Category Archives: Family

Families, Privacy and Hospital Suicides

By Marvin Ross

One of the constant themes in my writing of mental illness is the need to involve the family. And so, when I read a lengthy account of the suicide of a young 20 year old girl that appeared in my local paper, what jumped out at me was that she had requested that her family not be involved with her illness or treatment. She wanted to spare the family grief and, it seems that the doctors went along with her.

The young girl had a number of suicide attempts while in hospital and the family was told none of it. Dr Peter Cook, one of the psychiatrists, told the newspaper that “We were obligated to protect the privacy of Nicole. She was an adult.” The other shrink said that confidentiality between patient and doctor is “sacrosanct.” Nicole did not want to share her medical information with her family.

Sadly, this young lady is not the only suicide in the past little while at this hospital. There have been 9 – 3 in hospital, 2 of patients on leave and 4 outpatients. To its credit, the hospital did commission an external review to see if things could be improved. One of the recommendations was for “closer collaboration with families.”

Now, maybe the outcome would not have been different if the family was involved but we don’t know that. And, the privacy legislation is pretty confining but there are ways to get around them if the medical staff really care. The hospital recently established a family resource centre as the result of a donation from a philanthropist friend of mine. It was difficult to get them to accept the gift but they did and it is being used and it is being well publicized to families.

At the time we were negotiating for a family resource centre at the hospital, I wrote an op ed for the local paper on the need that families have for inclusion with staff when their loved ones are being treated. Aside from pointing out the anger that families have towards being ignored, I mentioned the very sensible guidelines that were produced by the Mental Health Commission of Canada for family caregiver inclusion. And I mentioned this:

“Very few, if any, mental health facilities have adopted these recommendations despite the fact that about 70 per cent of those with serious mental illness live with their families according to the Mood Disorders study. And family caregivers spend 27 hours a week caring for their ill relative according to the EUFAMI survey. That is five hours longer than the average in other countries surveyed by EUFAMI.”

I don’t know if St Joes ever did adopt these recommendations and I do know that the Privacy Act is very restrictive. But, with a little effort, it can be sidestepped as I pointed out in a Huffington Post Blog.

I was basing what I had to say on an excellent paper on the topic that had recently been published 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 Health Science at Western University.

I said this in my post:

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.

I was pleasantly surprised that at a meeting with St Joes staff just after this was published, one of them told me that this blog was being read by staff and was being circulated within the hospital.

It seems that not sufficient attention may have been paid to that. I hope that more attention is paid to involving families so that these tragic events can be minimized going forward.

A Christmas Blog For Our Readers

By Dr David Laing Dawson

The morning after the American presidential election my son sent me the following message:

“I awoke this morning to a strange new smell of brimstone and a rising temperature.”

That same morning a message from my daughter arrived from Australia: “What the f**k just happened?”

And then she sent me this message after my recent blog on Donald Trump and the possible demise of democracy:

“My dearest father. I appreciate your concern. However, what is done is done and a lone wolf in Canada cannot change the American election results. It is up to the American public to do what is right. Perhaps, as with Reagan many years ago, this new generation of Americans needs Trump to remind them what they had was not so bad and to suck it up and get on with it. We cannot change what has happened. We cannot control what is beyond our control. We can only control our response to it.”

I will have a discussion with her about the “lone wolf” metaphor upon her Christmas visit from Australia. That is, after I give her, her husband and her two children a hug.

Her salutation “My dearest father” must be taken with a grain of salt. Hidden in that phrase may be echoes of Charlotte Bronte, but more importantly, the glee of a daughter in the position of giving wise advice to her “know-it-all” father.

Through this season we will all spend much time together, laughing, talking, arguing, eating, drinking, walking, playing cards. The Australian grandchildren will be introduced to a Canadian winter. I will be reminded poignantly, repeatedly, of what is important in life. I am sure the Ghost of Christmas past will visit occasionally, but we will ignore the ghost of Christmas yet to come.

We will also try to ignore the unfolding American drama. I hope my obsession with Donald Trump will go into remission, at least through Christmas. Though it may require CBT, mindfulness, prayer, alcohol, and the odd rebuke from my daughter.

One of the better contributions made by the major religions of this world is the setting aside of a few days, a few weeks of each year to focus on love, giving, forgiveness, kindness, and hope.

The messages from my son and daughter were about our current anxiety, our shared fear of what might happen over the next four years. But for the moment, for this holiday season, I will take great pleasure and comfort from the fact of those messages. My children are smart, healthy, engaged, and they talk to me.

A fine Christmas present. We will be back in 2017.

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.

The Sisters of Perpetual Determination

By Katherine Flannery Dering From her Blog Word From the Trenches

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Sunday after Sunday, year after year, our Mother drove the one hour ride from our home in White Plains to the Wingdale Psychiatric facility to visit my brother Paul and to prod the staff to take good care of him. Paul, the eighth child of our family of ten children, suffered his first psychotic break at 16 and for the next thirty two years, despite all treatment attempts, he never had more than a few moments of sanity. As our father sunk into a deeper and deeper depression, unwilling to face what had happened to his young pride and joy, Mother just gritted her teeth and did what had to be done. Dad died. Paul got sicker. But sun or snow, rainy or blustery day, Mother drove the two hour round trip and gave Paul his one day per week of almost normalcy. Picnics for sunny summer days, diner or pizza shop on bad days, an occasional excursion to a pool or bowling alley. Mother could recite every gas station, burger joint, antique shop, hardware store, exit, entrance, diner, motel, bank, putting range or ski equipment shop along the 50 mile route.

When Paul was 34, Mother died, very suddenly, of a burst aortic aneurism, and the ten of us “kids” were in shock. We stumbled through funeral preparations, copying what Mother had done for Dad. She had sung in the church choir for years, and her pals did a great job singing at her funeral mass. During the priest’s homily, he spoke repeatedly about what a determined mother she was in not only raising her ten children but also for ensuring that her mentally ill son was properly cared for. After Mother’s burial, the choir and at least 80 other friends and family members gathered at Mother’s house for a funeral luncheon.

At some point that afternoon, four or five of my sisters and I went for a walk around her neighborhood to escape the crowd of mourners who, fueled in part by a large quantity of bourbon and wine, had progressed from munching on catered chicken parmesan and crudités to singing show tunes around her baby grand piano. It was a beautiful, sunny fall day.  A short way down the block, realtors were holding an open house. Since we would have to sell Mother’s house, we decided to check it out. Recalling how the priest at Mother’s Mass had gone on and on about what a determined woman she was, we signed in as a group of nuns looking for a new home and called ourselves the Sisters of Perpetual Determination. It became our family joke. The next year, after I’d settled Mother’s will and distributed everyone’s share, my siblings gave me a plaque inscribed “To the executrix extraordinaire, with thanks, from The Sisters of Perpetual Determination.”

As the months and years went by after Mother’s death, we siblings took up the mantle of trying to look after our brother.  However, this was the age of the deinstitutionalization movement, and despite the lack of a suitable half-way facility to care for him, we were unable to prevent his release from the psychiatric facility. Without constant supervision and tweaking of his medications, he went steadily downhill. His schizophrenia was severe and persistent. He was unable to make it through the maze of “freedoms” he was given, and he cycled in and out of hospitals and group homes. We had always hoped we could keep him safe until some new treatment was discovered that would bring him back to us. But poor diet, constant smoking and general aimlessness caught up with him. Despite our efforts, he died six years ago at the age of 48.  We miss him still.

Current laws, meant to protect people from unjust confinement, now condemn many people with serious mental illness to a shadow life of delusions, confusion, and homelessness, horrible group homes and/or early death. Despite promising advancement in early intervention and new cognitive treatments, many with schizophrenia never really recover.  The care of a family member in this age of almost no long term mental health care puts a tremendous burden on people trying to keep their loved ones off the streets and out of jail.  In consideration of all these caregivers do, my sisters and brothers and I have decided to share our sisterhood name with all the other families of people suffering with serious mental illness.

To the Mothers, Fathers, Sisters and Brothers of Perpetual Determination, we salute you.  We have pledged our support for legislation like HR2646 and vow to fight for improved care for our loved ones.

picture:  to r back row: Pat, Charlotte, Sheila, Paul, Ilene; front row: John, Katherine, Julia, Grace, Monica.

For more information on HR2646 and a letter you can copy and paste and send to your representatives go to www.shotinthehead.com and click on the advocacy page.

To learn more about schizophrenia and what is needed to improve our mental health system go to http://www.paulslegacyproject.org

To order my book, please go to Amazon.com

When Will All Mental Health Professionals Learn to Respect Families?

By Marvin Ross

Families of the mentally ill are the tireless workers who provide support and advocacy for their ill relatives at tremendous financial, emotional and physical costs. The families also are the ones who push for reforms from reluctant elected officials. It was families in the US who formed the National Alliance on Mental Illness (NAMI) to fight for their kids. In Canada, it was the late Bill Jeffries, a family member in Oakville, Ontario, who formed what was originally the Friends of Schizophrenics in Canada (now the Schizophrenia Society).

A group of family members in the US (partly tongue in cheek) call themselves the Sisters of Perpetual Determination to indicate their resolve.

Families fight for their ill relatives whatever the illness they suffer is – cancer, CP, autism, schizophrenia – and that is as it should be. But when it comes to mental illness, we are often not consulted and are shunned and talked down to by professionals. Just recently, a group of very dedicated families had to fight for months to have a representative on an Ontario Government Committee set up to evaluate mental health services before a family member was appointed.

But do not consider the Family Outreach and Support Program (FOR) in the same class as these aforementioned family advocacy groups. FOR which is funded in part by tax money is being integrated into the Canadian Mental Health Association Toronto Chapter. Despite the name FOR, from the writing of its founding executive director who stepped aside in 2015 but is still on staff, this group is not family friendly in my opinion.

Karyn Baker says that she is a mother of a child with mental illness but in her article entitled Families: A Help or Hindrance in Recovery she reveals what I consider to be disdain for families. I’m not sure if she still believes what she wrote as the article is no longer online but it was discussed by Susan Inman in a Huffington Post article and I do have a copy.

The article is a chapter in a book called Alternatives Beyond Psychiatry edited by a founding member of an organization called INTAR or the International Network Toward Alternatives and Recovery of which Ms Baker is or was a member (she lists her membership on her CV). The organization believes that emotional distress is often labelled as psychosis.

Here is what Ms Baker writes:

  • “traditionally many families have not been given the information or strategies for helping their families in the recovery process. As a result, families have tended to unwittingly be a hindrance in their relative’s recovery”
  • “There was little, if any, mention of recovery and no critical examination of the mental health system from a trauma-informed and anti-oppression perspective. These programs created like-minded thinking between families and mental health professionals, which further reinforced the limiting idea that mental illness is a disease and must be treated with medication or otherwise, recovery is not possible.”
  • “In North America, the alliance of mental health professionals and family organizations has entrenched the medical model of mental health distress and has led to an extreme over-reliance on psychiatric medications and coercive mental health legislation. A collateral damaging consequence has been the divisiveness between the psychiatric survivor organizations and family groups. Psychiatric survivors have been highly skeptical of family involvement in the recovery movement. Often survivors have felt both the controlling and paternalistic (and often traumatizing) experience of both their own families as well as those of large family advocacy organizations.”
  • The key messages that families report taking away from the course are that: recovery is possible even without any professional intervention (for many families this is the first time they have heard this message); hope is the cornerstone to recovery – it is almost impossible to recover without hope and the family’s role is to “hold the hope”; to avoid creating learned helplessness by being overly-involved; to support risk-taking and giving the relative the dignity and freedom to fail like any other human being; to let go of controlling relative’s choices – this is their recovery journey; to stop viewing everything from a problem orientation and start building on strengths; to view madness as a human experience; don’t use coercion or forced treatment; explore alternatives and use advanced directives.
  • Families also have reflected back on the importance of the group process in learning about recovery and their own behavior. Families want a place that does not perpetuate their guilt or shame about their own role in wounding their relative but helps them to acknowledge their role and behavior and help them to make change in a safe environment. Many families acknowledge that they started this journey as either uninformed or misinformed and that often their natural intuition as to how to be helpful was actually counter-productive. Families also become aware of their own internalized discrimination or mentalism about people with mental health issues. Families learn to use language that does not hurt or hinder recovery.”

None of this is evidence based nor is it family friendly unless families admit that they have been controlling and paternalistic towards their ill loved ones. Point two from her paper is still the raison d’etre of the agency as it is prominently displayed on their website. An excellent critique of the absurdity of their “trauma-informed and anti-oppression perspective” compared to the medical model was recently provided in an excellent article in Clinical Psychiatry News entitled Unmasking Trauma-Informed Care. It makes for good reading.

And my tax dollars go to programs like this when the money could be used to provide more psychiatric beds that are desperately needed.