The Ontario Bioethics Table’s Secret September 11, 2020 Recommendations on How to Ration or “Triage” Life-Saving Critical Medical Care if COVID-19 Cases Overload Ontario Hospitals are Finally Revealed, and Incorporate a Number of Disability Advocates’ Proposals


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: [email protected] Twitter: @aodaalliance Facebook: http://www.facebook.com/aodaalliance/

December 15, 2020

SUMMARY

What a major partial breakthrough we have had in our 9-month campaign to ensure that patients with disabilities face no discrimination in access to life-saving critical care if the uncontrolled surge in COVID-19 infections requires the rationing or triage of critical care in Ontario hospitals. At the end of the day last Thursday, December 10, 2020, we finally got to see the previously-secret September 11, 2020 recommendations on critical care triage from the Government-appointed Bioethics Table. Right here and now, we make these recommendations public. You can download the Bioethics Table’s September 11, 2020 recommendations on how to conduct critical care triage by clicking on this link: https://www.aodaalliance.org/wp-content/uploads/2020/12/Sept-11-2020-Draft-Critical-Care-Triage-Recommendations-from-Ontario-Bioethics-Table.docx

This Update gives you all the background leading to this interim breakthrough. It is going to take us some time to fully analyze the Bioethics Table’s September 11, 2020 recommendations. However, from our first quick review, it is clear that last summer, the Bioethics Table adopted a number of key points made by disability community advocates and experts including, among others, the AODA Alliance and the ARCH Disability Law Centre.

The Bioethics Table commendably that the discriminatory Clinical Frailty Scale, which the Government had previously directed all hospitals to use for triage, should NOT be used, because it is discriminatory against patients with disabilities. The Bioethics Table recommended that human rights principles should form an important part of any triage protocol. It recommended a number of key restrictions on triage decisions for which we advocated in the AODA Alliance’s April 14, 2020 Discussion Paper on this issue. It called for there to be due process protections for patients with disabilities who are at risk of being refused life-saving critical care due to rationing, though not all the due process safeguards for which we advocate.

These are all very important steps forward. However, we are not yet out of the woods. There remain a number of important issues that we are exploring. It is not clear to us exactly how decisions would be made on who is refused life-saving critical care that they medically need. It is not clear that disability discrimination has been prevented, despite all those helpful improvements for which we commend the Bioethics Table.

From our review of this document, it is crystal clear that the Ford Government had no excuse or justification for keeping it secret for three months. Precious time has been inexcusably lost in the midst of a dangerous pandemic.

The AODA Alliance will be taking part in a roundtable on December 17, 2020 on this topic, organized by the Ontario Human Rights Commission. We thank the Ontario Human Rights Commission for helping press the Ford Government on this issue. Our combined pressure helped get us to this new stage.

Despite all the excitement about the new COVID-19 vaccines, the risk of critical care triage gets greater and greater as daily infections rise. Today Ontario reported a record-breaking 2,275 new cases. We will have more to say on this topic after we roll up our sleeves and dig further into the Bioethics Table’s September 11, 2020 recommendations.

Below we provide you with a short chronology of the major events on this long and winding road, including the new events unfolding over the past 10 days leading up to this news. We also set out in chronological order the six letters that document these events as they unfolded.

1. The December 7, 2020 letter from the AODA Alliance to Health Minister Christine Elliott
2. The December 7, 2020 letter from the Ontario Human Rights Commission’s Chief Commissioner to Health Minister Christine Elliott
3. The December 10, 2020 Letter from the Ontario Human Rights Commission to the AODA Alliance and Other Human Rights Organizations
4. The December 11, 2020 email from AODA Alliance Chair David Lepofsky to Bioethics Table Co-chair Jennifer Gibson
5. The December 15, 2020 letter from the AODA Alliance to Health Minister Christine Elliott, and
6. The December 15, 2020 email from AODA Alliance Chair David Lepofsky to the Bioethics Table Co-chairs.

For more background on this issue, check out:
1. 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.
2. The AODA Alliance’s unanswered September 25, 2020 letter, its November 2, 2020 letter and its November 9, 2020 letter to Health Minister Christine Elliott
3. 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.
4. The September 1, 2020 submission and July 20, 2020 submission by the ARCH Disability Law Centre to the Bioethics Table.
5. 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
6. 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

Short Chronology of the Ontario Critical Care Triage Saga

(Note: this does not list every letter or other action taken on this issue by disability advocates, including the AODA Alliance)

February 2020: With the COVID-19 pandemic approaching Canada, the Ontario Government appoints an external advisory Bioethics Table to propose how to ration or triage critical medical care if hospitals get overloaded. The public is not told about this. Disability community is not consulted.

March 28, 2020: the Bioethics Table recommends a critical care triage protocol. The Ford Government sends it to all Ontario hospitals. It is not made public. The public is not told this is going on.

April 8, 2020: After word of the triage protocol is leaked to the disability community, an open letter to the Ford Government is made public, condemning the March 28, 2020 protocol as discriminating based on disability.

April 21, 2020: The Ford Government says the March 28, 2020 triage protocol is only a draft, even though it was not marked draft. The Government says human rights and community experts will be consulted on it.

Summer 2020: The Bioethics Table invites some disability advocates and experts to a series of virtual meetings to get input. A revised draft triage protocol is shared, which the AODA Alliance makes public on its website on July 16, 2020.

August 31, 2020: Disability advocates and experts make their closing presentation to the Bioethics Table and send in detailed written submissions.

September 11, 2020: the Bioethics Table submits its revised recommendations on critical care triage to the Ford Government. These are shared with the Ontario Human Rights Commission but not the public, despite the fact that the Ontario Human Rights Commission and the Bioethics Table urge the Government to make this report public.

September to December 2020: the Ford Government refuses to make public the Bioethics Table’s September 11, 2020 recommendations, despite requests from the disability community, the Opposition in the Legislature, the Bioethics Table, the Ontario Human Rights Commission and the media. No explanation for this secrecy is provided.

October 29, 2020: The Ford Government writes Ontario hospitals to belatedly cancel the March 28, 2020 triage protocol and direct that it not be followed. The Government does not make this action public.

November 5, 2020: In the Legislature during question Period, the NDP presses the Government to make public the Bioethics Table’s recommendations and to cancel the March 28, 2020 triage protocol. In response to this question, the Government reveals for the first time that it had cancelled the March 28, 2020 critical care triage protocol. It says that it may send a new critical care triage protocol to health providers in the future if conditions deteriorate significantly but doubted that such conditions would happen.

December 3, 2020: 64 organizations mark the International Day for Persons with Disabilities by making public an open letter to the Ford Government calling for the Government to make public the Bioethics Table’s September 11, 2020 triage protocol recommendations. The Government is confronted on this issue in the Legislature during Question Period.

December 3, 2020: During the Premier’s midday news conference, Health Minister Christine Elliott tells the media there are discussions now ongoing with the Ontario Human Rights Commission on what the triage protocol should provide.

December 7, 2020: The Chief Commissioner of the Ontario Human Rights Commission writes Health Minister Christine Elliott in substance contradicting her claim that discussions are now ongoing with the Ontario Human Rights Commission on the triage protocol. The Chief Commissioner states that the Minister has not even answered the Commission’s October 16 and November 6, 2020 letters to the Minister on this topic. (Letter set out below.)

December 7, 2020: The AODA Alliance writes Health Minister Christine Elliott documenting that there is an unexplained and troubling contradiction between the Minister’s December 3, 2020 statement to the media and the Human Rights Commission’s December 7, 2020 letter to the Minister. The Minister is again pressed to make public the Bioethics Table’s September 11, 2020 triage recommendations. (Letter set out below.)

December 10, 2020: The Ontario Human Rights Commission writes the AODA Alliance and other human rights organizations to provide a copy of the Bioethics Table’s September 11, 2020 triage recommendations. A December 17, 2020 roundtable is announced to get input on those recommendations. (Letter set out below.) We believe that the combination of all our efforts and those of the Ontario Human Rights Commission over the previous week helped get the Government to finally let the September 11, 2020 Bioethics Table recommendations see the light of day.

December 11, 2020: AODA Alliance Chair David Lepofsky writes the Bioethics Table Chair to resist a claim that the Bioethics Table’s September 11, 2020 recommendations remain confidential. The AODA Alliance will treat them as public. (Letter set out below.)

December 15, 2020: AODA Alliance again writes Health Minister Christine Elliott to ask the Government to make public any documents it has sent hospitals on barrier’s September 11, 2020 triage recommendations, to ask to speak directly with the Government’s internal Critical Care Command Table, and to urge an end to the Government’s protracted secrecy in this area. (Letter set out below.)

December 15, 2020: AODA Alliance Chair David Lepofsky writes the Bioethics Table Co-Chairs to ask for further information to help human rights organizations prepare for December 17, 2020 roundtable. (Letter set out below.)

December 7, 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: [email protected] Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/

December 7, 2020

To: The Hon. Christine Elliott, Minister of Health
Via email: [email protected]
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 write about your public statement to the media on December 3, 2020, the International Day for Persons with Disabilities. As we clearly understood it, you said that your Government is now holding ongoing discussions with the Ontario Human Rights Commission on a proposed protocol for rationing or triage of life-saving critical medical care, if skyrocketing COVID-19 infections require rationing of critical care in Ontario hospitals. The text of your full exchange with a Global News reporter, available on Youtube, during Premier Ford’s December 3, 2020 news conference, is as follows:

Miranda Anthistle: Hi there, thank you for my question.
Doug Ford: Hi. How are you?
Miranda Anthistle: Ok, so the first one is, the Ontarians With Disabilities Act Alliance has written an open letter to your government about transparency on how decisions will be made when it comes to prioritizing life-saving treatments and who will get them if hospitals become overwhelmed. So will this information be released and how does the government plan on prioritizing life-saving treatments?

Doug Ford: Pass that to the Minister:
Christine Elliott: Well this is a very important issue and one that health care professionals asked us to deal with very early on in the pandemic because they were concerned about Ontario becoming overwhelmed in the same way that Italy was, for example. So a draft protocol was developed that had been sent to hospitals, but this is really only meant for internal purposes but I know that a numberand is not being acted upon. It was met with a lot of concern by a number of disabilities groups and seniors groups and so we reached out to the table at the Health Command Table reached out to the Ontario Human Rights Commission to obtain their assistance in redrafting a protocol and I understand there is still discussions ongoing with the Ontario Human Rights Commission in order to make sure that we reach a level place where everyone is dealt with fairly in terms of dealing with the triage protocol whether it’s for people with disabilities, for seniors, racialized communities, indigenous communities making sure that it’s there and level for all people.

So those discussions are ongoing. I’m not sure exactly how long they will be continuing but that will come forward at the appropriate time.

As we understand it, in that statement, you suggest that the Government now is having ongoing discussions with the Ontario Human Rights Commission over what a critical care triage protocol should include, to ensure that it is fair to all, including people with disabilities, seniors, members of Indigenous communities and members of racialized communities. Yet from a letter to you today from the Chief Commissioner of the Ontario Human Rights Commission, Ena Chadha, it clearly appears that no such discussions with the Government are in fact taking place. To the contrary, Chief Commissioner Chadha makes it clear that you have not even answered her two recent letters on this very topic, dated October 16, 2020 and November 6, 2020. Chief Commissioner Chadha states as follows in her November 7, 2020 letter to you:

I am writing further to my letters of October 16, 2020, and November 6, 2020, requesting an opportunity to meet with you to discuss next steps for a consultation with human rights stakeholders on the latest draft of the COVID-19 critical care triage protocol.
I have not received any response or heard directly from your office about these requests, and was surprised to learn that, during the Premier’s midday news conference on December 3, 2020, you stated discussions are now ongoing with the Ontario Human Rights Commission (OHRC) about the proper critical care triage protocol to put in place that is fair to everyone. I understand that you further stated that you were not sure how long these discussions with the OHRC were continuing, “but the [critical care triage protocol] would come forward at the appropriate time.”

Given this statement to the media, the concerns I previously raised in my October 16 letter, and the urgent need to ensure that vulnerable groups who will be affected by any critical care triage protocol have an opportunity to share their perspectives before it is finalized, I am hoping that the Government will now agree to broadly disseminate the latest draft of the critical care triage protocol and promptly support and undertake consultations with human rights stakeholders. As you no doubt are aware, many human rights stakeholders have been strenuously calling for your Ministry to make public and consult on the current version of the critical care triage protocol because of potential concerns of inequitable implications in rationing or triaging critical medical care.

I would be pleased to meet with you to further discuss the OHRC’s interest and participation in a consultation process, as well as our capacity to serve as a resource and support this urgent work. My office will contact your office to schedule a call as soon as possible so we can be in a position to move forward quickly on this important step for protecting all Ontarians.

Today’s letter to you from the Chief Commissioner of the Ontario Human Rights Commission clearly appears to contradict what you said to the media on a very important point regarding a potential life-and-death issue. The Government can hardly claim it has ongoing discussions with the Ontario Human Rights Commission on the terms of a possible critical medical care triage protocol if the Government has not even answered the Chief Commissioner’s two recent letters to you on that very topic in over a months since you received the latest of those letters. This is all the more disturbing because it is our understanding that the issue of what to do about critical care triage shifted directly to your Ministry and your Government after the Bioethics Table submitted its report and recommendations to the Government and the Ontario Human Rights Commission in the middle of September. Put simply, since then, this issue has been on your plate.

Your Government’s approach to this issue continues to be riddled with protracted, harmful and unjustified secrecy and evasiveness. Last winter, your Government did not make public the fact that it had directed its Bioethics Table to prepare a proposed critical care triage protocol, and that a March 28, 2020 protocol was sent to all Ontario hospitals. The disability community learned about this through a leak.

We and others called for months for that discriminatory protocol to be cancelled. Yet your Government did not make public the fact that it had finally cancelled that March 28, 2020 protocol until it was pressed on this issue in Question Period on November 5, 2020.
You have not answered any of our letters to you on this issue, dated September 25, 2020, November 2, 2020 or November 9, 2020. No one from your Ministry or from Ontario Health (part of the Government) has ever reached out to us to discuss anything regarding the issue of critical medical care triage in the many months that we have publicly been raising serious concerns over this issue.

As noted above, according to today’s letter to you from the Ontario Human Rights Commission’s Chief Commissioner, you have not even answered the Commission’s two letters to you this fall. Your Government has repeatedly refused to make public the report and recommendations of the Government-appointed Bioethics Table, which you received almost three months ago.

When your Government was clearly and directly asked to release those recommendations to the public in Question Period in the Legislature on November 5, 2020 and again on December 3, 2020 (the International Day for Persons with Disabilities), your Government’s seemingly scripted answers were demonstrably evasive. When asked there, your Government did not agree to make those recommendations public. Similarly, your Government refused to do so in response to inquiries earlier this fall from Radio Canada and the Toronto Star.

The Ontario Human Rights Commission has repeatedly called on you to make public the Bioethics Table’s report and recommendations, and to consult with affected stakeholders in the human rights community. We would count ourselves among them. Your own Bioethics Table has called on you to make public their recommendations. On December 3, 2020, an open letter to you from fully 64 organizations and groups called on you to make those recommendations public now.

The Government has never offered a word of explanation or justification for its protracted secrecy here. It has not explained how that secrecy could be squared with the Premier’s promise to be open and transparent about the Government’s response to the COVID-19 pandemic, and his promise to protect the most vulnerable.

At the Premier’s December 3, 2020 news conference, you stated that a protocol would be made public at the appropriate time. Minister, now is the appropriate time! More and more people are contracting COVID-19. Hospitals are getting closer and closer to the breaking point. US media reports that medical rationing is on the verge of becoming necessary in some places, if it is not already the case now. Moreover, even if the Government is still working on this issue, we need to now see the recommendations that the Bioethics Table submitted to you three months ago. We need to see to what extent, if any, the Bioethics Table implemented recommendations that disability advocates and experts presented to them. On this life-and-death issue, Ontarians, including vulnerable people with disabilities do not have the luxury of time!

We need to now have the opportunity to directly speak to and consult with those within your Government who are working on this issue. Last summer, we only got to speak to the Bioethics Table. That is a voluntary body, outside Government, that only made non-binding recommendations to the Government. It is not the body that decides what the final triage protocol would be.

We ask you to let us know who, within the Government, is working on this issue, and who has lead responsibility for it? In a number of other areas, the Government has established command tables. Have you established a triage command table, or some such working group? If so, what is their mandate? Who is on this committee or in this group? Which members of the Bioethics Table, if any, are on that internal Government committee or working group? What are their time lines for action?

Last winter, your Government was correct to conclude that it needs to get ahead of the game, and to have a critical care triage protocol in place, in case it is needed. Our shared hope that triage will not be needed does not diminish the need for to be ready, just in case.

Ontarians cannot afford to simply trust your Government’s speculative claim in the Legislature on November 5, 2020 that the situation in Ontario should not require resort to critical care triage. Since making that claim, daily rates of infections have continued to break records, day after day. Various communities have been locked down. Restrictions during lock-downs have been gradually made more strict. The Government’s modelling predicts much worse to come. Media reports show that hospitals are being stretched.

The Government has claimed that it has expanded the number of hospital beds in the face of the COVID-19 pandemic. Does each of these new beds qualify as a fully-equipped and fully staffed intensive care bed, with all the intensive care doctors, nurses, equipment, environmental controls and ventilator technicians needed to effectively support those beds?
Please answer our important inquiries in this letter. Please fulfil Premier Ford’s written election promises to 2.6 million Ontarians with disabilities in his May 15, 2018 letter to the AODA Alliance, that:

Your issues are close to the hearts of our Ontario PC Caucus and Candidates, which is why they will play an outstanding role in shaping policy for the Ontario PC Party to assist Ontarians in need.

Sincerely,

David Lepofsky CM, O. Ont
Chair Accessibility for Ontarians with Disabilities Act Alliance

CC: Premier Doug Ford [email protected]
Helen Angus, Deputy Minister of Health [email protected] Raymond Cho, Minister of Seniors and Accessibility [email protected]
Denise Cole, Deputy Minister for Seniors and Accessibility [email protected]
Mary Bartolomucci, Assistant Deputy Minister for the Accessibility Directorate, [email protected]
Todd Smith, Minister of Children, Community and Social Services [email protected]
Janet Menard, Deputy Minister, Ministry of Children, Community and Social Services [email protected]
Ena Chadha, Chief Commissioner of the Ontario Human Rights Commission [email protected]

December 7, 2020 Letter from Ontario Human Rights Chief Commissioner Ena Chadha to Ontario Health Minister Christine Elliott

December 7, 2020

The Honourable Christine Elliott
Minister of Health
College Park 5th Floor, 777 Bay Street
Toronto, ON M7A 2J3
[email protected]

Dear Minister Elliott:

RE: Follow-up on critical care triage protocol

I am writing further to my letters of October 16, 2020, and November 6, 2020, requesting an opportunity to meet with you to discuss next steps for a consultation with human rights stakeholders on the latest draft of the COVID-19 critical care triage protocol.

I have not received any response or heard directly from your office about these requests, and was surprised to learn that, during the Premier’s midday news conference on December 3, 2020, you stated discussions are now ongoing with the Ontario Human Rights Commission (OHRC) about the proper critical care triage protocol to put in place that is fair to everyone. I understand that you further stated that you were not sure how long these discussions with the OHRC were continuing, “but the [critical care triage protocol] would come forward at the appropriate time.”

Given this statement to the media, the concerns I previously raised in my October 16 letter, and the urgent need to ensure that vulnerable groups who will be affected by any critical care triage protocol have an opportunity to share their perspectives before it is finalized, I am hoping that the Government will now agree to broadly disseminate the latest draft of the critical care triage protocol and promptly support and undertake consultations with human rights stakeholders. As you no doubt are aware, many human rights stakeholders have been strenuously calling for your Ministry to make public and consult on the current version of the critical care triage protocol because of potential concerns of inequitable implications in rationing or triaging critical medical care.

I would be pleased to meet with you to further discuss the OHRC’s interest and participation in a consultation process, as well as our capacity to serve as a resource and support this urgent work. My office will contact your office to schedule a call as soon as possible so we can be in a position to move forward quickly on this important step for protecting all Ontarians.

Sincerely,

Ena Chadha, LL.B., LL.M.
Chief Commissioner

cc: Helen Angus, Deputy Minister, Ministry of Health
Matthew Anderson, President and CEO of Ontario Health
Jennifer Gibson, Co-Chair, COVID-19 Bioethics Table
Hon. Doug Downey, Attorney General
David Corbett, Deputy Attorney General, Ministry of the Attorney General OHRC Commissioners

December 10, 2020 Email from Ontario Human Rights Commission to AODA Alliance and Other Human Rights Organizations

December 15, 2020

Dear Roundtable Participant:

The Ontario COVID-19 Bioethics Table invites your participation in a roundtable on December 17th 2020 to review and provide feedback on the Critical Care Triage during Major Surge in the COVID-19 Pandemic: Proposed Framework for Ontario (hereafter the Proposed Framework). The roundtable will be attended by representatives from the Ministry of Health, Ontario Health and the Ontario Critical Care Command Table who will be present as observers.

The Proposed Framework with recommendations for next steps was submitted to the Ministry of Health and Ontario Health in September 2020. It is a green document within the overall Ontario COVID-19 pandemic response. An initial draft framework was developed and released to Ontario hospitals on March 28th. It was never implemented and was subsequently rescinded on October 29th by Ontario Health. The Proposed Framework has evolved iteratively through April to August 2020 based on a continuing review of existing and emerging academic literature and published policy statements on critical care triage in the COVID-19 pandemic, consultation with clinical, legal, and other experts, and feedback from health system stakeholders. All inputs were carefully considered by the Bioethics Table and incorporated into the Proposed Framework to the greatest extent possible. A summary of key challenges is included below.

The following questions will guide the roundtable discussion: * What are the strengths of the Proposed Framework?
* What aspects of the Proposed Framework could benefit from further revision? * What changes would you propose?

Please note that a draft protocolized version of the Proposed Framework has been created by the Ontario Critical Care Command Centre and shared with hospitals for their feedback. This draft institutional protocol is substantially the same as the Proposed Framework document but also includes additional details about institutional procedures, data collection forms, and communication tools. Any changes to the Proposed Framework following from the roundtable discussion will also apply to the draft institutional protocol.

We look forward to your participation and feedback. By the end of the roundtable, we hope we will be able to reach general agreement on most aspects of the Proposed Framework. If you are unable to attend the roundtable, we welcome your written feedback. Please send to Dianne Godkin ([email protected]) no later than noon on December 17. We hope to complete the consultation by December 18. Sincerely,

Jennifer Gibson, Co-Chair, Bioethics Table Dianne Godkin, Co-Chair, Bioethics Table

Summary of Key Changes in Proposed Framework

Overall Context
* Greater clarity on the context, scope and limits of critical care triage in the COVID-19 pandemic(i.e., onlyintended for use in a major surge in demand for critical care and only to be used if directed by the appropriate authority)
* Significant reformulation of triage as not just a clinical problem of scarce resources, but also fundamentally a broader social problem encompassing human rights and just reparation in the context of health and social inequities

Ethical Principles
* Explicit emphasis on human rights and recognition of pre-existing health and social inequities in the health system
* More explicit identification of the ethical principles underpinning the approach to triage —
original document was anchored to three principles (utility, proportionality, fairness); the current version specifies nine principles emphasizing equity and non-discrimination

Triage Process
* Greater clarity on the nature, purpose, and rationale for explicit clinically-based triage criteria
* Greater clarity and precision about what is and what is not permissible in the triage process
* Specification of a single prioritization criterion short-term mortality risk at <80%, <50% or <30% and temporal parameters of short-term mortality risk’ to mitigate risk of categorical exclusion of patients based on factors unrelated to their critical illness * Emphasis on individual assessment of each patient
* Underlining of importance of ensuring clinical tools do not violate human rights

Legal Considerations
* Inclusion of a stronger statement about the need for an emergency order to protect clinicians from civil and criminal liability * Recommendation that the Proposed Framework undergoes independent legal review

Due Process Elements
* Clarification of duties to patients, including but not limited to accommodation, culturally safe and appropriate practices, presence of trusted advisor/community member
* More detailed description of due process elements throughout the triage process * Clarification of scope and mechanism of appeal
* Clarification of training/education content areas

Oversight
* Clarification of need for a consistent and standardized’ approach across province and institutional settings and conditions for triggering implementation of triage approach and transition between levels * Specification of roles and accountabilities
* Clarification of the need and scope for systematic data collection to support monitoring and iterative review of triage approach

Recommendations
* Specification of next steps to foster transparency and trust

December 11, 2020 Email from , AODA Alliance Chair David Lepofsky to Bioethics Table Co-Chair Jennifer Gibson

To: Jennifer Gibson, Co-Chair Bioethics Table
From: David Lepofsky CM, O. Ont
Chair Accessibility for Ontarians with Disabilities Act Alliance Date: December 11, 2020

Dear Jennifer,

I am writing to respond to your email just now, in which you suggest that the triage protocol that was sent to me is confidential. You wrote in material part:

I do also wish to pick up on your question yesterday about whether the document is public. The triage framework document has a ‘confidential’ watermark because while the Bioethics Table has a green-light to circle back with human rights stakeholders, the document has not been authorized for public release. I feel hopeful that we will have greater clarity on this after the round table next week.

With great respect, I am under no obligation to keep that document confidential and give no undertaking to keep it confidential. I was not yesterday asking if it is confidential. I stated that I am proceeding on the basis that it is not. Yesterday I wrote as follows in an email addressed to the Ontario Human Rights Commission, you and others:

We will proceed on the basis that we are not undertaking any confidentiality in connection with this document and are free to make it public.

No one asked me for a commitment of confidentiality before sending me the new Bioethics Table proposed critical care triage protocol. Had I been so requested, I would not have given a confidentiality commitment. The Government cannot retroactively and unilaterally impose a confidentiality obligation upon me after the fact.

Making this even more obvious, after I received the email (on which you were copied) yesterday from the Ontario Human Rights Commission forwarding the new triage document, I immediately replied to all that I saw no attachment. I asked that the document in issue be re-sent to me. It was in that email that I stated quite unequivocally that we would treat this document as public, as quoted above. It was in response to that very email that the attachments were thereafter forwarded to me.

Our position could take no one by surprise. As you will recall, last summer, we gave no earlier confidentiality commitment regarding the revised draft triage protocol on which we were invited to comment over the summer. To the contrary, we made it clear that we would not agree to keep it confidential. In the face of that position, we were provided last summer’s earlier revised draft triage protocol. We publicly posted that earlier document online last July.

Moreover, for months, we have repeatedly and publicly been critical of the undue, excessive and protracted Government secrecy surrounding the Government’s approach to the issue of critical care triage. We would not now agree to act to further that unjustified secrecy.

Beyond that, from the emails we received yesterday, it appears that the Government has already sent this document or something including it to Ontario hospitals. As such, the proverbial horse has left the stable.

You stated that the document has a watermark (whatever that is) stating that it is confidential. I should note that the accessible MS Word version which I have opened does not include the word confidential. If it has such a watermark, it is not accessible. That MS Word version of this new draft protocol was sent to me specifically as an accommodation i.e. so that I would have an accessible version of it, rather than a pdf. It is commonly known that I am blind.

In any event, such a watermark, even if accessible, would not be apparent until after the document was opened. That does not retroactively create any obligations of confidentiality on my part.

Undoubtedly, this document has been sent to us at the Ontario Governments request, for the purpose of gathering input for the Government. The Government did not ask us in advance to agree to confidentiality in relation to this document. Indeed, no one at the Ministry of Health has had any direct contact with us at all about this entire triage issue, despite our writing the Minister of Health several times about the issue. As I understand it, the Bioethics Table, while appointed by the Government, is not itself part of the Government of Ontario.

We look forward to reviewing this new document and providing feedback on it. To help our review of it, can you explain what substantive changes were made as a result of our feedback to the Bioethics Table last summer?

Please confirm that you received this email. Stay safe.

December 15, 2020 Letter from AODA Alliance Chair David Lepofsky 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: [email protected] Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/

December 15, 2020

To: The Hon. Christine Elliott, Minister of Health
Via email: [email protected]
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 are following up on our four unanswered letters to you dated September 25, November 2, November 9 and December 7, 2020. These ask about the Ford Government’s plans for deciding which patients needing life-saving critical medical care would be refused that care, if the record-breaking surge in COVID-19 cases overloads Ontario hospitals and requires rationing or triage of critical care beds and services. Please respond to us.

We have been waging a frustrating, uphill campaign for eight months to ensure that patients with disabilities suffer no disability discrimination in access to critical care if hospital overloads necessitate triage. Events since we last wrote demonstrate that our concerns are amply justified. Excitement over the COVID vaccine does not reduce our concerns. The pandemic is still raging out of control.

As a positive step forward, on Thursday, December 10, 2020, the Ontario Human Rights Commission sent us and several other human rights advocates the Government-appointed Bioethics Table’s September 11, 2020 recommendations for a critical care triage protocol. The Bioethics Table is a purely advisory body external to the Government. We have been campaigning for three months to get the Government to make those recommendations public.

1. Bioethics Table’s Recommendations A Helpful Step Forward, But Problems Still Remain

We need time to study the external Bioethics Table’s September 11, 2020 recommendations. However, here are several important preliminary points. First, The Bioethics Table now commendably agrees with us that the Clinical Frailty Scale (CFS) should not be used to decide which patients should be refused critical care, if triage becomes necessary. It recognizes that to use the Clinical Frailty Scale in critical care triage would impose disability discrimination against patients with disabilities, and that research does not support the use of that Scale as a triage tool across the full spectrum of ages from 18 to end of life. We applaud the Bioethics Table for listening to this important message from disability advocates and experts last summer.

Second, it is good that for the first time, these recommendations give explicit and clear emphasis to human rights and the importance of adopting a non-discriminatory approach to critical care triage that is mandated in law. It is positive that, in response to our detailed submissions on point, the Bioethics Table has incorporated some principles to provide due process to patients at risk of being denied life saving critical care (though not all the due process safeguards that we contend are necessary).

As well, it is very commendable that for the first time, the Bioethics Table, in its September 11, 2020 recommendations, implements a number of elements from the AODA Alliance’s April 14, 2020 Discussion Paper on Critical Care Triage, such as:

A patient’s quality of life must never be used as a factor in triage decisions, even though it may continue to inform an individual patient’s decision-making about their own care.
Triage decisions should not consider the costs that a patient’s future care will pose should they survive their episode of critical illness.
Patients who have their own, pre-existing ventilator used to treat a pre-existing chronic condition must be permitted to continue to use their personal ventilator. Their own, pre-existing ventilator must not be re-allocated to other patients.
Whether an individual’s underlying disease, disability, or illness is associated with a shortened life expectancy compared to average lifespans independent of their predicted short-term mortality risk should not be used as a factor in triage decisions (e.g., a person with a mental health diagnosis on average lives 7 to 10 years less compared to the general population).
A patient’s need for disability-related accommodations or assistance (e.g., a deaf patient who needs Sign Language interpreters to effectively communicate with hospital staff) should never be used as a factor in triage decisions.
Emergency medical services (EMS), nursing staff, or other staff should promptly notify a patient’s physician whenever a patient is in potential need of critical care. No assumptions should be made about whether a patient meets triage criteria; the patient’s physician is required to make this determination (see Section E for more on this process).

As Minister, important conclusions follow. The March 28, 2020 clinical triage protocol that your Government sent to all hospitals last spring and left in place for some seven months was in fact replete with disability discrimination, according to your own Bioethics Table. To have let this happen in the midst of a pandemic is extremely disturbing.

Had it not been for relentless human rights advocacy efforts, your Government would have left that discriminatory protocol in place, rather than belatedly rescinding it on October 29, 2020. We should not have had to go to such lengths, especially in the midst of a pandemic.

Finally, last spring, The AODA Alliance and the ARCH Disability Law Centre publicly alerted the Government in writing to fundamental flaws with the Bioethics Table’s approach to critical care triage, that pervaded the March 28, 2020, triage protocol. Yet when the Bioethics Table thereafter came up with a revised draft last summer (previous to its most recent September 11, 2020 recommendations), it did not address our major concerns. What got the Bioethics Table to eventually listen to us and take some corrective action is talking directly to us at a series of summertime virtual meetings. This shows that it is vital for those inside the Government who are now making actual decisions in this area to hear directly from us, and not to simply receive written submissions or to receive our feedback second hand..

2. Important Concerns Remain in the Proposed Approach To Critical Care Triage

Despite our having eventually made some progress, there remain vital and urgent issues that need to be addressed, and that we are now studying. It is unclear to us what the Bioethics Table is precisely recommending on the vital issue of how critical care triage decisions should be made, or on whether it will ensure that disability discrimination does not creep in through the back door. It is not clear to us that it is correct to treat such decisions as entirely medical decisions. Additional due process protections are needed beyond those that the Bioethics Table commendably recommended.

3. Will the Government Respect the Rule of Law in the Critical Care Triage Issue

As far as we have seen, the Government has not brought forward any legislation or regulations to provide a proper legal mandate for a critical care triage protocol that authorizes refusal of life-saving critical care. Our September 25, 2020, letter to you and the Ontario Human Rights Commission’s October 16, 2020 letter to you both raise this issue. It appears that the Bioethics Table’s September 11, 2020 report to you also raises a concern in this area. To date, the Government has not responded.

This is even more important given the need to legislate a right of appeal for patients facing the possibility of being denied critical care triage that they need. The Bioethics Table’s September 11, 2020, report identifies the need for an appeal process. We agree with part of it but believe it needs to go further. Either way, a legislated mandate will be needed.

We therefore ask:

#1. Will your Government bring forward legislation or regulations needed to provide a legal foundation for any critical care triage protocol that may be instituted, including rights of appeal, and will there be public hearings on such legislation since this has such great impact on the very right to life?

4. What is the Government’s Internal Critical Care Command Table?
We just learned that within your Government, there is now in existence a Critical Care Command Table. This group must have a different role than the Bioethics Table with whom we had dealings last summer. The Bioethics Table is not part of nor situated within the Ontario Government. The Bioethics Table is purely advisory. It gives advice to the Government. The Government itself makes decisions on issues such as the rules and procedures to be followed if critical medical care needs to be rationed.

We have been trying to talk directly with your Government about this critical care triage issue since last April. The only contact we have had since then was with the Ontario Human Rights Commission and the external Bioethics Table. Those bodies have no plenary decision-making authority over this issue.

Can you please tell us the following:

#2. What are the names and titles of the members of the Government’s internal Critical Care Command Table? Who is the lead or Chair of that committee?

#3. When was the Government’s internal Critical Care Command Table established, and what is its mandate?

#4. What is the Government’s internal Critical Care Command Table’s plan of action to develop and finalize a new Ontario critical care triage protocol, and what is the deadline for it to finish this work?

#5. The Bioethics Table recommended on September 11, 2020, that The Government appoint a multidisciplinary consensus panel to further develop and refine the clinical factors and tools to be used for critical care triage. Has this been done? If so, when was it appointed? When and to whom will it report? Who is on that panel?

5. Let Us Now Speak Directly to the Government’s Internal Critical Care Command Table

In the nine months since the pandemic began, no one at the Ministry of Health or Ontario Health has spoken to us about our critical care triage concerns, or other disability health care issues in the pandemic. It is essential that we speak directly to decision-makers within the Government. Layers of bureaucracy should not be artificially erected as a barrier.

The external Bioethics Table learned a great deal from direct meetings with us and our disability community colleagues.

However, the Bioethics Table’s September 11, 2020 recommendations do not include all the advice that we gave to that external Table. We want to be able to give the Government all our advice, not just the points the Bioethics Table decided to include.

We therefore ask:

#6. Please immediately arrange for us to virtually meet with and provide direct input to your Government’s internal Critical Care Command Table,.

6. Make Public All Triage Documents the Government Shared with Ontario Hospitals

It is good that we have at last gotten some information about the draft new critical care triage protocol that the Government is considering. We need to see all the information about this draft that the Government shared with Ontario hospitals or other health care providers. We gather that the Government has sent some or all hospitals more documents or information about the new draft triage protocol than we in the human rights community have been given. We should have as much access to information about this as health care providers have.

We therefore ask:
#7. Please immediately share with us and make public all the documents on critical care triage, including any drafts that the Government has sent to any or all hospitals or other health care providers.

#8. When did the Government send any or all of the external Bioethics Table’s September recommendations to any or all hospitals or health care providers this fall?

7. End Protracted Government’s Secrecy Surrounding Critical Care Triage

As our unanswered September 25, November 2, and November 9, 2020 letters to you show, it is important for the Government to end its protracted secrecy in this area. For example, your Government unjustifiably kept secret from us and the public for three months the Bioethics Table’s September 11, 2020 recommendations. Now that we have seen them, there is absolutely nothing in them that warranted any secrecy. They contain no nuclear codes or trade secrets.

Your Government’s concealment of the Bioethics Table’s September 11, 2020 recommendations for three months hurt the public. Given the worrisome rise in daily COVID-19 infections and our hospitals being filled with patients, you should have let us study those recommendations three months ago, so that by now you’d already have our advice on them. We must now scramble to analyze them under extreme and entirely avoidable time pressure.

After we received the external Bioethics Table’s September 11, 2020 recommendations, there was an inappropriate effort to retroactively gag us from making it public. As we explained in our December 11, 2020, email to Prof. Jennifer Gibson, Co-Chair of the external Bioethics Table, we are bound by no duty to keep it secret. We anticipate that the effort to try to retroactively restrict us from disclosing it to others very likely emanated from the Government and not the Bioethics Table.

8. Conclusions

We need you to personally intervene now to put your Government’s approach on a proper track. Minister, you have a respected reputation for being committed to protecting society’s most vulnerable, including people with disabilities. This issue has been seriously mishandled by your Ministry’s officials, or by Ontario Health, or both.

We would welcome the opportunity to speak to you and to assist you in properly addressing this difficult issue.

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 [email protected]
Helen Angus, Deputy Minister of Health [email protected] Raymond Cho, Minister of Seniors and Accessibility [email protected]
Denise Cole, Deputy Minister for Seniors and Accessibility [email protected]
Mary Bartolomucci, Assistant Deputy Minister for the Accessibility Directorate, [email protected]
Todd Smith, Minister of Children, Community and Social Services [email protected]
Janet Menard, Deputy Minister, Ministry of Children, Community and Social Services [email protected]
Ena Chadha, Chief Commissioner of the Ontario Human Rights Commission [email protected] Jennifer Gibson, Co-Chair, Bioethics Table [email protected] Dianne Godkin, Co-Chair, Bioethics Table [email protected]

December 15, 2020 Email from AODA Alliance Chair David Lepofsky to Bioethics Table Co-Chairs

To:
Jennifer Gibson and Dianne Godkin
Co-Chairs, Ontario Bioethics Table
Via email: [email protected]; [email protected]

From:
David Lepofsky, CM, O. Ont
Chair, Accessibility for Ontarians with Disabilities Act Alliance

December 15, 2020

Re: Critical Care Triage Protocol

Thank you for inviting the AODA Alliance to take part in a December 17, 2020, roundtable with the Government-appointed Bioethics Table on its newest September 11, 2020 draft critical care triage protocol. It proposes how decisions would be made on patients needing life-saving critical care if it becomes necessary to ration or triage critical care services because the skyrocketing COVID-19 pandemic overloads Ontario hospitals. Thank you also for incorporating a number of key points that disability advocates and experts urged upon you last summer in your most recent September 11, 2020 recommendations to the Ford Government.

We regret that we will not be fully prepared to give all our ultimate feedback at this roundtable, due to the short preparation time and the issues’ complexities. The triage proposal itself is 36 pages long. On the evening of December 14, 2020, you also sent a substantial series of additional materials. We will not have had time to review them all. If any are in pdf format, please provide them in accessible formats such as MS Word. We have not had time to check them for accessibility.

Given the number of people you have invited to take part, there will also not be time for all to give detailed input during that meeting. Nevertheless, we will do the best to help as much as we can in the allotted time.

To help in preparation for this meeting, may we bring the following matters to your attention:

1. We understand from the Ontario Human Rights Commission’s December 10, 2020, email that Ontario hospitals were sent more documents or information about the Bioethics Table’s September 11, 2020 recommendations than was provided to those of us invited to take part in your upcoming December 17, 2020, roundtable. It is important for us to see all the material that hospitals have seen. Can you provide us with all that information? If you do not have authority to do so, can you support our request of the Minister of Health to do so, as set out in our letter to the Minister of today’s date, copied to you?

2. We are rushing to read and fully understand the 36-page document that was provided to us last Friday. From it, it is not clear how a doctor is precisely being instructed to decide who will be refused critical care services if triage becomes necessary. As was the case last summer during our discussions of the now-discarded Clinical Frailty Scale, it would help us all to receive, in advance, a clear step-by-step explanation of how this would be done. It would also similarly help to be given example fact situations to illustrate how it would be applied. We expect that many, if not most, of those invited to take part in this roundtable will need this clarification in advance in order to prepare meaningful feedback for you at that roundtable.

3. As our letter of today’s date to the Minister of Health explains, we have not previously been told about the existence or role of the Government’s internal Critical Care Command Table. Can you let us know what the membership and mandate of that committee is? We are eager to also know which, if any, members of the external Bioethics Table also sit on or assist in any way the Government’s internal Critical Care Command Table.

4. As our letter of today’s date to the Health Minister also explains, while we are happy to speak with your group about this triage issue, your group is external to the Government. Your group merely gives advice. It makes no decisions. We want to speak directly to and meet with those inside the Government who are making decisions in this area.

We would appreciate it if you would support our request to the Government in this regard, set out in today’s letter to the Minister. We appreciate that your external Bioethics Table benefitted from and drew on a number of important recommendations that we presented during our virtual meetings with you over the summer. You are therefore in a pivotal position to explain to the Government how beneficial and important it is for them to hear directly from us.

We would be happy to provide any further information that might assist you in addressing these issues.

cc:
Premier Doug Ford [email protected]
Christine Elliott, Minister of Health [email protected] Helen Angus, Deputy Minister of Health [email protected] Raymond Cho, Minister of Seniors and Accessibility [email protected]
Denise Cole, Deputy Minister for Seniors and Accessibility [email protected]
Mary Bartolomucci, Assistant Deputy Minister for the Accessibility Directorate, [email protected]
Todd Smith, Minister of Children, Community and Social Services [email protected]
Janet Menard, Deputy Minister, Ministry of Children, Community and Social Services [email protected]
Ena Chadha, Chief Commissioner of the Ontario Human Rights Commission [email protected]




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