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Accessibility for Ontarians with Disabilities Act Alliance Update
United for a Barrier-Free Society for All People with Disabilities
Web: www.aodaalliance.org Email: aodafeedback@gmail.com Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/
In A Second COVID-19 Wave If There Aren’t Enough Ventilators for All Patients Needing Them, A new Draft Ontario Medical Triage Protocol Would Continue to Discriminate Against COVID-19 Patients with Disabilities
July 16, 2020
SUMMARY
1. What’s the Serious Issue?
Despite having four months to fix this serious problem, in the COVID-19 crisis the Ford Government has still not rooted out the current danger to people with disabilities, induced by a protocol that Ontario Health sent to all hospitals last spring. That protocol lets hospitals violate basic human rights of COVID-19 patients with disabilities if a surge in COVID-19 cases meant there’s not enough ventilators for all critical patients needing them. Despite months of efforts by disability advocates, a new draft “medical triage protocol” which the Government has under consideration, and which we reveal to the public here while it is open for input, leaves the danger of disability discrimination in place.
Thankfully, Ontario now has no ventilator shortage. However a second wave of COVID-19 cases later this year could create a surge in demand for ventilators. To date, the Ford Government’s troubling handling of what to do if there are too few ventilators for COVID-19 patients has been improperly shrouded in secrecy.
Early in the COVID-19 crisis, Ontario Health, part of the Ontario Government, sent a very troubling March 28, 2020 medical triage protocol to Ontario hospitals. It spelled out what to do if there is more demand for life-saving ventilators than there are ventilators to go around. The Government did not make that protocol public. After it was leaked early last April to some within the disability community, disability advocates slammed it and called for it to be rescinded and replaced.
2. What’s New on This Issue?
Here is the late-breaking news on this issue, backed by Government documents that we are making public in this Update.
1. We now confirm that the Government sent the original March 28, 2020 medical triage protocol to Ontario hospitals. A July 7, 2020 letter from Ontario Health’s team drafting the triage protocol, set out below, states:
“The draft recommendations were shared by Ontario Health with hospitals on March 28, 2020 to help hospitals to prepare for the possibility of a major surge in critical care demand and to prevent catastrophic health outcomes as have been seen in other jurisdictions.”
2. It is now clear and beyond dispute that the Government has still not rescinded that original March 28, 2020 medical triage protocol. Disability advocates including the AODA Alliance, as well as the Ontario Human Rights Commission, have called on the Government to rescind that original medical triage protocol, because it violates the human rights of patients with disabilities. Ontario Health’s June 15, 2020 letter to the Ontario Human Rights Commission, set out below, states the following regarding the medical triage protocol:
“Our goal is to have a final document by the end of July, or to rescind it. “
3. A Government-appointed committee of physicians and bioethicists that have been assigned to lead the work in this area have written a new revised draft of the medical triage protocol. We among others have received it. We are here making it public, setting it out below, along with related correspondence between the Ontario Human Rights Commission and Ontario Health.
4. On July 15, 2020, a number of members of Ontario Health’s committee of physicians and bioethicists, assigned to lead this protocol’s development, held a two-hour virtual consultation with several disability community representatives, including the AODA Alliance. This is the first time the AODA Alliance had an opportunity to speak with those leading this issue for the Ford Government. We were not named on that Committee’s list of organizations it had consulted, or to be consulted. This virtual meeting came some three months after a senior official involved in the development of the initial protocol announced on province-wide television that it was a top priority for the Government to consult on this protocol.
As detailed further below, the disability advocates consulted at that meeting unanimously showed that the revised draft medical triage protocol still creates a real and serious danger of discrimination against patients with disabilities.
5. Ontario Health’s team developing this new draft medical triage protocol aims to submit to the Ford Government its recommendation for a revised medical triage protocol by July 31, 2020. Written submissions can be sent to that team by writing jcb.director@utoronto.ca up to July 20, 2020.
6. The ARCH Disability Law Centre, which has played a tremendous leadership role on this issue, will be making a written submission by July 20, 2020 in which the AODA Alliance will contribute our input. We will make it public as quickly as we can.
3. What’s Wrong With the New Revised Draft Medical Triage Protocol?
Here is a summary of just some of the many serious problems with the revised draft medical triage protocol that is set out below.
1. This new revised draft medical triage protocol does not effectively undo the damage that the March 28, 2020 protocol caused for people with disabilities. The Government had spread that harmful earlier protocol across Ontario’s health care system. Any revised protocol must fully and effectively undo that damage.
2. The draft revised protocol continues to discriminate against patients with disabilities. It includes some vague references to human rights. Those references are entirely insufficient to eliminate the discrimination that the original protocol and this revised draft protocol each cause. As but one example, the revised draft protocol, like the original one, continues to use the Clinical Frailty Scale, which itself presents real and serious disability human rights concerns. Its prominence in the protocol has been reduced but its use has not been eliminated. Whether or not there are any studies on that scale does not detract from the fact that that scale should not be used.
3. On April 14, 2020, the AODA Alliance made public a Discussion Paper on this issue. It set out clear illustrations of things that need to be spelled out in the medical triage protocol to address the risk of discrimination against patients with disabilities. The committee drafting the protocol has seen that Discussion Paper. However, the revised medical triage protocol does not include any of the Discussion Paper’s proposals, nor does it cure any of the harms to patients with disabilities that the Discussion Paper illustrates. The protocol should be amended to include all the specific directions and recommendations in the AODA Alliance’s Discussion Paper.
4. The revised draft medical triage protocol uses vague criteria that any two doctors might interpret very differently. It speaks of patients with “a low probability of surviving more than a few months”. One doctor might think that means 2 to 3 months. Another doctor might think that means 6 to 8 months. Its directions must be far clearer and less open to arbitrarily different applications from one doctor to the next.
5. The revised medical triage protocol uses lofty and vague language such as its references to ethics, equity, human rights, and fairness. However, those lofty terms will do nothing to stop a well-intentioned doctor or hospital from taking action that discriminates against patients with disabilities. Indeed, as is the case here, many if not most of the barriers facing people with disabilities are created without any intent to harm people with disabilities.
For example, the revised draft medical triage protocol states:
“Triage decisions should treat similar cases similarly based on clinical criteria, i.e., those with similar prognoses should be treated similarly.”
The medical triage protocol might thereby be meant to implement the authors’ notions of fairness and equality. However, this flies in the face of the Supreme Court of Canada’s important ruling in its landmark decision on the meaning of equality rights, Andrews v. Law Society of British Columbia [1989] 1 SCR 143, where the Court proclaimed:
“Thus, mere equality of application to similarly situated groups or individuals does not afford a realistic test for a violation of equality rights.”
6. If there is a shortage of ventilators during a second wave of COVID-19, this revised draft medical triage protocol in effect creates a “death panel” of two doctors who will decide in an individual case in an individual hospital who gets the ventilators and who does not, among all the patients who need them. It requires no prior training on this issue for the doctors chosen to play that role. It provides no fair procedures or due process to the very patient whose life hangs in the balance. The patient and their family have no right to be heard by those deciding the patient’s fate. There is no assurance that the family can get their family doctor to chime in and add their voice to the discussion. There is no right of appeal to anyone else in the hospital.
There is no duty on the doctors or hospitals to give the patient or their family basic rights advice. This is so even though the revised draft medical triage protocol gives superficial and inadequate lip service to due process concerns, stating:
“Due process considerations (e.g., transparency about reasons for triage decisions) are especially important in this context. Hospitals should plan for how they might proactively prepare patients and families for possible outcomes of the triage process as well as how they would respond transparently and compassionately to patient or family concerns should these arise.”
Appendix E to the revised draft protocol sets out a sample of what a doctor might tell a patient and their family if it has been decided to refuse them a needed ventilator due to a ventilator shortage. That seriously deficient text gives the patient and family no rights advice or other basic information of what they can do if they wish to dispute the decision and to have it reconsidered.
The revised draft Medical triage protocol in substance wrongly and summarily rejects the idea of any appeal, stating:
“critically ill patients must be assessed rapidly in a dynamic and over-taxed environment, a formal process for patients and families to appeal triage decisions may not be feasible or appropriate (e.g., if critical care is contrary to the patient’s wishes).”
4. For More Background
* The April 7, 2020 virtual public forum on the impact of COVID-19on people with disabilities, jointly organized by the AODA Alliance and the Ontario Autism Coalition. During this event, ARCH Disability Law Centre executive director Robert Lattanzio first made public the existence of the original March 28, 2020 medical triage protocol, and the disability human rights problems that it creates.
* The April 8, 2020 open letter, spearheaded by ARCH, identifying the serious disability human rights violations in the original March 28, 2020 medical triage protocol.
* The AODA Alliance’s April 14, 2020 Discussion Paper on what the medical triage protocol should include. In the three months since this was made public, no negative feedback was received about its recommendations.
* The Ford Government’s April 21, 2020 announcement that it would consult community and human rights experts on the medical triage protocol. It claimed that the March 28, 2020 protocol was only a “draft” even though it was never marked “draft.
* The ARCH Disability Law Centre’s detailed May 13, 2020 analysis of the serious disability human rights violations, which the AODA Alliance endorses.
* To learn more about the many barriers that impede patients with disabilities in Ontario’s health care system, read the AODA Alliance’s February 25, 2020 Framework on what the promised Health Care Accessibility Standard should include, to be enacted under the Accessibility for Ontarians with Disabilities Act.
* The AODA Alliance’s health care web page, to learn more about the advocacy efforts to tear down the barriers facing people with disabilities in Ontario’s health care system.
* The AODA Alliance’s COVID-19 web page details the coalition’s efforts to advocate for the needs of people with disabilities during the COVID-19 pandemic.
Below we set out:
* The second draft Critical Care Medical Triage Protocol.
* the July 7, 2020 letter from the Ontario COVID-19 Bioethics Table of Ontario Health to organizations taking part in the July 15, 2020 roundtable on the triage protocol and people with disabilities.
* the June 15, 2020 letter from Ontario Health to the Ontario Human Rights Commission
* the June 4, 2020 letter from the Ontario Human Rights Commission to Ontario Health
* the June 4, 2020 Ontario Human Rights Commission letter to the Ontario Minister of Health
We always invite your feedback. Write us as aodafeedback@gmail.com
MORE DETAILS
Text of the Revised Draft Ontario Medical Triage Protocol
Critical Care Triage for Major Surge in the COVID-19 Pandemic:
Updated Recommendations
Note: This document offers recommendations developed by provincial experts in bioethics in consultation with clinical experts and informed by stakeholder feedback. It reflects best knowledge and advice at the time of writing and is subject to revision based on changing conditions and new evidence in the COVID pandemic.[1]
Overview:
During the COVID-19 pandemic, a major surge in demand for critical care may exceed available health system capacity. Difficult decisions would need to be made about how critical care resources should be allocated to meet patient needs. Although advanced health systems have experience with and are well-prepared to manage minor and moderate surges in demand for critical care, there is limited clinical and ethical guidance for how a major surge in demand for critical care should be managed. In Ontario, major surge is defined as: “an unusually high increase in demand that overwhelms the health care resources of individual hospitals and regions for an extended period of time, where an organized response at the provincial or national level is required.”[2] The purpose of this document is to propose a critical care triage approach for major surge in the COVID-19 pandemic, to raise key ethical and clinical considerations for critical care triage in this context, and to offer suggestions for implementation of the critical care triage approach in the Ontario health system if needed.[3]
Critical care triage in the COVID-19 pandemic should aim to maximize the survival and recovery of as many critically ill patients[4] as possible and as equitably as possible within available critical care resources. In a pandemic, critical care triage for major surge will inevitably involve an alternative standard of care. For this reason, critical care triage for major surge should be considered an option of last resort – to be invoked only when all existing local or regional critical care resources have been used, all reasonable attempts have been made to move patients to or resources from areas with greater critical resource availability, and only for as long as the major surge lasts – and would require an emergency order in order to be implemented in Ontario. When not all patient needs can be met within resource constraints, triage is the systematic and consistent process of determining priorities for treatment based on objective and explicit clinical criteria. This is especially important in the context of a major surge, when the number of patients with critical illness exceeds critical care capacity. In the absence of explicit triage criteria and a systematic and consistent process of triage, inconsistencies in clinical practice may result in increased mortality and morbidity.
Critical care triage for a major surge should be predictable and apply to an entire region rather than to individual hospitals alone. In the current COVID-19 pandemic context, the decision to initiate triage falls under the authority of, and would be made by, the Ontario Health Critical Care Command Centre with full situational awareness of the existing critical care resources and demand for critical care. In a major surge, a proportionate response to increasing and decreasing levels of demand on scarce critical care resources is essential. The degree of triage should be calibrated to the degree of demand in order to limit the possibility that a patient will be denied critical care resources unnecessarily. As critical care demand increases in a major surge, triage criteria should become proportionately more stringent; similarly, as critical care demand decreases in a major surge, triage criteria should become proportionately less stringent. Triage criteria and their application should be evaluated at regular intervals to ensure that the overarching goal of maximizing survival and recovery of critically ill patients within available critical care resources is met.
Critical care triage for major surge in the COVID-19 pandemic should be guided by ethical principles. Relevant ethical principles include medical utility, proportionality, fairness, equity, beneficence (including non-abandonment), respect for autonomy, and accountability. Respect for human rights and solidarity with all community members are key values of an ethical triage approach. In a major surge in demand for critical care resources, the necessity of critical care triage does not change the fact that the lives of all Ontarians are of equal moral worth and that all patients must be cared for and receive appropriate symptom management. Those who do not receive critical care resources due to triage should continue to receive other appropriate treatments and supports, including palliative care if needed. Importantly, critical care triage may have a differential impact on some patient populations who may be disadvantaged due to pre-existing health and social inequities or conscious or unconscious bias in clinical settings. Evidence of systemic bias against specific groups should be considered as reason to review and potentially revise these triage recommendations and their application.
Guiding Ethical Principles:
The overall purpose of a triage system in a pandemic is to minimize mortality and morbidity for a population overall as opposed to an individual mortality and morbidity risk. There are published frameworks outlining ethical principles to guide triage systems.1-4 Recent studies of Canadian perspectives on priority setting of critical care resources in a pandemic indicate a preference for maximizing the number of lives saved,5,[5] followed by the application of a fair procedure for prioritization of people with similar likelihood of benefit.1,[6] In addition, there is published guidance on how triage systems can minimize risk of discrimination based on factors unrelated to a patient’s clinical needs and mitigate discriminatory application of such frameworks in practice.6-8 This body of work informs the ethical underpinnings of the proposed triage approach.
In the context of a major surge in demand for critical care in a pandemic, the following ethical principles are foremost:
Medical Utility – Aim to derive the maximum benefit from critical care resources by prioritizing those patients who are most likely to survive their critical illness. When resources are scarce in a pandemic, patients who are very likely to die from their critical illness or who are very likely to die in the near future[7] even if they recovered from their critical illness would have a lower priority for critical care resources.
Proportionality – Ensure that the number of individuals who are negatively affected by the use of critical care triage criteria in a pandemic does not exceed what would be required to accommodate the surge in demand. Given that critical care capacity and demand can be dynamic, access to critical care should be restricted only to the extent necessary to achieve maximum benefit within resource constraints and should become less restrictive as resources become available or the surge abates.
Fairness – Ensure all patients have a fair chance to benefit from critical care by allocating critical care resources on the basis of clinical criteria relevant to predicting the patient’s likelihood of survival. Triage decisions should treat similar cases similarly based on clinical criteria, i.e., those with similar prognoses should be treated similarly. In the event that clinical criteria are not sufficient to prioritize one patient over another, a fair procedure should be used.
Equity and Respect for Human Rights – Affirm and safeguard the equal moral worth of all people in Ontario by implementing measures to minimize the risk of perpetuating or exacerbating the effects of systemic discrimination or marginalization on access to health care[8] and to uphold individual human rights to the extent possible in a pandemic emergency.[9] This includes ensuring triage decisions: i) are based on objective clinical criteria grounded in best available evidence and not any particular demographic,[10] disease, or disability independent of an individual patient’s prognosis,[11] ii) involve an individual assessment of a patient’s clinical condition in relation to the triage criteria and not to a judgment of the individual’s social value, quality of life or long-term survival, and iii) are supported by accommodations as appropriate for an individual patient to the extent possible in an infection control context (see Respect for Autonomy below).
Beneficence – Act in a way that promotes patients’ well-being to the greatest extent possible given resource constraints by clarifying patient goals of care (i.e., patient wishes, beliefs, and values regarding their treatment) in relation to their critical care needs, providing continuity of care for all patients appropriate to their clinical circumstances, including those whose critical care needs cannot be met, and ensuring no patient is left without care. Although resource scarcity in a pandemic may limit the ability to meet all patient needs, maintaining a caring relationship with all patients is essential.
Respect for Autonomy – Ensure all patients have a chance to make their goals and wishes known and to have treatment provided in alignment with these goals and wishes wherever possible. Patients (or their substitute decision-makers) may need support to make free and informed decisions about their care. To ensure effective communication and informed decision-making, individual patients may require accommodations (e.g., plain language, use of communication devices, interpretation services) and/or participation of attendant care worker or other support person to the extent possible in an infection control context.
Accountability – Remain answerable for decisions made in the context of triage. This means communicating triage decisions, including the criteria used to make those decisions, in an open and honest manner to patients or their substitute decision-makers and to the broader community served. It also involves monitoring the implementation of the triage approach to ensure decisions are based in best clinical evidence and expertise supported by ethical reasoning. Triage decisions, criteria, and processes should be evaluated at regular intervals at local, regional and provincial levels to assess the extent to which they are clinically and ethically justified.
In a pandemic context, there is an intrinsic tension between some of the ethical principles outlined above. On the one hand, a criteria-based triage approach that focuses on an individual clinical assessment of predicted mortality and not on any other factors (demographic, quality of life, social standing, etc.) offers a defensible way to reconcile some of the tensions between the principle of medical utility (saving the most lives possible) and the principle of equity (mitigating systemic discrimination or implicit bias in health care). On the other hand, for patients who might wish but who are found ineligible for critical care in a major surge, the pandemic context creates a tension between the principles of medical utility and respect for autonomy, and underscores the importance of the principle of beneficence to ensure all patients receive care even if critical care treatment is not available. The evolving COVID pandemic context in Ontario reveals pre-existing health and social inequities in health care, which a triage approach by itself will be unable to resolve. However, the potential adverse consequences of a triage approach for vulnerable groups can be mitigated in a few ways, including: i) the systematic collection of data on triage outcomes to monitor the effect of the triage approach on vulnerable groups, and ii) proactive measures taken ‘upstream’ in the community and across the health system to prevent members of vulnerable groups from exposure to COVID-19 in the first place. Some of these tensions may not be fully resolved in a pandemic. For this reason, the principles of proportionality and accountability are essential bulwarks for an ethical triage approach under difficult pandemic circumstances.
Clinical Triage Criteria for Critical Care in a Major Surge:
Explicit criteria-based triage decision-making has been recommended in other published guidance for critical care in a pandemic.[12] Use of explicit criteria fosters consistency, advances medical utility and fairness, and supports accountability. It may also alleviate clinician burden at a time of high stress.[13] Eligibility and ineligibility criteria are specified below based on the best available evidence and expert opinion regarding predicted mortality. A patient should meet one of the eligibility criteria and should not meet any of the ineligibility criteria for access to critical care. Where there is insufficient evidence to support a reasonable clinical judgement regarding whether a patient meets ineligibility criteria, a decision of ineligibility should be avoided. In all cases, an individualized review of each patient’s clinical condition should be performed, ensuring not to assume that any specific diagnosis is determinative of prognosis or near-term survival without an analysis of current and best available evidence and the individual’s ability to respond to treatment. Please note: these criteria apply only to patients aged 18 years and should only be used in the context of a major surge in demand for critical care.
Eligibility criteria were outlined by Christian et al.9 and are repeated here:
Variable
Requirement for invasive ventilator support
Eligibility Criteria for Critical Care Admission
Refractory hypoxemia (SpO2 <90% on FiO2 0.85) OR
Respiratory acidosis with pH <7.2 OR
Clinical evidence of respiratory failure OR
Inability to protect or maintain airway
(SpO2 = oxygen saturation as measured by pulse oximetry)
Variable
Hypotension
Eligibility Criteria for Critical Care Admission
Low systolic BP (e.g., SBP <90 mm Hg for most adults) OR
relative hypotension with clinical evidence of shock (altered level of consciousness, decreased urine output, end-organ hypoperfusion), refractory to volume resuscitation requiring vasopressor/inotrope support that cannot be managed on a medical ward
Ineligibility criteria for critical care triage in a pandemic have typically fallen under two categories: (1) criteria that indicate a low probability of surviving an acute episode of critical illness, and (2) criteria that indicate a low probability of surviving more than a few months regardless of the acute episode of critical illness.9 These categories are not mutually exclusive, as life-limiting illnesses affect prognosis from acute illness, and acute illness affects the trajectory of chronic illness. The criteria outlined below would limit eligibility for critical care if someone is very likely to die from their critical illness or are very likely to die in the near future even if they recovered from their critical illness. Please note: these criteria are not exhaustive and are meant to reflect known evidence and/or clinical experience-based prognostic indicators for specific conditions. Some medical conditions not listed may also indicate a similarly poor prognosis, and such patients should be triaged accordingly. Conversely, some medical conditions listed may not indicate a poor prognosis in specific situations and such patients should not be found ineligible. Clinicians should use their best clinical judgment informed by these clinical triage criteria as appropriate to determine whether an individual patient’s clinical circumstances would indicate that they should receive critical care resources.The tools listed in the table below can be found in Appendix C.