The brother of a South Surrey woman who died at Peace Arch Hospital last Saturday (April 18) says it is “frightening” to think that his sister spent her last three-and-a-half days in an environment where she had no means of communicating.
David Knight said he filed a formal complaint with Fraser Health on Thursday (April 23) after his sister, Ariis, died without family members or a caregiver by her side – all because of policies around hospital visitation protocols during the ongoing pandemic.
Ariis, 40, grew up with her brother in Vancouver. She had limited mobility due to cerebral palsy, and was non-verbal, which means she needed assistance in expressing herself.
But at PAH last week, “she was denied an aide for communication,” Knight told Peace Arch News on Friday.
“Her voice was stripped away from her at that point.
“The biggest thing that really bothered me is she died alone and she didn’t need to.”
Knight is also critical of what he says was a lack of communication from hospital officials regarding his sister’s deteriorating condition. He said by the time family or any of Ariis’s support network at the Semiahmoo House Society (SHS) knew she was nearing the end of her life, there was no time for any of them to reach her.
The circumstances around Ariis’s last days in hospital are also concerning for Doug Tennant, the chief executive officer of UNITI, a partnership of three organizations – SHS, Peninsula Estates Housing Society and The Semiahmoo Foundation – that work with and advocate for people with disabilities.
Tennant is appealing for a change to Fraser Health’s policy around COVID-19 hospital protocols so that others with disabilities aren’t left without proper aid.
“A part of this that makes me really sad is this lady, this woman, had to die without her family or the people who cared for her in the group home, and really cared about her and loved her… telling her that she was loved and that she had value on this Earth,” Tennant said.
The tragedy has increased the level of fear among others who have disabilities, he added, around what could happen to them should they be hospitalized themselves and not have the support they need to communicate and make informed decisions.
Tennant emphasized his concern isn’t with the “heroic” care that frontline workers at the Peace Arch Hospital have been providing during the pandemic.
“They’ve always done fantastic work,”he said. “This is about a policy that needs to be changed.”
The night of April 18
Ariis was admitted to Peace Arch Hospital with breathing difficulties on April 15.
She died between 9 and 9:45 p.m. on the Saturday, less than an hour after those close to her were advised that her condition had taken a turn for the worse.
Knight, who works as a nurse in a long-term care facility in Kelowna, said he made it clear to hospital officials shortly after learning his sister had been admitted that he should be the “point person” on the file for any updates or changes.
But for whatever reason, he wasn’t advised when his sister’s status was changed to “essentially palliative care,” Knight said.
A voicemail message left for their dad, at 8:02 p.m. on the Saturday, was the only call made regarding his sister’s diminishing health, Knight said, describing the fact that he and Ariis’s support workers were left out of the loop as “frustrating.”
“It didn’t seem like my sister was a priority,” he said.
Knight said Teresa O’Callaghan – executive director for Delta and White Rock/South Surrey Health Services and Delta and Peace Arch Hospitals – has since told him that visiting restrictions for Ariis should have been lifted, and that there will be an internal investigation. As well, she told him his sister “was given good care while she was with us,” he said.
In a statement to PAN Thursday (April 23), Fraser Health officials said efforts were made to reach out while Ariis was in hospital.
“Our thoughts are with this family during this difficult time,” the statement begins.
“No patients receiving end of life care have family members turned away from visiting. 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.”
Following a request Friday to speak with O’Callaghan, the statement was updated to include that “early measures we took was to implement essential visitors at our sites.”
“Essential visitors includes anyone who is considered paramount to a patient’s well-being,” the amended statement continues. “In the event that communication with a patient cannot be facilitated, acute care staff would connect with family to access additional support for the patient. In this case, medical staff determined that additional support for communication was not required.”
Knight said the efforts made to reach his family were anything but proactive.
“I just think they could’ve done a hell of a lot more,” he said.
He described the notion that assistance was not required to determine Ariis’s needs as “insane.”
Ariis remembered for ‘bold personality, bright smile’
Knight described his sister as “such a giving person… a smiling person,” who’d had more adventure in her lifetime that he could ever imagine having himself.
She had been supported by SHS for the past decade. Tennant described her as someone with a bold sense of fashion, a huge personality and a smile that lit up whatever room she was in.
While she was non-verbal, those who knew her best and had supported her over the years knew her every facial expression or sound, what each one meant and how she was feeling – it’s a level of understanding that is unfair to expect of frontline workers, Tennant said.
“In fact, it would be asking too much for hospital staff to try to figure out how someone communicates when it takes people two years or so to get to know someone.”
Currently, non-essential visitors are not allowed at any Fraser Health site, but there is an exception to the policy, which allows a designated person inside if the need is tied to tasks like feeding and personal care, according to health authority’s website.
That definition of “essential” needs is incomplete, Tennant said.
“When decisions are being made, communication and supporting people to make informed decisions needs to be a reason why people can go into the hospital to support someone,” he said.
“To me, it’s about fairness. If a person without a disability goes into hospital, they’re able to communicate their needs. The same respect needs to be given to people with disabilities, who need support to do those things.
“One of the things that I hope comes out of here is that there would be an exception made for people who need a support person there. It’s not a matter of treating people with disabilities different, it’s actually a matter of treating people with disabilities the same.”
Knight says his ultimate goal is that no one else has to go through what his sister and her family and support network have.
“I don’t want this to have to happen to anybody else.”
Communication on policies unclear, advocate says
Since the pandemic was declared in mid-March, advocates in the region have come together to form a group specifically to advocate for people with disabilities during the crisis.
Jessica Fletcher, a member of that group, alerted PAN to concerns regarding Ariis’s experience by email earlier this week.
With the caregiver being denied entry, Ariis was left “with little ability to communicate with medical staff, and in particular likely unable to effectively express her discomfort or pain,” Fletcher wrote April 23.
She echoed Tennant’s sentiments that the communication concerns could have been avoided had a family member or caregiver been allowed to be with her.
Fraser Health announced COVID-19 restrictions in early March, limiting emergency and outpatient clinics to one adult caregiver or support person. In late March, B.C.’s five regional health authorities banned non-essential visits at all sites, with essential visitors allowed in through controlled access points only.
Fletcher said despite assurances from government, health authorities “are not on the same page and not able to make necessary exceptions to current protocols for personal attendants for people with disabilities.”
It’s a concern that has been identified by federal Health Minister Patty Hadju and Minister of Employment, Workforce Development and Disability Inclusion, Carla Qualtrough.
“Despite our collective efforts, persons with disabilities across the country are worried and expressing that their unique needs are not being taken into consideration, and that they are not being treated equitably,” an April 14 letter by the ministers reads.
Among four issues it highlights is a need to work with hospitals “to make an exception to any blanket prohibition of visitors when a person with a disability requires assistance with vital services like communication, caregiving or supported decision-making.”
A COVID-19 Disability Advisory Group – comprised of experts in disability inclusion – has been established “to provide advice on the lived experiences of persons with disabilities during this crisis; disability-specific issues; challenges and systemic gaps; and strategies, measures and steps to be taken in response,” the letter adds.
People with disabilities ‘disproportionately impacted’ by COVID-19: MLA
Earlier this month, Surrey South MLA Stephanie Cadieux issued a call for greater action to address the impact of the COVID-19 crisis on people with disabilities.
In an op-ed submitted to PAN, she describes the individuals as “disproportionately impacted,” citing greater risk of complications due to underlying medical conditions; discrimination and barriers in access to information, services and health care; challenges created by self-isolation and physical distancing; and more.
On Thursday, Cadieux expressed condolences to the woman’s family and those who cared for her, but said she could not comment further on the case, as it was not something she had direct knowledge of or was involved in.
At the same time, “it does seem to underscore what I’ve been saying, what the disability community’s been saying, about the need for clearer protocols in circumstances where there are people who can’t communicate for themselves or require one-on-one care on a daily basis that is not nursing,” she said.
“As I learn about the details of this situation, it will re-energize my push with government for clarity around these protocols, and the rights of people with disabilities… and what does that mean when it comes to a person with a disability who has the need for personal support for communication or care.”
Cadieux maintained that an advisory group similar to that announced by the federal government is needed in B.C., as well.
Provincial health officer Dr. Bonnie Henry was asked about the issue of communication challenges for people with disabilities during a news conference on Thursday afternoon, and said there are exceptions to the restrictions that are in place at long-term care facilities and hospitals to ensure people receive needed support to speak and hear effectively.
“We do believe that there is accommodation being made,” Henry said. “My expectation is that there is accommodation being made.”