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Disabled woman’s death raises questions about COVID-19 policy

Last Updated Apr 24, 2020 at 9:50 am PDT

FILE (iStock Photo)

Support workers say woman with severe disabilities needed help communicating before she died

Woman with severe disabilities deserved informed end-of-life care says group home CEO

Caretakers need to be able to help those with severe disability, even in hospital, say advocates

SURREY (NEWS 1130) — The sudden, non-COVID-19-related death of a woman in her 40s has disability advocates calling on the province to allow caretakers into hospitals to support their clients with complex needs during this pandemic.

“She’s a person who had an intellectual disability, who communicated but not by speaking,” says Doug Tennant, the CEO of UNITI, of Ariis Knight, adding the use of her arms and legs was severely limited.

UNITI is a non-profit partnership of three disability service providers, including the Surrey group home the woman lived at.

Knight was taken to hospital last Wednesday after she reported having trouble breathing. Within 12 hours Tennant says the test for COVID-19 had come back negative. She died Saturday night.

“It’s quite likely she would have passed away anyway without COVID-19 and without this policy but it just breaks my heart that we were not able to have someone who cared for her and loved her in the hospital, when she passed away, telling her that she was a worthwhile person,” he says.

Provinces have control over healthcare policies, including the one that currently disallows anyone who is not a patient to accompany sick people into the hospital. While that makes sense for visitors from the general public, exceptions should be made for support workers of those with complex needs, say those arguing the policy change.

He has no concerns about the quality of medical care, it’s the access to support, and therefore security, that is the right he sees being denied.

Tennant also believes Knight’s family was not appropriately notified before she was moved to palliative care on Saturday, shortly before dying at Peace Arch Hospital.

“I think she also needed somebody there who would, if a decision was needing to be made, would be able to support her to make that decision so that she as a human being is a part of that,” he says.

Fraser Health says it notified the family when it became clear Knight was going to die, but Tennant says it was not done soon enough and not in a way that would have allowed the woman to make informed decisions about her end-of-life care.

“No patients receiving end of life care have family members turned away from visiting,” the health authority says. “In this case, when it became clear that this patient was coming to the end of their life, we proactively reached out to have the family come to hospital.”

Federal ministers say allow caretakers in

The sweeping ban on hospital visitors is something the federal government has asked all provincial ministers to consider removing, in a letter sent by Ministers Carla Qualtrough and Patty Hajdu, last week.

“We know you would agree that persons with disabilities are particularly vulnerable and have unique needs as we go through this public health crisis, and we are sincerely grateful to provincial and territorial governments for your equal commitment to disability inclusion,” the letter says.

The prime minister received a letter from 61 disability organizations regarding their concerns about the risks of discriminatory triage during the COVID-19 pandemic.

Tennant says the same attitudes about the value of life that leave disabled people vulnerable to that kind of discrimination are what is leaving them without support right now.

“A person might appear to have a poor quality of life but that is their life and they might actually very much enjoy their life and want to continue to live and my concern around judgement being made, without that thorough communication without consultation with families, without consultation of advocates for that person, is that decisions might be made that are not in the best interests of that person,” says Tennant.

He says having a support person in hospital makes it much more likely rights are respected and decisions are informed, which is why he typically sends his staff into hospital with clients.

“For the specific reason that we want that person there to ensure that Do Not Resuscitate decisions are not made without input from the person there,” he adds.

In a statement, the Ministry of Social Development and Poverty Reduction says the province “appreciates the concerns of people with disabilities and their families during the COVID-19 crisis and supports the UN Convention of the Rights of Persons of Disabilities.”

Minister Shane Simpson and the CEO of Community Living BC — the government branch that oversees service providers — is holding weekly conference calls with families, self-advocates, service providers and other stakeholders.

Matching a federal response to concerns from people with disabilities, B.C. has also convened a Disability Working Group during the COVID-19 crisis.