Pencil Pushers and Bureaucrats Should Have No Say in Mental Illness Treatment Strategy -Part One

Marvin Ross

I don’t believe I have ever seen the CEO of an oncology facility suggest how doctors should treat those with cancer but the CEO of the Royal Ottawa Mental Health Centre just did in an op ed in the Ottawa Citizen. If the CEO was a psychiatrist I would not object but the author, Joanne Bezzubetz, has an MBA and a PhD in Applied Management and Decision Sciences from Walden University. She has a history of admin positions in mental health but no education in mental health treatment.

She begins by saying that “It is time to put clients (patients) at the centre of their own care, to let them make choices about their therapies, and to give them the resources they need to lead independent and happy lives.”

She is clearly an advocate for patient centred care whereby the health care system puts the needs of the patients first. No one can disagree with that but my question is why is that such a big deal. Without patients, health care personnel have no jobs so what did they do before someone came up with this concept? I hope the system always put the needs of the sick up there at or near the top and always provided them with the treatment and resources they needed to overcome their illnesses, pain and suffering.

None of that should be radical. Where I have a problem is to allow them to make their own choices about treatment. Imagine going to the doctor with an infection and the doctor asking what would you like to do? That doesn’t happen. What the doc does is to present the patient with possible solutions, the pros, the cons, the side effects and then decide on a course with the patient. The choices might be wait and see if it resolves on its own or start antibiotics now.

In oncology, the same process would take place and if the patient decides to not accept conventional treatment but wants to go to Tijuana for alternative therapy, I would expect the doctor to have a long talk with the patient and try to dissuade them. If the patient is adamant then there is not much the doc can do. The patient has the capacity to make that decision and does so.

Under common law, as Justice Robins of the Ontario Court of Appeal explained:

“The right to determine what shall, or shall not, be done with one’s own body, and to be free from non-consensual medical treatment, is a right deeply rooted in our common law. This right underlines the doctrine of informed consent. With very limited exceptions, every person’s body is considered inviolate, and, accordingly, every competent adult has the right to be free from unwanted medical treatment. The fact that serious risks or consequences may result from a refusal of medical treatment does not vitiate the right of medical self-determination. The doctrine of informed consent ensures the freedom of individuals to make choices about their medical care. It is the patient, not the physician, who ultimately must decide if treatment — any treatment — is to be administered.”

What Ms Bezzubetz is espousing is something that already exists and is well entrenched in the legal statutes and in case law. I did highlight With very limited exceptions because it is those exceptions that she may be talking about and those are serious mental illnesses and dementia. It is not unusual for these two groups to be unable to understand that they are ill and to be able to make rational decisions about their care. When it comes to dementia, we mostly understand this and allow a substitute decision maker to make those care decision.

Granny has advanced Alzheimer’s and does not know what day it is, how to make a cup of tea safely but refuses care that will keep her safe. With compassion and understanding, we guide her into the care she needs which may be into a long term care facility where she can be looked after. We do not allow her to wander the streets and to live in the park or at a street corner.

In contrast, a young person with untreated schizophrenia is allowed to refuse treatment because he or she insists there is nothing wrong with them. And the longer their condition is untreated the worse it gets. Their family cannot cope and they end up living on the street, getting in trouble with the law and ending up in jail or dead. Society does not care and seemingly those like Ms Bezzubetz feel that is fine because they were “at the centre of their own care” and were allowed to “make choices about their therapies”.

In Ontario and most other jurisdictions, if these individuals become dangerous to themselves or others, they can be incarcerated in psychiatric facilities. Unfortunately, in Ontario they can still decide upon their treatment which usually is to refuse treatment. As a result, we have patients locked up for years who are dangerous but refuse treatment and the chance to recover and be released. How sensible is that?

If Ms Bezzubetz had more knowledge about psychiatry she would be aware that close to half of all patients with schizophrenia and bipolar disorder do not realize they are ill which is why they refuse treatment. The term is anosognosia and it is not just denial of being ill but a symptom of being ill whereby you are not capable of understanding. The following video by Xavier Amador is a perfect example of this condition.

In addition to or as an extension of this characteristic, people with schizophrenia “experience the world differently. And many have a relatively unique set of cognitive impairments, or problems with their intellectual functioning.” Those with schizophrenia have poor memories, trouble shifting between tasks, making bad judgement calls and failing to predict consequences.

None of this bodes well for them to be able to make rational decisions about treatment or no treatment or the best treatment. At least, of course, in the acute early phase of their illness. In that circumstance, consultation should involve family or those who are closest to the patient and know them best. Once treated and stable, the ill person is capable to discuss refinements in treatment. Physicians should pay attention to potential side effects and be willing to change medications to other drugs or to rationally discuss the choice between oral versus injectable forms of drugs.

Those providing treatment have to have the knowledge and the compassion to treat their patients with the appropriate respect and to act in their best interests.

What I’ve written reflects the frustration of a family member experiencing a health system governed by what I consider the harmful ideas expressed by Ms. Bezzubetz. Part Two tomorrow reflect the experiences of a psychiatrist working within that system.

Guest Post People With Mental Illnesses are Not Culpable for Those Illnesses

Joseph M. Bowers

A blog I follow regularly is Mind You usually written by Marvin Ross or Dr. David Dawson. In a recent blog Marvin pointed out that society has more compassion for and better treatment of elderly people with Alzheimer’s or other forms of dementia than for people with schizophrenia. A person who commented on this blog believed that many people feel that somehow people with schizophrenia are culpable for their illnesses.

In a later blog Dr. Dawson speculated that this may be in some part because of mental illness and substance abuse being to such a degree lumped together. There is choice involved in substance abuse. There are many reasons why people become addicted to cigarettes’, alcohol, opiates and other addictive substances. Often it doesn’t feel like much choice is involved, but people can and sometimes do choose to get clean and stay clean. One can not choose to try mental illness or to recover from it. Some can with help learn how to keep symptoms at bay and deal with them effectively. Some can not improve much with any currently available method of treatment.

I think there are more reasons for many feeling little compassion for the severely mentally ill.

The thought of one’s brain seriously malfunctioning is very scary. Some assuage this fear by telling themselves that they are better than those with severe illnesses. They have more will power, stronger character. A coworker whose job was in jeopardy once told me that I had never experienced anything as bad as what he was going through. When I mentioned being institutionalized with severe mental illness, his comment was that he had never let something like that happen to him.

Many of these superior people will never experience a challenge as daunting as what many with severe mental illnesses deal with every day.

Then there is the belief among some that people get what they deserve in life. Good things happen to good people and vice versa. Wouldn’t that be nice! When going through more than twenty years of recurring psychotic episodes, I sometimes wondered if I was being punished for doing something just God awful in a previous life. I couldn’t think of anything I had done in this life to deserve what I was going through. Most of us I suspect have seen people get undeserved good or bad fortune.

I maintain that those of us with severe mental illnesses are not culpable and deserve as much compassion and care as the elderly with Alzheimer’s and other forms of dementia. Both conditions are tragic and undeserved.

New Years Resolution for 2022 (A scientific approach)

By Dr David Laing Dawson

Diet and Exercise

Recent scientific studies have demonstrated conclusively that my current diet along with a vague plan to become more active once the good weather arrives, is perfect. Not that scientists would ever use the word “perfect” but rather they use the word “optimal” which really means perfect.

Specifically one Nobel laureate has declared that my occasional over-indulgence in Buffalo style chicken wings is fine as long as it remains occasional. (The statisticians define occasional as more than “sometimes” but less than “often”.)

Similarly many large studies have shown that my current consumption of 3 cups of coffee per day is optimal. To make that better than optimal they suggest drinking both tea and coffee, though that suggestion is ridiculous because we all know you are either a tea drinker or a coffee drinker and cannot be both. Nutritional science does occasionally flounder on the shores of reality.

When it comes to consumption of alcohol, calculated as the average number of “drinks” per week, I do what everyone does when asked that question: I conduct a complex mathematical equation to determine an S number rounded down to account for heritage metabolism (mine being Scottish and possibly Venetian). This produces a range of 14 to 21 drinks per week, which the majority of drinking scientists agree is quite acceptable.

One important study that pleases me shows that moderate drinkers who stop drinking fare more poorly (dementia) than moderate drinkers who continue imbibing into their dotage.

I am already a proto-vegetarian and thus doing my bit for health, climate, and the happiness of cows and pigs. WHO scientists define proto-vegetarianism as the absence of red meat in the diet for at least 3 days per week.

Exercise is a more complex issue. Social scientists all agree that a sense of failure, guilt, self-recrimination, and hopelessness is very detrimental to physical and mental health. Thus, as one NIMH scientist espoused, “Making plans to exercise regularly and failing to do so is terrible for your mental health and thus plans to exercise should be expressly avoided. On the other hand a “vague notion” of becoming more active in the good weather is easily fulfilled and thus not detrimental to health.”

Besides, in my life time I have had two friends who died while jogging, and to call this anecdotal evidence would be insulting to their memory.

Thus, in keeping with the latest scientific evidence, I resolve in this third pandemic year of 2022 to continue eating and wait for the good weather to occasionally (or quite often actually) stroll outside.

When it Comes to Vaccinations, I Stand with Macron

By Marvin Ross

French president Macron upset many when he announced that he wants to “piss off” the unvaccinated by making life difficult for them and forcing them to vaccinate. He is so right as the statistics show at least in Ontario and likely elsewhere as well. Austria has made vaccines mandatory, Greece is fining the unvaccinated over age 60 $114 a month and Italy is planning to prevent the over 50 unvaccinated from going to work.

The Omicron variant is spreading rapidly while, in Ontario, 81.6% of those over the age of five have already had two doses. Our problem is with the 12.6% of people who do not even have one vaccination. Even though you need a vaccine passport to go out to dinner, to a movie or a play, all has been shut down to help prevent the collapse of our hospital system. All elective surgeries have been cancelled which will not hasten death but will increase the suffering for those whose procedures have been delayed.

The anti-vaxers point to the fact that both the vaccinated and the unvaccinated are getting Omicron but they ignore the crucial bits of data that tell a compelling story. According to the science table that has been advising the Ontario Government since the beginning, covid cases among the unvaccinated are 1600.9 per million versus 1292.0 per million among the vaccinated. The vaccinated with two doses are 19.3% less likely to get the virus which is a reduction but not that great a reduction.

The huge difference is in severity. Those who have not been vaccinated are 5 times more likely to be in hospital than the vaccinated (532.7 per million vs 105.9 per million). That differential becomes even greater when intensive care need is looked at. The rate for unvaccinated in the ICU is 135.6 per million compared to 9.2 per million for the vaccinated. That’s a reduction of 93.2%

These are the stats for January 5 from the Science Table

We are all being made to suffer because of a small element of people who value their personal freedom over the good of all society or because of their inability to grasp science. If we required people to show their vaccine passports for travel on public transit, shopping and even going to work in addition to the already required restaurant and other places of entertainment, they will either get vaccinated or sit at home alone.

The issue is the right to make decisions and choices about your own medical treatment (and to hell with everyone else) versus the impact that right has on the health and safety of others in society. It has been suggested to me that the case of Typhoid Mary is one that is comparable now. Mary Mallon was an Irish American cook who was an asymptomatic carrier of typhus. She denied being ill but, as a carrier, she infected many and some of those whom she infected died. She continually denied that she was ill and was twice quarantined to North Brother Island for a total of 26 years. Isolating people in quarantine to protect the majority of society is not something new but dates back to Biblical times when lepers were isolated in colonies.

Today, we are not suggesting the unvaccinated be quarantined on remote islands but that they simply accept a fairly benign injection. How terrible is that?

We should not be allowing this small minority to dictate to us and to clog up our hospitals. The other day, I saw Dr Paul Offit, an American pediatrician and expert in vaccines interviewed on BBC News. He stated that at his hospital, the Philadelphia Children’s Hospital, the Covid wards are full of kids whose families are not vaccinated. Watching families sob when he is forced to intubate their kids makes him want to go and shake some sense into them to vaccinate he told the BBC. He added that a parent’s job is to protect their kids and not vaccinating is not protecting them. Today, in Ontario, babies are ending up in hospital with covid acquired because many pregnant women are not vaccinating.

Maybe Macron’s strategy and the measures being taken in some European countries will work.

A Look Back and A Wish For 2022

We have been writing blogs since October, 2014 and while we weren’t sure how much we could generate, we have somehow managed to put out 573 of them on at least a weekly basis. While the vast majority of our readers are in Canada and the US, we are read in a total of 167 countries. According to feedspot, we rank as number 76 in the top 100 blogs and websites worldwide dealing with mental health. We are number 6 out of the top 15 in Canada.

In the past year, our ten most read blogs are:

Yes, Involuntary Committal and Treatment Does Work
The World Health Organization Joins the UN in Attacking the Mentall Ill
The Decline of Mental Illness Treatment from the 1980s On
Guest Post – Dealing With the Mental Health bureaucracy
Things a rural doctor has in his iPhone during Alberta’s COVID-19 pandemic – Reblog
Going Off Schizophrenia Medication – A Real Life Example
When the Involuntary Option is Ignored – Tragedy Follows
Discrimination Against the Mentally Ill by Medical Professionals
The Reality of Involuntary Treatment
Lived Experience and Peer Support

Our Top Ten Blogs of All Time:

The Decline of Mental Illness Treatment from the 1980s On
Donald Trump’s Mental and Emotional Age?
Belief Systems, Mad in America and Anti-Psychiatry
A Psychiatrist Critiques Open Dialogue
Involuntary Treatment and British Columbia
I Thought I Was Too Smart for Schizophrenia
Why I’ve Been Prescribing Psychiatric Medication For 47+ Years
Time to Re-evaluate Clozapine Use for Improved Schizophrenia Outcomes
A Psychiatrist Discusses Hearing Voices
The Unfiltered Mind of Donald Trump – A Tentative Psychiatric Evaluation

Some of the above were written by guests and we did receive over 2000 comments to what we wrote. My personal favourite is one of the latest for the blog post Anti-Psychiatry in British Columbia – The Need for Continual Vigilence. Someone by the name of John posted “The world would be a better place if the author of this diarrhea were to stop living in it.” One fan responded with “It’s not diarrhea. It’s shite! The guy needs to get his terminology straight!”

To all our loyal followers and readers, thank you and may 2022 prove to be an improvement over 2021. Stay safe, healthy and happy

Unintended Consequences and the Perfidy of Human Behaviour

By Dr. David laing Dawson

The scourge of drug addiction and premature death from drug addiction has always been with us in some form or other. And over the past 20 years, in this part of the world, and many other enlightened jurisdictions, we have tried very hard to reduce the harm caused by drug addiction.

  • We have redefined addiction, at least in part, as an illness rather than a choice, to some extent absolving the sufferer from any personal and moral responsibility.
  • We have ensured medical doctors do not contribute to addiction by prescribing excess opioids for pain.
  • We have institutionally aligned drug addiction with mental health and mental illness services.
  • And we here and there have provided safe injection sites, methadone clinics, and ubiquitous Naloxone kits. We have, in theory, made it much safer to use and to survive an accidental overdose, and much easier to get into “treatment”.
  • Insite opened in 2003 as North America’s first legal supervised injection site, located in Vancouver’s downtown eastside. Their published statistics have been quite remarkable, showing the number of customers per month, the few overdoses on premises, and the fact of no deaths occurring on premises.
  • And of course we have made marijuana legal in Canada.

But, in British Columbia and throughout Canada, the number of deaths from accidental overdose has (with one year exception) increased year over year the past 20 years, peaking, so far, for British Columbia, with 201 deaths in the month of October, 2021, and 1782 for the first ten months of 2021.

Of course, well-intentioned people are now calling for more safe injection sites, more treatment facilities, more money spent, more de-stigmatization, more empathy, and no legal ramifications for holding small amounts of illegal drugs.

(As a side note I think institutionally aligning drug addiction with “mental health” did not help the addicted population much, but certainly increased the stigma of mental illness. In fact, in public attitude, it has, in a sense, tarred mental illness with the same brush as addiction. In our folk wisdom we know, really, that there is at least some choice and personal responsibility involved when someone reaches for that needle or packet of powder. And now, I suspect, at least more than in the period between 1960 and 1990, our folk wisdom (mixing addiction and mental illness in our minds) has allowed us to assign some personal responsibility and choice (blame) to the homeless person suffering from schizophrenia.)

I don’t profess to have an answer, and I know there are other variables afoot, COVID being one of them, but I think before we insist on doing more of the same, more safe injection sites, more addiction treatment, more naloxone kits, more de-stigmatizing of addiction, legalizing all drugs, we should seriously consider that what we have done for addiction over the past 20 years may have made the problem worse; and it certainly did not reduce the numbers and it certainly did not help attitudes toward mental illness.

(I just read an article from some authority claiming we must do something different for addiction, but then went on to propose more of the same.)

But here is an idea: 2000 overdose deaths in one province in one year is a big cohort. Why don’t we study each and every one of these overdose deaths in depth to look for some clusters or patterns. And if we find some patterns or identifiable clusters we can then develop some targeted prevention, rather than argue about large grand schemes (that could have more unintended consequences) such as legalizing all drugs, or providing safe injection sites in every neighbourhood.

The basic demographic data is available: male, female, age, drug found in the system, but many more questions could be asked, such as:

How many were taking prescription opioids safely before being cut off?

How many of these deaths have occurred because of a contaminated supply?

How many of these addicts had an underlying and treatable mental illness?

How many had underlying other medical conditions or deficiencies?

How many of these overdose deaths are occurring in back alleys and how many in homes or housing of some sort?

How many of these deaths are addicts using alone?

How many of these overdose deaths are occurring with addicts who have gone through treatment programs and have had a period of being clean and thus developed reduced tolerance and then gone back to using the same dose as before?

For how many was addiction a replacement for meaningful activity or a replacement for meaningful human relationships?

(Most accidental-death-by-overdose cases I read about, including that of famous musicians and actors, have been situations of a period of sobriety by choice or force (jail, hospitalization, treatment program) followed by a relapse. If this is a significant percent of the death by overdose population it suggests a very inexpensive and targeted prevention program would include clearly telling every addict as he or she leaves a treatment program, hospital or jail: “You will relapse. And when you do you must cut your usual dose in half or you will die”.)

I Hate Science.

By Dr David Laing Dawson

Or, at least I recently developed some empathy for the anti-vax, anti-science crowd.

I watched a video of Dr. John Campbell (who seems quite sane, balanced, knowledgeable) in which he promoted high intake of vitamin D as a way to prevent severe illness and death from COVID, based on two German studies. It all sounded quite reasonable; the data seemed to speak for ?themself.

That evening we were going to be spending some time with my son and his family and I made a mental note to myself to persuade them to increase their Vitamin D supplements.

But later in the day, I thought I should look more closely at this recommendation before bringing up the topic, in order to maintain my reputation with my son.

So I spent some time looking at other studies, some meta analyses and attempts to replicate the German data, and, of course, it all washed out, inconclusive, not so clear cut, beyond some support for the idea that if you are actually Vitamin D deficient you are more vulnerable.

And therein lies the difficulty with science in matters human, human health, illness, suffering. Variables, biases, expectations, wishful thinking, cognitive dissonance, the Hawthorne effect, the placebo effect, the effect of social pressure on perception, the corrosive effect of money, the power of context, and the fact that our emotional system almost always wins when it goes mano a mano with our cognitive processes. To say nothing of how much we humans love the simple convenient answer. He’s a Taurus; that explains it.

Wouldn’t it be nice if a little bit of surgery on a vein cured MS? Or megavitamins cured schizophrenia? Or some tea made from a rare plant starting with the letter X cured cancer? Or doubling up my dose of Vitamin D and adding a little zinc, plus a good mouth wash, protected me from COVID?

Unfortunately in matters of health and science we can’t trust our own eyes and ears and the experiments to prove something or disprove something in any conclusive way can be very costly, must be double blind, eliminate every conceivable other variable, have a sufficiently large cohort and be replicated somewhere else by someone else.

What a bother. No wonder we are so apt to say, “My neighbour swears by it and that’s good enough for me.”

So I will not double up my Vitamin D supplement but I will continue to take about 2000 IU each day, because, and there is plenty of science behind this, I am only getting about one half hour of sun exposure per month these days.

Omicron, be gone.

Seasons greetings to all

Anti-Vax Docs

By Dr. David Laing Dawson

Yesterday in British Columbia three (3) doctors, M.D’s, spoke at an Anti-vaccination rally. Each mouthed a fair amount of nonsense along with being simply against COVID vaccination. One even promoted Ivermectin.

As medical doctors I assume they attended University for 3 or 4 years before entering medical school, and I assume they graduated after 4 more years of University and interned. And I must assume that along the way they learned a little of the history of modern medicine and science, and of diseases and historic epidemics, from the Bubonic Plague to Cholera to the Spanish Flu.

So what is astonishing to me is that they are opposing the one achievement of modern scientific medicine that towers above all the others: vaccination. There are very few other medical discoveries and practices that have had world-wide positive effect (positive with the exception of contributing to the population explosion, that is). The other impressive achievements of that magnitude that I can think of off hand might include the public health measures for potable water and sewage disposal, along with antibiotics, prenatal and post-natal care, insulin, and anti-psychotic medication.

But vaccination towers above all of these in the numbers of lives saved or spared, in its dramatic impact on the centuries old scourge of infectious disease, on death in childhood or in the act of giving birth.

The rest of modern medicine mostly prolongs the lives and reduces the suffering of many people in the developed world, long past the age of reproduction.

There is much room for disagreement and argument in modern medicine: routine mammography, routine physical examination, over use of antibiotics, over use of many drugs pushed by big pharma, arthroscopy, percentage of births by Caesarian, addictions vs. treatment for pain, taking pills for stress or sadness, best diets, exercise, Viagara for dementia, vitamin supplements, coffee or tea……….

And it is reasonable to distrust big Pharma, or any big corporation for that matter.

But here we are, after a hundred years of vaccinations eliminating or almost eliminating many infectious scourges, from small pox to diphtheria to polio, facing, as of the final months of 2021, a new and constantly mutating virus and the fourth or fifth wave of a pandemic that has now killed 800,000 Americans and 30,000 Canadians, along with the incredible development and testing of vaccines within a year of the start of this pandemic, with more data being accumulated and made public about the efficacy and safety of these vaccines than any other treatment or prevention ever offered by any health care provider, and we still have some doctors opposed to vaccination.

Perhaps we could have guessed there would be quite a few “vaccine hesitant” citizens and predicted where most of them would reside, what level of education they had achieved, and of what political party they favoured, but never would I have guessed we would have actual Canadian medical doctors publicly opposing vaccination.

Note to the College of Physicians and Surgeons: Action is needed now.

Guns and Teens

By Dr. David Laing Dawson

As either a parent or a law maker, a clinical case from some years ago tells you all you need to know about teenagers and guns. I will have to leave out some details to keep this anonymous.

The boy had a girlfriend. He and his dad hunted together. The father kept his rifles in a locked cabinet. Some jealousies and betrayals occurred in the girl/boy relationship. Someone posted salacious accusations against the boy on social media.

The boy decided his life was thus ruined, permanently and forever.

He decided he would have to kill himself.

That night he broke into his father’s gun cabinet and took out a rifle. He found the ammunition, loaded the rifle and took it into the back yard. His parents were upstairs asleep.

The boy sat beneath a tree, placed the gun between his legs, the muzzle under his chin. He fired the rifle. The bullet tore through his jaw and mouth and nose and ruined his face. But it missed his brain.

Damaged and bleeding he found his way back to the basement rec room and the gun cabinet. He then replaced the rifle and locked the cabinet because at that moment his worse fear was of his father finding out he had broken into the gun cabinet. He then lay on the floor where his mother, wakened by the gunshot, found him.

He survived.

I was thinking about this case because of the current tragedy in Oxford Michigan. Definitely it is a rather extreme situation when a parent buys an automatic handgun as a Christmas present for a 15 year old, and then stores it in a bedside table; and this child writing “the thoughts won’t stop. Help me” does indicate the possibility of a psychotic illness developing.

But going back to the situation above:

  • This otherwise bright successful teenager suffers social embarrassment/shame at school, in his peer group. (This is bound to happen at some time for many if not most teens, and greatly magnified these days by social media)
  • From this he concludes his life is over. (Of course, he has no sense of time and perspective as a teenager)
  • He decides the only path is suicide in dramatic fashion. (As a teenager, thinking through alternatives to direct action is beyond his capabilities, and as a teen he has no real sense of how permanent and devastating to family that action could be and/or he might even, before the age of 18 or so, imagine being around to see the consequences of his actions on the friends who betrayed him. A “They will be sorry” moment.)
  • He doesn’t tell his parents because of his sense of shame, his need to present himself to them as an adult, a “man”, and not a frightened child. Though given enough time, most parents would notice something is going on with their child.
  • Of course he knows how to get into the gun cabinet. Or his mother’s purse, his father’s wallet, the liquor cabinet, the porn sites on his computer, the basement window. It is an adolescent prime directive to figure out how to get around the rules.
  • And then the most telling and yet hopeful bit of all: after shooting himself and ruining his face he is still most concerned about getting caught breaking into the gun cabinet and incurring his father’s disappointment and wrath. So he puts the gun back before lying on the floor to die.

Average teenager, ordinary parents, suburban middle class, a moment of social shame, embarrassment among peers, an extreme adolescent reaction to this, and ….. an available gun.

It’s Time to Call Schizophrenia Early Onset Alzheimer’s

By Marvin Ross

OK maybe I’m being a bit facetious but I do think it is very revealing to compare how the two groups of people are treated and particularly as there are similarities in the two diseases. I first wrote about this in Huffington Post about 10 years ago and I’ve used the line that we do not let granny live in a cardboard box in an alley somewhere so why do we do that with those who suffer from schizophrenia.

What I said in 2011 was “Alzheimer’s disease impacts the elderly while schizophrenia, which begins in late adolescence, initially impacts the young. Among the symptoms of Alzheimer’s are delusions, paranoia and impulsive behaviour. Symptoms of schizophrenia include hallucinations, delusions, thought disorder and, in many cases, paranoia.” In a recent podcast interview (see below) I mentioned that when schizophrenia was first described by Arnold Pick at Charles University in Prague, it was called dementia praecox or premature dementia. The term was popularized by Emile Kraepelin.

What has solidified my view on this is that I am the power of attorney for someone with Alzheimer’s and so I can compare his treatment to that of my relative with schizophrenia.

My friend has been living in a dementia care residence for people with mild to moderate impairment but with the understanding that he will worsen and require nursing home care. Despite a doctoral degree and a successful writing career, he has no insight. He denies he has Alzheimer’s preferring to say that he is simply eccentric. Getting him to move into the residence took the efforts of relatives who flew here from the UK and the US.

He is now at the point to need heavy duty nursing care and when I spoke to the co-ordinator who arranges nursing home care, she wanted to talk to him to get his permission to put in an application. Sounds a bit familiar to those of us dealing with family with schizophrenia and anasognosia. But there was a difference!

When I explained the situation and the lack of insight, I was told that she would go to see him and do a competence assessment. She got back to me with “he is not competent”, and so I am allowed to make the decisions as power of attorney. How totally different from psychiatry. But an even bigger difference is the absence of a rights adviser as we have in Ontario for psychiatric patients. The Psychiatric Patient Advocacy Office or PPAO visits all patients declared incompetent and lets them know they can appeal that designation. They can even get a lawyer free to represent them while they delay any treatment that is required.

I’m not suggesting that people’s rights not be protected but people do have the right to be well and the right to be freed from the chains of their psychosis and that does not happen when lawyers get involved and fight with doctors and the families. One of the most upsetting cases I wrote about concerned a woman on a community treatment order living in a group home. Her status was up for review and she appeared with a lawyer well known for opposing treatment orders. Due to a clerical error, her family were not notified of the hearing and the board rescinded the treatment order.

The woman disappeared and could not be found anywhere. As she had no cell phone or credit cards, it was difficult to find her and police were convinced she was dead. Months later, she was found in a homeless shelter in another city about 50 miles away but the story could have had a totally different outcome. having interviewed the missing woman’s family, I have an inkling of the pain they went through fearing for the worst. None of it should have happened.

Going back to my Alzheimer’s friend, he became ill and is now in the hospital and I am again astounded by the differences between his stay and that of someone with schizophrenia. Hospital staff are quite open to talking to me and giving me progress reports. At one point, I mentioned the problem of the demented elderly blocking beds in acute care hospitals because there was nowhere to send them as we do not have sufficient long term nursing beds. The doctor assured me that he would stay in hospital as long as it was needed so he could improve as much as he is capable of improving. Contrast that with psychiatric units that can’t wait to kick patients out before they are properly stabilized.

This week, we had a conference on his future care involving hospital staff, the dementia care home staff, his regular doctor, the social worker from that office and the case co-ordinator arranging long term care. We have a solid plan moving forward. How often does that happen in schizophrenia? A large comprehensive meeting only happened once at the outset of the diagnosis of my relative but no plans were formulated. We were told we might want to learn as much as we could about schizophrenia and when I said maybe the hospital should have some material for families, I was told they did not.

Aside from that first time and another occasion when the psychiatrist categorically refused to talk to family, most of my experiences with psychiatric units have been fairly positive but not always. At one point, my family member was moved to a different unit twice without my being told. When I called the unit on each occasion, I was told they had no patient by that name there and when I asked where he was, I was told they could not tell me. It was easy enough to find out. All I had to do was call the switchboard and ask for patient information. I was told where he was.

I then had to call the charge nurse on duty to force the unit staff to talk to me. All staff involved including the psychiatrist who refused to talk to me were disciplined by the hospital administration and a record of that was put into their personnel files but no one should have to contend with that level of stupidity. As one sensible psychiatrist once said to us, when the family is involved the outcomes are much more positive. He added that it bothered him to have patients with no family involvement as the outcomes are not as satisfactory.

If health care staff can act sensibly with dementia patients they can and should do so for those with serious mental illnesses. We should not expect less.