Senior Toronto blog

June 30, 2020

Home care in the crosshairs

Now that we’ve learned the gruesome facts of life in long term care, many of us seniors are more determined than ever to keep out of those hellholes, and age at home with the support of home care. But can we?

Ontario home care is a mare’s nest of stresses and strains. Unlike hospital care, it isn’t insured by the Canada Health Act. It’s a provincial responsibility, and the provinces invest some of their transfer money in it. How much? What’s covered? Good luck finding out. For years it has been administered in Ontario by the CCACs, now the LHINs, and soon it will be the Ontario Health Teams. What coverage you qualify for depends on the funding choices made by your local health agency. What care you get, or even whether you qualify for care at all, depends entirely on where you live in the province. Meanwhile, the demand for home care keeps growing. It’s not just because the population is aging. For years, Ontario has been aggressively shifting health care out of the hospitals and into people’s homes. Advances in technology have made it possible to deliver many treatments at home, such as chemotherapy, intravenous therapy, and mechanical ventilation. But funding and services have not increased to keep pace with these growing needs. The burden often falls on unpaid family caregivers, or, for those who can afford it, private care. If you’re on your own on a low income, you may be out of luck.

And now, while everyone has been preoccupied with the pandemic, along comes Bill 175, Connecting people to home and community care. According to analyses by the Ontario Health Coalition and other advocacy groups, here’s what it does:

  • Repeals the existing Home and Community Services Act and transfers most of it to regulation which can be changed by Cabinet members without ever going to a vote in the Legislature.
  • Dismantles all public governance of home care and transfers it to provider companies, including for-profit companies, which are not accountable to the public. These corporations can contract and subcontract home and community care amongst themselves with no oversight.
  • Makes no provision to ensure or improve access to care or quality of care.
  • Enables private home care to go into public hospitals, and even enables private for-profit hospitals to expand into the newly created tier of unlicensed congregate care.

Introduced without input from advocacy groups, client representatives, or workers’ and health professionals’ representatives, Bill 175 was rushed through first and second reading in the Legislature in early June. The NDP health critic brought forward more than 20 amendments to Bill 175, all of which were voted down. Advocacy groups have staged protests, but the legislation is headed for third reading and royal assent.

It’s a big win for private interests, a big loss for public home care in Ontario, and a big worry for seniors who were hoping to age at home.

May 30, 2020

Can long term care be fixed?

Bug infestations. Old food trays stacked inside residents’ rooms. Residents crying for help for hours. Staff reusing the same PPE for multiple patients, some with coronavirus, others not. Residents force-fed to the point of choking. COVID-19-positive residents allowed to wander through the facility. Key supplies locked away. Residents left lying in soiled diapers. Untreated bedsores. I wonder if Premier Ford regrets calling in the military to assist in five long term care homes overwhelmed by the pandemic. If instead he had just called in a bunch of nursing staff, and they had written a report, he could have quietly tucked it away along with all the other reports that have documented such issues again and again, over decades. But the Canadian Armed Forces report went straight to the Prime Minister, and made the national and even the international news. Conditions in long term care in Ontario have been appalling for a long time, but now that the whole horror show has been so publicly exposed, something will have to be done.

So what should be done? Opinions come with different political slants, but there is a lot of agreement on the basics. There have to be minimum standards for care and staffing, and they have to be rigorously enforced. Homes must be designed so that there are no more than one or two residents to a room, with an en-suite bathroom, and facilities must be available to isolate infectious residents. Staff should be permanent, and their work limited to one nursing home. They should receive wages high enough to attract qualified people to these positions, and benefits, including sick leave. Staff should be trained and competent to serve the complex needs of the elderly in nursing homes. The system must build more capacity to meet the needs of our rapidly aging population. Home care must be expanded too, so that as many seniors as possible can age at home and not have to go into long term care. And somehow the service must be made affordable, so that we don’t create a system only for the rich. What are the chances that all this will finally happen?

The failure is massive and cries out for change, but the obstacles are massive too. Long term care sits at a dangerous crossroads, where sexism, racism and ageism all meet. Long term care staff are overwhelmingly female and racialized, and are chronically underpaid. Our deeply ageist culture dismisses the elderly as disposable and wants long term care to be cheap. Historically we have turned a blind eye to the consequences. But the Armed Forces report has forced us to face those consequences. We don’t like to think of ourselves as cruel and will want to do something to end the abuses and ease our feelings of guilt and shame. But the fix is going to be very expensive. How much sacrifice is our still-ageist society willing to make? Long term care is a provincial responsibility, but health care money comes from federal transfers. The federal government will be very wary of treading on provincial toes. If we’re lucky, maybe they will set some general national standards and attach some new transfer money to long term care. But as it digs out of the pandemic, the federal government will have to face some hard choices about investing more dollars in health care. What would most Canadians pick: long term care or pharmacare? And the Ontario government, over the last few years, has set the stage for exploitation in long term care, with aggressive privatization, minimal standards, and virtually no oversight. The powerful long term care lobby, which makes lots of easy money out of this scenario, will do everything possible to ensure that their lucrative gravy train keeps rolling. They won’t want things to change.

Maybe we need to tweak Ontario’s Medical Assistance in Dying legislation, so that if we reach the point where we need long term care, we can choose MAID instead. It would be a great comfort, now that we’ve learned that ending up in long term care can be a fate worse than death.

April 30, 2020

What’s wrong with public health in Ontario?

If there’s been one bright spot in this pandemic saga, it’s the way it has been managed in British Columbia. They’ve been proactive right from the start, taking a lot of measures early. They recommended against all non-essential travel outside of Canada during spring break. They put in an early measure to prevent health care workers from working at multiple care homes. They flattened the curve while Ontario and Quebec were still struggling with soaring numbers. They quickly coordinated their communication and procedures across the province. And every day, their provincial health officer, Dr Bonnie Henry, steps before the cameras and delivers the latest update calmly, clearly, honestly, and compassionately. In British Columbia, a scientist is leading the charge with integrity and courage. The rest of us can just watch with awe and envy. Because look at what’s been happening in Ontario.

Following the SARS epidemic of 2002 – 2003, Ontario created a stockpile of personal protective equipment (PPE): some 55 million N95 masks, respirators, face shields, needles and more. But the budget covered only the cost of storage. There was no budget to manage, distribute or replace the equipment. When a 2017 auditor general’s report found that most of the equipment had passed its expiry date, the government simply destroyed most of it and didn’t order replacements. So as the coronavirus spread, Ontario was caught short, dependent on a highly competitive, cut-throat, unreliable international market. When we could get N95 masks, they went first to front-line hospital staff. Other front-line workers, like paramedics and long-term care staff, were often left to scramble. Sometimes they were told to use the less effective surgical masks, sometimes home-made masks, and sometimes they were not issued any masks at all. Some had to use green garbage bags as gowns. Now one in seven Ontario residents who have tested positive for COVID-19 is a health care worker. That puts Ontario at one of the highest rates of health care worker infection in the world.

We didn’t have enough swabs, reagents, or lab capacity either, so that may help explain why Ontario’s approach to testing has been so slow and narrow. Insufficient testing has been one of Ontario’s major failures. We persisted in testing only travel-related cases for weeks, long after we had clear evidence of community spread. Later we allowed testing of people in contact with a diagnosed case. But people with coronavirus symptoms who did not meet these criteria were refused a test and told to stay home, so that community spread could not be recorded and tracked. Faced with a lack of capacity and a mounting backlog, Ontario narrowed its criteria even further, restricting testing mainly to sick front-line health care workers and patients sick enough to be admitted to hospital. Additional labs were hastily brought on board, increasing capacity to 13000 a day by the beginning of April, but by then the testing criteria were so narrow, they were down to just over 2500 tests on April 7. That provoked an angry response from Premier Ford, who demanded more testing. So what did they do? They changed the way they count the tests. Instead of reporting the number of patients tested, they simply report the number of tests per day. One patient may receive multiple tests, so now it’s harder to know how many patients there are and it’s harder to track the spread. But Public Health Ontario can look as if it’s ramped up the testing. Before we are ready to ease restrictions, we need to know how much coronavirus is out in the community, being spread by people with mild symptoms or even no symptoms. So we need to do massive testing in the community. Where is the huge army of health care workers going to come from who will do all that testing and contact tracing?

Robust reporting and clear communication aren’t just nice to have. Without them, we can’t move forward safely. In this pandemic, they’re a key to life and death. But Ontario’s public health system has not been up to the job. It is made up of a group of agencies which vary widely in size and sophistication, many of which try to get by on precarious funding. Their Integrated Public Health Information System (iPHS) is antiquated and selective about which data it reports. In frustration, the City of Toronto built their own COVID-19 database, the Coronavirus Rapid Entry System (CORES). Dr Eileen de Villa, Toronto’s public health chief, said that CORES would speed up her department’s efforts to trace people who came into contact with infected Torontonians, and yield better data on the local spread of COVID-19 to share with the public. The new system also tracks test results, hospitalizations and deaths, and uploads information to iPHS. In response to the ongoing nightmare in long-term care, the Toronto Star built a database too, to provide up-to-date information about COVID-19 outbreaks and deaths in long-term care and retirement homes. The Star had found that the data reported by Public Health Ontario vastly under-reported the true number of people dying in these settings, and failed to include any information about where the deaths were occurring, and which homes were experiencing outbreaks. And it’s not just Public Health Ontario that has let us down; it’s the scientific and political leadership too. They have been very slow to respond to the evolving evidence. As recently as early April, Dr David Williams, Ontario’s Chief Medical Officer of Health, announced that asymptomatic nurses and care workers could keep going to work in long-term care, even if they tested positive for COVID-19. It wasn’t until April 14 that Christine Elliott, Minister of Health, reported that she had “recently learned” that asymptomatic COVID-19 carriers can spread the virus. This information has been reported repeatedly in the medical literature since January. Ontarians are being asked to trust the scientists, but we will do that only if they act with scientific integrity.

They say that the COVID-19 pandemic has been a great revealer. In Ontario’s case, it has revealed a fragmented, dysfunctional public health system that has broken down after years of cost-cutting, downloading, and short-term thinking. This pandemic is reminding us what governments are for. What a civics lesson we’re getting. What will we learn from it?

March 30, 2020

Under the coronavirus cloud

The coronavirus pandemic is bad enough, but there’s another one following in its wake. Blatant, unapologetic ageism is going viral too.

It began early, when Canadian public health officials were downplaying the threat by assuring us that the virus affected mainly the sick and elderly. So there might be some losses, but they would be socially acceptable, and it would be business as usual for everyone else. Then the virus began rampaging through long term care homes, exposing all the weaknesses of a poorly regulated and poorly monitored industry. And as the cases ramp up and strain intensive care services beyond their limits around the world, medical staff are now posing out loud the question of who should get the ventilator: the 75-year-old pensioner, or the 30-year-old father of three. Will seniors get extra points if they provide a home for their adult children, or child care for their grandchildren? If we seniors do get turned away from intensive care, what sort of death will we be facing? I can’t imagine that there will be many palliative care beds available for coronavirus patients. Will we just be sent back home, then, to die on the bathroom floor?

Who lives and who dies? Doctors may well be facing that dilemma in Canada soon. I hope that the decisions will be guided by fair, value-neutral ethical principles, using a variety of factors, and not just age. I don’t envy them the task. And I fear for the suffering of those of us who get triaged out.

Stay home. Wash your hands. Keep yourself safe.

February 29, 2020

Designing for seniors

Bottles with screw tops you can’t open without a wrench. Clamshell packaging you can’t open without a Swiss Army knife. Medication bottle labels you can’t read without a magnifying glass and a flashlight. Digital devices with keys so small you hit three keys at once, land in some dark corner of cyberhell, and can’t get out. There are a lot of us seniors now. Why can’t they design things to help us instead of throwing up all these roadblocks?

It shouldn’t be very complicated, really. Some of us need to compensate for vision and hearing problems. Some have health issues affecting fine motor control. Some are inexperienced in using digital devices. And some have cognitive issues affecting memory and attention. If designers were to bear these issues in mind, the results would benefit not just seniors, but many other groups as well.

Here’s a novel concept: ask seniors what we want. Involve us directly in designing our products. Don’t make assumptions about what seniors are looking for in a product. Ask us what we need before you start designing. Watch us interact with products, and solicit our reactions. Listen to us as we evaluate existing products. Learn from what we say.

An American organization called Tech-enhanced Life has been doing just that. Groups of seniors meet monthly to explore new ideas, products and services that show promise for improving life as we age. They also explore unmet needs, and brainstorm potential solutions to those unmet needs. They publish their recommendations and selection guides for a wide and eclectic variety of products and services: everything from medical alert systems to apps, medication management guides, clothing and everyday objects. It’s a sort of Consumer Reports for seniors. Check them out at Tech-enhanced Life.

This is an American group, so some of the products they list are not available in Canada. Wouldn’t you love to see a Canadian version of this initiative? What a fantastic project this would be for some enterprising Canadian seniors.

January 29, 2020

The Planet of Pain

I live on two planets. One of them is regular Planet Earth. Sure, I’m a senior with my share of aches and pains. I have to exercise a lot to keep the joints moving, and to build strength in my back to deal with bad spinal osteoarthritis. My activities are more limited than they used to be, but I can still look after my home, run errands, go to band rehearsal, meet with friends. It’s a quiet life, but I’m content with it. Then all of a sudden, I make one wrong move, or even just cough or sneeze, and I’m catapulted over to the Planet of Pain.

Someone has lit a match to my spine. The sharp, searing, white-hot pain shoots across my hip and down my right leg. The tiniest movement sets it off. It’s hard to put my right foot down, so I limp and scuttle and hang on to the walls to get around. I can’t roll over in bed. I try to find one position that’s bearable and stay put, but after an hour or so of lying down the pain is worse. It takes about ten minutes of scrabbling around, a millimetre at a time, to get from lying down to sitting up. These osteoarthritis flare-ups last anywhere from a couple of days to a couple of weeks. After a few days, I’d gladly jump off a bridge, but how can I get to one? I can’t get out the door, can’t even bend to tie my shoes.

I know the flare-up will end sooner or later, but how do I live through it in the meantime? For pain relief, all I have are Tylenol and Naproxen, and they don’t do anything for pain like that. I can’t escape in sleep, because the pain keeps waking me up. I detour to the twelfth century with Brother Cadfael, or to 50 BC with Astérix. I turn on CBC Radio and let those calm, rational voices wash over me. I’m just trying to get from one minute to the next and don’t much care what they’re saying. I just need reassurance that there’s still a sane world out there. Eventually I’ll get back to Planet Earth.

The Internet is full of advice for coping with osteoarthritis flare-ups. Most of it is pitifully inadequate and must be written by people who have never experienced a flare-up. The best advice I can find comes from the sixteenth century. The French essayist, Michel de Montaigne, suffered from kidney stones, which cause acute episodes, sort of like my osteoarthritis flare-ups. Montaigne doesn’t complain. Instead, he plays a mind game. He tries to persuade himself that the stones are a blessing. His suffering provides him with valuable training in Stoicism. During an acute episode, he can show off his courage in front of his friends. And best of all, as he says in his essay, On Experience:

Is there anything so sweet as that sudden change, when from extreme pain, by the voiding of my stone, I come to recover as if by lightning the beautiful light of health, so free and so full, as happens in our sudden and sharpest attacks of colic? Is there anything in this pain we suffer that can be said to counterbalance the pleasure of such sudden improvement? How much more beautiful health seems to me after illness, when they are so near and contiguous that I can recognize them in each other's presence in their proudest array, when they vie with each other, as if to oppose each other squarely! Just as the Stoics say that vices are brought into the world usefully to give value to virtue and assist it, we can say, with better reason and less bold conjecture, that nature has lent us pain for the honor and service of pleasure and painlessness.