Seniors advocates say Ontario should let families back into long term care homes.

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Brenda Casey (right) with her grandmother, Lillian Batty who died May 14 at Meadowview Nursing Home.

One professor calls it pandemic prison adding the province is violating the Long Term Care Act

Doctors told Brenda Casey she and her grandmother were like an old married couple, they were so close.

But when Lillian Batty came to the end of her life last week, Casey couldn’t be there. Batty has been a resident of Meadowview Villa in Petrolia for five years and for the last two months of her life, she lived without the close contact of her family locked down because of COVID-19.

Casey grew up in her grandmother’s Wyoming home. After her grandfather died, they stuck together and even worked together at the family’s business – Lloyd’s Paving.

As her granny aged, Casey would joke with her about the future “She just kept saying ‘never put me in a home’ I was like “Never Granny, don’t worry.”

But eventually Casey and her mother and two aunts could no longer care for Batty in her home. She agreed to go to Meadowview.

“The staff up there are wonderful. They are wonderful. They just don’t have time,” says Casey. So, family visited daily. Sometimes Casey would be there more than once a day.

Her granny’s memory slipped, but Casey still went knowing it was important to be with her. As her condition worsened, Casey knew she had to advocate for her granny. And, when Batty’s weight dropped to 107, family members would take turns going to feed her because she would eat for family members but not the staff who tried to help. Just before the province locked down nursing homes to stop COVID-19 from entering the homes, Casey’s granny was back up to 122 pounds. 

Casey, like many of the families of the 79,000 long term care patients in Ontario, grew frustrated as the lock down dragged on. She knew how this would affect Batty since home would be locked down for a week or so to stop a flu outbreak in the past.

“She just seemed sadder…It’s really hard, because you don’t know what they’re thinking.”

Experts have been watching the now nearly nine week lock down of Ontario’s nursing homes. The province, including Premier Doug Ford, have said a flat no to allowing family members back in saying it is too much of a risk.

COVID-19 has been devastating in Ontario’s long term care homes.

Of the 1,993 people who have died as of May 21, 1,452 of them have been residents of long term care homes. 

About 175 of the 626 publicly funded homes have had outbreaks, some with horrific consequences. Monday, a home in the Hamilton area was evacuated because the COVID-19 outbreak was ravaging the population there.

But Casey, and some long term care advocates, say the province-wide lock down needs to end.

Dr. Vivian Stamatopoulos, Associate Teaching Professor in the Faculty of Social Science and Humanities at  Ontario Tech University. She says other provinces – Alberta and BC for example – have allowed families back into nursing homes, starting with those which don’t have COVID-19 outbreaks. But Ontario doesn’t even have a plan yet, she says.

“It’s ridiculous,” she says of the 69 days families have now been kept from their loved ones.

She says studies in France during that country’s COVID-19 lock down – which was 19 days – have shown isolating the elderly, particularly those with cognitive problems, has long term consequences that are “arguably irreversible.”

Stamatopoulos adds keeping families and patients apart for long periods of time is illegal under the Long Term  Care Act.

“Certainly and especially for elderly residents who need to make decisions with a power of attorney, those with advance cognitive decline and issues with understanding…their family caregiver is crucial in giving consent…They cannot provide proper consent..if they do not have active involvement in their care.” 

The act also says patients have the right to adequate care, but without family members inside to see what is actually happening, issues such as the lack of personal protective equipment for staff or inadequate care, may never be known. 

“How are they supposed to know exactly what conditions the residents are under if they (the residents) can’t communicate how they are feeling?”

Stamatopoulos says the homes have become “pandemic prisons” for the elderly.

“They are treating the elderly worse than were treating prisoners at this point… I am horrified it has gone on this long, with no appreciation of how harmful this is.”

The situation is made worse, she says, when the province calls in the army or staff from school boards to come into the homes and keeps family at bay.

“They’re treating the family members, who have the largest interest in keeping residents safe, treating them as a potential risk but allowing everyone else in – it doesn’t make sense…

“There is growing concern from families questioning whether this is to hide what is going on…Do you not want families to see this, are you afraid of potential family legal action?”

In fact families are raising concern. Jason Oliver is with the Patient Ombudsman’s office. For the last four years, it has dealt with concerns about patient care in hospitals and long term care homes and other publicly funded health care organizations.

Normally, complaints about long term care comprise 10 per cent of their work. 

During COVID-19, about half of the complaints are coming from family members and workers at long term care homes.

Oliver says last year there were about 200 complaints a month. Since early March, the number of complaints has almost doubled, with 250 complaints dealing with COVID-19 issues.

“Normally, people are a bit fearful to make complaints in long term care homes; it’s their house….and they tell us they are fearful of reprisals that will affect the care,” says Oliver.

“Now COVID-19 comes along and about 50 per cent of all of our COVID complaints are from long term care homes. It is definitely a shift but not surprising for anyone who is following the news.”

The ombudsman, seeing what was going on, for the first time last month put out a plea for families and caregivers to speak out so they can find the problems in long term care.

Stamatopoulos agrees it is time to speak out, telling families to report everything so when the province’s independent commission – announced by the long term care minister Tuesday – begins its work there will be lots of evidence about what is going on in nursing homes. 

But now, Stamatopoulos says the province should start opening up the homes so families can be there to advocate for relatives.

“Start with homes that don’t have outbreak. There has been zero reason from day one that they should not have been in there,” she says adding “we’re not going to have a barbecue.”

Family, Stamatopoulos says, should have access to personal protective equipment and at least one family members should be allowed into homes even in an outbreak.

Brenda Casey agrees. “They should be supplying PPE for one important family member, either the POA (the person with power of attorney) or another family member. Families need to go in because…you can’t advocate for someone you can’t talk to.”

Lambton’s Medical Officer of Health, Dr. Sudit Ranade, also suggested its time to talk about returning essential family members to long term care homes.

Ranade says there are residents who are “really suffering from not seeing their loved ones and that is important to consider

“I have always been a strong supporter to a humane approach to the situation which includes getting people to see the loved ones.”

But he says some basic questions have to be answered, including is there enough personal protective equipment to give to visitors and would it be an occupational health and safety risk for staff.

Ranade says the public has to adapt and start to live with COVID-19. “We know that there is transmission despite these things (strict measures including lock down)

“It is time to think about how do we incorporate this into our lives.”

But not everyone agrees families should be given access to long term care homes. Nalini Sen is the director of research for the Alzheimers Society of Ontario. 

She agrees these are challenging times for people in long term care particularly those with Alzheimers or dementia. She says the changes in socialization – the lack of family visits and fewer activities in the home itself –  has a “direct impact on their mood.”

That places a lot of stress on health care workers who are trying to stimulate residents while doing their regular duties.

She says for heath care workers, it is “challenging.

“They are spreading themselves thin. One-on-one attention has increased now – where group setting would have provided relief to health care worker.”

But Sen doesn’t believe that automatically means family should go back into the homes – yet. 

“Safety is paramount,” she says. “What we do know is this virus is fast spreading what we don’t know is when it will be finally contained

“Isolation and placing those types of restrictions is better than not” particularly when some seniors recover.

Sen advocates a gradual return as research shows the best way to protect vulnerable seniors.

Premier Doug Ford has also been blunt about the issue saying he doesn’t believe families should return to long term care homes yet. Health Minister Christine Elliott reinforced the view Thursday.

“The problem is we have had so many outbreaks at our long term care homes it is still too dangerous to let other people in…we are not able to do it because we need to protect those residents,” Elliott said Thursday. She added people had contacted her concerned their family members were deteriorating without contact from family.

For Casey, the only time she was able to return to Batty’s side was as her granny was dying at Meadowview.

Staff helped her put on personal protective equipment and she sat with her grandmother for a half hour, telling her it was okay to go now.

“She never really woke up…I uncovered her feet and put my hand in her shirt…thinking maybe it would be cold and she would wake up. She did open her eyes and there was nobody there.”

Lillian Batty a day later, alone.