Writing a book on a subject like “patient’s rights” is challenging, as it can be perceived as threatening by healthcare providers, especially in the context of present-day privatisation and commercialisation of healthcare services. The relationship between healthcare providers and patients is a sensitive one. Issues of human rights violation in healthcare ─ such as denial of services, discriminations against patients based on the nature of diseases, caste and financial status, high charging practices, and inadequate quality of services ─ have been highlighted repeatedly in India. In 2019, the Ministry of Health and Family Welfare, Government of India, shared with all the States/Union Territories a ‘Charter of Patients’ Rights’ for adoption and implementation, which was further updated in 2021 (1).
The book Patients’ Rights in India has been authored by Dr Mohamed Khader Meeran, a medical doctor and social activist. The current pandemic is a reminder to bring the focus back to the issue of patients’ rights. Dr Meeran’s effort is, therefore, well-timed to generate public awareness and educate patients, their family members, healthcare providers and society at large.
The book describes patients’ rights using relevant Supreme Court and High Court judgments. The author has referred to legal provisions related to patients’ rights across different Acts such as the National Medical Commission Act 2019, and the Indian Medical Council (Professional Conduct, Etiquette and Ethics) Regulations 2002, the Consumer Protection Act 2019, the Drugs and Cosmetics Act 1940 and Rules, and the Clinical Establishments Act 2010 and Rules, etc. The book is divided into sections to explain which Act and rule could be applied while seeking the right to information, the right to receive medical registration and medical reports, the right to emergency treatment, etc. This book could act as a useful resource for patients and give them the guidance and confidence to take the first step towards demanding their rights.
We particularly like the section on what to do if death is suspected to be due to medical negligence. It explains stepwise, and prepares us for the likely challenges we will face in the process. The section on ‘Rights of The Patients Participating in Biomedical Research and Clinical Trials’ is very appropriate to patients when many interventions are being explored in India for the prophylaxis, testing and treatment of Covid-19. This section discusses informed consent, the right to information about the drugs/ procedure being tested, the right to participate or refuse, the privacy of the patient, compensation in events of adverse events which the patient is entitled to under the Drugs and Cosmetics Act, 1940. A strength of the book lies in the fact that the author has translated the concept and theoretical understanding of ‘rights’ into practical steps that lay people can adopt to demand and exercise their ‘rights’. Of course, considering the power hierarchy in a patient-doctor relationship, it is a daunting task for patients to do so.
The book’s primary focus is on the allopathy system of medicine, and the private healthcare sector. On reading the foreword, preface and recommendations – written by ethicists and a practising doctor – one gets the impression that this book would be more beneficial for the medical profession, especially allopathy doctors. In his foreword, Dr Anant Bhan states that, “Readers, both as recipients as well as providers of healthcare would be greatly benefited by reading this book and using the learning to help improve the quality of health provisioning.” The Introduction to this book is written by Dr. Amar Jesani (Editor, Indian Journal of Medical Ethics) who writes that, “by reading this book doctors can understand patients’ legal rights. By understanding this, they can prevent themselves from many cases of medical negligence & other litigation”. Hence, there is a greater possibility of the medical fraternity being willing to read and ponder over the contents of the book.
The book addresses several relevant issues regarding patients’ rights. However, in many ways it also represents a missed opportunity to contribute towards a more substantive discussion on these issues. It could have benefitted from better formatting, use of appropriate terms in the glossary of medical terms, and consistent and complete referencing. Further, the book should have used proper terms. The author has mentioned “Clinical Establishment Authority (CEA), authority (State, National)”, which is incorrect and misleading. There is only one authority, that is the District Registration Authority, and under the CEA 2010, at the national level, there is the National Council of Clinical Establishments, and at the State level there is the State Council of Clinical Establishments, both with different functions. The information provided is incomplete or wrongly reported in various places. For instance, the Clinical Establishments Act, 2010 is currently applicable in 11 states and 6 UTs. Other states have their own Acts which do not necessarily cover all the aspects mentioned in the book. Similarly, accreditation by the National Board for Hospitals and Healthcare Providers (NABH) is voluntary, and therefore the NABH standards are not legally mandated.
Some rights mentioned in the book do not have legal backing in the country, and are evolving; for instance, the right to referral and transfer, rights to health education, rights of deceased patients, and right to benefit from government sponsored insurance schemes, mentioned in the book. The author reflects upon this aspect at the end of the book. However, while reading the book one gets the impression that all the rights are granted by law in the country (eg, “the above rights are legally granted to all patients…”, pg 79). For the uninitiated, this could be misleading. In the beginning of the book, the author states that the Consumer Protection Act, 1986 was repealed, but refers to it throughout the rest of the book, instead of the Consumer Protection Act, 2019.
One fails to gauge the reason for importance given in the book to India’s National Health Protection Scheme PM-JAY ‘Right to Benefit from Government Sponsored Insurance’, and providing information on its implementation status in all the Indian States and Union territories. In the annexure section, state-wise information about the scheme, number of beneficiaries, implementation agency, and contact details are also provided and a significant portion of the book comprises annexures on this scheme.
The book could have touched upon two developments that have taken place in the arena of patients’ rights in India in the last few years. These are the granting of the right to mental healthcare through the Mental Healthcare Act, 2017, and the right to anti-retroviral therapy to HIV/AIDS-affected persons by the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Act, 2017. Discussion on how these provisions can be used would have been a valuable addition to the book. Similarly, a section on the rights of people with disabilities, women, children, and other vulnerable groups would make the book more comprehensive. Another major weakness is that the issues of implementation and enforceability, which could have been touched upon, are not.
In conclusion, this book is a good start on the issue of patients’ rights for the public, patients and their families encouraging them to lawfully demand their rights in hospitals as well as for medical doctors and healthcare fraternity to engage in ethical and patient-centric care. Dr Meeran has made efforts in covering various aspects. However, it is hoped that a revised edition of the book may be possible soon, which may address some of the discrepancies mentioned above.