Disability Advocates Call for Immediate Change to Hospital Policies Designating "Essential" Supports/Visitors following the Death of Ariis Knight

Media Release

For Immediate Release | May 5, 2020

The Council of Canadians with Disabilities (CCD) and the Disability Alliance British Columbia (DABC) are calling on all hospitals in every province and territory in Canada to immediately revise their policies designating “essential” supports/visitors to include personal support workers, healthcare aides and family members who can assist people with disabilities in communicating with healthcare providers. 

This call to expand the definition of “essential” supports/visitors to reflect the support needs of people with disabilities comes after the death of Ariis Knight, who had cerebral palsy and communicated with her family and support workers through her eyes and facial expressions. Ms. Knight was admitted to Peace Arch Hospital in White Rock on April 15 with symptoms of congestion, fever and vomiting, but did not have COVID-19.  Her support staff were not permitted access due to restrictions put in place during the pandemic. Not long after being admitted, Knight was put on end-of-life care, and died days later. She was 40 years old.

“Ariis Knight died isolated, utterly alone, and, most chillingly of all, silenced,” said Dr. Heidi Janz, Chair of CCD’s Ending-of-Life Ethics Committee, who is also a member of the federal government’s COVID-19  and Disability Advisory Group. “No one gave her the means to communicate with her family or her medical team. Her basic rights as a human being were violated.”

Dr Natalie Spagnuolo, a member of CCD’s Social Policy Committee, agrees. “While it is true that hospital departments have the authority to grant visitor exemptions on a case by case basis and at their own discretion, this does not guarantee equitable access to health care for patients who rely on human supports in areas such as communication and decision-making – including many individuals with intellectual disabilities. These individuals need to be assured that they will not be separated from their support person upon admission.”

Pat Danforth, of DABC, underscores the urgent need for a change in hospital visitation policy. “Family and support teams can provide critical information, communication support, and decision-making support and comfort when people with disabilities are hospitalized. They should be seen as not just visitors, but essential partners in care.”

The groups are calling on Canada’s Minister of Health, Patti Haidu, to work with her provincial counterparts to ensure that the policies designating “essential” visitors/supports are immediately revised to include personal support workers, healthcare aides and family members who can assist people with disabilities, including many individuals with intellectual disabilities, in communicating with healthcare providers. 

“Unless urgent action is taken,” said Janz, “Ariis Knight could end up being just one of hundreds of people with communication disabilities to die alone and silenced.”

FOR FURTHER INFORMATION, CONTACT:

Dr. Heidi Janz, Chair, CCD Ending-of-Life Ethics Committee – Email : hjanz@ualberta.ca
Dr Natalie Spagnuolo, CCD Social Policy Committee – Email : natalie.spagnuolo@gmail.com
April D’Aubin, Research Analyst – Email: april@ccdonline.ca