Family of Regina cancer patient with sudden cognitive deterioration wants visitation flexibility

On Tuesday, Regina resident Richard Baron suddenly found that he could not recognize his family members. He did not know where he was, and he thought it was the Fourth of July.

The next day, the 64-year-old's wife, Belinda Chorney, called an ambulance afterBaron refused to go to the hospital. He wasstruggling to answer questions and wasunaware what day it was, according to his daughter, Ashleigh Woytuik.

On Thursday, doctors at Regina's Pasqua Hospitalsaidthat Baron had abrain tumour the size of two grapes.

It all happened so quickly.

Now, Baron's family is advocating for more flexibility in COVID-19 restrictions that limithospital visitation.

Chorney andBaron have been togetherfor 35 years. She was able to be with him during his admission, and during his MRA and CT scans atPasqua Hospital.

Baron was transferred alone to Regina General Hospital in the early hours of Thursday morning.

"They informed my parents that he would be going to the general hospital, but that he would have to go alone at that point in time," saidWoytuik.

That news, and knowing that theirfather would be alone in his state, really hurt her and her older brother Chris, Woytuik said.

She said on Thursday, she spent the whole day contacting Premier Scott Moe's office, MLAs and anyone else that might help her mother get into Baron's official diagnosis meeting on Friday.

"[My dad]was very cognitively un-present. I was able to talk to him. He was just not comprehending fully what's going on. He was telling me things like ... he can see my daughter."

She was able to speak with a manager, who agreed to let her mother be present for theresults of the CT and MRI scans,Woytuik said.

"But they made it clear to me that this was not going to be a regular thing."

Alone in the hospital

On Friday, doctors told Woytuik'sparents that Baron had lung cancer, which has spread to his brain. As of Friday night, he is temporarily back home.

He will need to have surgery to have the tumour removed from his brain in a week. But the family has received no further information on whether they will be able to be with him at the hospital going forward.

The Saskatchewan Health AuthoritytoldCBC that itcannot comment on specific patient cases due to the health information protection act.

Due to concerns over the rise in cases involving coronavirus variants of concern, a decision was made earlier this month "to restrictfamily presence and visitation in ReginaSHA facilities and long-term care homes to Level 3," the health authority said in a statement.

That means that two family or support members can be present at the same time for end-of-life care only, according to the health authority. One essential family or support person can be designated to assist with care if needed, as determined by the care team.

"If patients or family members have concerns, we encourage them to contact our quality of care co-ordinator's office directly," the SHA's statement said.

Woytuik describes her father as "a big old goofball," adding her children adore their grandfather.

"Hehas always been the type of dad that will be there the moment that you tell him that you need him, without any question," she said.

"Even in the midst of all of this going on, yesterdayhe was saying to me, 'Don't worry, we're gonna have time to go fishing.'"

But knowing that her father is in a deteriorating state of mind and doesn't understandwhat's going on is worrying for the family. She's concerned about his mental health.

"There have been times when he has been crying on the phone, and where he's said, 'I want to come home,'" said Woytuik.

"My mom said when she talked to him on the phonehe said that someone came in and told him that the prognosis didn't look good.I don't know if that actually happened, and I doubt it did. But this just shows he's thinking things are happening that aren't happening," she said.

"He said to my mom yesterday, 'You can just come up to the building,pull the car up on the side of the building, and I'll come down to you and we can go.'It's hard for him to deal with, but also for my mother to deal with, and being told that she can't go be with him."

Woytuik says she wants the province and the Saskatchewan Health Authority to give clear guidelines on when hospital personnel can make exceptions to visitation rules,and allow them to use their discretion.

"The doctors and nurses are wonderful. And I want to make it clear that this is not an attack on the health-care system, or the people that are there serving and taking care of my father," she said.

But "the things that are being expected of familiesgoing through these situations are not OK and they're not realistic."

She believes that the authorities who put the restrictions in place are trying to do what's best for the community as a whole.

"ButI do believe that in situations like this with my dad, where he's not cognitively functioning properly [and]there's been a traumatic diagnosis there needs to be exceptions made for at least one person to be there for him."

Woytuik says her mother is willing to follow any and all rules so she can be by Baron's side.

In-hospital risks

Dr. Dennis Kendel, a health policy consultant and the former registrar of the Saskatchewan College of Physicians and Surgeons, says there are risks that need to be managed around hospital visits, and the dangers of bringinginfection in. That'swhy Saskatchewan hospitals haverigid protocols, he said.

But "now that we've had a whole year of experience with this, I do hope that we might be able to get some flexibility," he said.

He'd like to seeclinical care teams have more discretionary authority to accommodate special arrangements, "particularly when a person is a cognitively impaired and they're very confused and lost in the setting in the hospital," he said.

"Having the ability of somebody from the family to come and be with them can be quite calming."

That's not only important to the family, "but it probably alleviates some of the time demands on the professional staff," he said. "If you have a highly agitated and anxious person, it takes infinitely more staff time."

The possibility a visitor could bringthe coronavirus into a hospital mightputpeople in a shared hospital room at risk, Kendel says but there are ways to reducethat danger.

"To mitigate the risk that she could pick up the virus and bring it into the hospital ... you have to be very fastidious in making sure that she isn't in contact with people from whom she could get the virus," he said.

"So in that circumstance you have somebody elseget your groceries and bring them in you. You don't go out at all, you just stay at home."

Visitors would also have to comply withthe hospital's requirementsforwearing personal protective equipment.

While the restrictions are hard for many families, "I don't think the staff at the bedside have lost any empathy at all [throughout the pandemic]," said Kendel.

"In fact, it's weighing very, very heavy on them ... the things that they are seeing and the inability of family to be in contact."

Many families have turned to the option of connecting with patients in hospital virtually. Baron's family has that option, but Woytuik said he has trouble understanding why they're not with himand the calls have been short.

"Technologycan sometimes bridge that gap," said Kendel."But when people are cognitively impaired, it's a whole different situation."