Category Archives: Privacy Laws

When the Mental Health System Refuses to Listen

By  Maria Lorenzoni With Marvin Ross

Much of my writing on mental illness and the flawed system that we have to endure deals with privacy and the absurdity of keeping family and mostly parents in the dark about their loved ones diagnosis, treatment and progress. Maria Lorenzoni recently  gave this  edited presentation this past August to the Service Coordination Council on Mental Health and Addictions of the Central Ontario Local Health Integration Network (LHIN). The LHINs co-ordinate services in geographic areas.

She describes her families experiences with the secrecy of the treating officials and the impact that had on her family. Here is what she had to say:

Every serious sickness is stressful for family members, but caregivers of people with severe mental illness face challenges that are unique in some ways. Imagine for a moment that someone you love has been stricken with a devastating stroke and is in the hospital and can’t communicate, at least for the moment. Now imagine the doctors treating him or her and not giving you details of the diagnosis, prognosis, the exact information in their reports, or the treatment plan. Or just leaving you out of the picture completely. And then imagine the patient slowly recovering, but still not cognitively able to function properly, and perhaps unhappy that they are in hospital, and then being visited by a patient advocate to be informed that he or she doesn’t have to stay in hospital if they don’t want to.

You would argue that this is absurd.

According to a statement from the College of Physicians and Surgeons of Ontario, physicians can share information with others involved within the patient’s circle of care without asking for the patient’s consent if the doctor has no reason to assume that the patient would object.

Sadly, this does not apply to mental health!

In my case, it was only after three hospitalizations that I was able to press the family doctor to give me the diagnosis of my loved one. We finally got our son  into the Centre for Addiction and Mental Health and we were desperately trying to find the right meds and treatment plan. He doesn’t have insight into his illness, he doesn’t think he needs meds, so it took some hard work to get him to cooperate. And then, this vulnerable person that is in serious need of care is visited by advocates who tell him he doesn’t have to stay there.

Then what?

The onus is entirely on the family to persuade the person to stay in treatment. As a family member, you try to cooperate as best you can, BUT, you are not allowed to have any private discussions with the doctor unless the patient is in the room. Being spontaneous and giving some helpful comments is tricky when the person is right there. The doctors, therefore, make all their decisions based on communication with a patient who’s confused and will not share much because they don’t think they are sick.

He finally went to a Home for Special Care and was put under a team.  While we acknowledge the good work they did, there were a lot of misunderstandings and frustration due to a lack of communication.  No one is perfect, and families need to listen to constructive comments without being made to feel that they are just part of the problem.  In the time that he was there, we had three short meetings with the team , there were serious problems with reactions to meds, but we were not given input.  In fact, when I asked a question, I was told quite clearly…”look, you be the mother and we’ll be the treatment team.”  My family was shunned and made to feel that we were not cooperating, and in fact, we were discouraged from even visiting.

SO, POINT NUMBER ONE – family caregivers need to be able to give and receive information (unless there is a very clear reason not to), be given a diagnosis and prognosis, and consulted on a plan of action for the future.

SECONDLY, we definitely need a media campaign to focus on the obstacles faced by people with “hard core” mental illness. Sadly, the current campaign to destigmatize mentally ill is aimed at the people who have a more socially acceptable emotional problem like depression and who are in a position to ask for help. People are under the mistaken notion that everyone with a mental illness has easy access to good, consistent, hands on care. I’ve spoken to some in the health field who have asked me why my loved one isn’t in one of those residences that provide “professional rehabilitation”, and another health professional who recommended that I access a support group that helps caregivers with the tremendous grieving process that comes with caring for someone with serious mentally ill. They didn’t realize that there are no residences with professional staff, and while some support groups are good, none of them have a counsellor to help caregivers, and actually some of them are nothing more than lectures with information that you’ve read from a book a dozen times.

SO, POINT NUMBER TWO – we need to promote public awareness that people with illnesses like schizophrenia exist – that they are from every walk of life, they are people just like everybody else, they are not the dangerous individuals you imagine them to be and CONTRARY to popular opinion, they do not have easy access to services. Caregivers also need counseling as well to be able to deal with living with their loved ones on a day to day basis

NOW, THE THIRD POINT, and the most difficult, is the problem of housing. There are far too few residences and the ones that are available are overcrowded. A few are decent, others have low standards, and the people who live there are not in a position to stand up for themselves.

People with very serious mentally ill are most in need of supportive housing, yet they are the least likely to obtain it. They DO NOT GET MEDIA ATTENTION, AND DO NOT HAVE A VOICE. There is no easy solution, but with SOME BRAINSTORMING AND SOME PROPER REDIRECTING OF FUNDS, some pilot projects can begin to appear. Families would be delighted to help in any way they could, and IN FACT, THEY NEED TO BE PART OF THE PROCESS, so that a proper support system could be implemented.

I know so well that parents of adult children with serious mental illness are very concerned about the future of their kids and want to see them living in a place where there is hope, dignity and support.

If the public becomes more aware, and less afraid of mental illness, if there is more communication with families on the part of health professionals, more guidance and support for families and the hope for proper supportive housing, the future can be much more promising.


Privacy Laws Should Not Exclude Families

By Dr David Laing Dawson

“Frustration over mental health disclosure doesn’t trump privacy protection: experts” (CBC News, Halifax)

This story makes specific reference to a 21 year old who committed suicide after 3 trips to the University Health Services, only one of which her mother knew about.

Years ago, as a young psychiatrist with but one and then two very young children of my own, I am sure I “respected” the privacy of many of the teens I saw and treated. Usually our clinic staff saw them alone, and then invited the parent(s) in, and didn’t disclose anything the teen adamantly refused to share. I can’t remember the official age of consent at the time, but some years later it became 12. I remember this because a social agency asked me to see a 12 year old caught stealing. I said I would like to see his mother with him. They said, “We will have to ask his permission.” My mouth fell open. “What? You need to get permission from a 12 year old before you talk with his parents? That is nuts.”

Before that moment my thinking had evolved. Not least because I realized how outraged I would be if a doctor, counselor, psychiatrist did not tell me about important, serious things my daughter might disclose to her.

Working in a clinic that saw many teens, and consulting to local High Schools, I decided I could treat an 18 year old as an adult, and a 14 year old as a child. The child would always be seen with his or her parents. In between 14 and 18 the child had to prove he or she was “adult”, in order to be seen alone. And by adult I mean have at least a rudimentary sense of personal responsibility, at least a rudimentary sense of the consequences of certain behaviors, at least a rudimentary sense of not being the center of the universe, at least a lessening of that knee jerk oppositional response to parents and any other authority, and at least a small decay in that adolescent sense of omnipotence.

Of course, within the first half hour of any interview most teens demonstrate that they are not adult in the above sense and then I would say, “I will have to talk with your parents.”

They never fought me very hard on that because, really, they need and want their parents to know about their troubles. They want their parents to parent them. And that includes setting boundaries (protecting them) as well as loving and supporting them.

There was a time when I would ask a teenager something privately, working on the assumption that a.) In the presence of his parents he would not reveal the truth, and b.) His parents may not be ready to hear the answer. Sexual activity and orientation for example.

But my thinking evolved again. I concluded that, instead, a.) There is nothing I as counselor, physician, psychiatrist should know about a teen that his or her parents should not know and b.) Most family secrets are known or suspected by other family members already, and c.) If the parents have a bad, primitive, nasty reaction to the news, it would be better to have it in my presence.

So now I always see a child or teenager with his or her parent(s) and I ask whatever questions I need to ask. And I watch and I listen.

Occasionally I am talked into seeing a teen alone by a parent who insists I do so, and occasionally because the parent did not show up. It is always a futile exercise. It is not far off the metaphor of the blind man describing an elephant. There is one exception to this of course. Once in a while we run into a teenager who is more mature than either of her parents. In social work jargon, this is the ‘parentified’ teenager looking after the welfare and feelings of her parent(s).

I am talking about teenagers here, but it is not age that defines them. It is social, psychological, financial, emotional dependence on others. Their welfare depends on others.

But none of us is an island. Our health, our mental health, our welfare depends on others. So my policy of seeing teens with parent(s) has expanded to anyone who is financially, emotionally dependent on another. That includes college students, young “adults”.

I am seeing them because they are in trouble. If the trouble has to do with drugs, alcohol, relationships, money, failing – parents are in a better position to help than I am, or, at least, their support is necessary. If the young person suffers from a mental illness, then I may be able to treat that illness with or without the parents, but I want them informed and helping and supporting.

Health professionals put themselves in a bind when they see a young troubled person alone and he or she specifically says, “I don’t want my parents to know.”

To prevent that bind, privacy trumping parental concern and good care, we need merely see them together. The patient and his or her family. Together. In the same room at the same time.

So include them right from the beginning. Even bad parents, those who do all the wrong things (well-intentioned or not) should be included. For the child spends far more time with, is more dependent on, is more influenced by or reacting to, his parents than myself. Include them. Teach them if you can. Even if the teen objects before entering the interview room, persist, because he will change his mind very quickly once he understands he will be heard as well.

Don’t give up on parents, family, until you see with your own eyes that they are hopeless, unhelpful, or destructive. When that is the case, unfortunately, we must counsel, treat, care for, look after someone who is not yet an adult as if he or she is a responsible, self-sufficient adult.