250921P - PRIVACY, CONFIDENTIALITY, DISCLOSURE, AND TRUTHFULNESS

Presentation prepared by Professor Omar Hasan Kasule Sr MB ChB (MUK), MPH (Harvard), DrPH (Harvard), Chairman of the Medical Ethics Committee at King Abdullah bin Abdulaziz University Hospital, Riyadh

1.0 PRIVACY

• Privacy and confidentiality are two different concepts that are sometimes confused with one another. In practice, privacy and autonomy are closely related.
• An individual has a right to privacy that implies the right to make decisions about personal or private matters and blocking access to private information.
• Privacy rights define and protect an area in the life of the citizen from which others are excluded except under certain circumstances.
• The physician can enter into this privacy only if there is an autonomous decision of informed consent.
• There are situations in which the Law permits invasion of a citizen’s privacy such as compulsory screening and treatment of some diseases.

 

2.0 DEFINITION OF MEDICAL CONFIDENTIALITY

• The patient voluntarily allows the physician access to private information in the trust that it will not be disclosed to others.
• This confidentiality must be maintained within the confines of the Law even after the death of the patient.
• In routine hospital practice, many persons have access to confidential information, but all are enjoined to keep such information confidential.

 

3.0 THE BASIS FOR MEDICAL CONFIDENTIALITY: Clinical care: 

• If the patient is not assured that information revealed to physicians will be kept in confidence, he or she will not provide sufficient information to the physician for proper diagnosis and management.
• Such a violation destroys future co-operation because the patient will hold back some information from the caregiver, thus impairing correct diagnosis and appropriate management.

 

4.0 THE BASIS FOR MEDICAL CONFIDENTIALITY: Autonomy, privacy, and fidelity:

• The patient has the right to keep personal information private and inaccessible to unauthorized persons
• It is part of the trust between the patient and physician that their professional relationship remains private.
• The psychological basis of fidelity is the private and privileged relationship of trust between the patient and the caregiver. Revealing secrets that occurred to a third party is a violation of trust.
• If a person seeks advice and divulges secret information, that information is protected because the advisor is supposed to be trusted

 

5.0 THE BASIS FOR MEDICAL CONFIDENTIALITY: social and legal

• The social basis lies in the prohibition of spreading rumors and backbiting.
• The legal basis is based on the law of contract, the three Principles of the Law, and the Law of Property. Keeping medical secrets is part of the physician-patient contract; fulfilling a contract is an obligation in Islam.
• Revealing secrets injures the reputation of the patient and violates the Principle of Injury, which states that an individual should not harm others or be harmed by others. 
• Under the Principle of Hardship, confidential information can be revealed in cases of necessity. The Principle of Hardship states that hardship mitigates the easing of the rules and obligations. Necessity legalizes the otherwise prohibited. Therefore, for purposes of treatment, information can be revealed to other healthcare workers. Information can also be revealed in pursuit of justice.

7.0 DISCLOSURE: OBLIGATION TO TELL THE TRUTH

• As part of the professional contract between the physician and the patient, the physician must tell the whole truth.
• Veracity is based on respect for autonomy, fidelity, and confidentiality.
• Patients have the right to know the risks and benefits of medical procedures in order for them to make autonomous informed consent.
• Deception violates fidelity.

 

8.0 WHAT IS DISCLOSED

• Disclosure of some forms of information may constitute maleficence.
• There is no obligation to disclose information that the patient does not request or does not want.
• Some patients may prefer not to know the truth.
• There is no obligation to disclose unwanted information.
• Patients should be told only what they need to know or what they want to know.

 

9.0 PARTIAL DISCLOSURE and WHITE  or  TECHNICAL LIES

• Partial disclosure can be considered a half-truth and, therefore, a form of lying.
• Technical lies are statements that are apparently true and whose truth can be defended using data and reasoning, but they contain an element of untruth that any person privy to the whole information will be able to discern.
• The physician may consider telling ‘white lies’ for the sake of the patient's welfare.
• The physician should be guided in his communication by the background and understanding of the patient. Some patients can be given a lot of information, and they do not get disturbed. Some types of information agitate patients. The prophet taught talking to each person according to their ability to understand.

 

10.0 DISCLOSURES TO OTHERS ABOUT   THE   PATIENT

• It may be necessary for the physician to share some confidential information with members of the family to get involved in inpatient care.
• This may take the form of getting more information about the patient, consultation about the best care, or trying to interpret and understand the patient’s choices and decisions.
• In general, divulging unsolicited information to governmental or other authorities is frowned upon.

 

11.0 GIVING BAD NEWS - 1

• Bad news is common in medicine. The patient may have to be told about a diagnostic result that indicates a more serious disease than had been anticipated. The prognosis may be bad, or the treatment may fail.
• In general, it is better to keep quiet than to pronounce anything uncomfortable. However, the obligation of veracity and transparency forces the physician to give bad news to the patient and the family.
• Telling the patient half-truths or white technical lies may be a way out of the dilemma of giving bad news, but it destroys the confidence and trust that patients put in doctors.
• Telling a straight lie is forbidden.
• Each case should be evaluated on its own merits by balancing benefits and injuries. In the end, it may be better to be straight in dealing with the patient and warn them before giving bad news. Their permission could also be asked for. Some may prefer that they not be told the whole truth because that would distress and disturb them.

 

12.0 GIVING BAD NEWS - 2

• Some bad news is better given to the relatives. They can find a way of conveying the information in a gentler way that minimizes the mental injury to the patient. They may also make a better judgment of what to tell and what not to tell the patient.
• Some bad news may be given to authorities in the form of medical certification for temporary or permanent disability, sick leave, and return to work.
• Physicians should be careful about their body language. It is very difficult to hide feelings inside. The patient will read the body language and will believe it more than verbal language. A verbal reassurance of the patient that he will do so well is contradicted by a show of worry and agitation on the face of the physician. This is perhaps one argument for telling the whole truth to the patient, whatever the consequence, because they can read it for themselves from the physician’s body language.

CASE SCENARIO – 1 (privacy and confidentiality): 

• A neurologist informed his wife over dinner about an elderly school bus driver who had Parkinson's disease and had to take an unusually high dose of medication to suppress the tremors. The medication made the patient sleepy all day. The wife asked for the name and realized that the patient was a driver for her school transport company who had been coming to work late in the past 2 weeks. She dismissed him the next morning.

CASE SCENARIO – 2 (privacy and confidentiality): 

• The manager of a national airline was worried about the erratic behavior and mistakes of one of the senior pilots. He asked around and found out the name and address of the pilot’s family doctor, who was in private practice. He wrote to the private practitioner to provide records about the treatment of the pilot for vision and psychological problems. He asked specifically for information on drug abuse. The private practitioner called and gave the information, but told the manager that he could not write it down since he had not discussed the matter with the patient. 

CASE SCENARIO – 1 (disclosure and truthfulness): 

• An 80-year-old fully conscious and competent man with advanced incurable cancer needed palliative chemotherapy.  The family objected when the doctor wanted to obtain informed consent from the patient because that would involve disclosing the diagnosis, making the patient very sad and depressed.  The family wanted to make the decision without informing the patient.  What should the doctor do? Provide your moral reasoning.

CASE SCENARIO – 2 (privacy and confidentiality): 

• A pediatrician examined a child with multiple trauma wounds and suspected that the father was responsible. He was reluctant to report because the father would be imprisoned and the family would lose its breadwinner. What do you think is the correct approach?