Aging Horizons Bulletin

Findings show Patients and Families Not in Agreement on Disclosure of Health Information

The nuts and bolts of disclosing patients’ health information continue to fuel debate in Canada and elsewhere.

In an attempt to shed light on the topic, researchers from the universities of Toronto, Calgary and British Columbia recently conducted a series of interviews with professional care providers, persons with early-stage dementia, and family caregivers.

Researchers discovered that patients and their families were not on the same page when it came to sharing information.

Here are the findings:

Professionals reported valuing disclosure both to colleagues and family caregivers on the basis of its being in the patients’ best interests

Patients valued inter-professional exchange, but sought strong control over disclosure to family members

Family caregivers valued being kept informed of the patient’s condition, even without the latter’s consent.

What can you do?

“In such a case, the conflicting values of patients and family must be prioritized,” says Dr. Margaret A. Somerville, Centre for Medicine, Ethics and Law, at McGill University.

She suggests the following:

Priority be given to the competent patient’s decision and, to the extent possible, to the incompetent patient’s wishes regarding disclosure.

When some values cannot be honoured because they conflict with others that are given, justification must be given for the decision made.

S. Tracy, et al., (Fall, 2004). To Tell or Not to Tell? Professional and Lay Perspectives on the Disclosure of Personal Health Information in Community-Based Dementia Care. Canadian Journal on Aging, p.203-215.

Somerville, M. A. (Fall, 2004). “Doing Ethics” in the Context of Sharing Patients’ Health Information. Canadian Journal on Aging, p.197-202.