Accessibility for Ontarians with Disabilities Act Alliance Update United for a Barrier-Free Society for All People with Disabilities
Web: https://www.aodaalliance.org Email: aodafeedback@gmail.com Twitter: @aodaalliance Facebook: https://www.facebook.com/aodaalliance/
April 1, 2021
SUMMARY
1. The News
The new and much more contagious COVID-19 variants are rapidly spreading. The media reports that Ontario hospital Intensive Care Units have more COVID-19 patients than ever. The Ford Government is understandably imposing more lock-down measures to stem the spread of the pandemic.
This all means that the risk of Ontario having to resort to rationing critical care, also called critical care triage, grows ever more imminent. Yet in contrast to regular public reports by the Ford Government on its plans for distributing the COVID-19 vaccine, the Government’s inexcusable secrecy over its dangerous critical care triage plans and protocol remains omnipresent. Below we set out two new media reports on this issue. We offer more reflections on this life-and-death story, one that deserves far more attention from other news organizations.
1. A CTV News online story that was posted on March 30, 2021 on the critical care triage issue. It also ran on the CTV Toronto 6 pm news on March 31, 2021.
2. A guest column on the critical care triage issue that ran in the March 4, 2021 Globe and Mail.
2. Some Reflections on the News
1. Amidst the recent coverage, and not-so-recent coverage, which media organizations are strikingly absent from the scene? Prominent among them is the CBC. CBC’s Ontario-based radio and TV local news programs have included NOTHING on the disability concerns with Ontario’s critical care triage plans in months. Yet Canada’s public broadcaster claims to have a strong commitment to inclusiveness and diversity in its coverage. We will later have more to say about this.
2. In the CTV news report set out below, attention focuses on the controversial online calculator which the AODA Alliance revealed to the public earlier this year. It was secretly created to help doctors and hospitals decide who will be refused life-saving critical care, if critical care triage becomes necessary.
The AODA Alliance’s February 25, 2021 report on Ontario’s seriously-problematic critical care triage plans made public the existence of this online life-and-death calculator that has been provided to Ontario hospitals and doctors. In the following excerpt from that report, the AODA Alliance also identified the very serious problems with this calculator. The AODA Alliances February 25, 2021 report states
Ontario Has Created a Seriously Flawed Online Calculator to Compute Who Will Be Refused Needed Life-Saving Critical Care During Triage
We were deeply troubled to discover from the January 23, 2021 webinar that Ontario has created an online Short Term Mortality Risk Calculator. It is supposed to calculate whether a patient will be refused needed life-saving critical care, if critical care triage is directed. It is at the website www.STMRCalculator.ca.
A triage physician can input information about a patient who needs critical care into this short term mortality risk calculator. The calculator then coldly spits out a number that gives the patient’s triage priority score. That number will determine whether a patient is eligible for critical care they need, or whether they will be refused critical care, depending on the level of critical care triage that has been directed. During the January 23, 2021 webinar, Dr. James Downar, reportedly the author of the January 13, 2021 Critical Care Triage Protocol and a member of the Bioethics Table, stated:
We’ve actually also got a calculator now that’s online that helps calculate these and gives the sort of you can punch in some clinical information. It will give you the answer.
The Government and its Ontario Critical Care COVID Command Centre and other related health bodies have never announced to the public the existence of this online calculator, to our knowledge. We have seen no indication that it has been successfully field-tested and/or peer-reviewed.
This short term mortality risk calculator is seriously objectionable. First, it wrongly and disrespectfully reduces a life-and-death decision about a seriously ill human being to a cold, digitized computation.
It risks giving triage doctors a false sense that it is the calculator that decides who lives and who dies. That wrongly diminishes a triage doctor’s needed alertness to their responsibility for their action. It is vital for triage doctors to own the triage decisions they make and feel fully responsible and accountable for them. This report later shows further concerns in that regard.
Second, this calculator creates the dangerous false impression that such a life-and-death assessment can in fact accurately and safely become an objective mathematical calculation. Medical science is far from that precise, when it comes to predicting whether a critically ill patient will die within the next year. On the January 22, 2021 edition of CBC Radio’s White Coat Black Art program, Dr. Michael Warner, head of the Michael Garron Hospital’s Intensive Care Unit, stated in part:
What’s different now is we have to essentially guesstimate what would happen a year from now.
He explained that this is not how treatment decisions are now made, and that doing this would be very difficult to do because doctors will be very busy caring for patients, and not all patients will have this protocol. This head of a Toronto hospital’s ICU said candidly that he is not sure how they would action this in real life because it’s a policy on paper Dr. Warner was asked how confident he is that emergency doctors can use these new rules accurately in a chaotic and stressful environment like an emergency room. Dr. Warner responded in part:
so it’s hard to know how we would be able to effectively use a tool that’s written on a piece of paper, where two doctors have to verify someone’s mortality risk and then decide on what to do, if there are patients everywhere, you know, potentially dying. You know, I think we need something written down on paper, so that all these stakeholders can review it and provide their input, but at the end of the day, if we ever have to use it, we may have to improvise.
Further supporting the serious concern that that this is not a precise mathematical calculation, Dr. James Downar, reportedly the January 13, 2021 Critical Care Triage Protocol’s author, conceded during the January 23, 2021 webinar that triage physicians will be estimating a triage patient’s likelihood of surviving for a year after receiving critical care. Dr. Downar said:
Ultimately this boils down to an individualized assessment for each person. This is not a checklist that applies to everybody, but simply an approach to estimating short term mortality risk, and using tools as appropriate to do that. The clinical criteria the prioritization criteria are based on published data where possible, and in some cases, based on expert opinion, based on the peer review that Andrea referenced.
Dr. Downar also earlier said during that webinar:
The focus of this is on the mortality risk at twelve months, not the estimated survival duration for an individual, right? So we know that it can be challenging to predict survival for individuals, but when we are looking at populations based on published data, we can I think be reasonably more sure about risks and certainly within the ranges, the broad ranges that we are talking about here.
Third, this online calculator uses criteria that are transparently disability discriminatory, contrary to the Ontario Human Rights Code and the Canadian Charter of Rights and Freedoms. Under the heading Frailty, for patients over 65 with a terminal illness and expected mortality of more than six months, the calculator uses the disability-discriminatory Clinical Frailty Scale, described earlier in this report. As noted earlier, that Scale inquires about the number of activities of daily living that a patient can do without assistance, including dressing, bathing, eating, walking, getting in/out of bed, using the telephone, going shopping, preparing meals, doing housework, taking medication, and handling their own finances. The calculator increases the patient’s frailty rating accordingly.
The AODA Alliance and the ARCH Disability Law Centre have amply shown the Government and the Government’s external advisory Bioethics Table that the Clinical Frailty Scale is replete with unjustifiable disability discrimination. See e.g. the AODA Alliances August 30, 2020 written submission to the Bioethics Table, the AODA Alliance’s August 31, 2020 oral presentation to the Bioethics Table and the ARCH Disability Law Centre’s September 1, 2020 written submission to the Bioethics Table. Neither the Bioethics Table nor the Ministry of Health, nor Ontario Health nor the Ontario Critical Care COVID Command Centre have presented any convincing arguments to disprove that the Clinical Frailty Scale is disability discriminatory, contrary to the Ontario Human Rights Code and the Charter of Rights.
That alone would be fatal to this online calculator. However, making this worse, the AODA Alliance has discovered that the online calculator also uses other disability discriminatory criteria. We have not had a full opportunity to investigate the entire calculator from this perspective. However, as an example, for Cancer, the calculator rates the following physical ability criteria all of which can be tied directly to a person’s disability:
Whether a patient is Fully active and able to carry on all pre-disease performance without restriction
Whether a patient is Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light housework, office work
Whether a patient is Ambulatory and capable of all selfcare but unable to carry out any work activities; up and about more than 50% of waking hours
Whether a patient is Capable of only limited selfcare; confided to bed or chair more than 50% of waking hours
Whether a patient is Completely disabled and cannot carry out any self-care; totally confined to bed or chair persons in this category receive the worst rating, for getting access to critical care.
The online Calculator does not alert doctors to these as serious human rights concerns. A physician using this online calculator could commit flagrant disability discrimination, without being alerted to this, and thinking it is totally appropriate conduct.
The foregoing examples of disability discrimination contradict the clear statement of the Government’s Bioethics Table in its September 11, 2020 report to the Ford Government as follows:
To emphasize: the existence of disability must not be used as a criterion on which to deny critical care.
That important sentence is strikingly missing from the later January 13, 2021 Critical Care Triage Protocol. It is not known whether the Bioethics Table later retreated from that important sentence in its later secret January 12, 2021 report to the Government, which the AODA Alliance and the public have not seen.
Fourth, the Bioethics Table and the Ontario Government including its Ontario Critical Care COVID Command Centre, never consulted the AODA Alliance or, to our knowledge, other disability advocates and experts, on this online calculator. The AODA Alliance has no knowledge whether the Government or its Bioethics Table or its Critical Care COVID Command Centre ever consulted the Ontario Human Rights Commission on this online calculator.
CTV’s March 30, 2021 report quotes Dr. Andrea Frolic (a bioethicist, not a physician) as defending the calculator. She has been quoted more than once in the role of defending the Ford Government’s critical care triage plans. The CTV report states:
The calculator, to be very clear, is not driving the clinical decision. The calculator simply helps the physician at the bedside to check the accuracy of the clinical judgment, said Dr. Andrea Frolic of Hamilton Health Sciences.
That claim is contradicted by the calculator itself and the information about it, set out above, that the AODA Alliance’s February 25, 2021 report provides.
The CTV report later quotes Dr. Frolic again as defending the disability-discriminatory content of the online life-and-death calculator. The news report states:
All of those criteria were pulled from global medical literature designed to determine the chance that someone would survive a year, Dr. Frolic said.
Great pains have been taken to ensure that equality, that any patient with any diagnosis gets the same assessment applied, to mitigate any potential bias, she said.
Frolic’s remarks are riddled with fatal flaws.
First, even if it were assumed that some studies purportedly point to using disability-discriminatory criteria (a proposition needing much further public inquiry) this would not mean that it thereby justifies disability discrimination that is contrary to the Ontario Human Rights Code and the Charter of Rights. By analogy, had there been a study that showed that a patient’s race or sex made them more likely to die within a year, that would not justify using a patient’s race or sex in the online life-and-death calculator. To be clear, that calculator does not include race or sex, nor are we saying that anyone has claimed that medical literature would support that or that racist or sexist criteria should be used. However, the point remains the same. Such racial, gender or disability discrimination is simply not permitted.
Second, Dr. Frolic says that the aim of this calculator is to treat all the patients the same. In order to achieve equality. Yet, the Supreme Court of Canada has made it clear for decades that same treatment can itself create discrimination. For people with disabilities, it often does. It would be same treatment to tell all job applicants that they must climb a flight of stairs to get into a building to attend a job interview. Yet for people using a wheelchair, that same treatment is clear disability discrimination.
Dr. Frolic has been told this. She served on the Ontario Government’s advisory Bioethics Table. Last summer, she took active part in meetings with disability advocates including AODA Alliance Chair David Lepofsky. Those advocates explained more than once that same treatment can constitute a denial of equality.
We emphasize that Dr. Frolic is not the issue. The Ford Government’s approach to critical care triage is the issue. However, Dr. Frolic is one of the few people who have served in the role of defending the Government on this issue, as the Government remains in hiding.
3. As noted earlier, below is also set out a guest column in the March 4, 2021 Globe and Mail by bioethicist ARTHUR SCHAFER. He makes a compelling argument why it is exceedingly harmful and dangerous for the Ford Government to keep Ontario’s plans for critical care triage shrouded in secrecy. We repeat here that if a member of the public wants to read those plans, it is the AODA Alliance website and not the Government’s website to which they must turn.
We take decisive exception to one comment in this Globe and Mail column. It argues:
Quebec, whose triage plan is public, allows doctors to remove patients from life support if their prognosis is poor, thereby freeing up resources for those more likely to benefit. If the goal is to save as many lives as possible, then Quebec’s plan seems ethically preferable to Ontario’s.
Some doctors are pressing the Ford Government to suspend the Health Care Consent Act, so that a doctor would have the power to unilaterally withdraw critical care from a patient already receiving it, even if that patient objects. We have repeatedly pointed out that this raises massive legal and constitutional concerns. As but one consideration, the column’s author might think that to do so could be ethical a view with which we strongly disagree. There is a real risk that it would implicate Canada’s Criminal Code’s homicide provisions.
As of now, there have been an inexcusable 791 days, well over two years, since the Ford Government received the final report of the Independent Review of the implementation of the Accessibility for Ontarians with Disabilities Act by former Ontario Lieutenant Governor David Onley. The Government has announced no comprehensive plan of new action to implement that ground-breaking report. This worsens the festering problems facing patients with disabilities during the COVID-19 pandemic, such as those threatened by the possibility of critical care triage . There are only 3 and ¾ years left for the Ontario Government to lead Ontario to become fully accessible to 2.6 million people with disabilities, as the Accessibility for Ontarians with Disabilities Act requires.
For more background on this issue, check out:
1. The AODA Alliance’s comprehensive February 25, 2021 report on the serious problems with Ontario’s critical care triage and plan.
2. The AODA Alliance’s December 21, 2020 news release on the critical care triage issue.
3. The Government’s external advisory Bioethics Table’s September 11, 2020 draft critical care triage protocol, finally revealed days ago.
4. The AODA Alliance’s unanswered September 25, 2020 letter, its November 2, 2020 letter, its November 9, 2020 letter, its December 7, 2020 letter, its December 15, 2020 letter, its December 17, 2020 letter, its January 18, 2021 letter and its February 25, 2021 letter to Health Minister Christine Elliott.
5. The August 30, 2020 AODA Alliance submission to the Ford Government’s Bioethics Table, and a captioned online video of the AODA Alliance’s August 31, 2020 oral presentation to the Bioethics Table on disability discrimination concerns in critical care triage.
6. The September 1, 2020 submission and July 20, 2020 submission by the ARCH Disability Law Centre to the Bioethics Table.
7. The November 5, 2020 captioned online speech by AODA Alliance Chair David Lepofsky on the disability rights concerns with Ontario’s critical care triage protocol.
8. The AODA Alliance website’s health care page, detailing its efforts to tear down barriers in the health care system facing patients with disabilities, and our COVID-19 page, detailing our efforts to address the needs of people with disabilities during the COVID-19 crisis.
MORE DETAILS
CTV Online News March 30, 2021
Originally posted at https://toronto.ctvnews.ca/would-you-be-admitted-to-hospital-amid-a-covid-19-surge-ontario-doctors-have-an-online-calculator-to-help-check-1.5367752 Would you be admitted to hospital amid a COVID-19 surge? Ontario doctors have an online calculator to help check Jon Woodward
Videojournalist, CTV News Toronto
@CTV_Jon
Published Tuesday, March 30, 2021 8:02AM EDT
A health-care worker wearing PPE transports a patient in the dialysis unit at the Humber River Hospital during the COVID-19 pandemic in Toronto on Wednesday, December 9, 2020. THE CANADIAN PRESS/Nathan Denette
TORONTO — An online calculator that would help Ontario doctors decide which patients should be treated and which should be turned away COVID-19 cases overwhelm hospitals is meant to be used as a last resort, says an ethics consultant involved in its design.
The Short-term mortality risk calculation tool takes in age and medical conditions, and outputs scores that can help a doctor determine the likelihood that a patient will survive for a year if treated.
If that threshold is low the bed that could have gone to that patient can be given to someone more likely to survive.
The calculator, to be very clear, is not driving the clinical decision. The calculator simply helps the physician at the bedside to check the accuracy of the clinical judgment, said Dr. Andrea Frolic of Hamilton Health Sciences.
But that hasn’t quelled worries of advocates for people with disabilities, who say that ingrained in the assessment tools it digitizes are biases against people in wheelchairs or people whose life span may not be clear.
The calculator dehumanizes it and makes it falsely seem like it’s a mathematical calculation. It is not, said David Lepofsky of the AODA Alliance, an Ontario disability advocacy group.
He pointed to elements of the ECOG Grade that included a score for Completely disabled; cannot carry on any self-care; totally confined to bed or chair.
People with disabilities are disproportionately exposed to getting COVID, and dying of COVID. It would be a cruel irony if they then faced the risk of being deprioritized in getting access to critical care, Lepofsky said.
The STMR Calculation Tool is a digital expression of the Short Term Mortality Risk Assessment for Critical Illness form that doctors may have to fill out if they are overwhelmed. That form was obtained by CTV News Toronto.
In a Level 1 Triage Scenario, patients with a greater than 80 per cent chance of dying in the next year are turned away. In Level 2, that drops to 50 per cent. In Level 3, patients with just a 30 per cent chance of dying could be turned away.
Among the list of conditions that could meet that criteria are severe trauma, burns, cardiac arrests, metastatic cancers, strokes, and liver failure.
The form includes a line of age greater than 65, and Clinical Frailty Score of greater than seven on a nine-point scale. It cautions doctors that this frailty must be part of a progressive illness, and not an ongoing condition.
All of those criteria were pulled from global medical literature designed to determine the chance that someone would survive a year, Dr. Frolic said.
Great pains have been taken to ensure that equality, that any patient with any diagnosis gets the same assessment applied, to mitigate any potential bias, she said.
It’s not immediately clear who is behind the online calculator. There’s no logo on the website, and a check of its domain registration shows redacted for privacy on many identifying details.
However in the site’s end user license agreement, the site mentions the Hamilton Health Sciences Corporation an agency of Hamilton Health Sciences. That was where the programming was done for the tool, which was commissioned as part of Ontario’s COVID-19 response, said Dr. Frolic.
Ottawa Centre MPP Joel Harden, who is the NDP Critic for accessibility and persons with disabilities, said there had been little public discussion of what end of care life should be.
We have a government operating in secrecy on critical life or death decisions. If the hospitals get overwhelmed the government will not debate out in the open what the criteria should be in rationing lifesaving care, Harden said.
The Ontario Ministry of Health did not return messages left by CTV News Toronto.
Globe and Mail March 4, 2021 / News
OPINION
Keeping Ontario’s triage plan secret is fostering mistrust
By ARTHUR SCHAFER
Founding director of the Centre for Professional and Applied Ethics at the University of Manitoba
The government of Ontario has a secret triage plan for the rationing of essential medical care. If a third wave of COVID-19 overwhelms Ontario’s hospital system, provincial protocols instruct doctors which patients should get priority life-saving treatments.
Although the guidelines have not been published, they reportedly mandate hospital intensivecare units to withhold life support from patients unlikely to survive at least 12 months. Patients already on life support will not have that support withdrawn, no matter how poor their prognosis.
The cabinet hasn’t yet given formal approval to these triage guidelines. Indeed, the Ministry of Health prefers to describe the plan as merely a “framework document” – with the implication that we need not pay too close attention. Nevertheless, the document has been distributed to the province’s hospitals.
Whether we label it a “plan” or something else, is it ethically defensible? Quebec, whose triage plan is public, allows doctors to remove patients from life support if their prognosis is poor, thereby freeing up resources for those more likely to benefit. If the goal is to save as many lives as possible, then Quebec’s plan seems ethically preferable to Ontario’s.
Most people understand that governments must plan in advance how to allocate resources in a public-health emergency. Absent such planning, decisions would have to be made by individual doctors at their patients’ bedside. Doctors would in effect become gatekeepers for life-support technology; however, this role fits uneasily with the principles they imbibed at medical school. “Every life is valuable. Every patient is entitled to appropriate treatment.”
Instead of asking, “Would my patient benefit from admission to the ICU?” the doctor would be required to ask, “Which of my eligible patients will be most likely to benefit? Or which will benefit most?” For doctors to make this kind of life-and-death choice among their eligible patients seems inconsistent with the fundamental principle of the Hippocratic Oath: The life and health of my patient will be my first consideration.
In situations where some patients will likely benefit greatly from an ICU bed, while others will benefit only marginally, traditional physician ethics come under pressure. “First come, first served” doesn’t seem like an ethically defensible moral rule when the patient who came first is unlikely to survive long while the patient who came second has a more favourable prognosis.
Nor does the “first come” principle help when a decision has to be made concerning the withdrawal of life support once it has begun. For these reasons, giving doctors sole discretionary power to withhold or withdraw life support would impose on them a heavy moral and emotional burden. Equally or more important, it would lead to arbitrary and unfair differences in the way patients are treated.
Thus, a consensus has developed. In times of runaway pandemic, every province should have in place a triage plan for the distribution of scarce health care resources. But who should be responsible for establishing the provincial plan? The government of Ontario quietly established an advisory “bioethics table” to recommend guidelines. Unfortunately, the composition of this expert panel is secret, as are its detailed recommendations. The alternatives considered by the panel and its reasoning are also concealed. Media questioning of the government has elicited a promise that there will be future consultations with “stakeholder groups.” The general public is apparently to have no input in the decisionmaking process.
Understandably, all this secrecy has generated public suspicion. People are wondering what is being covered up, or if the plan discriminates against the elderly, people with disabilities or racialized groups. It’s critically important that governments be held accountable. This means that even those who trust in the bona fides of the government should insist that, in a liberal democracy, the public has the right to be fully informed, hear expert discussions and weigh in with its own views.
Sadly, the Ontario government is not alone in its persistent refusal to recognize that secrecy promotes cynicism and distrust. Governments everywhere could learn a lesson from the “death panel” myth about Barack Obama’s Medicare plan. There was nothing in Mr. Obama’s legislation that would have led to individuals being judged as “unworthy of health care,” but millions of Americans were nevertheless misled. Similar myths about the Ford government’s intentions are already circulating.
Openness and transparency promote trust. When exposed to critical scrutiny by an informed public, the Ontario triage plan may come to be seen as reasonable and fair; but continued secrecy will inevitably feed suspicion that the government is concealing something nefarious.
In a time of pandemic, trust is the most precious resource possessed by public-health officials. Once lost, it can be difficult or impossible to regain.