Chapter 3: Right to Full Disclosure and Information

A patient has the right to know why a test is needed; what the expected results are ; how much it costs; and how it can change her treatment options

Sample these reported cases reported in the media:

In October 1989, Zairunnisa Parekh got admitted for treatment of a tiny 1-cm stone in her kidney at Jaslok Hospital, Mumbai. She died 35 days later of peritonitis. Her husband Yusuf and son Mushtaq filed a case of negligence against the doctors, stating that the hospital denied them a copy of her medical records.

In another such case, Bhagwati Raheja died after a by-pass surgery at Mumbai’s Nanavati Hospital. The deceased’s husband maintained he was refused a copy of his wife’s medical records.

Medical Council of India Guidelines on Medical Records

The MCI Regulations 2002 state:

Indoor records need to be maintained in a standard Performa for three years from commencement of treatment (Section 1.3.1 and Appendix 3).

Request for medical records by patient or authorised attendant should be acknowledged and documents issued within 72 hours (Section 1.3.2).

On 11 July 2001, Sandhya Karmakar, 36, mother of a ten-year-old boy, died at the SSKM hospital in Kolkata. She had been admitted for appendectomy on 26 June. The surgery went fine, but a surgical mop was ‘inadvertently’ left behind in her abdomen. Surgeon M L Shaha had to perform a second surgery to remedy the error on July 3. A leakage developed and to fix that, a third surgery had to be done on July 7. It was later discovered that the doctor who had performed the appendectomy had left the entire post- operative process, including suturing the wound, to his nursing staff.

In these, and several other such cases, patients or their families had to seek intervention from the Courts in order simply to access their medical records - documents that were legally their property. When complications occur, hospitals invariably deny wrong-doing and the onus shifts to the patient’s family to prove that what went wrong was a result of the doctor’s or the hospital’s negligence. Without concrete evidence in their possession, this can be almost impossible.

Patients and their families often complain that a particular doctor is keeping them in the dark about the diagnosis or prognosis of a disease. A busy doctor, walking away from anxious relatives with nothing more than a pat on the shoulder (and sometimes not even that), is unfortunately a very common sight in our hospitals. Patients commonly complain that a

physician orders a battery of tests or procedures, without explaining why they are needed, how much would they cost; what results are expected; and how these would affect their line of treatment. When this basic information is not readily forthcoming, the outcome can be frustration that leads to growing discontent with the doctor and the hospital.

The Truth, the Whole Truth, and Nothing but Truth...

Sometimes, withholding the harsh truth from the patient is not a result of medical paternalism, but arises out of the doctor’s sincere desire to protect the patient from emotional distress.. It’s not always easy for a doctor to know how much truth the patient can tolerate and this can create a dilemma for the doctor, as the following story, “The doctor’s word” by R K Narayan illustrates:

Dr. Raman diagnoses his close friend to be critically ill. The doctor knows that the patient has a good chance of recovery if his condition does not deteriorate during the night. Now the ethical dilemma confronting Dr Raman is - should he tell the patient the truth about his dire prognosis, or should be wait until the next morning?

The patient has already expressed his wish to write a will. The good doctor is in a fix. He resolves it by deciding to deceive the patient, and tells him that he can easily write the will the next morning, since there is no urgency. The patient is relieved, and survives

What is the moral of the story? The doctor needs to use his judgment as to whether or not to disclose information that has the potential to harm the patient.

The reporting of several incidents of medical negligence and subsequent cover-up attempts by hospitals and doctors have resulted in patients being better informed about their legal rights. Patients are now demanding a more transparent and accountable doctor-patient relationship. According to a Supreme Court directive, patients and their relatives have the right to be informed and this consent is meant to educate the patient, not just protect the doctor and hospital. Merely asking the patient to sign a piece of paper thrust in front of him by a nurse on his way to the Operation Theater will not serve the purpose.

Patient-advocates can help doctors to build a rapport with the patient, so that there can be a full and frank discussion of the risks and uncertainties which are inherent in any medical treatment.

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