COVID and long term care homes | Your stories | Discussion forum

The two year average for a nursing home stay is out of date, although it did used to be the case. Medical science being what it is, people are living longer and are often frail for longer periods of time.
Case in point is the nursing home resident I have been most familiar with, as follows.

Henry had said for years that he had a plan to end his life before he'd ever have to go to a nursing home. But, after falling and not being able to get up, being home alone, he pressed the Lifeline button and was rescued. He ended up stuck in an "Alternative Level of Care" bed in a hospital for 13 months. This is where they put people who really should be in a nursing home but have not yet found a placement. Like a great many seniors, he did not have the cash to pay for a fancier room in a nursing home, and, if many people tried to go that route, there would not be enough space for them anyway as most beds are in "Basic" accommodation where the need is greatest.
Henry's family visited 18 different nursing homes in their search. Over the period of about 8 months, from the time that CCAC decided he was mentally incompetent and therefore the family COULD place in a nursing home until the family's final round of applications, he was rejected by 7 different homes because of past behaviour problems associated with Alzheimer's even though they had been controlled with medication for the better part of a year. (Yes, they can do this.)
All of the places the family would have preferred had long wait lists, two to seven years. They were forced by circumstance to accept a nursing home that was substandard, although there are worse ones. He was placed in a four-bed room on a locked ward that had less personal space than most hospital beds. While in hospital, the nurses had worked diligently and had healed his bedsores which he had developed at home and could not be cured even with daily visits from a Home are nurse.
Within two months of arrival at the nursing home, Henry had bedsores again. The nursing home staff, when questioned, claimed with straight faces that he'd developed the bedsores due to spending one night in the ER and then returning to the home. Sorry, but bedsores do not happen this way; they take longer than that. And this is a nursing home? Yet they seemed to believe their own lies , presumably because such events happened so frequently and they kept repeating the same answers, that this unacceptable explanation became fixed in their minds. The fact is that the overwhelming majority of their staff are not Registered Nurses. The RNs, when available, spend their time primarily looking after medications, not patients. Perhaps this is why they no longer call them nursing homes but prefer the term "Long Term Care" homes, devoid of nursing connotations.
After about 3 years in this nursing home, his Alzheimer's developed to the point where he had difficulty swallowing. This meant his feeding needed to be monitored and facilitated. However, the nursing home's action was to call in a speech pathologist because that would be paid for by OHIP. The speech pathologist gave a clear report saying that staff needed to stay with him to assist with feeding and that it was important not to rush him. This was not done. About six months later, the nursing home again asked for a speech pathologist to assess him. Another speech pathologist came and issued a report very similar to the first one. Both were a waste of money except inasmuch as they document the issue. I wondered how many times a speech pathologist had been called to that home, made the same observations and the same recommendations to no avail. I think they knew perfectly well what the recommendation would be and that they would not follow it. How could they not?
About six months after that, Henry choked on his breakfast, unattended. By the time the staff happened to notice him, he had turned blue and he was very close to unconscious. They then sprang into action, calling an ambulance. They wouldn't want him to die on their watch. But his breakfast was in his lungs and it was too late. At the hospital, Henry soon lapsed into a coma and the family was told nothing could be done for him. He was sent up to palliative care where, ironically, he had a room about 6 times larger than his allotted space in his "home" in LTC, but was unconscious so could not appreciate it. He died the following day, never having regained consciousness. He had been in the nursing home four years to the month. His bedsores, developed early during his time at the home, never healed. After the first few months, he was never found completely dressed or out of bed by this family even though the law required that all residents be gotten up and fully dressed. He was ALWAYS found lying on his back, dressed only from the waist up so it looked good, no matter what time of day. When the family questioned this, they were told he didn't want to get up or, alternatively, he'd been up and was now back in bed, both lies. At one point a family member was told that if they would only let the home know when they were coming, they would get him dressed! Really? It's not a state occasion, for goodness sakes, nor is it a demonstration project; it's an obligation under the law. (For those who may not know, lying in one position for hours and days on end is an excellent way to develop and foster bedsores.)
At the time of his death, his other 3 roommates were the same people who had been there when he was admitted, so all 4 had been there at least four years. One of them was a young man in his 20s. I don't know what this fellow's problem was exactly; he never spoke. He spent his time watching TV. He was able to get up and walk around easily without impairment or assistance; occasionally he lashed out physically; he did not appear to deteriorate during those four years. Apparently he will be there for the rest of his life.
On the occasions when I visited, none of the other 3 residents ever had visitors. Two of them never spoke. One was incoherent but tried to speak. I would guess that the other two were in their 40s and 50s respectively. Come to think of it, I don't recall seeing visitors there at all.
The story I have recounted took place between 2013 and 2018 in Ontario. The home is owned by a mid-sized chain whose name people would recognize, is listed on the stock market, is profitable and I understand it pays dividends. No doubt some of you own a small piece of it. The hospital in question has just announced that it is getting rid of 100 Registered Nurses and replacing some of them with less qualified personnel including mostly non-professional, non-registered. And here we are in the middle of a pandemic.

Ultimately, I don't think any government is going to solve this problem by spending more money, and they won't. The law on medically assisted dying will gradually loosen so that people who have diseases like Alzheimer's will be allowed to die before they get to the point where they can no longer make that decision. And eventually they will be allowed to give an advance directive that must be honoured. I think most people, given the opportunity, would make this decision. It would eliminate the need for increased spending in these homes and might even create a smaller burden on provincial budgets, but we ought to still expect quality care for the people who continue to reside there. It's really the only way, because the incidence of Alzheimer's in particular is growing rapidly and will continue to do so. The only question is how quickly these legal changes will be made.

Alzheimer's is particularly difficult because, in addition to the devastation it brings to the sufferer and to the family, it often progresses very slowly and can easily take five or ten years or more to run its course.

There's no vaccine for Alzheimer's, and no cures in mainstream medicine.

Loonie, this is such a sad and pathetic situation. Consider I don't believe in mercy killing for religious reason, and consider I prefer to remain single for the rest of my life. I will DEFINITELY use sizable portion of my income to purchase long term care insurance to avoid this type of situation.

Yes, Kidd, using jail as a nursing home will certainly become a thing, it is already the case in Japan.

Why don't government force everyone to buy long term care insurance, it make sure the government won't be footing the bill in the long run, while ensure that people can all have money to live their life with dignity in the last few years of their life. It also help reduce premium because there maybe significant portion of the population not using the policy in the end.

I can't say whether Bill's dad got more attention because he was in a private room but it's highly unlikely. The extra cost for private applies only to the accommodations, not the care or food. Care is allocated based on need. It could have been due to the specific home he was in and probably the fact that it was run by the city. Given that he died within 3 months, it may also have been due simply to the fact that he was in very poo health.

In Henry's case his room was directly opposite the nursing station. He could not have been closer, but the lone RN there in daytime hours is always preoccupied with paper work. When the family went back to the nursing home the day after Henry died to retrieve his few belongings, this nurse expressed great surprise that he had died. Perhaps she'd been off the day before but it's hard to imagine she knew nothing of the circumstances of his departure unless this was an everyday occurrence there.

In terms of duration of stay in nursing homes, I was not referring to 2015 or 2016.

At the time Henry was admitted to LTC, I too thought the average length of stay was 2 years. I have been told by those working in this area that it is now longer, and this coincides with my experience and others I have known anecdotally.

It does make sense that length of stay would be shorter when residents are sicker on admission. However, on the other hand, as the OLTCA document notes, the number being admitted with Alzheimer's is increasing. Alzheimer's does not progress in a steady or predictable decline. It can remain at the same stage for years before dropping down, and the timing is not predictable. So, with an onslaught of Alzheimer's patients on the way, it's reasonable to think they will be there longer in future. Otherwise, yes, I could agree that stays might be shorter in future, particularly if there is any success on the home care front, which, at the moment is still quite inadequate.

Henry had been looked after at home, with daily visits from Home care nurses, but it was not at all adequate, no fault of the nurses. He simply couldn't be adequately cared for at home without fulltime staff and ought to have been in the nursing home at least a year earlier but he and his wife were opposed to this so the family did not look into getting him declared incompetent as they hoped to tough it out. Only when his wife collapsed under the strain was something done. So, really, his nursing home stay should have been a year or two longer based on his needs.
But the main issue remains quality of care, not duration of residency. 2019 stats, whatever they may be, will not reliable because of covid. And this will affect next year's stats as well as the base population will be different.

The family's first preference of a nursing home for Henry was True Davidson Acres, which is one of the homes run by the City of Toronto. They were willing to accept him but the wait list was too long. City of Toronto homes pay better, so they tend to get better quality of employees. They also get some extra funding from the city, but if you can figure out how much, you are a more persistent person than I am. The idea has been floated in recent years to suggest that the city should sell off these homes to the highest bidder.

Jon, I wish you luck in your plans for long term care insurance. I looked into it about 10 years ago and felt it was too expensive for what you get, with too many conditions. Same goes for critical care insurance. A great many people would not be able to afford it in any case.

The majority of workers in the LTC industry are underpaid. Average wage for a PSW is between 17-21.00 an hour. It's not a huge drop in wage for a worker to elect to earn 12.00 an hour to do nothing and earn CERB, and not risk their lives.

I think the Ford government has taken a horribly underfunded LTC industry and possibly made it even worse, in contrast to some other provinces:
https://www.rankandfile.ca/ltc-critical-staffing-challenges/

At the start of the pandemic, the B.C. government took over as employer for long-term care workers, standardized wages, and provided them full-time employment.

In Quebec, the government has embarked on an ambitious program to recruit 10,000 PSWs, raising wages to $26 an hour and providing $21 an hour for training.

Briguy said

I think the Ford government has taken a horribly underfunded LTC industry and possibly made it even worse, in contrast to some other provinces:
https://www.rankandfile.ca/ltc-critical-staffing-challenges/

At the start of the pandemic, the B.C. government took over as employer for long-term care workers, standardized wages, and provided them full-time employment.

Just because that is the situation in BC today, doesn't mean it will be when it is your time to avail yourself of LTC. Prior to the current NDP/Green coalition, we had 16 years of Liberal rule starting with Gordon Campbell, a Conservative in Liberal sheep clothing, who then began to ignore collective agreements, impose illegal settlements, systematically privatize hospital staff, LTC facilities, and other government employees, decimated our public auto insurance, and created a Frankenstein version of BC Ferries that is run as a private business but has access to public funding, ... anything feasible to lighten the public load on the budget by turning it over to the private sector. No one complained because HEY!! we all saw an increase in our paychecks from the tax cut he funded it with. Of course the private sector does not work to break even. Costs for such services increased while quality declined. A penny saved is a penny more profit.
The pandemic shone a bright spotlight on the inadequacies of the LTC situation that was killing our seniors in their facilities...underpaid staff that had to work part time in two or more locations just to make ends meet, while spreading the virus everywhere they worked.
The current government reacted and corrected the situation. It is much improved now, but too late for many victims.
So just because the LTC in BC and Quebec has improved, doesn't mean we won't be another Ontario if a future government takes power and decides that LTC, or ANY government provided service, would be "better managed" (cheaper) by the private sector, just plain cuts costs to the bone and revert us to the prior scenario. Or worse.

Ontario government quietly passed Bill 175. Here are some references:
https://www.rankandfile.ca/ford-government-moving-ahead-with-home-care-privatization-bill/
https://www.ola.org/sites/default/files/node-files/bill/document/pdf/2020/2020-07/b175ra_e.pdf
https://www.federalretirees.ca/en/news-views/news-listing/july/ontario-bill-175-learn-more
https://www.ona.org/about-bill-175/

Briguy said
@Rick I'm glad the NDP have done something in BC for LTC patients, I hope that momentum continues. NDP at a national level doesn't seem to care too much about the patients in LTC. It seems like all the concessions they've gotten from the Liberals have been for the younger population ( ie. voters ) .  

The Liberals have said they will bring in national minimum standards for LTC but I'm not sure what that will look like. And they have trotted out the perennial pharmacare promise, which is an NDP policy that they stole. Health care delivery is a provincial responsibility as I understand it. LTC homes are governed by provincial legislation.

What do you think the Federal NDP should be asking for?

Long-term care personal and nursing care services are funded by the province in Ontario, i.e. private homes are subsidized for those costs. The standard monthly fee paid by the resident is for accommodation (room and board).

It's a great list, BriGuy, but I think it needs to be directed at provincial governments as it's mostly in their ball park. The NDP Official Opposition in Ontario has been vocal on this file but not sure of policy details.
I would add that we need more professional nursing staff and a higher ratio of nurses to PSWs. PSWs are currently being asked to do things they are not educated to do and not accountable for in the way nurses are.

As a point of comparison, the hospital wards dedicated to Veterans, who are in about the same health as nursing home residents, use no PSWs at all, only Registered Nurses and Registered Practical Nurses, for direct patient care. This is what I was told recently by the person in charge of admissions to the Veterans' wing at Sunnybrook Hospital in Toronto. These Veterans-only units are a federal government programme. So it appears the Feds are doing a better job than any province, at least at the level of caregiving. I hope they will use the same standard when thinking about having minimum national standards for LTC homes.

BriGuy raises a good question in terms of what sort of physician care LTC residents get - or anyone over a certain age for that matter.
Almost everyone living in an LTC home, in Ontario at least, receives medical care from the in-house physician(s), who is normally a family doctor / GP. These physicians visit the home once a week and see everybody for a couple of minutes. They bill for a personal visit with each resident. It's a great sinecure. In a few hours they can make a great deal of money. (If this has changed, I have not heard about it; it's the way it has always worked to my knowledge.)
It's quite true, and a valid point, that they are generally never referred to gerontologists. Gerontologists are in short supply, so it wouldn't be feasible anyway. The average hospital, even a large one, has one gerontologist, from what I've seen; small hospitals have none. As far as I know, they all work out of hospitals, not in the community.
I wish I could be more positive about gerontologists but 3 out of 4 that I have dealt with have been useless and one was insulting; the fourth got it right and I am grateful for that as it has made a difference.
Physicians who attend nursing homes seem to rarely make referrals to specialists. I have the impression that the residents aren't worth it and that specialists don't particularly want to see them. A family member was hospitalized for a stroke last winter and was there for about six weeks. She was never seen by a neurologist, not once. She was seen once by a gerontologist two days after admission - that was the one who was insulting and pointedly useless. The rest of the time, she was looked after by a hospitalist.

I believe that medical schools should ramp up the number of physicians who take an optional postgrad residency in gerontology. These are normally family physicians who will carry a regular caseload in the community and could be available to be family doctors for the elderly and to be the physicians who attend at nursing homes. I've had very good experience with one of these doctors.

By the way, all nursing homes in Ontario will tell you that they have a physician on call, which sounds very reassuring until you discover that these physicians will not likely ever respond to a call by showing up. The most they will likely do is to tell the staff to send the resident to the hospital. The nurses know this, so they often don't bother calling them; they just call the ambulance. After a day or less on an uncomfortable bed in a ward full of dangerous bugs and sometimes in a hallway with lights on 24/7 and no privacy, the hospital normally sends the resident back to the nursing home, having rehydrated them, made some change in meds, or simply proclaimed them well enough to return, not sick enough to admit. The ER is used as an expensive substitute for adequate care in the home.

(In Henry's nursing home, they had AC, but it was only at the nurses station, not for the residents. I understand why the staff need it as they are doing physical labour, but the residents need it too.)