Accessibility for Ontarians with Disabilities Act Alliance Update United for a Barrier-Free Society for All People with Disabilities
Web: https://www.aodaalliance.org Email: aodafeedback@gmail.com Twitter: @aodaalliance Facebook: https://www.facebook.com/aodaalliance/
January 14, 2021
SUMMARY
1. You Can Watch “The Agenda with Steve Paikin’s January 13, 2021 Panel on Critical Care Triage Issues for Patients with Disabilities Any Time
We continue our unbelievably uphill efforts to get the media to cover the immediate and important issue of the danger that patients with disabilities could be subjected to disability discrimination in access to life-saving critical medical care if overloaded hospitals must ration or “triage” critical medical care. The Ford Government still refuses to answer our letters on this issue.
The one and only televised panel discussion devoted to this issue that included disability and bioethics perspectives took place last night on TVO’s The Agenda with Steve Paikin. You can watch this 30 minute discussion any time by going to this link: https://www.youtube.com/watch?v=qkq1NmaXLwk&feature=youtu.be
The panelists were AODA Alliance Chair David Lepofsky, ARCH Disability Law Centre counsel Mariam Shanouda, Dr. James Downar (a member of the Government-appointed external advisory Bioethics Table and an author of the March 28, 2020 critical care triage protocol with which the disability community had strong objections) and Ontario research chair in bioethics Prof. Udo Schuklenk.
As you watch this panel, please remember that as far as we can tell, there is now no protocol in place in Ontario to direct hospitals what to do if critical care must be rationed or triaged. There is some reference during the panel to a current triage “protocol”. As speakers confirmed elsewhere during the panel, and as is also confirmed elsewhere, the Government has not finalized and issued any critical care triage protocol as of now.
We welcome your feedback on this panel. We will have more to say about it in the future. Write us at aodafeedback@gmail.com
We respectfully take issue with some of Dr. Downar’s and Prof. Schuklenk’s statements. Because of time limitations, there was not enough opportunity for David Lepofsky or Mariam Shanouda to itemize all of these concerns during the interview. We fully understand that there is a limited amount of information that can be conveyed in such a panel.
2. Canadian Press Publishes a Strong Report on the Critical Care Triage Dangers Posed for People with Disabilities
On January 13, 2021, the Canadian Press’s Liam Casey wrote an excellent article on the same critical care triage issue. So far, we have found that article posted on the websites of the Toronto Star and Global News. We have not yet ascertained if any newspapers included it in their hard copy editions, or if any radio or TV news reports included any of it. We set that report out below.
3. What You Can Do
Please spread the word far and wide about the panel on The Agenda with Steve Paikin, and the CP news story. Post these on social media and your website. Email them to others. Recruit a carrier pigeon to get the word out, if you can. Urge as many people as possible to tell the Ford Government that it should immediately consult directly with the public including people with disabilities, and not just hide behind its external advisory Bioethics Table. The Ford Government should also answer our unanswered letters on this issue, sent last fall.
We thank The Agenda with Steve Paikin and its host and staff for including this panel. We applaud the Canadian Press as well. We urge other news and public affairs programs to follow the commendable examples of The Agenda with Steve Paikin and Canadian Press, and give this issue the coverage that it so urgently deserves.
As of now, there have been 714 days, over 23 months, since the Ford Government received the final report of the Independent Review of the implementation of the Accessibility for Ontarians with Disabilities Act by former Ontario Lieutenant Governor David Onley. The Government has announced no comprehensive plan of new action to implement that ground-breaking report. This worsens the festering problems facing patients with disabilities during the COVID-19 pandemic, such as those addressed in this new episode of The Agenda with Steve Paikin. For more background on this issue, check out:
1. The AODA Alliance’s December 21, 2020 news release on the critical care triage issue.
2. The Government’s external advisory Bioethics Table’s September 11, 2020 draft critical care triage protocol, finally revealed days ago.
3. The December 3, 2020 open letter to the Ford Government from 64 community organizations, calling for the Government to make public the secret report on critical care triage from the Government-appointed Bioethics Table.
4. The AODA Alliance’s unanswered September 25, 2020 letter, its November 2, 2020 letter, its November 9, 2020 letter, its December 7, 2020 letter, its December 15, 2020 letter and its December 17, 2020 letter to Health Minister Christine Elliott.
5. The August 30, 2020 AODA Alliance submission to the Ford Government’s Bioethics Table, and a captioned online video of the AODA Alliance’s August 31, 2020 oral presentation to the Bioethics Table on disability discrimination concerns in critical care triage.
6. The September 1, 2020 submission and July 20, 2020 submission by the ARCH Disability Law Centre to the Bioethics Table.
7. The November 5, 2020 captioned online speech by AODA Alliance Chair David Lepofsky on the disability rights concerns with Ontario’s critical care triage protocol.
8. The AODA Alliance website’s health care page, detailing its efforts to tear down barriers in the health care system facing patients with disabilities, and our COVID-19 page, detailing our efforts to address the needs of people with disabilities during the COVID-19 crisis. MORE DETAILS
January 13, 2021 Toronto Star Online
Originally posted at https://www.thestar.com/news/gta/2021/01/13/medical-staff-need-guidance-on-life-or-death-triage-decision-as-icus-fill-up-experts.html
January 13, 2021 Toronto Star Online
Originally posted at https://www.thestar.com/news/gta/2021/01/13/medical-staff-need-guidance-on-life-or-death-triage-decision-as-icus-fill-up-experts.html
Medical staff need guidance on life-or-death triage decision as ICUs fill up: experts
An ICU health-care worker shown inside a negative pressure room cares for a COVID-19 patient on a ventilator at the Humber River Hospital during the COVID-19
pandemic in Toronto on Wednesday, December 9, 2020. Hospitals and human rights organizations want Ontario to finalize its plan on who, and how, life or
death decisions for patients will be made if and when the day comes where ICU beds will be full. By Liam Casey The Canadian Press
Wed., Jan. 13, 20213
TORONTO – As intensive care units in Ontario hospitals continue to fill up with COVID-19 patients, the province has yet to finalize a plan on who should get life-saving care when health resources are limited.
The latest COVID-19 projections show the province’s ICUs could reach “gridlock” by mid-to-late February. At that point, health-care workers will have to decide who gets an ICU bed and who doesn’t – a practice known as critical care triage. It’s a heart-wrenching decision doctors in a number of countries with hospitals overwhelmed with COVID-19 patients have had to make.
“It’s really concerning to not know what the plan is and transparency around that would go a long way towards everyone’s ability to prepare and everyone’s mental well-being,” said Dr. Samantha Hill, the president of the Ontario Medical Association, which represents more than 40,000 physicians.
The province has stumbled in its efforts to get the critical care triage ethical framework out to doctors.
Ontario Health sent out a critical care triage protocol on March 28, 2020, but retracted it several months later after an outcry from human rights organizations.
“The first protocol was horrifically discriminatory against patients with disabilities,” said David Lepofsky, the chairman of Accessibility for Ontarians with Disabilities Act Alliance.
One problem with that proposal was the use of a “clinical frailty scale,” or CFS, Lepofsky said. The scale is also part of a proposed framework sent to the government by the Bioethics Table, which advises the province on the health system’s response to COVID-19.
The document – titled “Critical Care Triage during Major Surge in the COVID-19 Pandemic: Proposed Framework for Ontario” – lays out how a patient would qualify or be excluded from critical care and was sent to the province in September.
The clinical frailty scale is used as a prognostic tool for progressive illnesses that assesses a patient’s general deterioration over time, the Bioethics Table notes in the document, which was obtained by The Canadian Press.
However, the proposal acknowledges that the CFS “would seem to conflate disability with frailty and hence would contribute to over-triaging of persons with disabilities.”
It further notes that the CFS “illustrates how clinical evidence and experience are not sufficient alone to establish the justifiable use of a clinical tool and calls attention to the embedding of social norms within clinical tools and in their application in practice.”
The Ontario Human Rights Commission has also expressed concern about the recommendation that patients be evaluated for their survival potential over the next 12 months.
Under the Bioethics Table’s proposed protocol, patients would be evaluated and assigned into colour-coded categories based on the predicted percentage of short-term mortality risk over the next year.
There would then be three levels of triage depending on demand and availability of beds. In Level 1 triage, patients who have greater than 20 per cent chance of surviving 12 months should be prioritized. In Level 2, patients with greater than 50 per cent chance of survival in a year should be prioritized and, in Level 3, patients who have a greater than 70 per cent chance of survival should be prioritized.
Ena Chadha, the chief commissioner of the Ontario Human Rights Commission, said the 12-month time period is troubling.
“A doctor can make a decision in the short term: is this person going to survive next week, the next two weeks,” she said.
“But when you start looking at one year…you are going to be infused with discriminatory ideas about the person’s disability and age. Our stakeholders would like to see a much shorter time frame.”
Both Lepofsky and Chadha, along with the Bioethics Table, said there must also be due process an appeal process so that life or death decisions aren’t made by one person.
Another major concern for both Lepofsky and Chadha is the province’s lack of transparency on such an important issue.
“This process is very opaque as to who are the decision-makers, what is the process and where are we at right now?” Chadha said.
“This is distressing for our community stakeholders. They are very worried that their dignity and life is at stake and that when it comes to making decisions about a very horrible death, the health-care decision-makers may not understand the value of their life.”
The Ministry of Health said the Bioethics Table will continue to talk to various stakeholders.
“These conversations are ongoing to ensure that the proposed framework reflects the best available evidence and advice,” said spokesman David Jensen, noting that nothing has been approved by the ministry.