Mental Health Privacy Policies Leave Families In The Dark

By Marvin Ross

Originally published in the Huffington Post November 26, 2015

One of the biggest complaints that families of the mentally ill have is the failure of the health system to provide them with information. Families provide ongoing care, support and housing, and yet the privacy legislation in most jurisdictions in both Canada and the U.S. prohibit staff from talking to them.

However, a newly published paper out of Western University in London, Ontario argues that despite that legislation, “clinicians have a duty to their patients’ relatives, and that clinicians regularly fail to take available practical and legal steps to ensure that families receive the information they need.”

The paper written by Dr. Richard O’Reilly, a professor of psychiatry, Dr. John Gray, an adjunct professor of psychiatry along with J. Jung, a student in the Faculty of Science appeared in the Journal of Ethics in Mental Health, November 20.

The problem, according to the authors, is that because of the lack of availability of suitable supportive housing and psychiatric hospital beds, most seriously mentally ill people live with their families. Those families wind up taking on both therapeutic and supportive functions for their seriously ill relatives. Given this role and the fact that research has shown that involving families helps to improve treatment outcomes, it would be expected that the mental health system would make efforts to support those families — but they rarely do.

Families constantly complain about this failure to keep them informed or to consult with them. In the U.S., there are calls to reform the privacy legislation and that is one of the key recommendations of the Murphy Bill before Congress. The Mental Health Commission of Canada made those recommendations in its Report on Caregivers but they have no authority (Recommendation 7). One of the key recommendations of theOntario 2008 Select Committee Report that Ontario continually ignores is to revise the privacy legisltation.

Unfortunately, clinicians do not always understand the privacy legislation which varies by jurisdiction and is complex. British Columbia requires hospitals to inform families when someone is involuntarily admitted or discharged from hospital. Other provinces, however, prohibit staff from telling family without the person’s consent and, in Ontario, a $50,000 fine for failure to comply with privacy legislation can be imposed on health care staff. As a result, staff err on the side of caution and become even more secretive.

Professionals may be even more reluctant because of the high value they place on individualism, the lingering views by some that families are a cause of illness, and that staff are more experienced offering individual based therapy as opposed to family therapy. And, the authors state, if all this is not bad enough, there are logistical barriers imposed by the system.

Length of stay in psychiatric units have become shorter while staff have become busier trying to manage all the patients passing though. This rapid turnover makes it very difficult for them to meet with families. Arranging family meetings is more difficult and less efficient than spending time on the ward with the individual patient. Payment is another concern since staff often do not make as much talking to families on the phone as they would interacting with the patient and hospitals do not provide staff with the flexibility to accommodate family involvement.

Even without changing the privacy legislation, the authors suggest a number of steps that health care providers can take to help families. They point out that clinicians often don’t even bother to ask their patients if they have permission to involve family.

If they do and the patient refuses, then they should take the time to explore the reasons for this refusal. Many patients don’t understand why it is important and do agree to allow their families information once it is explained to them. In some cases, there is some information they do not want shared (like sexual activity and/or drug use) and the staff can ensure that this information is not shared. Staff can also inform families of pertinent facts in meetings with the patient present. This often allays patient fears and is similar to the approach recommended in the UK and by the Mental Health Commission of Canada.

In those cases where no consent is given, the staff can give general information to the families and receive vital information from the family. The family can tell the doctors about new emerging symptoms, worsening of symptoms and medication side effects, all of which should be crucial information.

Until such time as political jurisdictions reform the privacy legislation, mental health staff can do far more to open the channels of communication with families for the betterment of their patients. It is time they do so.

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2 thoughts on “Mental Health Privacy Policies Leave Families In The Dark

  1. It is so unbelievably important to give as much information as possible to health care workers and especially a loved one’s psychiatrist to form the best care possible. My son would benefit, I’m sure, if I could meet with the psychiatrist on a regular basis so that he could gain information on my perspective. My son is one of those many people with schizophrenia who does not believe he has the illness..he truly believes all his ongoing delusional thinking is very real and normal. It’s extremely socially and emotionally debilitating for him, to say the least. I feel very unsupported by his doctor. I can give information in a crisis to nurses who may or may not relay the information to the doctor but ongoing support may really help the doctor understand my son. His medication dose or type may depend on this information…Please tell me how I can help as an individual to change legislation. We have to be able to help our loved ones who don’t even realize how much help they need.

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  2. Tim Murphy’s legislation Helping the Families Act 2646 is a critical legislation that addresses this issue. However in the USA no individual physician has ever been prosecuted for a HIPAA violation. The reality is that as long as the treating health care provider acts in good faith, and in the best interest of the individual with severe persistent mental illness they can communicate with the family. Regardless they can always hear what the family has to say. Anosognosia occurs in over 50% of people with psychotic illnesses so it is often critical to involve the family if you are really going to provide any worthwhile care at all.

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