During the COVID-19 pandemic, we will not present our webcast, due to technical problems caused by heavy internet usage. However we are providing the text as a bulletin to offer up-to-date information about assisted suicide, euthanasia and ending-of-life practices for the disability community.
COVID-19 IN LONG-TERM CARE
- On March 27, we published a warning and list of recommendations from Jonathan Marchand and Daniel Pilote about preventing the spread of COVID-19 in Québec nursing homes. Since then, nearly 1,500 Québecers have died in long-term care. Mr. Marchand has repeated his warnings and recommendations in many media interviews and has posted often on facebook about the failure of current policies that have caused the catastrophe. Yet the Legault government sticks to its plan to build “more spacious, better-staffed” nursing homes. Once again, policy that affects disabled people is made by non-disabled people who ignore the expertise gained through our experience living under those flawed policies.
- Québec’s Public Health expertise and reference centre website features a graph, updated daily, showing the place of residence of people who died from COVID. As of April 28, 1,391 people in nursing homes or elderly housing had died, or 80% of the COVID-19 deaths in the province. In Québec, of 1,742 total deaths, 97% were of people aged 60 years or older; in Canada it’s 95%.
- Québec also keeps a list of nursing homes where cases of COVID-19 have been reported, which is updated daily (Ontario has a similar list). The Québec document doesn’t include private facilities, give the total number of places with an outbreak, or say how many staff are infected. As of April 28, there are more than 250 facilities on the Québec list, including 76 places where more than 25% of the residents are infected; in Ontario, 154 long-term care homes were listed as having active COVID-19 cases.
- The statistical report (rapport statistique) from Public Health Canada doesn’t give much information about where people got the infection. The report only looks at half of confirmed cases, and 3/4 of cases are classified as “unknown“ in the table that lists the source of exposure to the virus.
- Disabled people aren’t the only folks who are disadvantaged by what’s happening in nursing homes. Women, Immigrants and people of colour make up the majority of personal support workers, kitchen and cleaning staff in healthcare facilities. They earn the lowest wages, and have high rates of infection because they don’t have the protective equipment they need.
- In a blog post on the Not Dead Yet website, NDY’s director of minority outreach Anita Cameron talks about the different ways immigrants, indigenous, latinx, blacks and other communities of colour are affected by the pandemic in the U.S. “The Black community, especially, is being ravaged by COVID-19. We are 12 percent of the U.S. population, yet represent 59% of coronavirus deaths to date.”
- She says the racial inequalities that have always existed in healthcare need to be documented as they apply to COVID-19. She cites articles by journalist Ibram X. Kendi calling for data collection and criticizing campaigns to blame minority communities for high infection rates. While Cameron and Kendi provide some statistics on the impact of COVID on people of colour, it’s worth noting that in Canada, the government has said that it does not intend to collect racial and ethnic data on people who are infected.
- Anita Cameron points out that since people of colour “receive inferior healthcare compared to Whites, especially in the treatment of diabetes, heart conditions and cancer – three conditions that make COVID-19 more likely to be fatal – we are dying at a much higher rate.”
- She said the possibility of rationing “is especially frightening for disabled and seniors – and Blacks and communities of color.” She notes that “Though the [U.S.] Department of Health and Human Services’ Office of Civil Rights has issued guidance against discrimination and bias based on stereotypes of race, age and disability, among others, some of that guidance is not clear, and won’t stop medical personnel steeped in their own biases from doing as they wish.
- “COVID-19 is rampaging through nursing homes, psychiatric hospitals, group homes, institutions, jails, prisons, detention centers, all kinds of congregate settings,” said Ms. Cameron. “We know who are likely to be in such places – Black and Brown folks. We know who are likely to work there – Black and Brown people.
- “If anything is a wake-up call for people to see what the results of racial bias, discrimination and disparities in healthcare look like, this COVID-19 pandemic is it.”
- Ms. Cameron notes that “of the major organizations working on the issue of medical rationing and discrimination, few, if any, have Black staff or Black management. As yet, none have reached out to Black activists and organizations in a meaningful way.”
- Still, she says “we can’t wait around for mainstream organizations to include us.” She praised the mutual aid projects that have appeared, to “make sure folks in our community eat, have groceries, get information and get emotional support, but we still don’t have the resources that primarily White disabled folks and organizations have access to.
- “We must get the word out even more about how COVID-19 is ravaging the Black community. We must insist that the government keep racial data on who gets it, who dies, at what rate… We must make sure that disabled aren’t falling victim to medical rationing or mistreatment based on race, age and type of disability. We must insist that our first responders and front line workers are safe.”
NO FREE CHOICE: ARIIS KNIGHT
- Ariis Knight was a 40-year-old, non-verbal woman with Cerebral Palsy who died on April 18, three days after being admitted to a British Columbia hospital. According to a statement released by the hospital, “medical staff determined that additional support for communication was not required,” though Global news reports she was placed on “end-of-life care” shortly after being admitted to the hospital.
- Ms. Knight was admitted with congestion and vomiting, but tested negative for the Coronavirus. Though usually staff from the group home where she lived accompanied residents to provide communication support, the hospital did not allow staff to come in to help Ms. Knight.
- The media coverage of her death focuses on how “sad” it was that she “died alone,” and whether hospitals should make “reasonable exceptions to visitor policies” to allow support staff to be there. For us, this story raises several urgent questions:
- Did Ms. Knight receive adequate medical care? What factors led to the decision to only provide “end-of-life” care? Did she consent to this care? Was Ms. Knight informed of, and given any input into, decisions about her care? If she had a substitute decision maker, was that person consulted?
- Why was her right to communication access downgraded to an issue related to the hospital’s visitor policy?
- Did she have access to a communication device that would enable her to express ideas beyond “yes or no” answers? Why not?