Honouring the Memory of Ariis Knight
One of the saddest features of the COVID19 pandemic is the hundreds of thousands of hospital patients around the world facing end-of-life alone, separated from loved ones due to strict biosecurity measures to protect patients and hospital staff. This heartbreaking reality was brought home by the recent passing of Ariis Knight, a 40-year old BC woman who died alone after being hospitalized with serious flu-like symptoms.
Ariis, who had cerebral palsy and was non-verbal, was denied support from family and support staff and was therefore unable to communicate what she was feeling or thinking in her final days. The decisions that denied her comfort and support in her final days have prompted grief, bewilderment and anger. We too are deeply saddened by the tragic circumstances of her passing and extend our sincere condolences to all who knew and loved her.
The need for a strong ethical framework to guide our pandemic response
Our community wants to ensure that circumstances like these — the ones Ariis faced during her most difficult moments — do not happen again. Our pandemic response, and indeed our entire health care system, needs to intentionally accommodate the unique needs of persons with disabilities.
Patients with developmental disabilities like Ariis often communicate and process information in atypical ways. Hospital and care facility staff and policies need to recognize therefore that equitable access means accommodating specialized supports for communication, supported decision-making and specialized care for those with unique needs. This may include plain-language materials to help explain the patient’s situation and options. Family members, advocates or support staff may also need to assist with communication, decision-making and specialized care needs, with appropriate infection protection measures for all involved.
Healthcare systems also need to be aware of, and proactively guard against, historical attitudes that have devalued the lives of people with disabilities and which still remain deeply systemic.
Since the start of this pandemic, Inclusion BC has been working with our members, advocacy partners and governments at every level.
- Ethical Framework: We emphasize the need for a strong ethical framework to guide our pandemic response, especially in the healthcare sector.
- Medical Health Director: We also continue to urge the BC government to reinstate the Medical Health Director and Consultancy for people with developmental and intellectual disabilities.
In the wake of Ariis’s passing, Provincial Health Officer Dr. Bonnie Henry said her “expectation” is that hospitals will make accommodations to ensure that people with disabilities have the supports they need.
“While I expect long-term care homes and acute care hospitals to make reasonable exceptions to visitor policies to support people with disabilities, I also trust the most responsible clinicians to make the decision about when exceptions are clinically necessary given each individual circumstance,” Dr. Henry said
We extend our sincere condolences to everyone who knew and loved Ariis.