Patients’ access to information

This is in no sense a complaint. I simply seek advice from you and your readers on patients’ access to information about their treatment. Where a patient is incapacitated by age,hearing impairment or their handicap, his relatives – specially one medically qualified – would exercise the right of access, if one exists.

The question arises out of my 89-year-old brother’s stay at the Holy Family Hospital, Bandra, where he was operated by Dr. lan D’Souza for colon cancer. He then spent a few days in the ICU, supervised by Drs. D’Souza and Robin Pinto, cardiologist. My brother is hard of hearing and communication with him is difficult at the best of times, even with a hearing aid. In the hospital he did not have his hearing aid.

The patient’s nephew is a doctor with an MD from Christian Medical College, Vellore. So we rely on him to verify and interpret in lay language the line of treatment the supervising doctors adopt. As no doctor was present at the time of his visit, he asked the nurses to show him the case papers. When they refused to do so he asked them at least to read the papers to him. This too was refused. (The nurses later invented a story that he had insisted on grabbing the papers himself. This, of course, was false.)

Dr. Pinto later ruled that the patient’s nephew had to no right to demand the papers (which he had not done) or to ask the nurses for information (which he had). Dr. D’Souza justified the refusal by explaining that in the past patients* private doctors had taken the papers and even changed the line of treatment.

An article, ‘A patient’s right to know, in the issue of Medical Ethics (1994;1(3):5-8) contains this passage: ‘When specific questions are asked by the patient or his near relatives, a full and fair disclosure must be made in response to them.’ The Supreme Court has had something similar to say about this.

I repeat, this is not a complaint. The two doctors 1 name have been most attentive and competent. I write because I hope that when I eventually have to enter a hospital for treatment the doctors who treat me will be less secretive about the magic they try to work. On this I seek reassurance.

(A cardinal principle in medical ethics is that of the autonomy of the patient. The patient cannot make decisions on – tests to be carried out on him or treatment to be undertaken – without detailed explanation of the pros and cons in each instance. When the patient, handicapped by deafness, finds it difficult to understand what is said to him, it is especially necessary to ensure that all such information is conveyed to him accurately, often through his near and dear ones. This apart, through a ruling by the Bombay High Court, the patient has a right to access his medical case records (see Issues in Medical Ethics 1996;4:66). Hospitals can no longer refuse access to case records or even permit mere inspection of them. Actual copies must be handed over on request. Mr. D’Souza has not clarified whether the patient stated to the nurses and doctors that the physician-nephew had his permission to access the case papers. Hospital authorities cannot and will not hand over case papers containing confidential information on the patient to any one who asks for them without due authorisation from the patient. Editor)