Accessibility for Ontarians with Disabilities Act Alliance Update United for a Barrier-Free Society for All People with Disabilities
Web: http://www.aodaalliance.org Email: aodafeedback@gmail.com Twitter: @aodaalliance Facebook: http://www.facebook.com/aodaalliance/
December 18, 2020
SUMMARY
Yesterday, the AODA Alliance joined the ARCH Disability Law Centre and a number of other advocates from Ontario’s disability, racialized and Indigenous communities, all invited by the Ontario Human Rights Commission to a virtual roundtable discussion. It focused on the September 11, 2020 draft critical medical care triage protocol that was finally made public a week earlier. We have campaigned for three months to get that document made public.
Given the number of participants, we could only scratch the surface on this life-and-death issue during this two-hour roundtable. The painful fact that that day, Ontario had another record-breaking number of new COVID-19 infections made this discussion especially urgent and long-overdue.
A number of new important issues were identified at this roundtable by a spectrum of participants. All were in strong agreement on a range of concerns. The AODA Alliance’s concerns were echoed or endorsed by a number of participants.
Some of the key points which the AODA Alliance raised are spelled out in the newest letter to Ontario Health Minister Christine Elliot from the AODA Alliance, dated December 17, 2020 and set out below. We hope that the Minister will this time respond to our letter. The Ford Government has not answered any of our earlier letters to her on this topic.
Present to receive feedback at the roundtable were representatives from the Ontario Human Rights Commission and the Ontario-Government’s external Bioethics Table. As well, there were some representatives from the Ford Government, including from the Health Minister’s office, from Ontario Health, and from the Government’s internal Critical Care Command Centre. We asked to be sent the names and contact information for these provincial officials and are waiting to hear back. We also asked to be sent all the information on the Bioethics Table’s September 11, 2020 draft critical care triage protocol that the Government has sent to hospitals. No one spoke up to agree to send this to us.
This entire triage issue remains in flux. We will keep you posted. With COVID-19 infections rising and hospitals getting filled to capacity, we fear that triage may be taking place right now.
Send your feedback to us at aodafeedback@gmail.com.
For more background on this issue, check out:
1. The Government’s external advisory Bioethics Table’s September 11, 2020 draft critical care triage protocol.
2. 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.
3. The AODA Alliance’s unanswered September 25, 2020 letter, its November 2, 2020 letter, its November 9, 2020 letter, its December 7, 2020 letter, and its December 15, 2020 letter to Health Minister Christine Elliott.
4. 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.
5. The September 1, 2020 submission and July 20, 2020 submission by the ARCH Disability Law Centre to the Bioethics Table.
6. 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.
7. 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
December 17, 2020 Letter from the AODA Alliance to Ontario Health Minister Christine Elliott Accessibility for Ontarians with Disabilities Act Alliance
United for a Barrier-Free Society for All People with Disabilities
Web: www.aodaalliance.org Email: aodafeedback@gmail.com Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/
December 17, 2020
To: The Hon. Christine Elliott, Minister of Health
Via email: Christine.elliott@ontario.ca
Ministry of Health
5th Floor
777 Bay St.
Toronto, ON M7A 2J3
Dear Minister,
Re: Ontario Government’s Protocol for Medical Triage of Life-Saving Critical Care in the Event Hospitals Cannot Handle All COVID-19 Cases
We urgently write to follow up on our five unanswered letters to you dated September 25, November 2, November 9, December 7 and December 15, 2020. These ask about the Ford Government’s plans for deciding which patients would be refused life-saving critical medical care that they need, if the record-breaking surge in COVID-19 cases overloads Ontario hospitals and requires rationing or “triage” of critical care beds and services.
This morning, we took part in a two-hour virtual roundtable, convened by the Ontario Human Rights Commission and the Government-appointed COVID-19 Bioethics Table. It was convened on very short notice to gather feedback on the Bioethics Table’s recently-released September 11, 2020 proposed critical care triage protocol.
These are among the many urgent points that arose at or from the discussion at that roundtable:
1. None of us invited to that roundtable from the disability, racialized or Indigenous communities had had anywhere near the time we needed to properly review the detailed 36-page September 11, 2020 draft critical care triage protocol. Such virtual face-to-face consultations are vital but must be preceded by enough time to prepare. Sending in written submissions is no substitute. Don’t now consider that the consultation check box can be ticked.
2. No one has shown us that anything in the proposed triage protocol is authorized by law. We have raised this concern time and again. The most interesting and thorough discussion with the Bioethics Table on how triage should be carried out is utterly irrelevant if the protocol, whatever it says, is not properly mandated by law a law that passes constitutional muster.
For example, it will be shocking and deeply disturbing to many if not most to learn the draft triage protocol would have doctors under certain triage circumstances actually withdraw critical care services from a critical care patient who needs those services and who is in the middle of receiving those insured medical services. How can a mere memo from some bureaucrat in the Ministry of Health or from Ontario Health purport to authorize that, if there is no legislative authority for it? Couldn’t that give rise to possible criminal responsibility, for those taking such action? We don’t believe that a provincial memo overrides the Criminal Code of Canada.
3. It appeared that none of us, from whom input was being sought, could understand from this 36-page document exactly how a doctor is to specifically decide who will be refused critical care under the September 11, 2020 draft triage protocol. We cannot give the kind of detailed input that is needed without that being clarified. We wrote the Bioethics Table co-chairs about this in advance of this meeting. No such clarification was provided.
4. An extremely worrisome revelation was made in the only statement we have heard from anyone within the Government’s internal critical care triage infrastructure. Dr. Andrew Baker identified himself as a member of the Ministry of Health’s Critical Care Command Centre. Right near the end of the roundtable, responding to feedback at the roundtable, Dr. Baker stated that doctors value life inherently, and that at present, doctors “default to life years, when we have finite resources. One principle, life years.”
What we take from this is that at present, such triage decisions would be made based on “life years saved.” He went on to say that a new approach to triage, embodying the concerns raised at the roundtable (with which he seemed to find real merit), would in effect have to wait for a future time. That would have to be after this pandemic is over.
That statement in effect summarily and categorically dismissed all the serious human rights and constitutional concerns we had raised for two hours as not ready to be implemented during this pandemic, even if critical care triage becomes necessary.
We strongly disagree. The Government cannot give up on this now. The thought that we might not have time to put these principles into action now is especially cruel, since our community has been pleading with your Government since early April to directly consult us on this issue.
Dr. Baker’s endorsement of using “life years saved” points to an approach riddled with discrimination because of age, disability, or both. Minister, Dr. Baker’s single statement crystalizes so many of our concerns. It reveals that whatever is written in this or other triage protocols won’t matter at the front lines, and that vulnerable seniors and people with disabilities, among others, now have a great deal to worry about.
This requires you to immediately take over personal leadership on this issue, and to let our vulnerable communities speak directly to you and your senior officials.
5. From what we can determine, the September 11, 2020 draft triage protocol would have a doctor or doctors assess, based on an individual clinical assessment, if a patient, needing critical care, has less than 12 months to live. As I pointed out at the roundtable, Dr. James Downar, of the Bioethics Table, has previously told us that when doctors assess whether a patient has less than 3 months to live in order to decide if that patient should be allowed to go into palliative care, doctors “lie”. By this, we understand him to mean that they try to make a result-oriented assessment to get palliative resources for their patient.
If doctors routinely lie for assessing a patient’s likely mortality within three months, we have every reason to fear that they could do the same when the figure is changed from three months to twelve months, in connection with critical care triage decisions. We realize that there is a difference between admission to palliative care on the one hand, and admission to critical care on the other. However, for current purposes, that difference does not make a difference.
6. The September 11, 2020 draft critical care triage protocol, like the two earlier versions that the Bioethics Table produced this year, give these life-and-death decisions over to doctors. As addressed in our next point, we think this needs reconsideration. It provides no appeal from those doctors to an outside independent body, such as a court or the Consent and Capacity Board. Such an appeal is needed. Moreover, it proposes to immunize doctors and other health care professionals making these life-and-death decisions from any accountability. It states that the protocol should:
“4. Ensure liability protection for all those who would be involved in implementing the Proposed Framework (e.g., physicians, clinical teams, Triage Team members, Appeals Committee members, implementation planners, etc.), including an Emergency Order related to any aspect requiring a deviation from the Health Care Consent Act.”
It is certainly questionable whether that can be done. We believe it is beyond question that it should not be done.
7. As we also emphasized at the roundtable, it is not clear to us that these purely medical triage criteria are the way for Ontario to go. Other non-medical triage criteria outside the preserve of doctors are worth considering.
Minister, please talk to us. Have your Ministry officials talk to us. Don’t wait until it is too late.
Stay safe.
Sincerely,
David Lepofsky, CM, O. Ont
Chair, Accessibility for Ontarians with Disabilities Act Alliance
Enclosure: December 11, 2020 email from AODA Alliance Chair David Lepofsky to Jennifer Gibson, Bioethics Table co-chair
cc:
Premier Doug Ford premier@ontario.ca
Helen Angus, Deputy Minister of Health helen.angus@ontario.ca Raymond Cho, Minister of Seniors and Accessibility Raymond.cho@ontario.ca
Denise Cole, Deputy Minister for Seniors and Accessibility Denise.Cole@ontario.ca
Mary Bartolomucci, Assistant Deputy Minister for the Accessibility Directorate, Mary.Bartolomucci@ontario.ca
Todd Smith, Minister of Children, Community and Social Services todd.smithco@pc.ola.org
Janet Menard, Deputy Minister, Ministry of Children, Community and Social Services Janet.Menard@ontario.ca
Ena Chadha, Chief Commissioner of the Ontario Human Rights Commission cco@ohrc.on.ca Jennifer Gibson, Co-Chair, Bioethics Table jennifer.gibson@utoronto.ca Dianne Godkin, Co-Chair, Bioethics Table Dianne.Godkin@thp.ca