More on What Families Need and Don’t Get

By Marvin Ross

This original  blog post on what families need and don’t get seemed to have touched a nerve with many as it was shared far and wide and received a number of interesting comments. I thought I would reply to some of them.

The first comment stated that family involvement that I wrote about bears no resemblance in the US because of the privacy legislation under HIPPA. That very same situation exists in Canada as each province has its own privacy legislation. Doctors on both sides of the border hide behind that as an excuse to avoid dealing with families but, if they do, they should be challenged. Any good psychiatrist will ask if the family can be involved but the problem arises if the patient gives a blanket no.

The doctor should not leave it as no and the family should insist that further questions be asked of the patient. Quite often, there are issues like drug use or sexual activity that the patient does not want revealed but is willing to allow other information such as diagnosis or treatment options to be revealed. A doctor who refuses to include the family some way even when the patient says no is, if I may, an idiot and it should be challenged by the family.

We only went through this once and the reason for the no  was uncharacteristic. The patient feared that if the family had information, the government would find out and steal all his money. Had the doctor asked why, he would have realized that the paranoia was extreme. The damage caused by this was rectified and the doctor was reprimanded by the hospital.

A retired psychiatric nurse pointed out that nurses today are inundated with paper work and reports that take time away from their ability to interact with patients. Bureaucracies are in the cover your ass mode and require that all this be done in order to defend themselves from angry family when something goes wrong. Nurses spend too much time sitting in front of computer screens entering data or, as I’ve often seen, wandering the halls with a computer pad recording patient activity.

They do their best to interact with their patients but the system is designed against that. As an older retired psych nurse trained in the UK pointed out, nurses in the 1960’s engaged with patients far more than they do now. Talking to patients, having coffee with them and walking with them can have a beneficial effect but there is just not enough time for them to do that. Hospitals really need to reduce the cover your ass paper work and get back to basics.

Another comment pointed out the propaganda that many health professionals spout such as the mentally ill being the victims of violence rather than being violent themselves. That is true for those who are stabilized and not actively psychotic but it is not true for those who are psychotic. Families want to know the truth and deserve to be told the truth and not lied to as if they were little children. Mental health staff need to be more honest with families and so families should question and press the staff on what they are told. Demand evidence and sources from what they tell you.

Finally, it was suggested that the family meeting was deficient because there were no patients involved as required by the Strategy for Patient-Oriented Research (SPOR) policy of the Canadian government. That policy pertains to identifying “gaps in treatment and care, provide the best evidence to fill those gaps and conduct new research when existing knowledge is incomplete”. This meeting had nothing to do with research but I do agree that people who are “recovered” are a good source for families to see and hear.

Families of newly diagnosed are raw and hurting with little idea of what the future holds for them or for their relative. Being able to see someone who has done well with treatment can give them hope and allay their fears. The family education program that I referred to in the original blog did have one session with someone who was doing well. The most impressive example we saw was that of a young mother who was hospitalized. The woman had schizophrenia and was receiving ECT in hospital when we met her. Some time later, I was in line getting coffee in the hospital coffee shop when this attractive and well dressed woman said hello to me. She realized that I did not recognize her and introduced herself as the woman from the inpatient unit who was undergoing ECT. “This is the post ECT patient you met before” she explained.

At that same time, one of the patients on the unit who was in and out of the seclusion room was a professor emeritus at the medical school the hospital was affiliated with. He would send the nurses to his office to pick up his mail as the faculty was in the same building.

So yes, families do need to see some successful people and to realize that mental illness is an equal opportunity disease. It does not discriminate based on gender, income, education or race/ethnicity.

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5 thoughts on “More on What Families Need and Don’t Get

  1. Thank you for following up on this. Perhaps the most telling day for me was about 6 years ago when I helped a friend into hospital. The person was clearly psychotic, but able to cover up symptoms. Anosgnsia was a big problem and clear to observe. This was her first admission. Hence, it was pretty wearing to help the person into what I thought was a safe haven. The Psych Ward of the teaching hospital was newly opened and fully staffed . Very elegant etc lots of glass around the nursing staff.

    The nurses let the visitors into the ward I visited the young friend the day after her admission. Quite an elaborate procedure to get in to ward …an outer foyer with monitors ….deposit bags etc . Cameras etc After the short visit the friend accompanied me to the door and we had to enlist a nurse to let me out . She asked me “which room are you in ?” ????? !!! The patient told her that I was a visitor and that she was the patient. The nurse was then embarrassed. I quipped it’s alright i do not stigmatize !

    ALL nurses on the ward should know who is in their care whether they are assigned to that patient or not. I was very shocked. And this illustrates a big problem. Had I been a patient on the ward i would deserve to be cared for and protected as such. It was very telling. Communication between staff, despite all the computer logging, does not seem to be doing the job of simple communications and observations. Where is responsibility? Observation is key to doing a professional job.

    Liked by 1 person

  2. Regarding the mis-use of privacy legislation, this is what happened in my family. I phoned the case management agency trying locate my loved one who I believed to be in crisis. I had thought that they may know of his whereabouts. I received no call back despite the fact that the voicemail I left reflected the panic in my voice. I brought this matter up first with the executive director who said that “there had been a directive from the client that no conversations were to take part unless he was present”. This was a crisis!! At least they could have called me to say why they could not talk to me. I then brought this matter up with the agency’s overall administration in which the top Administrator did not show, and was informed by his next in command that “we hear every week that people sue over privacy transgressions”. I do not believe this to be true. I am sure people sue but not that frequently. I then asked the executive director that I had first complained to and who was at this meeting “if this were your daughter, how would you, as a mother, feel?” My question was met with stony silence. I felt that I was talking to a Nazi. I later brought this issue up some years later with Ann Cavoukian the former Privacy Commissioner who was very sympathetic and said that I could have registered a complaint with the Privacy Commission.

    Family Caregivers are known to complain about having PTSD. This is veryunderstandable given the profound challenges of the serious mental illness and the inadequacies of the system. It is also undertandable given the lack of humanity which I experienced in trying to have my complaint addressed. Unfortunately, there is a lot of “lack of humanity” in the mental health system regarding families. Harriet Lefley has written a book which mentions the mis use of privacy legislation. This mis use is still happening to this day. Her book was written in 1996 and is from the States but when I read it, it was so affirming because the treatment of families which she writes about mirrored the experiences which I have endured. Here is the info about her book if you care to read it.

    https://www.sagepub.com/hi/cab/family-caregiving-in-mental-illness/book5435

    Liked by 1 person

    1. Excellent book. I also recommend it. I went with a mother to ask an Emergency physician as to why he had released a patient who had been apprehended under A Justice of the Peace Order. It was an unbelievable situation. Anyone knows that it requires a lot of courage to take this initiative i.e get a JP order.

      . The police brought her in and the family stayed out of the way because the patient would have rebelled. The next thing we saw was the police taking her away.She was in emergency for a very short time. Her schizophrenia had been present for many many years . She had track marks from recently injected street drugs and had many other problems because of her anosgnosia. She was off her meds once again . I went up to Psychiatry and complained to the Head, who advised me to challenge the ER doctor. i did, along with the woman’s mother, who asked the doctor “what if it were your daughter. He replied that would be too bad.

      The only good news here was that I believe we did effect the MD’s attitude for future patients. So fighting back is worth it. This was a couple of decades or almost ago. That patient is now reasonably stable and on meds all the time. She is a very good responder.

      Liked by 1 person

  3. Thanks for this Marvin. Brings to mind a couple further comments.

    The policy at the Colorado State hospital here in Pueblo is to tell family members nothing. I’ve become good friends with a forensic psychiatrist who for some years was the managing director of the hospital. He stepped down to spend more time with patients and less on administration. He said that if he receives a call from a parent asking if their family member is there he says that he tells them he can’t divulge that information but don’t hang up. Then he asks the patient if he would like to talk to his parent. Often they do and he hasn’t gotten in trouble with the state’s lawyers yet.

    When families come to our NAMI group complaining that the person treating their child won’t talk to them we tell them that most won’t but most will listen to you if you tell them what you have observed behavior wise and that can be valuable.

    Liked by 1 person

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