The COVID-19 pandemic has taken John and Teresa Lidsle away from their 31-year-old daughter, Jessica, who’s been in an Ottawa hospital since January 27. She tested positive for influenza B upon admission, and, since then, she’s had double pneumonia, kidney stones, shingles, and a fungal infection in her blood. She was intubated for 17 days, then underwent a tracheotomy. Her parents don’t know how long Jessica will need a ventilator — or when she’ll be released.
The Lidsles say that Jessica usually receives excellent care at the hospital — some nurses there call her a member of the family — but her parents wonder whether she will continue to receive this quality of care if hospitals become overcrowded because of COVID-19. “I was kind of concerned because Jessica’s on a ventilator, and she doesn’t have COVID, but she’s extremely sick,” says John. “I hope we get out of the hospital before this comes to a head.”
Jessica has Rett syndrome, a rare genetic disorder. She uses a wheelchair, is non-verbal, and is fed through a tube. Her parents haven’t seen her since the hospital stopped allowing visitors on March 20. It’s the longest they’ve been away from their only child, whom they usually visit at least once a day at her group home.
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Doctors recently told them that the hospital is not running out of ventilators. But conversations about who would receive one during a crisis — and who wouldn’t — are “very traumatizing,” says Teresa. Ontarians with disabilities, and their families, are increasingly concerned that people with disabilities, including cognitive impairments and neurodegenerative diseases, such as Parkinson’s disease and amyotrophic lateral sclerosis, could be denied critical care if hospitals were to lose the capacity needed to treat people infected with the novel coronavirus.
On April 8, ARCH Disability Law Centre in Toronto sent an open letter to Premier Doug Ford, Minister of Health Christine Elliott, and Minister of Seniors and Accessibility Raymond Cho. The letter, signed by 204 organizations across Canada and 4,884 individuals, asks the government to affirm that patients with disabilities will not be denied critical hospital care in a COVID-19 emergency because of their disabilities.
The letter is in response to the government’s draft triage protocol, dated March 28. The protocol has not been released to the public, but TVO.org has obtained a copy. It describes how hospitals will determine who receives critical care, including mechanical ventilators, in the event that hospitals are at overcapacity due to COVID-19 and “the need for ventilatory support is greater than the existing resources.” Individuals with cognitive impairments and irreversible neurodegenerative conditions would not be eligible for critical care. The description of cognitive impairment in the draft includes someone who is “unable to perform activities of daily living independently due to cognitive impairment.”
The centre writes that people with disabilities must receive accommodations for their disabilities. “Even though it is an emergency situation, the COVID-19 pandemic cannot be used as justification for discrimination,” the letter says. The draft protocol refers to triage as an “option of last resort” and indicates that people who are denied critical care during a triage must be offered other care: “They should receive the highest priority for palliative resources, including comfort medications and a consultation by a palliative care provider if necessary and available. All patients must be cared for.”
Robert Lattanzio, the executive director of ARCH, says that people with disabilities often face barriers and negative attitudes in the medical system — and that the draft protocol could encourage medical professionals to deprioritize care for people who have disabilities or need help living independently. The draft protocol, he says, is “bringing in other values-based judgments, and those value-based judgments have no room for a decision-making process like this.”
At a press conference on April 7, Elliott emphasized that the document is a draft and still requires government review and approval. She “would never allow” people with disabilities to be cut out of care, she said, adding that the province is not close to being in a situation in which the protocol would need to be used.
TVO.org contacted the Ministry of Health for comment and was referred to Ontario Health. In its email response, the arm’s-length agency did not answer TVO.org’s questions about whether the government would be changing any of the wording in the draft protocol or when the final version would be passed; the spokesperson stressed that the current document is only a draft.
But Lattanzio says that ARCH is hearing from people worried that they or their loved ones will receive inadequate medical care, even before they arrive at hospitals. “There’s beginning to be a chilling effect,” he says. “People are really scared.”
COVID-19 has also left many disabled people without the supports they need for daily living. “I’m feeling very overwhelmed with this whole situation,” says Marley Daoust, a 22-year-old Barrie resident. Daoust, who has cerebral palsy and a developmental delay, rents a room in a family’s home. Before the pandemic, someone regularly came to help her with independent living skills, such as cooking. Now, that help is sporadic. “I thought they’d be checking in with me more because of this coronavirus,” she says. She can’t see a doctor to help with her anxiety; her weekly ball-hockey games are cancelled. “It’s not easy,” she says. “It’s super, super hard.”
Kathie Judd, Daoust’s mother, says that Daoust doesn’t understand why she can’t go out. “It’s way worse for somebody with special needs than it is for the rest of society,” says Judd. “I read every single day on Facebook that you’re not supposed to see your aunts, your uncles, your kids, your grandparents — but you can’t just dump these people and expect that they can live without a support system. I can’t just not see my kid.”
In Ottawa, the Lidsles call the hospital three times a day and FaceTime with Jessica every night. They stocked her room with her favourite DVDs: Frozen, Frozen 2, and The Big Comfy Couch. The separation is “sick-to-your-stomach hard,” says Teresa. She can no longer be her daughter’s advocate, explaining to others what makes her happy or what medications she’s allergic to.
“Our whole life has been looking after her,” Teresa says. “We’ve lost our jobs. We’ve gone bankrupt. Everything we do is for her. For her to be away from us right now, it just kind of rips you of your reason to live.” But, Teresa adds, “I got to stay strong for her because she’s so strong. I have to be as strong as her. And that keeps us going.”