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@example.com Twitter: @aodaalliance Facebook: http://www.facebook.com/aodaalliance/
August 31, 2020
If there is a second wave of COVID-19 that is so severe that hospitals don’t have enough critical care beds and services for all patients who need that medical care, who will decide which patients get critical care and which ones will get refused? How will they decide? What fair process will be in place for patients who are told that they won’t get the life-saving critical care they need? It is no exaggeration to call this a life and death issue.
The AODA Alliance today makes public a detailed written submission, set out below, on this important issue that we presented earlier today. We hope that there will never be a new surge of COVID-19 that overloads the capacities of our hospitals. However, from experience with COVID-19 elsewhere in the world, we know Ontario must be ready. The AODA Alliance is doing our part, in close collaboration with other disability advocates, in an effort to try to ensure that people with disabilities do not face discrimination in any critical care triage.
This issue is especially vital for Ontarians with disabilities. Earlier this year, with the COVID-19 pandemic raging, it was revealed that the Ford Government had in place a deeply troubling protocol for making these critical care triage decisions, a protocol that was dated March 28, 2020. That protocol would discriminate against some patients with disabilities.
That protocol had been written by or under a “Bioethics Table”, a Government-appointed group of physicians and bioethicists. To our knowledge, the disability community was never consulted in the development of that deeply flawed triage protocol. The Ford Government later called that March 28, 2020 triage protocol a “draft”, even if it was never marked as a draft before it was publicly exposed.
Many within the disability community vehemently and publicly objected to that critical care triage protocol. This past spring, in response to public criticism of its critical care triage protocol, the Ford Government committed to consult with human rights and community experts on its reform.
Early this summer, the Government’s Bioethics Table, together with the Ontario Human Rights Commission, commendably reached out to a group of disability organizations and experts to get input into the critical care triage protocol from the disability perspective. The AODA Alliance and the ARCH Disability Law Centre are among the group that was invited to take part.
The Bioethics Table gave the disability advocates and experts a revised draft critical care triage protocol that the Bioethics Table had written, and on which it sought input. The AODA Alliance made this revised draft critical triage protocol public in the July 16, 2020 AODA Alliance Update. It was helpful for this to be available for the public. In contrast, the earlier March 28, 2020 critical triage protocol had not been made public.
The disability advocates and experts to whom the Bioethics Table reached out spent many hours this summer very constructively working together. Over the past weeks, this group held several extensive virtual meetings with a delegation from the Bioethics Table. This culminated in a one hour virtual meeting on Monday, August 31, 2020. At that meeting, key concerns from the disability sector were summed up. These had been explored in earlier meetings with the Bioethics Table. Below we set out the AODA Alliance’s written submission. A written submission from the ARCH Disability Law Centre is expected to be forthcoming shortly.
Our written submission summarizes our position as follows:
“The revised draft critical care triage protocol which was shared by The Ontario Government’s “Bioethics Table” for input is substantially deficient. It is substantially lacking in essential due process protections for patients with disabilities and their families/support people. As well, the standard or assessment tool that it proposes to guide or govern such medical triage decisions is seriously flawed and should not be used for triage purposes. In the case of a critical care patient with a progressive disease but who has more than six months to live, their likely mortality should not be assessed by the number of activities of daily living that they can perform without assistance, having regard to each of these specific activities: dressing, bathing, eating, walking, getting in and out of bed, using the telephone, going shopping, preparing meals, doing housework, taking medication, or handling their own finances. We share the concerns with the triage protocol that we anticipate to be set out in a forthcoming written submission by the ARCH Disability Law Centre.”
We appreciate the time that the Bioethics Table took to meet with the disability advocates and experts that were invited to be part of this process. We now await the Bioethics Table’s final report and recommendations to the Ford Government. We hope it will be immediately made public. We also urge the Ford Government to be very open and consultative in responding to the Bioethics Table’s final report and recommendations.
The AODA Alliance thanks all the disability advocates and experts that worked together on this issue. A special thank-you is extended to the ARCH Disability Law Centre for its excellent work in this area. We also thank the excellent team of Osgoode Hall Law School and University of Ottawa law students who volunteered to help the AODA Alliance in the preparation of our submissions to the Bioethics Table.
Because of the rushed time lines for preparing the AODA Alliance’s written submissions set out below, we were not able to post a draft of this document for your input, before we finalized this submission. Nevertheless, we always welcome your feedback. It can help with our future efforts on this important issue. You can always write us at firstname.lastname@example.org
For more background on this issue, check out:s
1. The April 8, 2020 open letter to the Ford Government on the medical triage protocol spearheaded by the ARCH Disability Law Centre, of which the AODA Alliances one of many co-signatories
2. The April 14, 2020 AODA Alliance Discussion Paper on Ensuring that Medical Triage or Rationing of Health Care Services During the COVID-19 Crisis Does Not Discriminate Against Patients with Disabilities
3. The May 13, 2020 ARCH Disability Law Centre’s Analysis of the March 28, 2020 Triage Protocol
4. The July 16, 2020 AODA Alliance Update that lists additional concerns with the revised draft triage protocol. That Update also sets out the Ford Government Bioethics Table’s revised draft triage protocol itself.
5. the ARCH Disability law Centre’s July 20, 2020 brief to the Bioethics Table on the revised draft triage protocol, which the AODA Alliance endorsed.
6. The AODA Alliance website’s health care page, detailing our 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.
Accessibility for Ontarians with Disabilities Act Alliance
United for a Barrier-Free Society for All People with Disabilities
Web: www.aodaalliance.org Email: email@example.com Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/
The Ford Government’s Bioethics Table Must Fix the Serious Problems with Its Revised Draft Critical Care Medical Triage Protocol
A Submission by the AODA Alliance to the Ford Government’s Bioethics Table August 30, 2020
1. What Is the Critical Care Triage Issue that This Submission Addresses?
A large future surge in COVID-19 cases may require triage of critical medical care. There could end up being more patients needing critical care than there is critical care available. In that situation, which patients needing critical care will get that critical care and which patients who need that care will be denied it?
Last winter with the arrival of COVID-19 to Canada, the Ontario Government decided to create a written protocol to tell doctors and hospitals who would decide and how to decide which patients would be denied critical care in a pandemic triage situation (the triage protocol). The Ontario Government appointed a “Bioethics Table” to make recommendations on what the triage protocol should say. This was not then made public, nor was the public’s input then sought.
As a result, a triage protocol dated March 28, 2020 was sent to Ontario hospitals but was not made public. Within days, its existence and contents became known to some within Ontario’s disability community. As a result, the March 28, 2020 triage protocol was strongly and publicly criticized as discriminating against some patients because of their disability, contrary to the Ontario Human Rights Code and the Canadian Charter of Rights and Freedoms.
In the face of that public criticism, the Government stated that the March 28, 2020 triage protocol was only a draft. However, it had not been marked “draft”. Last spring, also in the face of public criticism of that triage protocol, the Government announced that there would be consultations on it with human rights and community experts.
The Ontario Human Rights Commission and several organizations from the disability community have called on the Ontario Government to rescind the March 28, 2020 triage protocol. However, to date, The Government has not rescinded the March 28, 2020 triage protocol.
At some point after March 28, 2020, the Bioethics Table wrote a revised draft critical care triage protocol. The Bioethics Table is now consulting on that revised draft before recommending to the Ontario Government any possible changes to that triage protocol. The Bioethics Table invited certain disability organizations for input, including the AODA Alliance. We were all given a copy of the revised draft triage protocol, and were free to make it public. On July 16, 2020, the AODA Alliance posted the revised draft triage protocol on our website.
In this submission, the AODA Alliance gives the Bioethics Table its culminating input on its revised draft triage protocol. This submission is supplementary to and builds upon the input earlier provided from the disability perspective by the ARCH Disability Law Centre and the AODA Alliance. Our prior public statements on this issue are posted on our website’s COVID-19 page. We especially emphasize the following prior AODA Alliance and ARCH public statements:
1. The April 14, 2020 AODA Alliance Discussion Paper on Ensuring that Medical Triage or Rationing of Health Care Services During the COVID-19 Crisis Does Not Discriminate Against Patients with Disabilities
2. The July 16, 2020 AODA Alliance Update that lists additional concerns with the revised draft triage protocol.
3. The April 8, 2020 open letter to the Ford Government on the medical triage protocol spearheaded by the ARCH Disability Law Centre, of which the AODA Alliances one of many co-signatories
4. The May 13, 2020 ARCH Disability Law Centre’s Analysis of the March 28, 2020 Triage Protocol
5. the ARCH Disability law Centre’s July 20, 2020 brief to the Bioethics Table on the revised draft triage protocol, which the AODA Alliance endorsed.
The rush to give our input to the Bioethics Table did not allow us time to first post a draft of these written submissions in order to get input and feedback on them from our supporters. We recognize that the Bioethics Table is operating under significant time pressures because of the possibility of a second surge of COVID-19 infections this fall. After presenting these submissions to the Bioethics Table, we will welcome feedback from our supporters in case we later need to elaborate on these issues.
2. Who is the AODA Alliance?
The AODA Alliance is a voluntary non-partisan grassroots coalition of individuals and organizations. Our mission is:
“To contribute to the achievement of a barrier-free Ontario for all persons with disabilities, by promoting and supporting the timely, effective, and comprehensive implementation of the Accessibility for Ontarians with Disabilities Act.”
To learn about us, visit: http://www.aodaalliance.org.
Our coalition is the successor to the Ontarians with Disabilities Act Committee. The ODA Committee successfully advocated from 1994 to 2005 for the enactment of strong, effective disability accessibility legislation, including the Accessibility for Ontarians with Disabilities Act. Our coalition builds on the ODA Committee’s work. We draw our membership from the ODA Committee’s broad, grassroots base. To learn about the ODA Committee’s history, visit: http://www.odacommittee.net.
We have been widely recognized by the Ontario Government, by all political parties in the Legislature, within the disability community and by the media, as a key voice leading the non-partisan campaign for accessibility in Ontario. In every provincial election since 2005, parties that made election commitments on accessibility did so in letters to the AODA Alliance.
Among our many activities, we led a multi-year campaign to get the Ontario Government to agree to develop a Health Care Accessibility Standard under the AODA, to tear down the many barriers that impede patients with disabilities in Ontario’s health care system. That promised regulation is still under development. Our years of efforts to advocate for accessibility for patients with disabilities are documented on our website’s health care page.
Our efforts and expertise on accessibility for people with disabilities have been recognized in the media, in MPPs’ speeches in the Ontario Legislature, and beyond. Our website and Twitter feed are widely consulted as helpful sources of information on accessibility efforts in Ontario and elsewhere. We have achieved this as an unfunded volunteer community coalition.
3. Summary of This Submission
The revised draft critical care triage protocol which was shared by The Ontario Government’s “Bioethics Table” for input is substantially deficient. It is substantially lacking in essential due process protections for patients with disabilities and their families/support people. As well, the standard or assessment tool that it proposes to guide or govern such medical triage decisions is seriously flawed and should not be used for triage purposes. In the case of a critical care patient with a progressive disease but who has more than six months to live, their likely mortality should not be assessed by the number of activities of daily living that they can perform without assistance, having regard to each of these specific activities: dressing, bathing, eating, walking, getting in and out of bed, using the telephone, going shopping, preparing meals, doing housework, taking medication, or handling their own finances. We share the concerns with the triage protocol that we anticipate to be set out in a forthcoming written submission by the ARCH Disability Law Centre.
We hope that the entire Bioethics Table agrees with our concerns and recommendations, and that it incorporates them into the recommendations that it makes to the Ontario Government. If a majority of the Bioethics Table does not agree to do so, we urge any members of the Bioethics Table who agree with any or all of our concerns and recommendations to prepare and submit a minority report to the Government.
It is important for the Government to receive the most informative feedback from the Bioethics Table that the Table can provide. The Bioethics Table has been asked to advise the Government on very challenging issues. Where there are differing views at that Table, the Government and the public are best served if the spectrum of competing views are expressed in majority and minority reports to the Government. That would let the Government and the public review both a majority report and a minority report as they consider the full range of options when making decisions on how critical care triage should be conducted, if a need for it arises.
B. The First Issue: The Revised Draft Triage Protocol is Seriously Lacking in Due Process for All Patients
1. The Bottom Line
The critical medical triage protocol needs to be revised to provide strong, mandatory, reliable due process protections that ensure fair and accurate decisions in triage cases. This is especially important since the decision of whether a patient will be given critical care is a life and death decision. The Canadian Charter of Rights and Freedoms guarantees in section 7 the right to life, and the right not to be deprived of one’s life except in accordance with the principles of fundamental justice. Due process must be the most rigourous when the right to life is at stake.
2. The Rule of Law and the Need for Any Triage Protocol to Be Enacted in Law
As a vital starting point, any critical care triage protocol, including the due process safeguards in it, should be enacted in a law. Such a protocol is specifically aimed at a situation where a patient could be denied critical medical care that they need, despite the fact that they need it. It is a basic aspect of the rule of law that a person’s fundamental rights, such as the right to life, cannot be taken away without the clear authority of law.
Given this issue’s importance, any critical care triage protocol and any legislation that would enact or mandate it should be carefully screened in advance of its enactment by Government’s lawyers to ensure that it is fully lawful and constitutional. The Government has known of the COVID-19 pandemic for over five months. It has had ample time to take these steps. Moreover, The Government has shown that it is prepared to act very swiftly to enact other significant emergency measures to deal with the COVID-19 pandemic. The Government should be capable of doing so in this medical critical care triage context as well.
Any law enacted in this context must fully comply with the Charter of Rights and the Ontario Human Rights Code. Among other things, the standard that it mandates for making a decision over who will be denied life-saving critical care that they medically need must be sufficiently clear and not vague.
3. Right to Early Notice
As part of due process, a patient and their family should be given notice as early as possible in advance that they may be subjected to triage for critical care. This should include a full explanation of such things as what critical care is, what medical triage is, what the steps of the triage process include, what rights the patient has to input into the process, what appeals are available from an adverse triage decision, and whom the patient and their family could consult for assistance in this process. This rights advice and information should be readily available in a wide range of languages.
4. Right to Disability Accommodation in the Triage Process
If a person with disabilities, either a patient or a member of their family/support people, needs an accommodation to enable them to fully participate in this due process, it is important to ensure that their accommodation needs are promptly and fully met. For example, relevant printed material should be readily available in accessible alternate formats. Electronic documents should be provided in an accessible format where needed, such as an accessible html or MS Word document. PDF does not fulfil this need. Sign Language and other communication supports should be available for those needing them to take part in this process. Patients and their families should be told as soon as possible that these accommodations and supports are available on request.
5. Who Should Make the Triage Decision
The triage protocol assumes that this decision over who, among those who need it, should get critical care is a medical decision, and as such, it should automatically be made by physicians. However, that should not be assumed.
It can be argued instead that the decision is not a medical decision, or an exclusively medical decision, even though it relates to medical services. It is a decision over how to ration publicly funded critical medical care in circumstances where there is not enough to go around. It is a decision that should be made by those who are publicly accountable for their decision on how to allocate a scarce life-saving public service or resource.
However, if, despite this serious concern, it were decided to proceed with a medical model for this triage, the following due process is proposed. This due process is proposed without accepting that such a decision should be left at all or exclusively to physicians or other health care professionals.
The hospital team that makes the triage decision should include more than one or two doctors. The Government or Bioethics Table should present a range of options for the Government to consider adopting, listing the advantages and disadvantages of each option, on which public input can be obtained. One option to consider is a committee created by the institution comprised of doctors with expertise in relevant areas such as intensive care or palliative care, nurses, social workers, and ethicists (Sprung, Charles L, et al. “Adult ICU Triage During the Coronavirus Disease 2019 Pandemic: Who Will Live and Who Will Die? Recommendations to Improve Survival.” US National Library of Medicine National Institutes of Health, NCBI, 6 May 2020).
Sufficient safeguards must be in place and monitored to ensure that the persons on the triage team taking part in the triage assessment and decision have no actual or perceived conflict of interest. For example, they should have no personal relationship with the patient or with any of the other patients who are subject to a triage decision. Those making the decision should have personally met the patient, and not simply been briefed by other members of the triage team.
The members of the team taking part in the triage assessment and decision should be required to have recently completed sufficient designated training in the use of the assessment tool, in the assessment due process requirements, and in applicable human rights principles and the requirement to conduct bias-free and barrier-free assessments that do not discriminate against patients with disabilities. This should not be purely passive online training (where a participant simply reads text or watches lectures and then clicks that they did so).
6. Right to Input Into Triage Decision
As part of the critical care triage assessment process, the patient and their family/support people should be given a full and fair opportunity to give the assessment team information on the patient as it relates to the triage assessment criteria, before any critical care triage decision is made. This should include, among other things, the opportunity to present input from others, such as the patient’s personal physician or other support people.
If a patient that is to be considered for possible critical care triage appears to have no substitute decision-maker on the scene with them, and appears to be incapable of managing their health care decisions, the hospital should immediately notify the Public Guardian and Trustee’s office so that that office can consider taking part in the medical triage process on the patient’s behalf, if needed.
7. Right to Appeal a Denial of Needed Critical Care
If a triage decision is made to refuse critical care to a patient who needs critical care, the senior member of the triage team should tell the patient about the decision and the reasons for it, immediately or as quickly as possible. The patient and their family/support people should be given “rights advice” about the ways for the patient or their family to appeal or dispute the decision. This “rights advice” should also be quickly provided to the patient and their family in writing, written in plain language, in documents provided in an accessible format where needed.
Where a patient is denied needed critical care due to a triage decision, that decision should be re-assessed each 24 hours after this denial (Sprung, Charles L, et al. “Adult ICU Triage During the Coronavirus Disease 2019 Pandemic: Who Will Live and Who Will Die? Recommendations to Improve Survival.” US National Library of Medicine National Institutes of Health, NCBI, 6 May 2020).
If any Ontario emergency orders now suspend due process protections for hospital patients such as opportunities to seek appeals or reviews of refusals of treatment, any such suspension of due process should be lifted. Where a patient who needs critical care is denied it due to a triage decision, the patient and their family should have a right to a swift appeal process within the health care system, with an ultimate option of an appeal to court or an appropriate independent tribunal with the needed expertise and expeditious procedures. This appeal process must be swift due to the fact that the patient needs critical care for a life-threatening condition, and because the health care facility is under incredible work pressure due to the pandemic crisis.
The AODA Alliance has not had the time and capacity to obtain and compare a wide range of hospital appeal protocols. We propose that the appeal process should include these features:
a) Information about the availability of an appeal and how to launch an appeal should be widely available and well publicized, within a hospital.
b) The appeal process must be very fast.
c) The appeal process should rapidly get right to the substantive critical care issues, without being distracted by extraneous considerations. This is needed to minimize the time that the process takes and the need to enable medical staff to spend their time treating patients.
d) A patient or their family/support people should be able to quickly and easily launch an appeal by sending in an email, placing a phone call, or verbally advising a person in charge e.g. a charge nurse in an emergency room. Whoever receives the written or oral notification that the appeal is being launched should be required to immediately communicate it to a central hub at the hospital.
e) To speed up this process, to the extent possible, virtual meetings should be used to conduct the parts of the appeal that do not require in-person contact.
f) On an appeal being launched, a hospital staff person who had no involvement in the triage decision should immediately be assigned to manage the appeal process, and to be the patient/family’s/support people’s primary contact.
g) Immediately upon launching an appeal, an independent person either within the hospital or on stand-by at Ontario Health should review the initial triage team’s documentation of their triage decision. If the documentation reveals any possible errors, the triage team that made the decision should be required to reconsider its decision afresh.
h) If, after that review, the triage team sticks by its decision to deny critical care to the patient, a second triage team, either in the hospital or elsewhere, should be appointed to immediately perform an independent clinical care triage assessment of the patient’s case. The second triage team should have the same required qualifications and training on the triage process as did the first triage team. The second triage team should, of course, include no members from the first triage team.
i) The second triage team should start the assessment from scratch, and should not be provided any of the assessment decision ratings or deliberations of the first triage team. The members of the second triage team should not communicate about this case with members of the first triage team before or while making their assessment.
j) The patient should get the benefit of the most favourable assessment, as between the first and second triage teams. If, after this second team’s assessment, the patient is still denied critical care, they should have an opportunity to have a rapid appeal/review by an independent court or tribunal. New legislation or regulations may be needed to spell this out. We do not have time to specify to whom this appeal should go. One option worth considering is the Consent and Capacity Board (CCB). Another option to consider is a judge of the Superior Court of Justice. A short list of judges from that court could be designated to be on stand-by for cases coming to them, if it is decided that a judge should hear these cases.
k) Whether this final appeal is to a judge or to the CCB or some other body, to expedite this process, a panel of qualified lawyer-mediators should be designated to be on stand by to assist that judge or tribunal e.g. to quickly gather, organize and disclose to the parties and the appeal judge or tribunal all the relevant information from the hospital and the two triage teams that had reviewed the case. Because such appeals must happen extremely quickly, it would be important for the patient, family/support people and hospital to have that emergency assistance.
l) To ensure that the playing field is level for all patients, the Government should direct that Legal Aid Ontario is required to provide free legal representation to any patient invoking this appeal process after being denied critical care. A panel of Legal Aid-funded lawyers should be available on stand-by for emergency engagement if needed.
8. Accountability for Triage Decisions
At each stage of the medical triage process, the triage team should be required to keep detailed contemporaneous records of their entire triage process including any triage assessments. These cases should be reported weekly for review by the hospital’s senior management and ethics committee, and should be reported weekly to the Ministry of Health. These should also be made public on a weekly basis as aggregated information that does not disclose patient identities. This is all needed to ensure that hospital administration and the Government are kept up-to-date on how the clinical care triage process is operating on the front lines, so that corrective action can be quickly ordered where needed.
For proper public accountability, during any period when a critical care triage protocol is in effect, The Ministry of Health should make public, on a weekly basis, information on a province-wide, municipality and hospital-by-hospital basis, about cases where critical care has been denied due to triage decisions, such as:
a) the number of cases and related medical decisions;
b) key demographic data such as racialized and disability status; and
c) number of decisions appealed and whether the appeal resulted in a refusal or offer of critical care.
C. The Second Issue: Serious Problems with The Triage Protocol Using the Clinical Frailty Scale As A Triage Assessment Tool
1. The Bottom Line
Up to now, this submission has focused on the process for critical care triage decisions. We now turn to consider the yardstick or assessment tool to be used to make decisions over who will be given critical care and who will be refused it, among all the patients who need critical care, should there be a shortage of critical care beds, equipment or services.
Both the March 28, 2020 triage protocol and the subsequent revised draft protocol, created by the Bioethics Table, use the “Clinical Frailty Scale” (CFS) as the tool that doctors are to use to assess whether a patient should be denied critical care. We oppose the use of the CFS as a critical care triage assessment tool in either protocol. The following are key reasons why use of the CFS is highly objectionable from the perspective of patients with disabilities who need critical care. We also endorse the concerns with the CFS that are outlined in the written submission to be provided to the Bioethics Table by the ARCH Disability Law Centre.
2. The Burden of Proof to Justify the Use of the CFS in Critical Care Triage
Critical triage decisions decide whether a patient will receive life-saving medical care they need. Before it can be used, a critical care triage assessment tool must be affirmatively proven to be consistently and reliably valid and consistently and reliably applied, based on rigourous peer-reviewed scrutiny. Such an assessment tool, if adopted, would carry with it a strong aura of objective scientific legitimacy and fairness, clothed in the mantle of science.
Accordingly, a substantial burden of proof rests on those who propose a specific assessment tool, to justify its use. Its validity is not presumed, until or unless someone proves that there is a better assessment tool.
3. CFS Has Not Been Shown to Meet That Burden of Proof
The March 28, 2020 triage protocol and the revised draft triage protocol each use the CFS as the tool for assessing the likely mortality of a patient who needs critical care. During our virtual meetings with some members of the Bioethics Table, members of the Table stated that scientific data shows that the CFS is reliably predictive of a critical care patient’s likely mortality, and that it is more reliable than other assessment tools. However, the Bioethics Table has not provided sufficiently compelling proof that the CFS is a consistent and reliable tool for predicting a critical care patient’s likely mortality, for the entire patient population who would be subjected to the CFS under either triage protocol. The ARCH Disability Law Centre will be making a submission that addresses the studies which members of the Bioethics Table have identified in support of the CFS. The AODA Alliance’s submission supplements ARCH’s submissions.
Members of the Bioethics Table acknowledged that the CFS was not created or designed for the purpose of making critical care triage decisions. Therefore, we propose that the Bioethics Table must demonstrate that even though the CFS was not designed for the purpose to which the Bioethics Table wishes to deploy it, it coincidentally does consistently and reliably serve that unintended, unplanned purpose.
The Bioethics Table was asked for any studies that show that the CFS is an accurate predictor of a critical care patient’s likely mortality. The AODA Alliance has not had sufficient time to fully review all the information provided in response. Despite that, the following appears evident, in addition to points to be made in the forthcoming ARCH written submission:
a) It is our understanding that the peer-reviewed studies provided to us by the Bioethics Table do not appear to have been undertaken for the purpose of assessing if the CFS is a consistent and reliable predictor of a critical care patient’s likely mortality, when it is used in a critical care triage context.
b) It does not appear that the studies provided assessed the CFS’s application across a full spectrum of patients of all ages to which the triage protocol would apply it. During discussions with some members of the Bioethics Table, we were told that the data provided in those studies address patients at or over the age of 65. They also may provide some data for patients over the age of 50. Yet the revised draft triage protocol does not limit the use of the CFS to those populations that the peer-reviewed studies actually studied. The triage protocols under discussion here draw an age line of 18. They would apply the CFS to any and all patients over the age of 18.
c) During our discussions with some members of the Bioethics Table, we were told that Dr. James Downar, a member of that Table, is currently conducting research on the possible connection of CFS scores to a critical care patient’s likely mortality. Any such unpublished data should not be used as a proper basis for the current life and death policy decision, especially when there has been no public scrutiny of it or of its use. For it to be used when designing a protocol for critical care triage, that data should first have been published in a peer-reviewed medical journal, and exposed to further critical exploration by other studies to see if the conclusions are verified or should be qualified.
d) To rely on any of the CFS rating data in any of the published or unpublished studies or analysis of this issue, it would also be necessary to affirmatively establish that the CFS was properly and consistently applied to all patients who were assessed in those studies or data. Otherwise, the ratings may not consistently correlate to the patients’ actual status. Sufficient proof has not been provided that convincingly establishes this.
e) It would be important to know to what extent the CFS scoring in the studies on point varies depending on whether the professional, doing the rating, has had training on CFS rating. Similarly, it would be important to know if any studies on point were assessing the consistency of CFS ratings when undertaken in a critical care triage context. It would be necessary to rule out the possibility that a doctor’s CFS rating in a critical care triage context is different than their CFS rating when they know it is for a different purpose. It would be important to know if the person doing the CFS scoring knew that their scoring could determine whether the patient would be thereby denied needed life-saving critical care.
The foregoing amply warrants a rejection of the CFS as the critical care triage assessment tool. However, each of the following additional reasons, on their own, also compel its rejection. Each of these points would have to be convincingly disproven before the CFS could properly be deployed in Ontario.
For the CFS to be used as the critical care triage assessment tool, it would also be necessary to establish with convincing proof that different doctors and other hospital staff, applying the CFS to the same patient, will consistently and reliably get the same results, or extremely similar results, and that there is no room for subjectivity in its application. If this is not shown to be the case, then a patient may well get triaged out of critical care due to arbitrary differences in how the CFS is applied by different doctors, and not because of the patients’ likely mortality. The risk must be disproven that two doctors or other health care professionals would assess the same patient differently. This consistency of application cannot simply be assumed.
In discussions with some members of the Bioethics Table, Dr. James Downar candidly acknowledged that there is subjectivity in how the CFS would be applied to a specific patient. That is fatal to its use for critical care triage.
This serious concern is reinforced by feedback we received from the Bioethics Table on the conduct of doctors who assess a patient for admission to palliative care. As we understand it, a doctor is required to give a prognosis of the patient’s likely mortality within a specified period (such as 3 months), to qualify for admission to palliative care. We were candidly told at a meeting with some members of the Bioethics Table that doctors routinely give result-oriented assessments that serve the purpose of getting the patient into palliative care, rather than purporting to accurately assess the patient’s likely mortality. There is a comparable risk that the CFS’s implicit subjectivity will lead to result-oriented decisions by triage doctors or teams, clothed in the image of objective science. As further explored later, this has enormous risks from a disability human rights perspective.
Making this an even greater concern, the fact that a person has an MD does not mean they have expertise in assessing a patient’s ability to undertake activities of daily living. During our meetings, we were told that most physicians are not trained in medical school on how to use the CFS. Some geriatricians have training or experience in its use. In contrast, we noted for the Bioethics Table that the health care professionals whose expertise more specifically focuses on a patient’s ability to undertake activities of daily living (a central part of the CFS) are occupational therapists, not physicians.
4. CFS Impermissibly Discriminates Against Some Patients with Disabilities
The foregoing warrants a rejection of the CFS for critical care triage purposes, without any resort to human rights principles. However, even if it were assumed that there is no merit to any of the preceding serious concerns with the CFS as a critical care assessment tool, the following human rights concerns also warrant a rejection of the CFS as a critical care assessment tool.
As more fully documented in earlier submissions by the ARCH Disability Law Centre and the AODA Alliance, the use of the CFS for critical care triage purposes would discriminate against some patients with disabilities, implicating the Ontario Human Rights Code and the Canadian Charter of Rights and Freedoms. It is no answer to this that the CFS was not intended to be discriminatory or to be unfair to any patients with disabilities, or that it is equally applied to all patients in the same way, or that its use is supported by mortality data (addressed earlier).
The CFS and even the drawings accompanying it are clear illustrations on their face of direct disability discrimination. As such, there is no need to resort to the additional fact that it also has clear disproportionate impact on patients with disabilities. To now cosmetically edit out the CFS’s accompanying drawings would not retroactively erase this.
It is a core feature of the CFS that it calls for an assessment of a patient’s ability to undertake certain activities of daily living independently or without assistance. At the core of equality and human rights protections for people with disabilities in Canada is their right to disability accommodations where needed, and their right to have their abilities assessed with needed disability accommodations, not without needed disability accommodations. The CFS embodies a deeply entrenched, blistering violation of human rights on that basis alone.
For the triage protocol to invite doctors or other health care professionals to assess the abilities of a patient with disabilities to undertake certain activities of daily living independently or without assistance is to reinforce and build upon deeply injurious stereotypes about people with disabilities. To do so in a protocol that invokes bioethical commitments to “fairness” is especially indefensible.
It would be wrong to assess a doctor’s ability to practice medicine by first requiring them not to wear their eyeglasses. In a decision over life or death, it is all the more wrong to take that erroneous kind of approach to assessing a patient’s abilities to undertake the CFS-listed activities of daily living without considering their needed disability accommodations.
Making the CFS still worse, such an assessment by doctors or other health professionals of people with disabilities risks triggering a covert assessment of the social worth or “quality of life” of patients with disabilities. That deliberative process must be strictly and proactively prevented, and not directly or indirectly tolerated or encouraged.
Amplifying its arbitrariness and unfairness, the CFS’s core focus on a patient’s ability to perform certain activities of daily living can bias against patients based on their socio-economic status, or the timing of their disability. Poor people with disabilities can have less access to rehabilitation training and supports compared to the more affluent. Someone who acquired their disability long ago can have had much more opportunities to learn to perform such tasks of independent living, as compared to those who more recently acquired a disability. When reviewing the CFS with some members of the Bioethics Table, it was not disputed that the CFS measures can have such adverse affects depending on a patient’s socio-economic status or when they acquired a disability.
At one meeting, Dr. James Downar of the Bioethics Table commendably made it clear in response to our question that he would not support using a patient’s race or gender to make triage decisions, even if the data had scientifically showed that a critical care patient’s race or gender correlated to their likely mortality. We emphasize that in our raising this, there was no suggestion that the data had shown such a nexus. We respond that if race or sex should not be used here, even if the data had supported its use, the same should go for a patient’s disability. Race, sex and disability are all forbidden grounds of discrimination.
5. CFS Deficiencies Are Not Fixable
It would not eliminate or materially reduce these concerns if the protocol allowed a triage doctor or team to use the CFS rating of a patient as “a factor” in the triage decision, without it being mandated as the sole or determinative factor. This is because:
a) To the extent that a triage doctor or team uses the CFS at all for triage, it has all the serious problems here identified.
b) If the triage protocol gave a triage doctor or team a discretion to weigh a patient’s CFS score as a factor in their triage decision, there would be no assured consistency in how much weight each triage doctor or team gives that CFS score. Some could give it a lot of weight. Others could give it much less weight. Some or all doctors or triage teams could give a patient’s CFS score different weight from patient to patient.
c) For a triage doctor or team to be given a discretion to decide how much weight to give a patient’s CFS score in making a triage decision is in effective to give that doctor or team a carte blanche to apply whatever triage criteria they wish. After using whatever triage criteria they wish, they could thereafter assign to the patient’s CFS score that amount of weight that will support the outcome that the triage doctor or team had preferred.
d) This opens the door to discriminatory or stereotype-based decisions. It also opens the door to a triage doctor or team in effect making their decisions on the patient’s perceived quality of life or social utility.
Beyond the foregoing, there is a practical risk that this triage protocol will not govern actual triage decisions, regardless of its contents. In a specific hospital, in the midst of a pandemic surge, there is a real risk that a triage doctor or team, called upon to make a critical care triage decision, will look at the four patients who need critical care and the two available critical care beds, and will size them up based on the doctor’s or team’s own personal assessment or views of who is the most “deserving”. Here again, the risk of stereotypes and of assessing perceived quality of life or social utility of each of the patients is palpable. The CFS’s focus on a patient’s ability to undertake certain activities of daily living independently or without assistance risks triggering such stereotype-based thinking.
The Bioethics Table has asked if the problem is not with the CFS as a critical care triage assessment tool, but simply with its application. By this it might be thought that the CFS is fine as an assessment tool, but that steps need to be taken to ensure that it is applied properly.
This is incorrect. For the reasons set out above, the CFS is fatally flawed as the tool for making such life and death decisions. Those fatal flaws are not fixed by focusing on its application. To illustrate this, had the triage protocol authorized a doctor to take into account a patient’s race when making a critical care triage decision, such impermissible racism could not be cured by simply setting out cautions in the protocol regarding its application, such as a direction to not discriminate because of race.
The Bioethics Table raised with us a suggestion that if physicians were to assess a critical care patient’s likely mortality without using the CFS, there is a risk that in the case of some seemingly frail patients with disabilities, physicians would be more likely to assess them as more likely to die than would be the case if those patients were assessed using their CFS score. To even begin to entertain such a justification for the CFS, it would be essential as a first step to have reliable studies showing that this risk is the case, and to explore what the causes are for the differential in physicians’ assessment of those critical care patients. If it were true that physicians who do not use the CFS are so prone to overestimate the mortality of seemingly frail patients or of some patients with certain disabilities, this would call into question the entire enterprise of having physicians making these triage decisions.
At bottom, after extensive and thorough meetings with some members of the Bioethics Table, we were not given a clear and convincing explanation why in the case of a critical care patient with a progressive disease but who has more than six months to live, how soon that patient will die is correctly measured by the number of activities of daily living that they can perform without assistance, having regard to each of these specific activities: dressing, bathing, eating, walking, getting in and out of bed, using the telephone, going shopping, preparing meals, doing housework, taking medication, or handling their own finances. What is it about those specific activities of daily living that the CFS measures that is supposedly so clearly and causally predictive of the patient’s likely mortality? We asked for this several times.
6. No Matter What, the Triage Protocol Should Include Certain Specific Directions
Whatever be the assessment tool, if any, that is mandated in the triage protocol, the protocol should give the following directions. These derive from the he April 14, 2020 AODA Alliance Discussion Paper on Ensuring that Medical Triage or Rationing of Health Care Services During the COVID-19 Crisis Does Not Discriminate Against Patients with Disabilities, on which the AODA Alliance has received no negative feedback in the four months since it was made public:
1. A hospital or physician should never take into account or hold against a patient with a disability the hospital’s or physician’s beliefs or assessment of a patient’s future quality of life living with a disability, when deciding if that patient will get critical care that they need. A patient’s disability must not be used as a factor weighing against that patient receiving needed medical services.
2. The hospital, physician or other official deciding who will get critical care they need must never weigh or hold against a patient with a disability the fact of their disability or the hospital’s or doctor’s belief about the cost to the public that the patient’s needs in future will pose if they survive the COVID-19 virus.
3. The personal ventilator of a person with a disability who comes to hospital with COVID-19 symptoms and who brings their personal ventilator with them must not have the hospital try to re-allocate their ventilator to another patient.
4. Decisions over which patients needing critical care will get critical care should not be based on the physician’s predictions, whether accurate or stereotype-based, about the eventual long-term lifespan of that patient unrelated to the COVID-19 diagnosis. The hospital, physician or other official deciding who will get the critical care must not weigh or hold against that patient with a disability the fact of their disability or its perceived impact on their long-term lifespan.
5. The hospital, physician or other official who is deciding who will get critical care they need must never use a patient’s need for disability-related accommodations as a factor or reason for refusing them critical care they need.
6. If a patient, needing a COVID-19 test, has difficulties being tested due to their disability, the hospital or other testing facility should not refuse to administer the test. Instead, the patient should be offered an accommodation to their disability, such as voluntarily taking sedation to enable the test to be administered.
7. A long term care facility’s decisions over whether or not to send a COVID-19 patient to the hospital should not be made on the basis of the resident’s age, disability or both, nor on the belief that the health system is overtaxed and therefore this person should not be offered treatment. This is apart from any question of whether a long-term care home should even make this decision on their own, without contacting the resident’s physician, and without discussing the situation with the resident’s substitute decision-maker.
8. When an emergency call e.g. for an ambulance is made, emergency medical technicians EMTs should never use the patient’s disability or their predictions about whether that might lead a doctor to refuse to treat them as a reason or factor to refuse to bring them to the hospital if they otherwise have symptoms warranting a trip to the hospital.
9. No nurse or other hospital staff should ever de-prioritize a hospital patient with disabilities or decline to immediately notify the attending doctor on the request of the patient or their family, on the grounds that the nurse thinks the overloaded doctors may not assign scarce critical care to that patient even though they need critical care.
In recommending these directions, we emphasize that their inclusion in the triage protocol, while essential, would not rectify the serious problems with the CFS from the disability perspective.
D. Concluding Considerations
In summary, the Bioethics Table needs to go back to the drawing board to identify an assessment tool that is properly justified and that does not enshrine and promote disability-based discrimination in relation to life and death decisions. The middle of a pandemic would not be the place to try out the CFS and see how well it works.
The March 28, 2020 triage protocol must be clearly and categorically rescinded now. The longer the Government delays in doing this, the more it festers, further embedding harmful ideas and practices that discriminate against patients with disabilities.
The AODA Alliance very much appreciates the opportunity to offer its input to the Bioethics Table on this vital issue. We regret that we were not included in the consultation process in February and March of this year leading to the development of the March 28, 2020 triage protocol. Had we been included in this process much earlier, we would have been able to raise these concerns in fuller detail much earlier.
We remain eager to do what we can to assist the Bioethics Table and the Ontario Government as they grapple with this issue.