Nothing is more frustrating for family members than to desperately want information about their ill relatives and their treatment, only to be told by a family doctor, psychiatrist, psychiatric nurse or health team worker that they would like to oblige but they can’t because such information is “confidential.”

Alternatively, the psychiatrist may say, “We’ll have to get permission from your son [or whoever the ill person is] to talk to you,” and when the person refuses, most often because they’re psychotic and because their family members may be part of a paranoid delusion, the psychiatrist says, “That’s the law.”

In fact, it isn’t the law. The refusal to share information undermines family involvement as part of the treatment team, for which two-way communication between family members and professionals is essential. The refusal also runs against best practices. It adds to family members’ grief and strain as they struggle with the difficulties of trying to help their ill relative. It also, all too often, leads to tragedy, both because family members don’t have all the information they need and because, without it, their feedback to the psychiatrist in turn is inhibited.

The North Shore Schizophrenia Society encourages professionals to share information with family members and also instructs family members on what the law and “best practices” are on the matter. We explain to family members the importance of insisting they be kept fully in the picture by professionals and give them support to follow through when necessary.

The law is quite clear on the subject. The B.C. Freedom of Information and Protection of Privacy Act (FIPPA) specifically allows information sharing with third parties, including families, for the purpose of continuity of care – indeed, for any purpose consistent with treatment objectives. Similarly, the College of Physicians and Surgeons of British Columbia, in a statement on the issue, makes it clear that psychiatrists and general practitioners have plenty of flexibility allowing them to share information for the benefit of their patients, given that a person with a mental illness may not have insight into their own situation. Indeed, if families are to be part of the treatment team, the question of whether or not to share information shouldn’t even come up, nor would they be seen as “third parties” to begin with. Clinical information about the patient – about the psychosis, medication and dosage, deterioration or improvement, “negative” symptoms (such as lethargy, sleep reversal, impaired cognitive function), and all else that’s relevant – should be shared with family members by psychiatrists, nurses and outpatient workers in the same way they share the information among themselves.

Not all professionals, citing “confidentiality,” decline to share information. An increasing number of them go out of their way to keep family members informed and to answer their questions. It’s just good medical practice to do so. All too many of them, however, still don’t follow best practices and throw up roadblocks to effective communication.

The refusal to share information is often part of a larger problem: Some psychiatrists and outpatient workers or therapists, who refuse to speak to family members altogether, won’t solicit information and observations from them, or won’t respond to the family’s attempts to communicate and pass on information. Housing workers or agencies also sometimes pick up this habit of not communicating to families.

The North Shore Schizophrenia Society advocates for real collaboration between professionals and families, with family members having “peer status” in the treatment effort and participating fully in the “treatment information network.” Professionals should make sure they share information with concerned family and friends, get them involved, and draw on their observations. Artificial and inappropriate strictures of confidentiality, which preclude such collaboration, should be laid to rest.

Useful references
Freedom of Information and Protection of Privacy
A fact sheet excerpted from Appendix 13 of the 2005 Guide to the Mental Health Act, explaining how the legislation allows for sharing of health information with families in the case of the mentally ill, and providing examples.

Ontario and BC Privacy Commissioners joint message: personal health information can be disclosed in emergencies and other urgent circumstances
Following tragedies such as the suicide of a student at Carlton University, and the Virginia Tech massacre, two privacy commissioners in Canada issue this news release to clarify that there are situations where sharing health information is legal in certain circumstances

Family Involvement with Mental Health and Addiction Services
Vancouver Coastal Health, 2014

Family involvement means information sharing
A special issue of the NSSS Advocacy Bulletin on the sharing of information with families, providing a detailed analysis of the clinical rationale for information sharing and the failure of many professionals to follow through.