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?
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