Virtual Book Launch for On the Origin of the Deadliest Pandemic in 100 Years: An Investigation

Please join me for the virtual launch of my new book, On the Origin of the Deadliest Pandemic in 100 Years: An Investigation. Dan Wells, founder of Biblioasis, my publisher, has asked the wonderful novelist, non fiction author, and former Harrowsmith Editor, Wayne Grady to interview me. While the book has garnered interest from the CBC, the Globe and Mail, and the Toronto Star, there is a lot to discuss that newspaper articles and national news reports cannot convey which might be of interest to anyone getting ready to cast a vote in the federal election. The format permits us to take questions from any who have them.

The interview will be live-streamed starting at 6 p.m. on Wednesday, September 15, 2021. You can view the live stream and participate on Facebook or YouTube.

Hope to see you there.

Elaine

My new book: On the Origin of the Deadliest Pandemic in 100 Years: An Investigation

On the Origin of the Deadliest Pandemic in 100 Years: An Investigation is the title of my new book. It is the product of more than a year's hard digging into the origin of the SARS-CoV-2 virus. It will be out by the end of August in Canada, the first week in September in the US. 

It is without doubt the hardest book I've ever written. Doing an investigation during a pandemic required me to reinvent the tactics I used when I started in journalism in the early 1970s. My first job for Maclean's Magazine was to research a story on the planned Montreal Olympics for a writer who had strong opinions about why it shouldn't go forward, but no facts to back them up. To do that project, I rarely left the periodical section of the University of Toronto's Robarts Library because what I found there about past Olympics --all had involved financial boondoggles-- was great support for the writer's argument. ("You found this in the library? In the newspapers? In magazines? Really?") To do this one, I rarely left the house, working instead on two computers and a smart phone which provided instantaneous access to a tsunami of information. In the beginning, when we were locked down, no one was allowed to leave their home for any reason other than to buy food (and toilet paper) or for a medical emergency. Even if I'd ignored those rules, it wouldn't have got me anywhere. Most of the researchers I wanted to interview don't live in Canada and weren't in their labs anyway.  The borders were shut. Most government officials were working from home. Parliament was closed. So I was forced to develop my own imperfect version of the method of inquiry once wielded like a broadsword by the legendary US journalist I.F. Stone. His most important scoops came from careful reading of public documents and deft use of the Freedom of Information Act.   

I read everything I could find in learned journals, in pre-print literature and on academics' blogs about the nature of SARS-CoV-2, its relationship to other coronaviruses, its chemistry, its evolutionary history, the very unusual structure of its genome and its near perfect adaptation to human beings from the very start of the pandemic. I scoured the worldwide daily press, dived down many internet rabbit holes, made too many access to information applications. Most knowledgeable researchers, to my surprise, didn't answer my emails. That was a first: usually scientists want to discuss their work with journalists. It helps them climb the tenure ladder to get their ideas circulating in the broader community. More astonishing was the lengths to which civil servants went to protect themselves and their political masters from embarrassment by means of improper redactions and outright refusals to comply with the access to information law. As I figured out who I had to talk to, if they responded (a few did) I  interviewed them by means of email and telephone. But it was mainly through their published works that I came to know then. What I learned about the way globalized virological science has been practiced over the past twenty years surprised and enraged me. Certain names kept coming up: Shi Zhengli, Linfa Wang, Peter Daszak, Ralph S. Baric, Kristian Andersen, Zhihong Hu, Xianguo Qiu, Keding Cheng, Chen Wei, E.C. Holmes, George Gao. 

The book is both a detection narrative and an exposition of the political and scientific context for the worst public health disaster since the great flu epidemic of 1918/19. It points fingers. It names names. It describes the way in which the government of China, from the very beginning, withheld vital information and promoted false-by-omission scientific narratives in order to deflect blame even as it permitted the virus to spread. China's relentless PR campaign began at the end of December, 2019 even as the first mention of a nasty pneumonia circulating in Wuhan found its way to social media sites and from there to the West. China was helped in its efforts by the WHO, whose job is to protect the world from such disasters, and even more shockingly by some of the world's best scientific journals, our leading coronavirus experts and the US institutions which fund their work. All were more anxious to protect their interests than to pursue the truth. The book describes in detail how China used the globalization of biological science as cover for dual-use research that could not be done at home, reaching into the most secure laboratory in Canada for the study of the most dangerous pathogens  (Ebola, Marburg, Nipah). China's top military/civilian scientists (there is no boundary between them) used it as if it were their very own lab for years. 

More than 4 million people are known to have died from SARS-CoV-2 since December, 2019. That number is at least twice as high if suspected, but not certified, COVID deaths in India are factored in. It will continue to grow as the virus wends its way throughout the mostly un-vaccinated developing world, mutating as it goes, stumbling on ever more clever means to infect humans and the susceptible animals that live near us. These deaths are not and will not be the result of an unavoidable accident of nature: they are and will be the product of the very best human minds.

As the 4th wave begins, it's time to hold some of those humans to account.

Stay tuned.

Field Notes from a Medicare Disaster: Fourteen

As the days and weeks went by, my guy made slow-- achingly slow-- progress. Context is everything:  he'd arrived at Providence unable to even turn himself in his bed, so it was great progress when he got to his feet in the gym (okay, yes there were two physios on either side of him, and he was holding on to a walker with white knuckles, but still).  It was also progress when, with the aid of what is called a saskapole, he was able to pull himself on and off his bed and into and out of a wheelchair using his own muscle power instead of the Hoyer (something he began to do not long after they stopped the laxatives he didn't need and the blood pressure drug that made him dizzy). When the saskapole was first put up in his room, at his insistence, but against the better judgement of his physiotherapist, he got cocky and tried to use it without a helper: he ended up sliding to the ground like a talent-free pole dancer while his roommate pressed the help button.

Gradually, he began to take over more of his own care, shaving himself, washing himself in the shower, achievements proudly reported by his nurses (he put on his socks today!) who were great cheerleaders. But there was no hiding where everyone at Providence thought he would get to in the long run: the occupational therapist wanted us to order a wheelchair designed just for him because that was his future. What else to expect with the diagnosis of a neurodegenerative disease?  There could only be regression. He would never be as able as he'd been before he got the flu when he'd climbed up and down the stairs several times a day, and did it more easily than walking. They wanted to teach him how to "walk" in a wheelchair using his heels and legs to pull himself along, rather than his arms. The lead physiotherapist had a theory that relying on his strong upper body was a mistake, that he should work hard to rebuild his legs. And this turned out to be the correct strategy, as you will see, though the results would surprise her. I measured the door openings at home to make sure the bathroom reno would permit a wheelchair or commode chair to roll in and out and ordered two stair-lifts, one to an outside door, one to the second floor, because, so far as the physiotherapist and the occupational therapist were concerned, there was no way in hell he'd be able to climb or descend our stairs again. It was suggested that we might need a saskapole by the bed and in the bathroom too.

In other words, as a friend of mine who died young from a medical error used to say: situation bleak.

And yet: as I ran around doing the things that needed doing I refused to dwell on bleak. The fact is I didn't really believe the diagnosis and so I didn't really believe the prognosis either. But truth is more than facts. The truth is I could not get my head around the notion that he would not improve. And neither could he. We have both spent our lives doggedly working at difficult problems until we conquered them or failed with honor. The belief in the inevitability of progress through hard work is a habit of mind rooted deep in both our childhoods. ("Just put your head down and bull your way through," my Dad used to say. "If at first you don't succeed, try, try and try again," his Mom used to say.) We could not just shake off our belief in that belief. and besides; he was improving daily, if only in tiny increments. There were good days and bad. First he had a good day followed by a bad. Then he had two good days followed by a bad. We thought he could do stairs again, that he would do stairs again if they would just let him try. But they didn't want him to try, not without big people standing by. We didn't see the virtue of building the legs and letting the arms go to rack and ruin: we asked if he could do weights. No, they didn't want him doing that either.

We were directed instead to practice using the wheelchair, and later, getting in and out of a stairlift.  Providence has a small stairlift set up on a short staircase in a big room on the basement level of the main building. He practiced getting out of the wheelchair, using a walker, and then getting himself on and off the stairlift. It went well. He smiled and waved like the Queen as he sailed up and down again.

One day, the wheelchair people brought in a snazzy one for him to try, much lighter than the generic wheelchair he'd been using, with cushioning designed specifically for him. I had to learn how to disassemble and reassemble it in order to get it in and out of a car. But at least I could lift it. Standard wheelchairs are very heavy. The company that would actually supply it, with a government subsidy of 85% of its cost if the Local Health Integration Network officials approved (not a forgone conclusion as I would discover), is also a listed supplier of other needs like handholds to screw into door frames, like commode chairs that can roll right into and out of a shower, like a saskapole. Each for a price. A hefty price. The wheelchair, even with the subsidy, had a really hefty price. People who have no money do the same thing with these devices that they do with prescriptions for medications they cannot afford: they don't order them. The medical aid business is growing almost as fast as funeral homes what with baby boomers learning first hand that aging is not for the faint of heart and that death, unlike taxes, actually is inevitable. (Taxes, as the rich know, can be avoided by means of incorporated shell companies in tax havens where the sun always shines.)

About two and a half weeks after he was admitted to Providence, the social worker on his floor made an appointment to discuss his discharge date. They wanted him out by the 23rd of March, one month after he was admitted. That discharge date had been on the weekly schedule set out on his bedside table as soon as he arrived, long before anyone knew what his rate of recovery might be. Apparently, they intended to stick to it come hell or high water. I explained that the bathroom reno might take more time, and he couldn't come home if he had no bathroom. Similarly, we had to wait for the stairlift which had not yet arrived from Britain. Also, I told her I wasn't sure how I was going to manage even with the finished bathroom and a stairlift. He needed help with everything from getting to the bathroom to dressing to getting to bed. While I could screw handholds to door frames so he could haul himself where he needed to go, there were no young nursing students available at our house to lend a hand when needed. I work, I explained. I cannot be a full-time nurse.

I wasn't to worry about that, she said, help would be made available through the Local Integrated Health Network. But not for more than 45 minutes a day if my mother's experience was any guide, I said. I  begged for at least another week past the original discharge date. I had no idea that begging was not necessary: I could have simply refused that date and refused any transfer to another facility, and they would have had to accommodate us, as the story below makes clear. I explained to the social worker that a film crew was coming to shoot a film on him at the end of the month, so would it okay if they shot it at Providence ?

They had never had such a request before, permission had to be sought, she said. The care coordinator seemed particularly pleased at the prospect.

In the meantime, roommate John was going home on weekends, although his blood pressure was being driven up by stress at home. We heard all about the problems of his life, just as he heard all about ours. One day I arrived to find his wife very upset. She was an admirable woman in many ways, not least because her fingernails were always perfect in spite of the hard work she did all day. She wore her hair in a ponytail and dressed in oversized sweatshirts as if in her own mind she was still a lithe teenager hanging out with friends after class. She was feisty. She was kind. She was smart. She was running herself into the ground trying to take care of everything and everyone she cared about. She said John was going to be moved to another room down the hall, a three bed room. He was unhappy about it. I was unhappy to hear it. He and my guy had each other's backs, for one thing. Our families enjoyed each other's company for another.

Why? I asked

A man with insurance entitling him to a two bed room is getting this bed, said his wife.

But we don't have insurance either, I said.

A rebellious/defeated look flashed across her face. It said, without words, that the haves are always treated better than the have-nots in our everyone-is-equal medicare system, and that she and John are have-nots. When John got back from physio he said that if he didn't like the new room, he'd just go home and not come back.

A few nights after John moved, my guy was awakened by a bedlam of grown men bellowing at each other.  Apparently John had come in late and turned on his bed light which disturbed the man in the bed next to him, a man who had been in that bed for no less than two years, a man who steadfastly refused to be discharged from Providence and gave new meaning to the word difficult. When I stuck my head in to see how John was doing the next day I found him in a dark and crowded space. He said he was doing fine. I said I'd heard he'd been in a fight. He grinned and said he liked a fight. Not good for the blood pressure, I said. Yeah sure, he said. Did I know the long wait for help between 4 and 11 p.m. was happening again? He couldn't understand why. The fix was so simple and wouldn't cost Providence a nickle. They just needed to bring on a second shift of nursing students between 4 and 11. Nursing students must do rotations in hospitals as part of their course work. There were more than enough students to go around.

Brilliant, I said, I'll go and suggest it to the care coordinator.

So I hunted down the care coordinator and gave her John's suggestion.

Great minds think alike, she said, we've just started to move on that. Would you like to be on a community advisory committee?

I don't live in this community, I said, and besides, it was John's idea. Why don't you invite him?

Her blank face made it clear she had no interest in John at all. I'll think about that, she said.

She may have thought, but so far as I know, she did not invite.

I arrived one morning to find the new roommate on John's former side of the room, a man in his early fifties. Call him Tom. He was sitting in a wheelchair beside his bed, staring at nothing. His TV was not turned on: it was broken and no one had come to fix it. He had no reading material. He had spectacular tats that run up and down both arms and across his chest, the kind seen on made members of the Russian Mafiya. As he was wearing basketball shorts and a sleeveless shirt they were on full display. I wanted to ask him about them and about his life in general but he'd had a stroke that was so bad he could not speak. He could barely swallow: the speech language pathology people kept bringing him jellied liquids instead of water to drink, though his lunch tray had had things on it that he shouldn't have had. When his meals came, he choked, and choked, and choked, sending me running down the hall repeatedly to find a nurse to clear his airway. As we would learn, he had been in this state for months, first at another rehab hospital, then at home. He'd spent most of the last year on a bed set up in the family room.

I didn't see any of his family for some days. I wondered, at first, if he had one.

Then his wife appeared one afternoon with his mother. Their problems made ours look small. First, they don't live in Toronto but in a smaller town east of the city. Tom's wife looked significantly older than her years. Short, spikey hair, makeup to hide exhausted eyes or at least to avert attention from them, a tad overweight, desk-bound overweight. As long as she was in the room she never stopped fussing over him: he hadn't shaved, hadn't had a shower, she determined these things asking him yes or no questions which he answered by affirmative or negative nods. She spoke in a loud voice, an irritated voice which I recognized because the same voice kept emerging from my own mouth whenever I came in and found my guy in bed, or his physio cancelled. She had found Tom in need of changing so she went charging down the hall looking for his nurse. I'd grown less angry about that sort of thing, mainly because it happened less frequently than when my guy was first admitted. But Tom was new to Providence and she'd been managing his care to her own high standard at home for almost a year in spite of the fact that she also had a full time job as an investigator. She'd had their family room wired with video cameras so she could check on him from her desk at work.

Her husband, she explained when she came back, had been an undercover cop for years, on a drugs and gangs beat, which is why he had those tats, and probably why he'd had the stroke, it was all those years of unbelievable stress, of living a lie every day and wondering when the people he was setting up to be arrested would figure that out and kill him.

His mother, a sweet woman with a June Cleaver face told me later, while Tom was off in the gym, that Tom had been athletic all his life, played every sport there is, and that after his stroke made it impossible for him to walk, let alone run, he'd just cried, and cried. You mean he felt defeated? I asked. I could see that some days he refused physio and just stared at the TV. Yet as the days went by, the physiotherapists helped him get better control of his body and the speech language pathologist taught him how to control his breathing so he could utter a few words.  Though his choking continued, the nurses taught him how to make it stop on his own.

As I watched his progress I began to think Providence was living up to its name.

 I arrived at Providence at 8:30 in the morning to take my guy to his appointment with the neurologist  at Michael Garron Hospital. His day nurse, a tiny woman who was fiercely attentive to her patients' needs, who did everything she could to make things go smoothly for them, had put him at the top of the shower list. Though I arrived early, he was ready to go.

I haven't said enough about the nurses at Providence, both male and female. There was a terrific male nurse who had been a doctor before he immigrated to Canada from Albania in order to better the lives of his children. He'd figured it was faster for him to get certified in Canada as an RN than to redo medical school and wait in line for a residency. So he had sacrificed himself, and yet he was not bitter. His children were doing very well at school, thank you. He made it his business to buck up the spirits of his patients whenever he could, especially the men who were so downhearted at the loss of their strength. When my guy pulled himself along in the wheelchair in the hall, he'd praise the smallest improvement. Then there was the tiny Philipina who had two children at home, but worked most days without stopping to sit down for lunch, worked until her skin took on a grey tinge from exhaustion, then went home and worked some more. And how about the woman from the Caribbean, tall, slim, who handled my guy without breaking a sweat, always with a kind word, always encouraging. And there were so many students who came, in their burgundy uniforms, from everywhere on earth, earnest young men from Pakistan, young women from Brazil, from Somalia, from Ethiopia, some wearing hijabs, some with their hair swinging free, all with that inner glow that comes from helping others, that comes from knowing you can. It's a noble calling, one of them said. I coudln't remember the last time anyone I knew used the word "noble" in conversation.

We went downstairs and out into the brisk morning air to wait for the wheelchair taxi which arrived exactly on time. The driver rolled him in his wheelchair through the van's back door, fastened his chair to the floor, and off we went.

The neurologist' s office was off a dark hall lined with patients filling all available chairs. The neurologist kept us waiting long past the appointment time, but I didn't worry because I had brought a Sinamet with me in case we had to wait past the time when he was supposed to take it.

The neurologist was a tall, lanky man in his middle forties. He made it clear right from the start that he would not be taking on my guy's case. I don't do Parkinson's, he said. But  perhaps we could tell him what had been going on?

We raced through the issues, explained that we'd had a problem with the neurologist assigned by St. Mike's, and gave him the whole story as quickly as we could.

Would you let me examine you, he asked.

That's why we're here, said my guy.

Carefully, slowly, he went through the same physical tests done by the neurological resident at St. Mike's which had produced a diagnosis of Parkinsonian syndrome.

"Well," he said. " I don't think it's Parkinson's or anything like it."

That's what the very first neurologist said, I said. He'd ruled it out. And the doctor at Providence said the same thing.  But if it isn't Parkinsonian syndrome, what is it?

"I have no idea," he said.

Well would you take me on, my guy asked. I like you.

No, he said.

Something made me wonder if he had tangled with our former neurologist, or had some fundamental disagreement with the way neurology is managed at St. Mike's

Would you care to comment on the fact that a resident made this diagnosis and the neurologist we were assigned is an epilepsy specialist?

No, he said.

Is this about medical politics? I asked.

I can't comment on that, he said.

Which was of course a non denial denial and in my world, the equivalent of a yes.

Well, what should we do? My guy asked.

I think we should do a test while you're at Providence with nurses and doctors to help you, where you're safe, he said.  I want to run an experiment.  Let's stop the Sinamet and see what happens. If you get worse, the original diagnosis might be correct.  If you don't, well....

You mean stop the pills right now?

That's right, he said.

Twenty four hours later I came to his room to find him sitting up in his chair with his ankle over his knee, the way he used to sit, but which he hadn't done for months and months. His voice was stronger, more his normal register. And there was something else, a brightness to him that I hadn't seen for a long time.

You're feeling better, I said.

Right, he said, with a grin.

When Daughter Number One came in she was astonished.

His voice, she said, the way he's sitting, the way he's talking, it's like Dad's back.

Exactly.

Field Notes from a Medicare Disaster: Thirteen

I had a chip on my shoulder as big as the moon by the time I got to Providence on Monday.

I had had words with a nurse on Sunday because I had found my guy in bed with robe and sheets that needed changing and it was past 10 in the morning. He'd been in that state since before breakfast, and breakfast at Providence is about eight a.m.. She didn't appreciate the way I came right at her: she let me know it. I didn't appreciate the usual excuses--it's the weekend, there aren't enough staff available, that's just the way it is. It had taken a few moments for me to pull my anger down to a dull thrum, to apologize to her for being demanding, which I did, not because she deserved the apology, my guy did, but because I was doing him no favors by losing favor with her.  It was at this point that I understood why patients do not always complain about inferior or even sadistic treatment. He was at her mercy. So I had changed my tack and asked her how I could help. I had said I would be pleased to change his gown and bed if that worked for her, all she had to do was point me at the right cart for the linens. She had in turn adjusted her tone from "don't you be snippy with me" to neutral.

But by Monday morning I was furious at this situation. Why should he have to be uncomfortable for hours until I arrived or until someone on staff managed to fit his needs in among their many other duties? Why should I have to insist on reasonable care in a humble tone so as to avoid retaliation, subtle or otherwise? And why had so much of the burden of care shifted to the family? The treatment at St. Mike's and here was beginning to remind me of what I knew of developing countries where families must sit around the clock with their loved ones, bringing them food, pillows and blankets, even medicine. I was coming to see him every day, as was daughter Number One who lived close by. (Daughter Number Two had moved to another city and could only check on him by phone.) I was doing his laundry at home, bringing him coffees and newspapers, shaving him, making sure his lunch tray came on time, taking it away when he was done, making double sure he got his medication, working on bed exercises with him to help him get some muscle mass back in his legs. After a few hours of that, I drove back home again across town to take care of business and, after that, to supervise the doings of the contractor renovating the bathroom at light speed so he could come home at some point.

And what about him, the patient whose needs are supposed to be front and center in this system?

I thought Providence had brass nerve to claim it offers patient-centered care on a banner strung across a wall in the main entry hall. This sign trumpeted the recent merger between Providence, St. Michael's and St. Joseph's hospitals, along with a gag-me-with-a-spoon vision statement. The phrases patient-centered, or worse, client-centered care, appear on the brochures and websites of most of the health care institutions I have dealt with in the last few years and on most of the documents produced by the various regulatory Colleges charged with protecting the interests of patients. But these are words, not deeds. What we actually have in Ontario is budget-centered care, which is exactly what my Dad predicted so many years ago.

Newspapers and magazines have reported for years that in Ontario's hospitals, patients are routinely stashed in the halls, or in offices, and occasionally even in toilets. because there are not enough beds to go around and not enough nurses to help those patients stuck on narrow gurneys waiting for one. Their families must help them. That is because hospitals have been closed and nurses let go in significant numbers ever since the Rae government of the 1990s. Ontario is at least 20,000 nurses short of a a barely adequate deck.  Nurse Wettlaufer's murders and attempted murders happened in long term care facilities, not hospitals, which is ironic because only long term care facilities have a specific, legally required patient/nurse ratio. That ratio is low which may explain why Wettlaufer often worked alone at night, the only nurse assigned to care for a number of inmates. She made frequent mistakes while helping herself to drugs not kept under lock and key and not properly accounted for. She was able to relieve her personal demons by killing patients who irritated her, injecting them with purloined insulin. In this so-called patient-centered system, the College of Nurses of Ontario, the regulator of the province's nurses, didn't catch her, though there were complaints; her employers didn't catch the murders, though one did fire her for bad habits yet gave her a reference which allowed her to work elsewhere; her colleagues didn't catch her; her union didn't catch her; and the coroners didn't catch her either -- because they barely investigated the deaths she caused, even those that were medically surprising. She finally outed herself to a psychiatrist, who turned her in to the police.

Most of these failures-- to catch her, and to properly staff acute care and rehab hospitals--can be traced back to the same sin, administrators making short-term money-saving decisions, which in the longer term cost the system much more.

I was beginning to think these vision statements were a result of cost saving too, that they were churned out by one PR guy who keeps his fees low by recycling the same meaningless phrases. Or  maybe an AI writes them now -- that would be cheaper still.




My guy was in bed and not wanting to get up. Dizzy, he said. So dizzy. The nurse, when I hunted her down, explained that he complained of waves of dizziness every time she asked him to turn over to give him a sponge bath or to help him change. But progress was being made. A physiotherapist would be in soon to work out a program for him.

In the meantime, I went in search of the patient care coordinator to complain about the slow response time on the previous Friday.

It being Monday, she was in her office. When I explained that it had taken 40 minutes for a nurse to respond to my guy and his roommate's calls for help, and that, in addition, a nurse had been verbally abusive to a patient down the hall, she said with a certain bureaucratic je ne sais quoi that she would have to confirm these complaints with the actual patients involved, that my second hand report was insufficient.

Fine, I said. I went back to the room and explained to my guy's roommate that he was going to have to repeat his story to the patient care coordinator personally, she wouldn't accept such information coming from me. He rolled his eyes in his head. His wife did the same when she came in later.

Eventually, the patient care coordinator arrived in the room. There was something about the way she focused her attention on John the roommate and not on my guy, the one who had suffered the long wait, that was just a tad disturbing. I read her manner toward John as edging toward intimidation, as if he had a history of making false complaints and she now dared him to make another.  Yet John did not wilt. He and his wife repeated their concerns exactly as they'd presented them to me:"forty minutes, I could have been dead!" he said to her, and "no one should be talked to like that," said she.

Daughter Number One arrived for a visit in the middle of this conversation.

Daughter Number One has knowledge, acquired in her professional capacity, of many of the rules regarding patient care. Daughter Number One asked if she could intervene. Go ahead, roommate John said.

She asked a simple question: what is the ratio of patients to nursing staff between four in the afternoon and eleven in the evening on this floor?

The patient care coordinator said it was in line with the College's rules on ratios, meaning the College of Nurses of Ontario.

Daughter Number One persisted. So far as she was aware, the College of Nurses of Ontario, the regulator, has set out no such rules.  There are only ratio recommendations which I would later come across in a brief given by the Ontario Nurses' Association to the Ontario legislative committee on finance and economic affairs in the run up to the 2017 Ontario budget. Ontario, according to the Association, has the lowest ratio of Registered Nurses to its total population of all the provinces in Canada.  That ratio has been getting worse, not better, as hospitals strive to meet their budgets by getting rid of full time nurses and hiring agency nurses at three times the hourly cost during upswings in demand. Ontario would have needed to hire 18,000  full time nurses in 2017 to pull itself up from last place to second last. The Nurses' Association also referred in its brief to various studies indicating that in acute care settings, the ratio should be one Registered  Nurse ( RN) to four patients. The Association pointed out that the Auditor General had established that in many community hospitals the actual ratio is more like one RN to 9 patients. The Association also cited studies showing that such low ratios lead to an increased risk of patient deaths, not to mention morbidity.   Yet, according to the minutes of a recent meeting of the College of Nurses of Ontario, we should not hold our breath until this regulator requires appropriate ratios. At that meeting it was asserted that it is just too hard for the College to figure out what the different ratios should be for the various settings in which nurses work (though other jurisdictions seem to manage). Instead, the nurses themselves are expected to advocate for better ratios with their employers. ( Surprise! the hospitals don't listen.) Daughter Number One was aware of all of that. She was also fairly sure that recommended ratios were not being met at Providence.

So what is that College-required ratio please? Asked Daughter Number One again, sweetly.

I'll try and get it for you, said the care coordinator. (She never did: she could not. There is none.)

So let me be clear, said Daughter Number One, as far as we can tell, there is only one nurse available between 4 and 11 on this floor, and this floor has about twenty patients, mainly stroke victims and people with serious heart conditions. Someone could call for help, but, if that nurse is working with someone else in difficulty, that nurse wouldn't be able to respond to any other patient who might also be having a stroke, or heart attack, or who might have fallen. That can't be safe, she said.

Oh we have a culture of care here, said the care coordinator. Anyone else working on the floor is supposed to respond if a care bell goes off and the nurse is on break or on lunch or with another patient.

No one did, I muttered.

But, said Daughter Number One, there is no one on the information desk after five during the week, and no students after four.  We're not complaining about the quality of the nursing. We're saying the nurses seem to have an awfully heavy workload. Have the nurses ever complained to you about that?

No, said the care coordinator, no nurses have complained.

They complained to me, I muttered.

By this point, the attitude of the patient care coordinator had subtly changed from defensively aggressive to concerned. She said she'd take up the complaint about the verbal abuse of a patient with the nurse in question, that she could easily establish who had been on duty that evening (because there would only have been one nurse on duty, I said to myself between grinding teeth) and that kind of behavior is not tolerated.  She also said she would also look into the staffing ratio after 4 p.m. Then she left.

Wow, said John to Daughter Number One, that was interesting. Where did you learn to do that?



The physiotherapist appeared.  I took one look at her and wondered: how in hell is she going to manage my guy? She was so tiny she barely came up to my shoulder, never mind his. She could not have weighed an ounce over 100 pounds. She brought with her an occupational therapist to take measurements for a wheelchair for my guy, so he could begin to move around on his own. The occupational therapist was also very tiny. Both were sympathetic, very keen, and, as it turned out, wonderfully capable of handling my guy. They listened carefully to his story, with particular attention to his Sinamet schedule and when exercise might be most effective. The physiotherapist said she would organize his sessions around that. Session one was set for the next day.

How about that, I said to my guy. They're organizing around you for a change.



The doctor appeared while my guy was sitting up in a chair, strapped in so he wouldn't fall out, eating another salt-free, taste-free vegetarian lunch. When the doctor crossed the room's threshold, he smiled and asked if he could come in and bring students with him. I would like to give you that doctor's name in order to praise him, but I have kept all individuals' names out of this blog so I can write without fear or favour. I am certain he will get public praise from others. He deserves it.

The doctor was a man in his late fifties or early sixties, with lots of grey in his curls, and a middle-aged paunch. He wore a rumpled striped shirt, no tie, ordinary pants, shoes of no account. He was not a specialist, just an ordinary MD, he explained later, who had been working with neuro patients on this floor for years.  First, he sat with John on his side of the room and they had a nice natter about how John was doing and whether it was safe for John to begin going home on weekends. He thought it was. Then he turned his attention to my guy. He smiled again, introduced himself, shook hands, asked how he was doing, asked questions about his background, showed an interest in what he did in life. He'd brought a file with him, which he opened as he sat down and spread over his knee. He settled himself  as if he had all the time in the world.

This was the first time since that charming neurology resident at St. Mike's  made the diagnosis of Parkinsonian syndrome that a doctor, other than my guy's family doctor, had taken the time to sit down and to ask open-ended questions about my guy's life and state of being. This doctor also made eye contact, he made jokes, he asked us to tell him what had been going on that had brought my guy to this bed. So between the two of us, we gave him the whole history from the beginning to the present. He listened very carefully. He noted the blood pressure issue and the dizziness. Not dizzy now, said my guy. The dizziness seems to come and go.

The doctor asked how his blood pressure had been taken, lying down, or sitting up?

It turns out that matters. It turns out that my guy was suffering from orthostatic hypotension-- elevated blood pressure when lying down. When the doctor took his blood pressure while he was sitting up, which he'd been doing for a while, he found it had dropped twenty points from the morning's reading taken lying down. This phenomenon is apparently well known, especially among elderly patients. The doctor also explained that Sinamet is known to cause high blood pressure.

That was like a slap in the face: no one had mentioned that to either of us before, not the neurologist, not the residents at St. Mike's, even one though my guy had often complained of dizziness and I had expressed concern about his suddenly high blood pressure when he was admitted. One resident had made an oblique comment about how a drug for one problem will cause others, you take the bad with the good, but he'd never said Sinamet could have been the cause of the onset of high blood pressure in a man whose blood pressure had always been steady as a rock. And because it was never mentioned, I had never Googled high blood pressure as a side effect of Sinamet. If I had, I wouldn't have offered my guy extra Sinamets whenever he was having a bad time.

The doctor asked for permission to do a physical exam.

Sure, my guy said.

He felt his arms, checked his reflexes, did a number of things I had seen done before by the neurologist and the neurology resident.

Well that's interesting, he said when he was done. I'm not convinced of that diagnosis.

We looked at each other, my guy and I.  We had been wondering about alternative explanations for what was wrong with him, everything from normal pressure hydrocephalus to too many concussions in his youth leading to unsteadiness and gait issues which led to the recent serious falls. We had actually talked about whether Sinamet, which is supposed to replace the dopamine no longer produced in the substantia nigra, might also reduce the amount of dopamine naturally generated by the remaining dopamine producing cells in that part of the brain. Most body systems work on a feedback/need basis. A signal is tripped to say that not enough of a substance is available, and so that substance is made. I had been thinking specifically about how this works with SSRI's, drugs which act on the serotonin signalling system of the brain to modulate mood. SSRIs have be be stepped down very gradually when doctors take their patients off them because it takes time for the patient's brain to adapt to different levels of serotonin. Only later would I learn that the same pharmacologist who discovered that dopamine is a neurotransmitter necessary for movement and who led the introduction of levadopa/carbidopa, alias Sinamet, to Parkinson's sufferers, also led the development of SSRIs.

Well, I said to the doctor, we have our doubts too and that's why we asked for another neurological work up at St. Mike's. We were advised that too many cooks spoil the broth.

The doctor asked for the name of his neurologist. We explained that we no longer had one and we explained why. We weren't polite. The doctor admitted that he'd had a few runs ins with that fellow himself. I told him about the appointment the following month with another neurologist at Michael Garron.

Who? he asked.

I gave him the name.

Oh yes, he said, I know him well, you should definitely go to that appointment.

But how will we get him there? I asked.

Don't worry, he said, we do that all the time. But let's just review the medications he's on, shall we?

He read the list out loud from the file on his knee. I recognized most of the drugs he named, though I was surprised my guy was still getting laxatives as that problem had turned into the reverse.

Well let's stop that then, he said, making a note. Then he mentioned a drug I'd never heard of-- Ramipril.

What's that for? I asked.

 High blood pressure, he said.

But I thought they only gave him something in the Emergency for that and then stopped. Why is he still on that? Why didn't I know he's on that?

He got an interesting look on his face. Could explain a lot of things, he said. That's why the salt-free diet, high blood pressure could lead to a stroke so it needs to be treated, that's why he's on it.  But the thing is, he said, Sinemet is known to cause high blood pressure and Sinamet also sucks salt out of the body...

So he's like losing too much salt for his muscles to function?

Let's take that medication away and put some salt back in his diet and take his blood pressure lying down and then after he sits up, and see where it goes.

Salt? said my guy. I can have salt?



After the doctor left, I ran down the stairs and got salt packets from Tim Horton's so he could splash it all over his next meal.  When I came in the next day, I brought him a bag of salty chips. John's wife had already brought him large, full salt shaker. When the physiotherapist came to get him for his session that day, for the first time he was able to cooperate enough to slide sideways on a transfer board from his wheelchair to a bench.

In other words, stopping two drugs and adding salt had already caused a big improvement.

The next day, the dizziness was reduced further. The day after that it was reduced more. The day after that, my guy was able to stand on both feet for longer than a few seconds, with help mind you, but still. He hadn't been able to do that for six weeks.

A corner had been turned.

Which made me think this doctor really knew his stuff, and if he was not sure sure about that Parkinsonian syndrome diagnosis, then it might well be wrong.

Where did that leave us?

Field Notes of a Medicare Disaster: Nine

Two years is a long time to wait for treatment when you are over 70, especially if neither of your parents made it to the eighth decade. What kind of system asks such a person, any person, to wait two years for help?

A recent survey of Parkinson's sufferers and their health professionals by the Parkinson's Society of Canada found that my guy's just-you-wait experience is not confined to Toronto, where the population is large, or even Ontario, where it is stretched thin over a vast area that neurologists don't often visit. It is pretty much the same across the country. Interestingly enough, the health care professionals surveyed had much harsher views of the system than the patients. The survey makes it clear that waiting six months to a year for the initial diagnosis by a neurologist--necessary to get other public system help-- has become normal. Waiting another year to get expert treatment has also become normal. Few mental health specialists are made available in spite of the fact that Parkinson's Disease is believed to also cause anxiety, depression, hallucinations, and worse. ( I wonder now whether it's the Disease that brings on these issues, or the drugs that are supposed to alleviate it, but that is another story.) Patients with movement disorders benefit from intelligently designed exercise aimed at retraining the misbehaving brain (either by recruitment of stem cells to replace dead dopamine-producing cells, or by teaching clever workarounds) yet the public system is stingy when it comes to paying for physiotherapy. More than 40% of patients have to pay for physio out of their own pockets. They also pay for walkers, bath aids, medications, and wheelchairs, though, with the right diagnosis and the approval of a local health integration network, the government of Ontario will pay 85% of the cost of a "necessary " wheelchair. (Just don't say you mainly plan to use that wheelchair outside. Then they won't fund it at all. Yet a wheelchair assembled with the right parts to fit a particular individual can cost up to $5000.) People with Parkinson's often have trouble swallowing and trouble with making their speech intelligible. Yet speech language pathologists are rarely offered by public systems to patients at home. In other words: a system that was supposed to give all Canadians equal access to publicly funded and excellent medical care has taken equal access off the table. A patient with money will be much better treated than a patient with none. Having to wait two years for proper care cannot be called excellent treatment by any measure.

The results of this survey were published on the Parkinson's Society website just before Parkinson's Month--April. ( As T.S. Eliot tells us in  'The Wasteland,' April "is the cruellest month.") You know a disease has clawed its way to the top of Charity Mountain when it gets its own Month.


And yet it would not be fair to say that the system failed my guy entirely. When the hospital got ready to discharge him, the home care system kicked in. I had experienced it with my parents, and had not been impressed. My mother had been assessed--the word they use--and reassessed, again and again after each of her visits to the hospital, starting with the first time she fell and broke her hip. And after each assessment and care period, her file would be closed. Each time she was admitted to hospital again, and about to be discharged, another care coordinator would call and asked me for permission to visit my mother who is not really able now to give informed consent. Each time this happened, the same questions would be asked. Help was assigned to my mother on the basis of a doctor signing off on a request for home care, because the doctor was convinced that care was needed. But the publicly-funded home care organizations do not take a doctor's order as anything other than the start point. They decide what will be supplied. My mother was eventually allowed 45 minutes a day of help to shower in the morning and be put to bed at night. But soon there were disagreements between the person who provides the bulk of her care daily,  paid for privately, and the publicly supplied personal service workers who came and went. I got phone call after phone call from my mother asking where the care worker was who was supposed to help her get to bed at night. Finally I figured out that it wasn't that they were always late, though that's how it seemed. In fact, the care coordinator had changed the schedule without telling us.

It also concerned me that strangers came in and out of her suite every day, that care coordinators I had never met asked me questions about her mind and her body that were invasive. Was this an irrational response on my part?  Yes and no. We are all trained from childhood to believe doctors and nurses will behave ethically--we trust that they will hold onto our embarrassing secrets. Mainly we retain this trust even when one of them goes off the rails and has sex with patients, or, in the case of Nurse Wettlaufer, kills eight while failing to kill six more. After all, they are professionals who can be sanctioned by their peers if they fail to do the right thing or actively do wrong. (Theoretically they can be sanctioned: in Ontario the colleges charged with these duties tend to be awfully gentle when it comes to punishments.) But what about personal service workers? What about social workers and occupational therapists and physiotherapists?  These are the people who staff the home care system. These are the people we rely on to deliver care that's cheaper than a bed in a critical care hospital whose beds are way too full of the aged and infirm. Personal service workers are not members of a professional body.  For the most part, they are men and women--often new immigrants to Canada-- earning just above minimum wage. My Mom's care and comfort had been in their hands for a while. And now it was my guy's turn.


First, a hospital physiotherapist visited him in his hospital room and took him off to a large room on the same floor that functions as a gym. Her task was to get him moving on his own again, to teach him a few tricks that would help him get out of chairs and find ways to walk when his muscles would not obey. Movement disorders are highly variable, but in general either the muscles do things the patient does not want ( such as shaking continuously and uncontrollably.) or, the muscles do not obey because something goes wrong with signalling, or feedback mechanisms, leading to problems walking, balancing, swallowing,  etc.  He did not have tremors, but he sometimes found himself momentarily unable to move forward, or sideways, or backward, unable to distinguish when he was fully upright or leaning. We have a lot of stairs in our house. The physiotherapist had him practice on a rudimentary staircase in the gym. He suffered waves of what he described as unsteadiness from time to time, but he did well on the stairs. He could use the banisters to pull himself up and to balance on the way down.  Then an occupational therapist talked to him and to me about our bathroom setup at home, the distance from bed to bath, the number of stairs, our kitchen. When we finally got him home, strangers called to make appointments to make sure we'd told them the truth. The care coordinator came to assess, followed by an occupational therapist  who came to assess, and who told us to get  a bench for the bath. She also ordered a different kind of walker for him that was more suitable for a man of his height. A senior physiotherapist came to assess: he decided that my guy was entitled to six sessions at home, the maximum offered.

Physiotherapists who looked young enough to be straight out of university came to the house once a week to help him. They were nice. They were sweet.  But after the sixth week, he was on his own. Yet he still needed help. We had been given a list of private physiotherapy places in the hospital. We found one close by, and paid for weekly sessions for most of what remained of that winter.Then a friend diagnosed with Parkinson's flew into town to go to a physiotherapy clinic that specializes in Parkinson's. We recognized the name of the place: it was on the list given to us by the hospital physiotherapist.   As our friend reported to a mutual friend, One Step Ahead Mobility was terrific.  We made an appointment for an assessment. The physiotherapist who did it turned out to be the same one who'd given us that list in the hospital. It was very expensive, but we figured it was worth the money, and for a time, it really helped. We also heard about Dancing with Parkinson's, a charitable program run out of a community church which charged only a nominal fee for an hour long program.The theory behind it is that people with Parkinson's do better if they  move to music and especially if they work in a group.

What can it hurt, we thought. To keep moving, you must keep moving, and better to move with music, right?

We signed up.

 By then we were beginning to adapt to the problems of disability. I learned to ask  about bathroom locations in restaurants before making a reservation, about whether there was a ramp or steps ( though he actually preferred stairs, the ramps made him dizzy on the way down). But over the course of the next year, we went out less and less, going mainly to physiotherapy sessions, Dancing With Parkinson's, to the homes of friends, or to see our children and grandchildren. Getting in and out of the house was hard. Getting in and out of the car was hard. We had a transfer wheelchair  for when he was in real trouble which he loathed. He far preferred to struggle with that walker, which could turn into a mini wheelchair if need be. We were beginning to get a sense of what "worse" meant.  Walking had become much more difficult quite quickly though we had been told that Parkinson's is a slow-moving disaster. His symptoms seemed to get worse month by month. We phoned the neurologist to ask what to do when the freezing moments became so severe and the unsteadiness so profound that standing became a problem. Take another Sinemet, it's fine, we were told. The daily load went to four a day, with a fifth taken if needed, and often we timed it to twenty minutes before a physiotherapy session on the theory it could help him move well enough to get value from it.  
My guy had no appointments with the neurologist until the end of the summer of 2017. He was unsteady enough, and overheating was such a concern, that when I brought out a new book that June he stayed home. It would have been too warm for him in the pub where the launch was held.  All the while we waited to hear from one of the movement disorder clinics that they finally had a spot for him. We waited in vain.

We continued to plow through the literature online, especially theories on causation. We found  papers by an Italian neurologist who believes that Parkinsonian symptoms are caused by the inability of afflicted patients to absorb thiamine, a B vitamin, through the gut. Thiamine is vital for many neurological functions. The neurologist had published papers on the experiments he'd done on his own patients. He gave them mega-doses of thiamine by injection and saw very significant abatement of symptoms. He insisted that careful history-taking had shown him that most of his patients had experienced gut issues long before their movement problems appeared.

My guy had experienced gut issues before his movement problems appeared. There was something like hope in this!

I read the papers with excitement--though I had a niggling concern that the Italian neurologist had used no controls in his experiments, so his work was anecdotal which meant it could be right, but it could also be dead wrong. Look on the bright side, I said to myself. Can't hurt to try the thiamine.

I wrote to the neurologist: I asked him how much thiamine we needed to get into my guy's bloodstream to affect his symptoms. He told us we needed 1200  milligrams per week. I realized that it would be a hard struggle to get to our doctor's office weekly for injections, so I decided to look for an alternative delivery system. And I found it. Mosquitoes hate the smell of thiamine so it is now available in patch form to ward off mosquitoes as a green alternative to DEET. I could find no one in Canada making thiamine patches but we found a Colorado-based company selling them on Amazon and ordered a few direct from the company.

It seemed to work. He improved.

The Dancing With Parkinson's sessions were held in a large auditorium but the building was old. No air conditioning. As the summer days warmed up, my guy was less and less able to participate. I would do errands while he was dancing, only to come back to find him collapsed in a chair, unable to continue. He was overheating. One day  he was so wobbly I had to  push him from the building on his walker because he could neither stand nor walk. We stopped going.

Though we used the patch carefully, his symptoms became worse. He also had an allergic reaction to the patch glue.

I wrote to the Italian neurologist to ask if we should up the dose. I explained that his symptoms seemed to be getting worse rather quickly.

It might be Multiple System Atrophy, he wrote back, and for that you need a much larger dose of thiamine, about ten times larger.

And then he stopped writing back.

What's Multiple System Atrophy? I wondered.

We went to see the family doctor for a regular appointment. We need to get moving on referrals, we said. It's been 18 months since the diagnosis and we still haven't heard a thing. And what's Multiple System Atrophy? She explained it's exactly what it sounded like, many systems failing all at once. She offered to have the senior physician on her staff write to my guy's neurologist asking him to do the referrals on an urgent basis. She offered to try and find us another neurologist, in particular she would try to get a friend of hers with a position in another hospital to take over his care. She also said she would speak with our less than helpful neurologist herself and offer to provide him with research about interesting clinical trials that might be appropriate.

Fine, we said.

But it was not fine.

In fact, it did not end well at all.