society believes that everyone has the right to their private life (in the field of law, this is referred to as 'lawyer-client privilege'). It is especially important when people seek medical help. A recent study indicated that 80% of psychiatric patients believed that their relationships with their treating team would improve if their conversations were confidential (as cited by Maniatis, 2007). Forty percent of psychiatric patients in the same study stated that they would be angry if their families were informed about their condition without prior approval. Confidentiality is also based on the principle that we respect a patient's autonomy as it is believed that people are capable of making their own decisions.

How can "confidentiality" be problematic for families? Many years ago, almost all psychiatric patients were treated in hospitals or other medical institutions as inpatients. However, the current trend to deinstitutionalize people with mental illness means that they are often discharged as outpatients and cared for by family caregivers. To help provide patients with outpatient care, many hospitals have treating teams that are trained to help people with a psychiatric illness manage their illness and regain some of their lost autonomy. For many patients, this new approach to treatment often is very helpful. However, it can also create challenges for caregivers who look after people with a mental illness. It can be even more challenging when a loved one refuses to acknowledge that they have a mental illness - or worse yet - stops taking their prescribed medication. Unfortunately, mental illness often strikes during late adolescence or early adulthood, a time when people are dreaming about their futures and forging new lives. It is also a time when they are seeking independence from their families. This is normal as most people their age are doing the same thing. In these situations, caregivers often are not given permission to talk to their loved one's psychiatrist or any other member of the treating team. Of course, this is very frustrating for caregivers who function as their loved one's support system. Not only are families trying to deal with their loved one's reliance on them but they often have to deal with the fact that that their family member will often reject their interest and attention to help them. This is even more frustrating for all those involved as many research studies suggest that providing such information to caregivers can significantly decrease relapse rates. There are some exceptions to the concept of confidentiality. For instance, if someone with a mental illness is a danger to themselves or to others, then confidentiality can be breached. For this to happen, then the dangerous act must be considered as serious, that there is a high likelihood the act will be committed, that there are no other alternatives available to stop the action, and that harm will be prevented.

Can We Make a Case to Share Some Information? Given that there has been a shift of burden of care from psychiatric institutions to caregivers, caregivers should be supported by the medical profession. Psychiatric treating teams are trained to seek written permission from the patient to talk with family members at the earliest possible moment. Unfortunately, not all patients give their permission and caregivers are left with many questions unanswered - answers to questions concerning the nature of the illness, medications and their side effects, symptoms to look for if medications are not being taken, and what to look for if the illness gets worse. This is all very important information for caregivers as they help their loved ones! So what should caregivers do after their loved has been diagnosed with a mental illness? The following suggestions may be of helpful.

What Can Caregivers Do? First and foremost, it is important that the therapeutic relationship between the mentally ill person and the treating team be respected. Sharing some types of information or parts of conversations can hurt therapy and even increase the stigma that your loved one may feel. But what can be shared between family members and clinical teams? How can it be shared?

The following suggestions may be considered:

-Ask your loved one to give permission for the treating team to talk to you. This is normally done through a written document that confirms the team's legal right to breach confidentiality. Encourage your loved one to do so early in the process when they are fairly well and cooperative. The written agreement should specify what types of information can be shared and with whom. For instance, information about the diagnosis, medications, side effects, and symptoms of relapse and illness progressions. If your loved one is currently in a psychiatric institution or part of a community organization, encourage the professionals to approach your loved one for permission to talk to you when necessary. Trying to convince your loved one later can be very difficult.

-If the treating team does not have written permission to share specific information with you, try and obtain from them non-confidential information on the phone or in person. For instance, after a patient has been discharged from a hospital with a diagnosis of schizophrenia, a family member may call and ask "Can you please provide me information about schizophrenia? What do I need to know about the illness and the available treatments?" Asking general questions without making reference to your loved one will make it easier for people to help you. Specific questions such as "My daughter has been diagnosed with schizophrenia. Can you please explain to me her treatment plan?" are more problematic.

-If your loved one's treating team is uncomfortable providing some of this information, ask to speak to someone else in the institution. Your family member may feel more at ease knowing that their personal information won't be disclosed.

-Call different community organizations and educational groups. At Friends for Mental Health, we have full-time counselors who can guide you through the process and provide you with a list of other resource organizations depending on your loved one's needs. We will try and help you find answers to many of your questions. We also offer different types of support groups and psycho-educational groups (NAMI courses, borderline personality disorder training for family members) that may be of some help. We often find that group members help each other in their quest for new information. If your loved one is currently being treated in the psychiatric ward at the Lakeshore General Hospital, ask to speak to our Liaison counsellor (every Wednesday evening from 6:00 p.m. to 8:00 p.m.) who can answer your questions.

-Seek out information from other sources. It is normal for families to become curious about specific information about mental illness. You may need to search elsewhere for answers in trade magazines such as Schizophrenia Digest or Bipolar (BP) Canada. You can also find a number of books or tape programs in our library at Friends for Mental Health. Trade journals such as Hospital and Community Psychiatry or New Directions for Mental Health Services can also be a good source of information. These journals and others may be found on the Internet or in university libraries in the Montreal area. Finally, you may check out various websites such as NAMI (www.nami.org), Health Canada (www.hc-sc.gc.ca), Schizophrenia Society of Canada (www.schizophrenia.ca), Mood Disorders Society of Canada (www.mooddisorderscanada.ca), Anxiety Disorders Association of Canada (www.anxietycanada.ca), or the Canadian Mental Health Association (www.cmha.ca).

-Keep a treatment record of your loved one's level of functioning prior to becoming stable and afterwards, illness symptoms (when they began, what they are, what they may have been impacted by), hospitalization and treatment dates, names and telephone numbers of the treatment team, etc. Try and share this information with the treatment team if you can - if you can't share right now, keep it for the future.

-Inform yourself about when it may be necessary to call a mental health professional if an emergency arises and someone is in danger. Knowing what constitutes a true danger may help alleviate some of your anxiety.
Most importantly, be creative in your search information. It may appear that psychiatrists and other members of the treating teams are not being helpful in your quest to support your loved one. However, they are acting in accordance with the law and the ethical codes of their respective professional orders. But don't give up.if you have more questions, please give us a call at Friends for Mental Health: (514) 636-6885.

For more information consult the Practical Guide to Mental Health Rights from the Ministère de la santé et des services sociaux du Québec.  

Reference:
Maniatis, T. (2007). Presentation at the Douglas Hospital in Montreal, QC., January 17, 2008 Confidentiality: In the Patient's Best Interests?