Accessibility for Ontarians with Disabilities Act Alliance Update
United for a Barrier-Free Society for All People with Disabilities
CBC Program Reveals Disturbing Fact that, Far From Objective Scientific Decisions, Ontario Critical Care Triage Could Involve Doctors Guesstimating and Improvising When Deciding Which Patients Should be Refused Life-Saving Critical Medical Care They Need – And Other News on The Triage Issue
January 25, 2021
The controversy keeps swirling around the Doug Ford Government’s secretive handling of the life-and-death question of who will be refused life-saving critical medical care if those services must be triaged or rationed, and the danger of disability discrimination, because the Government did not ensure sufficient hospital services for all who need them. Here are the three newest developments on this front.
- The Friday, January 22, 2021 edition of CBC Radio’s health program, “White Coat Black Art” was devoted to the topic of how decisions will be made over who lives and who dies if the COVID-19 pandemic leads hospitals to have to ration or triage life-saving critical medical care. In his introduction, typically written after interviews were recorded, Dr. Goldman described how hospital case loads are growing, and stated:
“Last week, hospitals in Ontario were given ICU (i.e. Intensive Care Unit) triage protocols from the Ministry of Health. A similar document was given to hospitals in Quebec earlier this month. These documents, which are backed by science, tell doctors how likely patients are to live or die, if they are admitted to the ICU.”
Yet there is ample room from our own investigations and from Dr. Goldman’s interview that followed to question how much the Ontario triage protocol is “backed by science”, as opposed to a dangerous mirage of science that disguises the palpable danger of disability discrimination. Far from objective science, this program shows that triage decisions over who lives and who dies can be potentially expected to include doctors guestimating and improvising. Doctors and medicine do not have provably objective and reliable tools for predicting whether a critical care patient is likely to live beyond the next year.
This is proven by Dr. Goldman’s first guest on his program, Dr. Michael Warner, the Medical Director of Critical Care at Toronto’s Michael Garron Hospital. Describing how the January 13, 2021 triage protocol would work, he 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. Goldman asked Dr. Warner how confident he is that emergency doctors can use these new rules accurate 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..”
It is very good that this program addressed this topic. However, this program’s content was utterly lacking in desperately-needed and fundamental journalistic balance. The program’s host, Dr. Brian Goldman, only interviewed doctors, but no one from the disability community who have been raising serious concerns about disability discrimination.
That flew in the face of the program’s weekly opening line, which proclaims “Welcome to White Coat Black Art, the show about medicine from all sides of the gurney.” Contrary to its stated prime directive, this edition of that program took a selective look at this important issue from only one side of the gurney, that of the doctors. We have been reaching out to Dr. Goldman for months to cover the disability discrimination concerns with Ontario’s critical care triage protocol. The need for such was even flagged for the program by one of its two guests, Dr. Warner. In the only brief reference to disability perspectives on this entire program, Dr. Warner commendably stated on his own initiative:
“…I think that disability and other advocates should definitely educate us on how this policy may not meet the needs of all patients so that it could be fair and equitable…”
CBC knows well about disability community advocacy on the triage issue. This is even more troubling given the difficulty we and the disability community have had for months in getting the media to cover this issue, which has been looming throughout the pandemic.
- Today, Ontario’s New Democratic Party commendably made public a letter sent by NDP Leader Andrea Horwath and NDP Disabilities Critic Joel Harden to Ontario Health Minister Christine Elliott. Set out below, that letter asks the Government to answer vital questions on this life-and-death issue which the Government has not answered to date. We thank the NDP for publicly asking these questions, and for endorsing the concerns on this issue that the AODA Alliance has been raising from the perspective of people with disabilities. We urge the Ford Government to end its protracted secrecy on this topic, and provide full and prompt answers.
- The January 23, 2021 edition of the National Post included an extensive article on this issue, also below. It quoted AODA Alliance Chair David Lepofsky on some of our many concerns with the Government’s January 13, 2021 triage protocol.
We spelled those concerns out in the AODA Alliance’s January 18, 2021 letter to Health Minister Christine Elliott within days of receiving a leaked copy of that previously secret critical care triage protocol.
There have now been 725 days, or over 23 months, since the Ford Government received the ground-breaking 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 report. That makes still worse the serious problems facing Ontarians with disabilities during the COVID-19 crisis, that we have been trying to address over the past eleven months.
For more background on this issue, check out:
- The new January 13, 2021 triage protocol which the AODA Alliance received, is now making public, and has asked the Ford Government to verify. We have only acquired this in PDF format, which lacks proper accessibility. We gather some others in the community now have this document as well.
- The AODA Alliance’s January 18, 2021 news release on the January 13, 2021 triage protocol.
- The panel on critical care triage, including AODA Alliance Chair David Lepofsky, on the January 13, 2021 edition of TVO’s The Agenda with Steve Paikin.
- The Government’s earlier external advisory Bioethics Table’s September 11, 2020 draft critical care triage protocol, finally revealed last month.
- The AODA Alliance website’s health care web 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.
January 22, 2021 Letter to Ontario Health Minister from Ontario New Democratic Party
Ministry of Health
777 Bay St.
Toronto, ON M7A 2J3
January 22, 2021
Dear Minister Elliott,
We are writing to you regarding the critical care triage protocol for Ontario hospitals in case of a major COVID-19 surge. With the latest modelling showing that ICUs may be full by early February, the prospect that doctors will have to make life and death decisions about who receives critical care and who doesn’t is not just hypothetical, it could become a reality.
On January 18, we obtained and made public a document dated January 13 written by the COVID-19 Critical Care Command Centre and issued to hospitals. It provides guidance on how hospitals should triage ICU patients in the awful event that emergency rooms are overwhelmed by COVID cases.
Disability rights organizations, including the AODA Alliance, have raised important concerns with the document. Firstly, that it was drafted in secret without the government consulting directly with disability organizations. Second, that it opens the door to discrimination on the basis of disability in the allocation of life-saving care. Finally, it does not offer patients a right of appeal outside the healthcare system, either to an independent tribunal or a court.
Instead of addressing these substantive concerns, we were puzzled by a Ministry of Health spokesperson distancing your government from the document altogether. The Ministry maintains that it is not a triage protocol, despite the fact that it lays out how hospitals should triage critical care patients. Your spokesperson also claimed that the document was “not approved or endorsed by the Ministry of Health”, even though it was authored by the Critical Care Command Centre your government created.
To this end, we would like you to answer the following questions: Your government says it has not approved the January 13 triage protocol, but it is in doctors’ hands right now. Will you rein in any bodies claiming to instruct hospitals on triage, and revoke the January 13 protocol?
The National Post has reported that the government’s Bioethics Table recommended temporarily suspending the law which requires patient or family consent before life-sustaining treatment is withdrawn from a critical care patient. Is your government considering this and if so, will you immediately publicize any regulations or legislation under consideration for public discussion about this life and death matter?
The Premier promised “complete transparency” at the start of this pandemic but Minster, your government’s approach to clinical triage has been anything but transparent. The public has a right to know what hospitals are being told to do in the event of a major COVID surge, who is telling them to do so, and to be consulted so that any protocol respects the human rights of all Ontarians, particularly those with disabilities.
We look forward to your response.
Andrea Horwath Joel Harden
Leader of the Official Opposition MPP, Ottawa Centre
National Post January 23, 2021
A plan of last resort: Choosing who lives and dies if ICUs are overrun; Random selection
Graphic: Nathan Denette, The Canadian Press / If hospitals become overwhelmed, doctors will be asked to make impossible decisions that in normal times would be anathema to their training.
It’s not quite drawing names from a hat.
But if COVID-19 pushes hospitals to crisis levels, Ontario hospitals have been instructed that, when faced with tiebreaking situations – one empty bed in the ICU, and two, four or more critically sick people with more or less equal chances of surviving competing for it – random selection should be applied.
Each person would be assigned a number. The administrator on call would enter the numbers in a random number generator like random.org, and then click the “generate” button.
“Randomization is efficient when decisions need to be made rapidly,” reads a critical care rationing plan prepared for Ontario hospitals designed to help doctors decide who should get access to beds, intensive care or ventilators in the event of a catastrophic COVID-19 surge. Randomization avoids power struggles between doctors, the document continues. It eliminates explicit or unconscious bias and, critically, reduces the moral and psychological burden of deciding whom, ultimately, wins the bed. Who gets a chance at living.
It may sound dystopian and dehumanized. But far worse than a random number generator would be a human being having to choose, said Dr. Judy Illes, a professor of neurology at the University of British Columbia. “Because the people who have to administer those decisions are hugely at risk for moral distress and trauma.”
Doctors in Canada have never faced critical care rationing. There is no historical precedent. If hospitals become overwhelmed, doctors will be asked to make impossible decisions that in normal times would be anathema to their training.
And while thousands of people aren’t getting the timely care they need – knee surgeries, hip replacements, the start of new experimental drug regimes, because of backlogs when hospitals shut down to all but urgent care – most people in Canada have never had to worry about getting rationed for life-saving care.
Critical care triage protocols, like those now being distributed to Ontario and Quebec hospitals, are formed from lessons learned in battle fields and natural disasters. “But it will be no less heart-wrenching in this situation, and maybe even more so,” because the decisions will be taken in urban hospitals, Illes said, not in fields with grenades going off.
“It’s not a question of will the public cooperate? The public will have no choice,” said Illes, who warns that our autonomy will be eroded if we don’t take better control of the situation.
Nothing is fair about COVID-19, Illes and UBC political science professor Max Cameron wrote in April, and now, nine months out, aggressive mutations are spreading. Hospitalizations and deaths are increasing. An average of 878 people were being treated in ICUs each day during the past seven days. Healthcare workers are frightened, anxious, exhausted. Social distancing is slipping, Peter Loewen reported this week in Public Policy Forum; and most Canadians won’t be vaccinated until the end of September. Ten months into the pandemic, “and there are 10 months to go,” wrote Loewen, a political science professor at the University of Toronto. “This is halftime.”
Meanwhile, Ontario surpassed 250,000 confirmed infections, Quebec a breath away from the same grim mark, and while Quebec’s health ministry told the National Post Friday the province is still a long way from triggering its ICU prioritization protocol, doctors are nervously looking at the U.K, where a new variant is turning some hospitals into “war zones.”
“We want to avoid being patients,” Illes said. “We want to exercise our autonomy to help everyone get through this viral war that we’re in and that we’re not winning right now.”
If people don’t double down on distancing and masking and other precautions, choice will no longer be relevant, she said. “Procedures will take over; protocols will supersede choice. And the focus will be on this public-centred approach, maximizing the most good for the most number of people.”
The Ontario ICU triage protocol, used as a model for triage protocols adopted in Quebec, prioritizes those with the greatest likelihood of survival. (It applies to adults only, not children). People who have a high likelihood of dying within 12 months of the onset of their critical illness would be assigned lower priority for critical care. Doctors would score each person on a “short-term mortality risk assessment,” and across a whole range of different conditions – cancer, heart failure, organ failure, trauma, stroke or severe COVID-19 – ideally before they are intubated, connected to a ventilator. It aims to reduce “preventable deaths to the degree possible” under major surge conditions, with the “least infringement of human rights.” Consultant doctors would be available 24/7 to provide a timely (within the hour) estimate of a person’s survival, “recognizing that such estimates may not be perfect,” but likely more accurate than non-expert judgment. In the final “summary and care plan,” one of two boxes would be checked: the patient will, or will not be offered critical care. Those who don’t meet “prioritization criteria” won’t be abandoned. They’ll receive appropriate medical therapy and/or comfort care.
Most controversially is what is not included in the current plan – a recommendation before the Ontario government that life-support be withdrawn from people already in the ICU whose chances of survival are low, if someone with better prospects is waiting behind them.
The Post reported this week that Ontario Premier Doug Ford’s government is being asked by its external advisory COVID-19 Bioethics Table to pass an “executive order” that would permit doctors, without the consent of patients or families, to remove breathing tubes, switch off ventilators and withdraw other life-saving care from people who are deteriorating, and where further treatment seems futile, so that someone who otherwise might live can take their place.
Withdrawing treatment from someone who hasn’t consented to it could be argued to be culpable homicide, said disability rights advocate David Lepofsky. “There are huge legal questions here, and they need to be discussed in the open, because we’re talking about possibly taking an active action that could accelerate someone’s death,” he said.
“The government can’t decide on who lives and who dies by a memo, written in secret, with no debate in the legislature.”
Under normal conditions, withdrawing treatment without consent would be an “illegitimate choice,” Annette Dufner, of the University of Bonn, wrote in the journal Bioethics. Even in a pandemic, doctors might risk legal charges.
“At the same time, it is by no mean obvious that patients already under treatment in a setting of scarcity have the same moral claim on the respective medical resources they would normally have,” Dufner wrote. When scarce, “the use of resources can, after all, come at the cost of other patients’ lives.”
Any suspension of the consent act would be temporary, said Dr. James Downar, a member of Ontario’s Bioethics Table “And, to be super clear: if there are enough resources for everybody, this never happens.”
Outside the horror of having to choose, even the practicalities of deciding who gets an ICU bed and who should be “discharged” – the dispassionate euphemism for stopping intensive care – “these kinds of equitable, distributive justice kinds of decisions are very, very complicated,” said Dr. Peter Goldberg, head of critical care at Montreal’s McGill University Health Centre.
And how will patients, and families, be told that, “by virtue of this decree” you will, or will not, receive life-saving care? “I don’t know how it’s going to be done,” Goldberg said. “No one has ever done this.”
“Families will presumably have heard about this, from the press. But they may not. They may think this is science fiction. They may go to the courts, and I don’t know what the courts are even going to say in this case.”
Goldberg has never had to take community needs, values or resources into consideration when caring for the critically ill. “Never. Zero. When I have discussions with patients and families, my perspective is always deontological,” what’s best for the person lying in that hospital bed. That “duty to the patient” is now being supplanted by a utilitarian view that says we need to rescue the most lives, he said.
“I understand it, intellectually. But from a physician point of view that I was taught all these years, and from my own personal perspective, it’s just anathema.”
He takes comfort that admissions to his hospitals are coming down. He’s hoping it’s a trend. “The kids went back to school in Quebec yesterday, the high schoolers. The epidemiologists are telling us we may see a blip in 10 days or two weeks if schools really are a reservoir.”
“We’re waiting. We’re not putting our cards away. But we can’t get far enough away from this.”
Triage protocols, medically-guided protocols that are blind to disability, socio-economic status, cultural origin, are the only way to manage and mitigate the moral distress facing the people who will have to enact them, Illes said. “At the end of the day, it is physicians on the front line in the ICU with blood flowing on the floor who will bear the burden of decision-making.”
“How do we protect families from moral distress? I don’t know. No protocol is going to help anyone to understand that the people who cared for their loved person weren’t able to take the last-mile possible saving procedure,” she said.
“Let’s try to avoid ever going there.”