Making Patient Rights Effective

Problem

During a pandemic, patient rights, which draw heavily on autonomy, can conflict with public health interests. For instance, compulsory isolation is antithetical to the notion of informed consent. While restrictions like this might be necessary in public health emergencies, it is vital that other patient rights continue to be respected if trust in the doctor-patient relationship and the health system is to be maintained. 

There have been serious erosions of this trust during the COVID-19 pandemic. Patients have had medicines thrown at them, been refused admission without a COVID-19 test, been slapped with inflated bills, and made to run from pillar to post hunting for beds. Hospitals have failed to display treatment charges, denied admission to persons in need of emergency treatment, and discriminated against Muslim patients. These actions are in breach of the Patient Rights’ Charter drawn up by the National Human Rights Commission and partially endorsed by the Ministry of Health and Family Welfare. The original version of the Charter lists 17 patient rights, including the rights to dignity and non-discrimination, quality care, access to records and emergency medical care, the availability of alternative treatment options, and the right to seek redressal.  

Some of the obligations created by these rights, especially in relation to confidentiality, informed consent and clinical research are already binding through common law or regulation. However, most of the others lack teeth. As a result, a variety of enforcement tools has been deployed during the course of the pandemic, from criminal complaints to threats to cancelling the registration of healthcare establishments to inquiries by authorities like state health secretaries, chief medical officers and district magistrates (with all three ordering separate inquiries in one case). These are of limited effectiveness—the rights in the Charter have not been incorporated into standards that must be observed by healthcare establishments, and the Charter itself has no legal backing. 

Even when these rights can be enforced, the remedies are unimaginative and inappropriate. Suspending a hospital’s licence, even outside a pandemic, impedes access to health. Criminal action is too slow to have any real deterrent value. And as the relatives of a pregnant woman who died after being refused admission by hospitals in Noida and Ghaziabad remarked, ‘A penalty on hospitals is not justice. Giving the family a monetary compensation is not the remedy. A patient should get admitted in a hospital and get treatment.’

Solution

Patient rights are only effective if they prompt behavioural change among healthcare workers and trigger systemic change in the functioning of healthcare establishments. Criminal prosecution or action under the Consumer Protection Act or a regulatory fine does not necessarily compel establishments to acknowledge their mistakes, audit their internal processes, and take action to correct them. To fill this gap, other countries, especially Scandinavia, have used the office of an Ombudsman. An Ombudsman does not usually award compensation or take penal action against healthcare establishments, but acts as a facilitator to help patients enforce their rights, whether this is by demanding a formal apology from the establishment or requiring it to take steps to improve safety and quality for patients who might come after. 

India should create the office of the Health Ombudsman to operate at the central, state and district levels and to oversee health functions corresponding to these different levels of government.

In addition to existing internal grievance redressal processes at individual establishments, India should create the office of the Health Ombudsman to operate at the central, state and district levels and to oversee health functions corresponding to these different levels of government. For example, an Ombudsman at the central level might respond to patient rights violations in a national clinical trial, a state Ombudsman could investigate budgetary allocations to healthcare, while a district Ombudsman would hold inquiries at individual hospitals.

Implementation

• Codify existing patient rights through a central law that also establishes the office of the Ombudsman. 
• Introduce patient rights modules in healthcare curricula. 
• Require hospitals to demonstrate that they have processes in place to protect patient rights as a pre-condition to registration and accreditation. 

About the Authors

Dhvani Mehta

Dr. Dhvani Mehta {B.L.S. LL.B. (University of Mumbai); BCL, D.Phil (Oxon)} is a Co-Founder at Vidhi and Lead, Health. She has worked specifically on research projects on environmental clearances, the National Green Tribunal, organ transplant laws, end of life care, and pharmaceutical and medical device regulation. She has appeared in the Supreme Court of India in petitions filed by Vidhi on advance medical directives and discrimination against persons affected by leprosy. She has authored chapters on the implementation of environmental judgments and healthcare corruption in India. Dhvani read for a doctoral degree at the University of Oxford on a Rhodes Scholarship, where she was Chairperson of Oxford Pro Bono Publico and an editor of the Oxford Human Rights Hub blog. Her doctoral thesis explores the idea of an environmental rule of law in India and was cited by the Supreme Court of India.