Long-term care, part two, life can be worth living

Hello Flatlanders,

Christmas is almost here, and I hope you are able to enjoy it despite the new Omicron variant complicating holiday travel plans.

I was planning to go to Regina tomorrow to see family until I got a phone call telling me I was a close contact of a confirmed COVID case, so I will spend my holiday time waiting for a hopefully negative test result for myself.

But there is good news for The Flatlander

Last week there were 277 subscribers, and this week, this email will be going out to over 790 people, so The Flatlander continues to grow. I launched The Flatlander five weeks ago to a small audience of 122 readers. My goal is to have 1,000 subscribers by the end of January, so if you find this email interesting, please help spread the word by forwarding this message to a friend.

Long-term care, part two

A subscriber was kind enough to take the time to write to me and politely mention why my subject line last week was troubling:

I don’t how else to say this, but the last newsletter (subject line: Long-term care? Take me out behind the barn instead) was deeply unsettling to me as a disabled person and – quite frankly – that framing is heavily ableist.

The vast majority of those living in long-term care are disabled – whether they identify as such or not – we’re in the midst of expansion to bill C7 that makes MAiD [Medical Assistance in Dying] an option pushed on disabled people rather than something they get to select (often due to economic hardship and lack of structural care) . . . I, like many disabled people, have people come up to me regularly and say to my face that they’d rather be dead than disabled. While I appreciate that this wasn’t your intention, I think your previous subject line reinforces that idea.

Punctuation matters

The subject line from last week’s email was part of a quote from a retired Saskatchewan hospital administrator, which was later noted. But as for the subject line, MailChimp, which I use to send these emails, flagged the quotation marks. Apparently, if you use too much punctuation in a subject line, the message will be marked as spam, so it removed the quotes, making the subject line regrettably more punchier than I intended.

The reader has a valid point, as we will explore in this email. Poor conditions of long-term care, coupled with negative attitudes towards the disabled, can lead to an increase in people opting for medically assisted death when they otherwise might not have.

The retired hospital administrator is not alone in his thoughts, because of the horror stories that come out of long-term care.

A 2019 poll from the Nationwide Retirement Institute found that over 50 per cent of adults over age 50 say they would rather die than live in a long-term care home.

People weighed in on a discussion on Quora about if they would rather die than go into long-term care–the majority of the people who responded said yes.

In another Quora discussion, where doctors and nurses wrote about the darkest things they’ve heard a patient say, a long-term care worker said it was residents asking to die.

So this week I thought I would do a closer look at the attitude towards long-term care homes and why people feel they would rather be dead; and how disabled rights activists worry that this may lead a disproportionate number of disabled people, especially those who are Black or Indigenous, opting for medically assisted deaths.

The passing of Bill C-7 in March allows people who are intolerably suffering to access medical assistance in dying. This includes people who are severely disabled and/or are in severe chronic pain. People with mental illness may get the same rights as early as 2023.

As mentioned in last week’s email, people who live in long-term care can face inhumane living conditions that include abuse, or because of staffing shortages that lead to inadequate care, causing falls, bedsores and malnutrition.

An Ontario case that activists like to point to is the medically assisted death of a 35-year-old in a long-term care home that was in a horrific state; photos released to the public show urine and feces on the floor of his room, because of the lack of appropriate care.

Inadequate health care disproportionately affects people of colour and/or the disabled

The Saskatoon StarPhoenix wrote an article on how those working within and outside of Sask.’s health-care system are fighting systemic racism, which is worth a read, and Saskatoon Tribal Council Chief Mark Arcand said he would like to see an external investigation into systemic racism in Saskatchewan’s health care system.

And here is a paper from the University of Manitoba about being “Ignored to Death: Systemic Racism in the Canadian Healthcare System,” which recalls the death of Brian Sinclair, a 45-year-old Indigenous man who died in his wheelchair at the emergency department of Winnipeg’s Health Sciences Centre in 2008 while waiting 34 hours to be seen for complications of a treatable bladder infection; however, in 2014, a judge ruled that issues of racism, poverty, disability, and substance abuse were beyond the mandate of the inquest that followed, investigating the death.

Recent forced sterilizations another example of racism

The U of M paper also refers to incidents of sterilization of Indigenous women in Saskatchewan.

In 2017, the Saskatchewan Regional Health Authority reported the documented experience of 16 women who were forcibly sterilized between 2005 and 2010.

A Senate Committee published a report this summer called Forced and Coerced Sterilization of Persons in Canada, which refers to a forced sterilization in Saskatchewan of an Indigenous woman in December, 2018. The report also references to 12 sterilization cases from Manitoba.

The Senate committee questioned whether other marginalized groups have been forced or coerced into sterilization and concluded that a further investigation was warranted after preliminary evidence identified poor women, women living with disabilities, women of colour, women living with HIV, intersex persons, transgender persons and institutionalized people having been subject to forced sterilization.

The committee recommended further study into the matter to identify solutions to stop the practice.

Life is still worth living

Disability activists are concerned that vulnerable people will be pressured by societal attitudes, coupled by lack of support services and previous abuses experienced in the health care system, to seek out medically assisted dying.

The Council of Canadians with Disabilities said those who are newly disabled might opt for a medically assisted death instead of giving themselves time to adjust to a new life.

“Much of what is ‘known’ about disability in the public domain is drawn from myth, misconception, fear and ignorance. Disability is not a fate worse than death. Why is it easier to access medical assistance in dying in many jurisdictions than supports and services to live with dignity,” wrote Nancy Hansen, a professor and director of the University of Manitoba’s interdisciplinary master’s program in disability studies in an open letter to Parliament about Bill C-7. “I am a disabled female academic. I have four university degrees. I am very happily married and I have a great job.”

The history of long-term care on the Prairies

In the early 1980s, when the Canada Health Act was being written, long-term care was not included as an “insured service,” or as CBC put it Leaving out long-term care was medicare’s original sin, even though it was documented that the quality of care in long-term facilities at the time was “grossly inadequate.”

Manitoba – a disorganized mess

Long-term care initially wasn’t thought about under the health care umbrella in Manitoba, and the industry developed both in the private and non-profit sectors in the 1950s and 60s. The cost to access care was prohibitively expensive, and the province would go on to create a provincial insurance program to assist with costs.

The lack of provincial planning when it came to long-term care meant that facilities were of different ages; offered inconsistent levels of care; and were funded in different ways.

In 1964, legislation was created to regulate new construction of long-term care. Most of the existing care homes did not meet the new building standards. Overcrowding, insufficient heating and light and inadequate supervision and treatment were found to be problems in a number of Manitoba’s private care homes.

In the 1970s, under the leadership of NDP Premier Edward Schreyer, the province tried to gain control over the for-profit homes in an attempt to make sure long-term care could be provided on a non-profit basis going forward.  However, increasing the number of long-term care beds was not a priority and placement was prioritized for high needs cases.

After the NDP were defeated by Sterling Lyon’s Conservatives in 1977, the private sector was incentivized to build new long-term care facilities to increase the number of beds, while at the same time closing down some for-profit sites because they violated the health and safety standards laid out by the Manitoba Health Services Commission.

By 1980, 30 per cent of the beds were in for-profit facilities. Later a government-commissioned study by Connie Curran revealed that in 1992 and 1993 the hourly wages of Winnipeg personal care workers were lower than in other major Canadian cities.

To learn more about the history of long-term care in Manitoba, I recommend reading Pursuing Different Paths in Long-Term Care: Manitoba, Ontario and the Politics of Commercialization, which was written by Amy Twomey as a PhD dissertation.

Saskatchewan – An overabundance of riches

Back in the 1970s,  there were set requirements for nursing hours in long-term care homes. Residents had private rooms and frequent air changes via the HVAC system.

The NDP, under the leadership of Premier Allan Blakeney, became concerned about overspending in long-term care, so they hired an outside consultant–Extendicare.

A 1976 report from the company said the government needed to cut back on an excess of staffing to reduce costs, reduce air changes, and make the hallways narrower so room sizes could be increased to fit up to four beds.

Over the years, Extendicare’s recommendations would be implemented.

In 1984, under Premier Grant Devine, leader of the Progressive Conservative Party, Extendicare began operating for-profit homes in the province funded on a fee-for-service basis.

 Photo of the week

Five Saskatchewan stories you may have missed

1. Peg of Peg’s Kitchen in Regina dies a week after tragic fall – Peg Leippi died as a result of serious injuries related to a suicide attempt. Her family was open about the story because they wanted to increase awareness about mental health and the impacts of the pandemic on local business owners.
2. SaskTel begins deployment of 5G wireless network – Customers in parts of Regina will be the first on the network, with the service expanding throughout the city and Saskatoon in the spring of 2022.
3.  Methane emissions reduced by nearly 50 per cent in Saskatchewan – A recent report on emissions found that the reduction in methane was the equivalent of taking more than 1.1 million vehicles off the roads.
4. Changes to Sask. trespassing laws come into effect Jan. 1, will require permission to access land – Anyone who wants to participate in any recreational activity on private property in Saskatchewan must first get permission from the owner.
5. Public health shuts down Saskatoon meat processor after rodent contamination – All food has been seized and secured by the SHA

Five Manitoba stories you may have missed

1. Wet winter needed to avoid troubling spring in Manitoba –  The province’s infrastructure minister said there may be some serious conversations on water conservation if there isn’t enough snow over the winter.
2. Tap intentionally left running in Winnipeg city hall washroom for over a year as employees work from home  – Reduced occupancy in the building, because of people working from home, has led to more stagnant water in the plumbing, so a tap was left on to decrease lead traces in the water.
3. Manitoba Metis Federation launches court fight over hunting rights – A statement of Claim in Manitoba’s Court of Queen’s Bench asks that Manitoba Métis citizens be permitted to hunt moose in the Duck and Porcupine Mountain areas of western Manitoba.
4. Brandon’s former Greyhound bus station goes up in flames  – Police say the station was vacant and appeared to have been used by people seeking shelter. Investigators believe the fire may have been started by someone who was trying to keep warm.
5. COVID testing volume hits high in Manitoba amid concerns of limited testing capacity –  Testing volumes are the highest they’ve been since the beginning of the pandemic. Close to 3,500 tests were performed Monday, and the province’s test positivity rate has increased to 8.6 per cent.

Thanks for reading and Merry Christmas.
Kind regards,
Kelly-Anne Riess