Medical ethics internationally is governed by the principle of autonomy, which recognises the rights of individuals for self-determination. Autonomy is rooted in society's respect for individuals' ability to make informed decisions about personal matters. It is an important social value which has shifted to define medical quality in terms of outcomes that are important to the patient rather than medical professionals. The respect for autonomy is the basis for informed consent and advance directives.
The doctors should believe that adult patients are capable of electing to make their own medical decisions, or can delegate decision-making authority to another capable well-wisher. Only if the patient is incapacitated, laws around the world designate different processes for obtaining informed consent, typically by having a person appointed by the patient or their next of kin make decisions for them. Thus, the value of informed consent is closely related to the values of autonomy and truth telling.
The reason for "ethical conflicts" in medical ethics is lack of communication. Communication breakdowns between patients and their healthcare team, between family members or between members of the medical community, can all lead to disagreements and strong feelings.
These breakdowns should be remedied, and many apparently insurmountable "ethics" problems can be solved with open lines of communication. The patient has to be communicated all the information about his or her medical treatment, which is now being recognised as a right guaranteed by various statutes rather than leaving it at the level of a mere ethical norm.
Access to health records, UK
The UK's Data Protection Act, 1998, gives an individual a right of access to information held about him. The Access to Health Records Act 1990 gave access to a patient's medical records in non-computerised form, while Data Protection Act 1998 Act gives access to both electronic and non-electronic records. The 1990 Act is still relevant to be in force relating to access to a patient's medical records after his death.
Section 3 of Access to Health Records Act 1990 says that the holder of the record, within a maximum period of 40 days, must give access to the record by allowing the applicant to inspect the record (or an extract) or if the applicant so requires by supplying him with a copy of the record or extract.
RTI in India: Section 2(f)
Right to Information Act, 2005, provided access to records held by government hospitals. How about private hospitals? As discussed above, law mandates both private and public doctors to provide access to medical records. While defining the ‘information,’ the RTI Act under Section 2(f) of the RTI Act, provided access to records held by private bodies through regulatory public authority as ordained by any law in force. Section 2(f) says:
"information" means any material in any form, including records, documents, memos, e-mails, opinions, advices, press releases, circulars, orders, logbooks, contracts, reports, papers, samples, models, data material held in any electronic form and information relating to any private body which can be accessed by a public authority under any other law for the time being in force;
With this definition, the right of the citizen is expanded beyond public bodies and extended to private bodies also provided there is any legal access. The Medical Council Act gave that right while the health departments of various governments, regulating hospitals, have to secure the medical records from the private hospitals and provide it under RTI Act. It is the duty of the departments of health to implement the Medical Council Act along with its regulations to secure the medical records without filing any RTI request.
The Information Commissions concerned can direct the public regulatory to respect the right to access medical records, treatment, diagnosis, counsel, prescription etc., from the time of admission to discharge including relevant records pertaining to pre and post hospital stages, can direct disclosure depending on the circumstances of the case.
The CIC order
The Commission held in NP Bhatia v IHBAS that the patient's right to obtain his medical record is not only protected under RTI Act, but also under the regulation of Indian Medical Council, which is based on world medical ethics, and also as a 'consumer' under the Consumer Protection Act, 1986, as explained above.
It is the duty of the doctor/hospital to develop a mechanism whereby the copy of patients medical record from his joining to his discharge be provided to him or his legal representative even without him asking as a matter of routine procedure at the time of discharge as directed by Bombay High Court in above referred case.
Record of other patients
Can a spouse seek the medical information of the other spouse? The CIC decision on 10th April 2015 in Ms JJ v. PIO, Institute of Human Behaviour & Allied Sciences , has dealt with this question. Miss JJ sought for copies of all papers, documents, records, old medical records, case history records etc., available with Institute of Human Behaviour and Allied Sciences (IHBAS) in relation to her husband Sanjay Singh.
She alleged that she was physically tortured due to his mental illness. Her brother alleged that her husband and his relatives have suppressed the truth about his mental health to cheat her into marriage, which proved a hell for her thereafter. The PIO replied that information is related to the psychiatric medical information given to hospital in fiduciary capacity, thus exempted under section 8(1)(e).
The First Appellate Authority stated that the medical record was held by public authority in the fiduciary relationship and the information belonged to third party. However, the FAA advised the deemed PIO, the MRO, that the copies of the old medical records of the patient, if brought by the appellant at the time of treatment/admission, after due verification, be provided to the appellant. The FAA also advised the public authority to develop a framework for maintaining the source of old records made available to IHBAS teams by various family members.
The MRO contended: a) Psychiatric Case Records contain information about emotional disorders, history of suffering of patient; b) Psychiatrist has to maintain neutrality & confidentiality with patient and family members. He owes duty of confidentiality as he received information in fiduciary capacity; c) Psychiatric case records cannot be equated with ordinary medical records.
Access to full records might provoke serious reactions, including attempt to suicide. d) The Mental Health Act 1987, in India section 13(1) states that Inspector of psychiatric hospital or nursing home is required to keep confidentiality in relation to personal records of patient. As per S. 38 even visitors cannot be allowed to inspect records of patients.
Medical records of other person is ‘personal’ information of that person, hence, cannot be disclosed as exempted by the Section 8(1)(j) of the RTI Act. As 9-member bench of the Supreme Court emphatically laid down in Justice Puttaswamy (Retd) v Union of India on August 24, 2017, the right to privacy is the fundamental right of every person and cannot be disclosed as a matter of rule.
However, Section 8(1)(j) of RTI Act provides that personal information need not be disclosed unless the larger public interest justifies it. If the information is personal or would amount to invasion of privacy of the individual, what the Public Information Officer has to satisfy is whether the larger public interest justifies the disclosure. The Bombay High Court said that the Regulations framed under the Indian Medical Council Act, will have to be read with Section 8(1) (j) of the Right to Information Act.
If a spouse is subjected to suffering because of incurable disease of other spouse, it is a ground for divorce. Section 13(i)(v) of the Hindu Marriage Act, 1955, provides that a marriage can be dissolved on the ground that the other party has been incurably of unsound mind, or has been suffering continuously or intermittently from mental disorder of such a kind and to such an extent that the petitioner cannot reasonably be expected to live with the other. When disease of one person is affecting rights of the other, public interest demands disclosure of such information. (Part of the Author’s paper at RTI Commissioner’s conference on 7th April 2018 at New Delhi)