A Winnipeg mother is fighting for the chance to visit her son, who has a disability and is nonverbal, after being told she can’t go see him in hospital due to pandemic restrictions.
“None of it makes any sense,” said Christina Stewart, who hasn’t seen her son, Quinn, since he was admitted to the Health Sciences Centre earlier this week after he had 10 grand mal seizures in under an hour on Monday.
Quinn, 19, has refractory epilepsy and a rare chromosome deletion, Stewart said, and he is nonverbal, meaning he isn’t able to communicate with health-care providers.
Due to her son’s disability, Stewart says she is more than his mom — she’s also his medical advocate. Ordinarily, she would help him communicate to staff what he needs, but due to COVID-19 code red restrictions, she said she’s been denied any visits aside from brief video calls.
“He’s probably scared and wondering, where is mom? I’ve never left that child’s side,” Stewart said Thursday.
“I’m sure there’s other parents and caregivers out there that are the same way I am, and for these people to be in that kind of situation — it’s just unjust.”
According to Shared Health’s visitation rules under the red, or critical, level of the province’s pandemic response system, visits to most inpatients in hospital are not permitted. Some case-by-case exceptions are allowed, including for pediatric patients or people in labour.
Stewart said she was allowed to sit with her son for 30 hours in the emergency room, but was told to leave when he was admitted as an inpatient.
Communication from the hospital about her son’s condition and treatment has been poor, she said. She fears that without her there, staff won’t be able to identify his seizures, which present differently than others, or he won’t be able to tell staff if he’s in pain.
“I’m Quinn’s only form of communication, in or out of hospital,” she said. “So why am I denied to be with him?”
A spokesperson for Shared Health said visitor restrictions at hospitals attempt to balance patients’ access to loved ones with public and patient safety.
“There are exceptions that may be considered on a case-by-case basis and we continue to offer patients the option of virtual visits using FaceTime or similar video call applications,” the spokesperson wrote in an email Thursday.
“We encourage patients and/or their loved ones to reach out to their care teams if they have concerns.”
Stewart said she’s doing everything she can to get access to visiting. She contacted her MLA as well as Premier Brian Pallister, she said, and even an attorney.
If she could be with her son, she said she could help overworked staff care for him.
“This is just ridiculous,” she said. “People that cannot communicate for themselves need somebody there.”
The last time she saw her son, in a video call on Thursday that only lasted a minute or so, she said he didn’t look well.
“He still isn’t sitting up on his own. He’s still not eating properly. He looks like he needs to have a bath badly,” she said.
“It’s very heartbreaking.”
Many families wrestling with visit access: CFHI
Jennifer Zelmer, CEO of the Canadian Foundation for Health Care Improvement, said the issue of patients’ access to caregivers in the time of COVID-19 is an issue the foundation has been examining for months.
Earlier this year, the organization convened an expert group of public health workers, clinicians, patients and families to discuss how to integrate caregivers.
“What we heard, first and foremost was that this was an issue that lots of different people were wrestling with, and there weren’t easy answers,” Zelmer said in a phone interview from Ottawa.
Zelmer could not speak to Stewart and her son’s situation specifically.
In general, she said it’s important to make a distinction between casual visitors — who might stop in to say hello — and essential care partners.
Those people, who may be family or friends of a patient, perform a critical role in the patient’s care team and often act as advocates and communicators.
In addition to that distinction, the expert group identified six other steps to guide policies, including identifying principles of patient- and family-partnered care, revisiting policies on the involvement of essential care partners and considering the needs of people who face specific risks without a care partner, such as children or people with communication barriers.
The group also recommended looking at a rapid appeals process for patients and families, and working to increase the evidence base to help guide policy-makers down the line.
The pandemic is an evolving situation, but Zelmer said bringing more voices into policy decisions will help health-care systems succeed.
“That’s where we found that some of the paths forward are,” she said, “recognizing that we are looking at a balance of risk and tough decisions that need to be made.”
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