would be the first time that countrywide, patients rights and responsibility will be codified. Many welfare organisations and patient support groups have been demanding exactly such a charter for the country. Globally, a few other countries have such charters to help the patients.”

He further said that whether it is a public or a private hospital, basic rights of patients like informing them completely about the treatment and its side-effects, access to their own medical records, and treatment with dignity must be given to them. 

He also said that safety precautions during clinical trials are a must for the patient. 

“It would be the first time that a comprehensive document about patients’ rights has been put together. It will help patients voice their concerns and give them a chance to claim basic rights.”

What other countries do

Let’s take a look at first-world countries to consider the rights they have accorded to their ailing citizens. 

Take the US, for example. In 1973, the Patients’ Bill of Rights was first adopted by the American Hospital Association, and it was later revised in October 1992. 

The Bill of Rights was developed with the expectation that hospitals and health care institutions would support these rights in the interest of delivering effective patient care. 

In the UK, the patients’ rights come under the National Health Service (NHS) Constitution. The rights include patient safety, mental health, and the quality of food patients are given. They can also access their health records on the NHS website.

Additionally, under the NHS, a patient also has the advantages of being assigned a general practitioner, or offered a checkup if they are between 16 and 74 and have not seen their GP in last three years, and so on. 

This seems like a distant dream for a country like India, which is short of nearly 5,00,000 doctors, based on the norm set by the World Health Organisation (WHO), according to which there should be one doctor for every 1,000 people in a country. 

With such dismal statistics, it is obvious that a significant portion of the populace, especially the urban poor and those in rural India, are denied timely health care. 

Sealing these gaps would mean a systemic overhaul, which begins at the level of medical education, and entails a change in how the public and professionals in the field view and approach illness.

CASE STUDIES

SHANTILAL GANGAR, 70

Gangar is a 70-year-old Mumbaikar, who lives in a neighbourhood in Mazgaon in south Mumbai. 

He met with a grave accident in 1992, after which he was implanted with an artificial mental hip implant. Till 2008, the device seemed to work fine, and Gangar could live a normal life. But that year, the metal started degrading, because of which he had to undergo another hip implant in 2009. The operation was performed at a private hospital by an orthopaedic surgeon. 

Ever since this “corrective surgery”, Gangar has been suffering from severe pain and ulcers that erupt on his legs from time to time. 

The device that had been implanted the second time was manufactured by a subsidiary of Johnson & Johnson. It was declared faulty. According to Gangar, the consulting doctor misguided him.

Like Gangar, many patients have had to undergo revision surgeries within two to three years of getting the implant, because of the fault in the device. Gangar and his family say it was his right to know about an implement which was implanted in his body, but the doctor misled them.

Till this day, Gangar can’t walk properly.  

His nephew Bhavesh (pictured) said, “Within one and a half years of the 2009 hip implant surgery that my uncle went through, he started experiencing pain in the joint and got ulcers on his leg. These ulcers do not heal. We were not aware that the device was flawed. After the police took up the case, the investigating officer informed us about the fault, and we contacted the concerned doctor. The doctor replied that there was nothing to worry about, and that the metal ball that had been implanted was of good quality. We feel he misguided us and endangered the health of our family member.”

ROHINI RAMACHANDRA SAMANT, 78

In the month of April 2018, the Food and Drug Administration (FDA) received a complaint by a Mumbai-based doctor regarding a faulty device. 

Dr Prasad Samant’s mother Rohini Ramachandra Samant (78) had undergone a knee implant in October 2009. “After the surgery she was not able to walk properly and suffered from swelling. She complained about redness near her knee and feeling heat sensation,” he said.

So she had to undergo a battery of medical tests and treatments between 2009 and 2011. “Later on, we were told that she required a revision surgery in both her knees,” he said. 

In his letter to FDA, Samant mentioned lack of guidance to the patient and family members by the treating doctor, because of which his mother faced trauma.

The family has spent more than Rs 25 lakh so far on treatment. They got to know about the faulty device through the news and a probe committee formed by the Centre. It was also manufactured by J&J. 

The family has also filed a complaint with Maharashtra FDA and the local police station in Mahim this year.