Visions Journal

Privacy, information-sharing and family participation in the mental health system

Clara Sitar, BSW, MSW, RSW

Reprinted from the "Families and Crisis" issue of Visions Journal, 2017, 12 (4), p. 31

The experiences of family members in the mental health system have touched my heart both personally and professionally. I have witnessed individuals I care about struggle in the system as they tried to help their loved ones, and I have overheard well-intentioned colleagues talk about family members in ways that lacked sensitivity.

This article is based on research for my master’s degree in social work (2012).¹ I am honoured to share what I learned then and how I practise now. In preparing this article, I was excited to discover how much has changed since 2012, and how much hope there is now for families and their loved ones.²

In 2016, a coroner’s inquest reviewed a cluster of suicides by people who had recently been patients on the psychiatry unit of Abbotsford Regional Hospital, and revealed compelling issues related to family involvement and information-sharing. Information about the patients’ suicidality had been withheld from family members who might have been able to advocate for them, because the patients had expressly denied the health care team permission to disclose the information. In fact, the team could still have done so, despite the patients’ wishes.

These possibly preventable deaths are not the first of their kind; they illustrate that legislation on privacy and information-sharing with families has been widely misunderstood, with tragic results. The inquest found that all health practitioners, including doctors, need education on how to apply the existing legislation properly.³

Appendix 13 of the Guide to the Mental Health Act tells us that “obtaining consent from the client is generally preferred when releasing any personal information to a third party.” But it also states that “[p]ublic bodies may release necessary personal information to third parties without the consent of the client where disclosure is required for continuity of care or for compelling reasons if someone’s health or safety is at risk.” It also states that “[t]he health care provider should consider whether the family’s ‘need to know’ outweighs the client’s wishes. If the provider believes it is in the best interests of the client to disclose personal information to the family so they can provide care to the client, the health care provider may do so.”⁴

“Continuity of care” is an important concept for clinicians. In my work setting, it means that when I take on new clients, I access their mental health records so that I can learn about the presentation and history of their mental illness, including any safety risks. This prepares me for the responsibility of becoming their social worker or case manager.

The Guide to the Mental Health Act extends the concept of “continuity of care” to include family members and friends who are direct caregivers—even if their ill loved one does not reside with them. Family members who care for a loved one after a mental health crisis often feel terrified, especially at the beginning. This anxiety increases if they are told that information related to the care of their loved one is confidential. Family members may not even know the diagnosis, the medications, or what to do if things get worse. In addition, the emotional distress of family members can be entirely overlooked by the health care team.

I consider the family to be my client, too, so I support them when I can. If I need information to do my job, then so do they.

A few ideas for family members and close friends

It is helpful to understand that clinicians may struggle during communications with family members for several reasons:

• They may genuinely want to share basic information but fear accidentally disclosing too much

• They highly value the relationship they have with the family’s loved one and fear that sharing information “behind the client’s back” might ruin that relationship

• They interpret that the family wants to know too much

• They have heard negative things about the family (it can be hard for clinicians not to believe the client when they hear only the client’s perspective)

• The client is adamant that the family should not be involved

Recently, I was communicating with a family member without my client’s knowledge because it was necessary for my client’s care that I do so. It helped my discomfort when the family member said, “I don’t want to interfere with your relationship with my son because I know that relationship is important.”

It is also helpful when a family member says, “Don’t worry, I’m not asking for a lot of detail about my loved one because that’s private between you and her. I just need to know what to do when I’m concerned about her.”

Explanations of your involvement can make a difference, too: “When my son gets sick, he never wants professionals to share information with me. So I can see that it would be hard for you. When he’s well, we have a pretty good rapport. Even when he is unwell, he still relies on me to bring him food, drive him places, and so on.”

A clinician can even be told, “I know working with a client and the family is a balancing act. All I want to do is share some important things I’ve noticed lately because when she’s unwell she can be very secretive about it. Can I share why I’m worried?” Know your rights: clinicians must listen to your concerns.

If you see worrisome changes in your loved one, write them down in detail. Your observations can be vital in helping the doctor make care decisions.^3,4 Some family members provide letters to clinicians so that they know the letter has been read and will be kept in the chart.

If you aren’t feeling heard, don’t give up. Ask to talk to the hospital social worker, or the manager of the mental health service or facility. Ask about a family involvement program. If you and your loved one are just entering the mental health system, or if you want to talk about mental health concerns, contact the BC Schizophrenia Society in your area. The society helps all families of people with mental illness, not just the families of people with schizophrenia. In addition to providing one-to-one support, support groups, online support, advocacy and opportunities for respite, the society offers the 10-week Strengthening Families Together course, a national education program for family members and friends of people with serious mental illness.

A few thoughts for clinicians

Some terminology commonly used to describe family relationships—such as “over-involved,” “enabling,” “enmeshed,” “co-dependent” and “toxic”—does not belong in our professional vocabulary. These words stem from out-of-date theories that blame families; they do not help us to be better practitioners.

Perhaps you might try to imagine your own child, parent or partner becoming mentally ill or addicted. How far would you go to help your loved one? Which terms or approaches would you want the health care provider to use? A mother once told me that she knew she was enabling her adult child but she didn’t know how to be different. I said, “I don’t like the word ‘enabling’; you are a loving mother in a very difficult situation. But it’s true that sometimes our style of helping can hinder instead. Would you like to learn about other ways of being that could help your son?”

If I’m feeling pressured or unsure when I am talking to a family member, I take a break. If I need to, I check in with my coordinator. Sometimes just taking a moment of quiet will clear my head and help me to re-centre myself. Finally, I must remember that it is my professional responsibility to accept—and even seek—collateral information from families.

Making connections

I have deep gratitude for the family members who help keep my clients safe, taking care of them in countless ways. I feel better knowing my clients are supported by their families and friends—a recovery-oriented approach. 

The increasing inclusion of families in our mental health system will positively affect outcomes for people with mental illness and for those who love them. Yet policies and protocols alone will not necessarily create meaningful change—change in our values, beliefs and attitudes will. Everywhere I have practised, I have witnessed colleagues display incredible dedication to their clients. This tells me that if families have more opportunities to share their compelling stories, clinicians may find the stories influential in their own work. The more we can listen with our heads and our hearts, connecting the dots between family and clinician experiences, the more we will be able to embrace this challenging yet rewarding part of our practice.