(A slightly abridged version of this article appeared in Visions magazine, Vol. 2, No. 7, fall 2005.  Marguerite Hardin, in addition to her work as North Shore Schizophrenia Society support coordinator and past president, sits on the Family Advisory Committee for Vancouver Mental Health Services.  Working with Project Lead Otto Lim, the committee is actively promoting the acceptance of family involvement in care across all levels of the mental health system.)

For many years now, families have been making the case that they need to be involved in the care of their loved ones suffering from serious mental illness.  They point out that they know the real person behind the illness, and so have a unique advantage in being able to distinguish behaviour generated by the illness from that of the real person.  They can spot the person they care about emerging from the cumbersome mantle of psychosis, and they can pick up the subtle shifts in thought and behaviour that signal an impending relapse.  If that information were heeded and acted upon by professionals involved in the care of their relatives, they say, much turmoil and grief, sometimes downright tragedy, could for the most part be avoided.  If suicide is seen as one of the worst possible outcomes in psychotic illness, then family involvement in care constitutes a large positive step in the direction of suicide prevention.

What we are talking about here is not whether families care about their relatives - almost all of them undoubtedly do.  What families know they need, and believe their relatives could greatly benefit from, is recognition of their unique role as caregivers and the contribution they can make.

Most families are eager to learn all they can, from many sources, about the illness that, in many cases, hit their family like a thunderbolt. Self-help groups, where families get together to share their experiences, their grief and joy, and to support and learn from each other, have been a boon for many.  Gaining a measure of understanding and acceptance of the illness, and regaining a sense of balance for oneself, is important for any family member.  In the end, though, this is not enough. Having to stay on the periphery of the treatment process - not being allowed to ask questions or even contribute observations, particularly when they can see that their ill family member is not doing well and they may have a very good idea of what the problem is - has been an exercise in anguish and frustration for many families.  Worst of all, they may have to witness the decline of their loved one yet again into a state of exacerbated psychosis, sometimes with grievous incidents along the way, before they can find the help they need.

The appropriate exchange of information between caregivers is crucial to the provision of the highest level of care when dealing with any serious medical condition.  Realistically, families need to be part of the mental health care team.  They need peer status as caregivers if their relatives are to receive maximum benefit.

The suicide last spring of Stephanie James, a young UBC student from Portland, Oregon, underscored the kind of tragedy that can happen when families are cut off.  The affair caused something of a furore when her mother, grieving and aggrieved, spoke to a Vancouver Sun reporter. Her complaint? That although the university administration knew that Stephanie had already been hospitalized after attempting suicide earlier in the year, she, her mother, was not informed.  The necessary steps to ensure that Stephanie received professional follow up and monitoring were not put in place, but were left to her to pursue on her own.  Stephanie was only 18 when she died, alone in her room in the dorm.  

Subsequent coverage had the university protesting that they could not have told Mrs. James about the suicide attempt - that it was their legal and ethical duty to protect Stephanie's privacy. This was simply not the case, as an existing protocol on the issue made clear.  A following article in the Sun confirmed this.  It quoted the Privacy Commissioner firmly stating that, yes, the university could have informed the mother in this case.  Mrs. James declared that she "would have been up there in a minute" if she had known about the earlier attempt, and would have seen that her daughter got adequate treatment.  An article by Richard Dolman, who lost his own schizophrenic son to suicide, had a headline that neatly summarized the majority opinion: "Stephanie's life more important than privacy."

The Stephanie James case highlighted two salient points that many families have noted in analogous situations:  

1. The neglect or refusal of many professionals in the mental health field to communicate with families about their relatives' care is not only brutal, offending some of our most basic human instincts, it is also hugely counterproductive, and can lead to ultimate tragedy. Some major attitude changes are needed.

2. Those in authority who refuse to act as families think they should often insist that what they do or fail to do is correct, and legally necessary.  Yet those who are familiar with the laws referred to know that the people who claim to be bound by the law frequently do not, in fact, know what the law says. Education is clearly needed here. 

Many psychiatrists, nurses and therapists do share pertinent information with families and take into account their observations and concerns.  Clinical best practices calls for such family involvement; there is a growing body of literature documenting its benefits.  Too many of our professionals, however, still keep families on the outside.  There's a lot of work on this yet to be done.

Useful resources
• Family involvement  A discussion of the importance of family involvement as part of the treatment team, on this website, with links in turn to other documents.
•  Information sharing  A related page, including a link to “Releasing Personal Health Information to Third Parties,” the protocol from the Ministry of Health explaining how privacy legislation does allow for sharing of health information with families in the case of the mentally ill.
•  The Advocacy Bulletin  Published five times a year, covering events and issues that impact the mentally ill and their families.

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