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.