Friday, 20 April 2018

Sick as a Dog: Field Notes from a Medicare disaster

You should know, going in, that in my family medicine is considered the honorable profession. My father, a physician and surgeon, once had a lot to say about what would go wrong with a medical care system run by any government. He fought against the imposition in Saskatchewan of what was first described as a "universal prepaid medical care insurance" scheme. This deceitful characterization was offered to the public by Tommy Douglas's CCF government to allay fears that a socialist revolution was afoot. Their plan was to create a replicate of the British National Health system as enacted by the British Labour Party more than a decade earlier. Their motives were pure: they believed it was a moral imperative that everyone should have good medical care regardless of their circumstance and Britain's National Health was the public policy model they chose to employ. However: it didn't fit Saskatchewan. My father and his doctor colleagues, several of whom had immigrated to Canada to get away from the National Health, objected to becoming employees of the State. My father thought governments should not squirm their way into the middle of the doctor/patient relationship. He believed that engendering trust, being worthy of trust, are more than ethical requirements, they are fundamental to the actual practice of medicine. That trust helps patients heal and its creation and maintenance is vital to the physician's art. He never walked into a patient's room in hospital without a silly joke, never spoke to a patient with a joking demeanor if he had to convey bad news. And so his patients did trust him, and though many could not pay him, they loaded him up with cookies and turkeys and other gifts every Christmas and called him at all hours of the day and night. One of his patients even insisted that I must visit him in hospital when Dad was out of town: he just wanted to hold my hand and hear me say that my father would return. He was reassured by being able to touch the flesh of the flesh. In those days, no one could look up their symptoms on their i-phones and second guess every diagnosis and treatment. Doctors were still mainly men, and in some quarters, still seen as demigods -- with real powers.

As a man who'd lived through the Depression and WWII, my father had a jaundiced view of governments' trustworthiness. So he became a leader of the Saskatchewan Doctor's Strike which forced the government to back off its preferred system in favor of one that permitted fee-for-service, allowing patients to hire or fire their physicians while the government footed the bill, and allowing physicians to opt out altogether if they wanted to. After that form of Medicare became law, first in Saskatchewan and then across the country, my father warned that demand for medical services would eventually dwarf all other government expenditures, consuming up to half of provincial budgets, though the health care delivered would be wanting. Why? Governments would try desperately to hold the line on climbing costs, and the bureaucrats would inevitably blunder over which costs could be cut safely.

Here we are, almost 60 years later, and the Canadian Medicare system, the most revered of all government programs, has been transformed from a wonderful idea--that Canadians should have-cradle-to-grave health care of equal quality across the country without reference to the ability to pay-- into a system of conflicting systems rapidly losing public trust while hoovering up to half of most provinces' budgets.

What will follow over the next few weeks are field notes from close encounters with this system in the beating heart of it--the most populous part of this country, downtown Toronto. I am going to tell you the story of the care received by a brilliant man who enjoyed more than fifty years of being the strongest, brightest, most interesting man in any room, but who now struggles to retrieve his former self from a mystery illness.

Everyone who has become sufficiently ill to end up in a Canadian hospital will have a similar tale. Hospitals have become places where certain facts must be endured, and the stories they engender get widely shared. Hospital rooms usually have at least two beds, unless a patient has private insurance permitting a private room -- a space assigned in a hospital only if is actually available and these days, with downtown hospitals operating at 105% of capacity, mostly not. This is not a bad thing: being alone while ill is definitely not a good thing. Most people thrown into hospital rooms together help each other, entertain each other, learn from each other, watch each other's backs, call for help when their roommate can't. Most roommates get to know each other quickly, sharing hard facts about the states of their bodies and minds, and sharing these facts as well with each others' families. How not? They are all crowded into a space divided only by thin privacy curtains which provide no privacy at all. There are exceptions to such communal aid, however. More on that later.

And so: medical care delivered in an acute care hospital, a rehab hospital, a long-term care facility, or at home, is by definition intimate. Nurses, nursing students, personal support workers, physiotherapists and occupational therapists, speech language pathologists, doctors, medical students, and especially cleaners all have to deal with: eruptions of patients' bowels and urinary tracts and their unpleasant stoppages; the spillage of blood; the regurgitation of wretched hospital food; patients' inabilities, including the inability to speak and consent to care, to clean themselves, to rise from their beds, to sit unattended, or even to be conscious. Patients have to deal with: nurses who are exhausted from 12 hour shifts where the only rest is sitting at the computer station; the mistakes made by the kitchen or the pharmacy which go uncaught thanks to a shift change: too few helping hands, too many needs, and too much time spent in wet diapers or worse calling for someone, anyone, to come to the rescue; doctors who are third or fourth year residents who know less than they think but assert their authority anyway; physiotherapists who  must watch their patients lose ground because there is no budget for them to work on weekends; senior physicians who don't respond to requests for information so other staff must be chased for basic facts (what does this medication do, what are its side effects?) and to correct the simplest errors (actually he doesn't have high blood pressure, or didn't until he came here). Hospital corridors sport security guards sitting outside of rooms where patients, out of their minds with delirium, or suffering one of the many forms of dementia, howl and bellow for help they have forgotten they just had. It's horrifying how quickly one's heart hardens to their cries.

Everyone who walks into a hospital becomes a part of someone else's story. One day, a few months back, I was in a hospital elevator when an older woman in a wheelchair rolled in, pushed by a helper. The woman had a great many tats, a few straws of hair tied in a bristling knot on top of her head, gaps instead of teeth, all attesting to an interesting life. She seemed to be in a state of existential terror. 

 "Which floor would you like?" I asked.

"Lady, do you think I'm going to rot in hell forever?" 

"Of course not," I said. 

"Oh thank you," she said," thank you. You're sure? "

Few have the time or energy to write about what happens when this system swallows them up as a patient, or as a family member of a patient. That is where journalists like me come in. It's our duty to find that energy, to take that trouble, otherwise nothing gets fixed until eventually nothing works. I am not going to bore you with statistics and arguments because both fail to show on how things really work: an actual human story lights the way to  truth. And this particular story touches on almost every aspect of our current system. It has moments both magnificent and awful, punitive and graceful. It reveals grossly inefficient, costly, error-ridden decision-making cheek by jowl with brilliant insight. If this blog were a podcast, the background score would be something dire from Stravinsky-- lots of energetic violins scraping at your nerves, engendering the feeling-- the knowledge-- that chaos is pounding at the door, on the verge of  finding its way in.  

Chaos might have been averted with proper planning by bureaucrats and their political masters long ago. Way back in 1996, the number one bestseller in Canada was a book by demographer David Foot and his co-author Daniel Stoffman called Boom, Bust and Echo. Foot made it clear that the Baby Boom generation would soon crash upon the gates of all government systems. The book made it clear that as the Boomers reached age 65 en mass (now!) they would develop or acquire a host of diseases and frailties, creating a tsunami of demand for health services that would last for at least another 30 years. Many Canadians read that book: it was on the bestseller list for two years. And its predictions have became facts. Acute care hospital emergency hallways and even ward hallways are now filled with Boomers lying helpless on gurneys, suffering from flu, broken hips, acute heart disease, strokes, diabetes and other chronic issues too numerous to list. The necessary beds to care for them have not been supplied. The necessary staffers to manage those beds have not been supplied either thanks to years of cutbacks at medical and nursing schools to save operational money (those rising fees for service!). Capital dollars have been spent, yes, and there are lovely atriums in some leading teaching hospitals as well as shiny new diagnostic machines and endless rows of computer stations to keep track of all the new information spewed forth. However, one still cannot get health information easily transferred from hospital to hospital unless someone walks over a disk or a thumb drive or a piece of paper. And those new machines and plaqued buildings cannot substitute for knowledgeable staff who change sheets, wash, feed, and medicate patients too sick to do for themselves.  They do not substitute either for the healing powers of trained hands and minds. Acute care hospitals are also jammed because governments failed to prepare sufficient rehab hospitals to provide after-care for patients discharged yet still too ill to return home. The rehab hospitals are jammed because home care is insufficient, so patients cannot safely go home from rehab, though they must, and they do. The rationing of home care is why, so often, patients end up back in acute care.  Again. Long-term care beds are insufficient to meet demand, which further backs up both the rehab hospitals and the acute care beds. There are stoppages at every turn.

A home care system has existed in Ontario in one form or another since the early 1970s. Personal support workers until recently were dispatched by non profit agencies under the control of regional organizations called Community Care Access Centers according to how much time an assessor concluded that each patient was entitled to. The amount of care determined by the assessor often differed radically from what patients actually needed, and  it differs still. In some circumstances, elderly patients are offered help in 15 minute increments, barely enough time for a frail older person to turn around and say hello. Turnover of personal care workers is rapid, meaning there if often yet another new face presenting itself at the door, and for older people suffering from memory issues, that can be very hard. One CEO of one nonprofit providing such care told me that her own sick mother  was assigned only two hours of care a week though she needed help "24/7." Personal support workers who provide this care are especially few and far between in rural communities and can take hours to get from one home to another, so there is a great gap between the care available in urban settings versus rural ones. The old and frail, needing help with the toilet, shower, and dressing, often have to settle for a shower only three times a week managed by a PSW who is rushing to get out the door to the next client within minutes of arrival. 

Ontario's health system is now carved into 14 regions administered by LIHNs--Local Integrated Health Networks. The former Community Care Access Centers merged with these LIHNs last year. LIHNS sort of include hospitals, both rehab and acute care, as well as long term care facilities. But in Ontario, hospitals still retain their own boards so there is a struggle for power and control between LIHN and hospital boards. Yet this reorganization was supposed to lead to greater efficiency, less bureaucracy, lower costs, and therefore better service. As the story I am going to tell will show, very little of that has come to pass.

And in fact none of it could come to pass. Home care gets only 5% of the $63 billion dollar Ontario health budget, though demand for it has shot up by over 40% in the last five years and will continue to grow as the Boomers age. The non profits which provide this service get an annual budget from their LIHN which does not change though needs may rise and fall. A bad year for flu drives up needs. If by chance these companies don't use every dollar allocated to them in a given year, the surplus is clawed back, and the next year's budget, which is based on the previous year's spending, will be smaller. So these companies behave as bureaucrats do. Service is generally rationed in spring: if demand falls, services to patients become more readily available in the autumn. In other words, it's your bad luck luck if you need help in April. With minimum wages in Ontario going up to $15 per hour, and PSWs paid about $16 an hour, and with a union now in place, the first labor negotiations between unions and these care entities are headed for trouble. The LIHNS have no way to get more money for these services other than from government. The non profit companies are locked into annual contracts with the LIHNs. The personal support workers are grossly underpaid for the skills they have and the work they do and mainly get no benefits. So we're looking at the possibility of a strike. If there is one, who will take care of the hundreds of thousands of Ontarians relying on this care?The emergency wards of acute care hospitals, that's who.

So no surprise that everyone, from PSWs to their supervisors, from LIHN assessors to an experienced CEO of one non profit care provider described the whole system to this journalist using the same words-- these words.

 "It's a disaster. "

Next week: chapter one.

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