Author of Dying to Be Seen wants book to start discussion about privatization, Medicare

I vividly remember my first day. Alarms sounded erratically. Linen carts and garbage cans were overflowing. The waiting-room doors were stuck in the open position. The staffing board had multiple circled vacancies.

Staff were running about as if invisible to each other. Others darted to computer stations, clicking through screens of information and flashing icons. Phones rang asynchronously. Porters circuitously shuffled patients on stretchers. On the periphery, visitors and families wandered aimlessly, looking at wall signs. Others sat motionless at curtained bedsides.

Alarming EKG monitors expelled rhythm strips that dangled from the monitors onto the floor. The dull hum of casting saws murmured in the background.

On the minor treatment side, orphaned in-patients lay in wait — many of them for days. Paramedics lined the back hallway, guarding their unloaded stretcher patients like sentries. Here they waited for any sign indicating that they could place patients into beds and attend to other calls. The department was illuminated by blinding overhead lights.

I soon learned this was a typical day in a busy city ER.

The word picture painted by Cathy MacNeil in the third chapter of her new book Dying to Be Seen: The Race to Save Medicare in Canada isn't describing something happening in a Nova Scotia emergency department today.

It was MacNeil's first day as health services manager at the Dartmouth General Hospital's emergency department.

The date was Jan. 16, 2006.

A registered nurse since 1976, MacNeil had worked as an evening nursing supervisor at the hospital for six years prior to taking on the emergency department role.

In an interview, she said she was keenly aware of the many issues and concerns in the system. But it was when she started her new job in the emergency department that she realized "things were going nowhere fast."

"I still think this is going on, but as someone who was never shy to speak out about the faults of the system, certainly as a manager, sometimes that was shut down. So what you got was, ‘Well, you’re negative. We know things are bad, but what's the upside,’" MacNeil said.

"And sometimes I would have to say, ‘Well, I have 16 patients, some of them five days on stretchers in emerg and a hallway full of ambulances and no staff. So, I fail to see the upside to that, right?’"

After watching a Nova Scotia Government Employees Union (NSGEU) video with nurses expressing concerns about the health care system, their faces blurred and voices disguised to protect their identities, MacNeil vowed when she had freedom to speak openly, she’d write a book for funders (taxpayers). She wanted people to know what was happening in the system and what must be done to fix it.

"The work was for the people who go to work every day, who don't see tax dollars because it goes to fund the system, and then when they really need the system, it's not there," MacNeil said.

Although the fall of emergency services across the country should have raised alarm bells and led to system support, reform, and funding, MacNeil said governments chose instead to hold the line on spending and cling to the same ways of doing things.

"With health care managers at the mercy of politicians, the ability to carry out transformative change remains impossible," she wrote.

"Since improving care isn't the true priority of the system, the plight of emergency services remains unchanged. Canadian emergency departments continue to be unfairly forced to carry the weight of a collapsing health care system upon their shoulders."

After four years of research and three and a half years of writing, MacNeil's 332-page book was self-published in January. Although she considered the traditional publishing route, MacNeil decided against pursuing it. Passionate about countering the privatization narrative with an extensively researched product, she said she was instead determined to get it out as soon as possible upon completion.

"For the most part nurses have advocacy stamped into their DNA. Sometimes you think, ‘OK, well, I’m going to research this. If what I’m thinking or seeing isn't accurate, it will come up in the research,’ and the complete opposite of that happened to me," MacNeil said.

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"Everywhere I looked, if anything my sentiment about how the system is funded, about how political expediency factors into decisions made by all the ministries of health across the country? If anything, with the facts and the data, it just reinforced that in spades for me."

The Dartmouth resident currently teaches continuing care assistants at a career college and supervises their clinical care placements within long-term care. In addition to medical-surgical and critical-care nursing, her nursing career has included health administration that encompassed nursing supervision and management portfolios.

Despite persistent warnings from patients, doctors, families, and patient advocates and stories of sub-standard care and poor patient experiences in emergency departments across the country, MacNeil said public outcry was met with "callous indifference" and no political party is free from blame.

Equipped to function well when the health care system is reasonably funded, robust, and flexible, MacNeil said the collapse of the country's emergency departments is a "prologue for the disintegration of Medicare."

"As every measure of emergency department efficiency began to decline and stories of sub-standard emergency care grew, governments looked the other way. When government response did occur, it focused blame solely on the emergency departments instead of acknowledging the problem as part of a larger system collapse," she wrote.

"Many provincial solutions were knee-jerk "responses" that were void of any long-term planning. Consequently, more money and resources were channelled into the wrong directions for the wrong reasons."

MacNeil also highlights health care system reviews/reports in Nova Scotia over the years. This includes the 2006-07 Provincial Health Services Operational Review (PHSOR) report by Corpus Sanchez International in which she participated.

The province accepted all 103 of the report's recommendations in 2008. In a media release they pledged to begin implementing them "over the next three years."

"Long after the dust had settled on Dr. Ross's 2009 code orange, studies and reviews of emergency services persisted. With repeated stories of paramedics lining the hallways of Nova Scotia emergency departments, the US-based Fitch Report was ordered in October 2018 and released two years after its original delivery date in March of 2021," MacNeil wrote.

"This report cost taxpayers $145,000. It came with sixty-eight new recommendations, many of which bore an eerie resemblance to the Corpus Sanchez recommendations of 2008."

Several paragraphs are devoted to MacNeil's experiences in the early 2000s. At the time, she said policymakers’ discourse was fuelled by buzzwords, clichés, and a "toxic positivity" of corporate strategies. She recalled being required to attend costly programs aimed at improvement while the department's front lines "floundered."

In one instance, she and her fellow managers were given "stress orbs" to squeeze when they felt overwhelmed. She wrote:

There was no room for critical thinking or negativity if you signed onto the promise because we had committed ourselves to this corporate "love-in," where we would pursue "our shared human experience." We alleged to be one big happy corporation that promised "safe" "quality care."

Except there was one serious problem. The promise was not grounded in any kind of reality. While it looked good on paper and sounded idyllic, it was never a reflection of the struggles front-line staff faced every single day.

The promise represented one thing: It was an affirmation of fealty to the propaganda being circulated. As time ticked on and pressure within the system mounted, the entire concept eventually went down in a large ball of flames, taking with it every last tax dollar that supported it. Nirvana never arrived.

MacNeil points to many examples of wasteful spending of tax dollars at both provincial and federal levels of government, imagining if those funds had instead been funnelled into health care. She also is persistent in her belief that Canada's publicly funded system can and must be saved.

"I want people to understand that this issue affects every single one of us. And if it hasn't yet, it will," MacNeil said.

"Whether you wake up tomorrow and you have a young child that's had an injury, whether you’re 50 and healthy and you’re great and you wake up and suddenly you have chest pain or you have a pain in your abdomen and you’re diagnosed with something terrible."

In several messaging threads with former colleagues, MacNeil said she's hearing "absolute disgust" from retired nurses and nurses leaving the system. They’re frustrated and feel that no one is listening or taking their long-voiced concerns seriously.

"Nobody that I really know has a lot of faith that people in positions of power will really listen to what the people want. And I am one of them, hence writing the book," she said.

"When I talk to nurses…the responses are ‘They’re just not going to listen,’ and ‘It's because somebody wants the numbers improved to get re-elected’ or ‘Somebody wants this done to make their political position look better, but they truly don't listen to frontline people.’ And I think most people still believe that."

Described as a "clarion call for change," the book spans the origins of Medicare through to the present day and includes the pandemic's impact.

"Covid-19 not only makes the case for the dismal state of care within nursing homes. It also demonstrates that when it came to being pandemic prepared, Canada's hospital system was lacking," MacNeil wrote.

"Canada's acute-care system was also depleted by years of defunding — in terms of pandemic planning, personal protective equipment, ventilator capacity, and staffing levels."

The book highlights sentinel events (including Dr. John Ross's 2009 code orange call at the QEII Health Sciences Centre). It also looks at past and more recent tragedies, including that of Nova Scotian Kelly MacPhee. Despite living six minutes from hospital, he died in September 2020 while waiting for an ambulance that took 40 minutes to arrive.

The book's title, Dying to be Seen, is a phrase referenced in her conclusion and relates to Brian Sinclair. The Indigenous man's death in a Winnipeg emergency department in 2008 led to a provincial inquest. As noted in a November, 2013 Canadian Medical Association Journal article, coroners estimated that Sinclair had died two to seven hours before anyone noticed.

"Brian Sinclair could never have guessed when he was a young boy growing up near Sagkeeng First Nation northeast of Winnipeg, that he would eventually become the face of the disintegration of the Canadian public health care system," MacNeil wrote.

Among the statistics and stories, she also stresses the urgency of immediate action to save public health care from creeping privatization.

"I want people to analyze the data as objectively as they can to understand that the movement towards privatization will destroy Medicare as we know it," MacNeil said.

"And I want them to harness some energy and passion for Medicare and get out there and mobilize. Whether it's two people, five people, six people, or whether it's constantly writing to your MLA."

MacNeil said her book also offers evidence-based solutions to fix Canada's public health care system before it's too late.

On her website, she writes that the system is under attack. Defunding, deregulating, defrauding, and deliberate disintegration have all manipulated Canadians "into despising their once-beloved system as unsustainable, unfixable, and cost-prohibitive."

The reason? Neoliberalism, she said, describing it as having "the rescue medication locked within its assault armamentarium — privatization." She wrote:

The last stage of the takedown has begun and the slow but steady infusion of privatization now flows unobstructed through the veins of Medicare. Dying to be Seen lays out the deleterious effects of such an attack and how it is impacting every stakeholder in Canada's Medicare system.

For health care policymakers, the book outlines the urgency of the constructive, evidence-based action that is required to save the system. For administrators, it sheds light on why the current solutions have failed. For law makers and governments, the book is an urgent warning to rearrange the status quo to divorce political expediency from sound policy or suffer the dire consequences.

For average Canadians, it is a call to arms to save Canada's universal, egalitarian Medicare program from sliding into the cruel, profit-driven system that bedevils their neighbours to the south.

The book also delves into the costs, performances, and outcomes of the US system where physicians are weighed down in administrative red tape and costs and where unnecessary testing is often conducted to avoid litigation.

MacNeil points out that patient care isn't always based on what a physician thinks is best practice or evidence-based. Instead, she wrote, they’re often at the mercy of insurance executives and what they deem financially acceptable.

"The health care market is an inexhaustible one. There are billions of dollars in profit to be made if the public system collapses. Just ask the corporate health care profiteers in the US. As long as there are people, they will need health care," MacNeil wrote.

"If sickness, disease, accidents, and pandemics prevail, people will need to be treated. Big pharma, health care-insurance conglomerates, and their profiteers, view health care as an infinite source of wealth. Neoliberalism supplies the oxygen for this conquest. Will Canadians allow capitalism to dig Medicare's grave?"

MacNeil notes the personal bankruptcy rate related to medical costs in Canada is currently close to zero. In the US, more than 60% of personal bankruptcies are related to medical-expense costs or loss of work related to illness. She wrote:

In study after study in medical journals, blogs, the Bureau of Statistics, and public health journals, the facts are indisputable. The US system of health care remains an outlier, performs poorly, and costs more than any of its universal single-payer counterparts.

The level of corporate control and abject profiteering is obscene. It is a system based on runaway greed without morality. It is responsible for the wholesale slaughter of not only young diabetics, but the elderly, the poor, the disenfranchised, the underinsured, the uninsured, thousands of children, those with chronic debilitating diseases, and millions of hard-working, middle-class Americans who are paying soaring premiums and deductibles.

The government of the United States should be more worried about the deleterious domestic effects of this health care plutocracy than any other foreign distraction. It is an enemy like no other. It kills Americans methodically and consistently on home soil.

Referencing American scholar Noam Chomsky with whom she corresponded via email as she wrote her book, MacNeil said the only way to save our publicly funded health care system is from the bottom up through unrelenting community pressure.

That's why she devotes space in her book for the backlash that ensued in New Brunswick in 2015 when Brian Gallant's Liberal government tried to change how seniors were assessed for nursing home care.

From the spring through to the fall of that year, seniors, advocates, and families showed up "in droves" to oppose the new policy at rallies and meetings across the province.

By September of 2015, the government reversed its position. MacNeil believes it was a result of the intense community pushback.

"I think we underestimate our ability (as funders) because we’ve been beaten down into submission and because we feel like we have no control because of the events that have happened. But…we really do control the purse strings," she said.

"In that sense, it's our money, and so I think we have to take a stand and say, look, we’re the people paying the bills and overwhelmingly, this is what we want. I think if we keep the pressure on and if there's enough people leading the charge — which I am more than willing to do — it can happen. But you have to have people follow you into battle."

Addressing inflationary pressures facing Canadians today, MacNeil said it's impossible to imagine also having to pay out of pocket for things like x-rays or bloodwork. Her dream is for every Canadian taxpayer to read her book and demand change.

"Our tax system in this country is reflective of the fact that it's supposed to be supporting a public health care system," she said. "You and I both know they are not going to roll taxes back. So then we will have this current tax rate and be paying out of pocket."

Although the touted benefits of health care privatization are a hard narrative to counter as proponents across the country continue clamouring for it, MacNeil said the data and evidence-based research more than make a case for saving the publicly funded system.

"It speaks to ultimately what kind of a society do we want? Do we want people in the south end of Halifax walking into a private clinic and getting whatever they want, even if they’re not the sickest people, and the people who are the sickest having their public system further eroded by being surrounded by private entities," MacNeil asked.

"I really don't envision that as a Canada that anybody wants. That's not what we’re about. It's not what we were ever about. But it seems to be going that way and now's the time to get out in front of that."

Yvette d’Entremont is a bilingual (English/French) journalist and editor, covering the COVID-19 pandemic and health issues. Twitter @ydentremont More by Yvette d'Entremont