AODA Alliance
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/
One Year After the First Secret Ontario Critical Care Triage Protocol Was Sent to Ontario Hospitals, the Threat of Critical Care Discrimination Against Some Patients with Disabilities Remains A Live Worry
March 29, 2021
SUMMARY
It was one year ago yesterday that the Ford Government secretly sent Ontario hospitals a deeply-flawed critical care triage protocol, directing how hospitals should decide who will be refused life-saving critical care if hospitals get overloaded by the COVID-19pandemic. It was one year ago next week that the disability community learned of this, and made public the fact that the Government’s critical care triage protocol discriminates against some patients with disabilities.
Where are we one year later? The COVID-19 pandemic is still upon us. Despite the good news of COVID-19 vaccines, waves of new infections continue to push Ontario’s hospitals to the limit. The risk of Ontario having to ration critical care remains a real one.
As well, one year later, the Ford Government wrongly continues to deal with this issue in secret, and without itself consulting the public or making public what it is doing. It continues to deny responsibility in this area, sloughing it off on the medical profession. It continues to sit back while an updated critical care triage protocol is in place, that would continue to discriminate against some patients with disabilities.
Oddly, the health care web page of the AODA Alliance website continues to be the best, if not the only place to go to find public copies of important documents in this area, such as Ontario’s January 13, 2021 Critical Care Triage Protocol, and the September 11, 2020 report of the Government’s Bioethics Table. News reporters continue to tell us that they cannot get straight answers, and at times, cannot get any answers at all, from the Ford Government on this critical care triage issue.
Even though too many news outlets have failed to give this issue the attention it deserves, there have been a few recent and important news reports. Below, we set out:
* The March 29, 29, 2021 Globe and Mail report on the critical care triage issue;
* The February 7, 2021 Globe and Mail report on the critical care triage issue; and
* The February 8, 2021 Lawyer’s Daily report on broader health care barriers facing people with disabilities during COVID-19, which situates the critical care triage discrimination against some patients with disabilities into that broader issue.
We offer four reflections on those reports:
- The cruel irony has not been lost on many people with disabilities that at the same time as people with disabilities must battle against the life-threatening dangers facing them if Ontario undertakes critical care triage, disability advocates have also been campaigning against Bill C-7, controversial new federal legislation that substantially liberalizes medical assistance in dying. There has been this increased governmental focus on ending the lives of people with disabilities, without comparable governmental efforts to improve the opportunities for living with a disability.
- As the Government itself hides, Dr. James Downar continues in effect to play the role of the Government’s chief defender on this critical care triage issue. He appears indistinguishable from a cabinet minister’s spokesperson. He has been credited with being an author, if not the key author, of the January 13, 2021 Critical Care Triage Protocol which embodies seriously harmful disability discrimination. As a member of the Government’s advisory Bioethics Table, he was a key player during a series of virtual meetings last summer, where the AODA Alliance and certain other disability advocates and experts voiced concerns in this area.
Dr. Downar’s statements in the Government’s defence in the March 29, 2021 article below constitute a seriously erroneous rejection of key points of input we presented to him and his Bioethics Table colleagues on these disability issues. That article states:
“He said using a scoring system, such as the clinical frailty scale, to evaluate patients is meant to limit the scope of a doctor’s subjective judgements or bias, in order to try to ensure everyone is treated equally. The protocol, he said, is focused on a patient’s risk of mortality at 12 months, not whether they have a disability.”
Whether or not the critical care triage protocol was intended as he stated, we and other disability advocates have shown that the protocol has the clear effect of discriminating because of disability. It is the effect of the protocol and not its intent that determines whether it is a violation of the Charter of Rights and/or the Ontario Human Rights Code. Dr. Downar’s defence provides no defence.
- Both Globe and Mail articles report on advocacy by some doctors to be given the power to pull the plug on critical care patients over their objection, taking away critical care they are already receiving, and thereby endangering their life. No one has answered our objection that Ontario cannot authorize this without the doctor running up against Canada’s Criminal Code homicide provisions. This piles onto vulnerable people with disabilities yet another danger to their lives, during a pandemic where they have disproportionately been at risk of getting COVID-19and dying from it.
- The Globe and Mail’s February 7, 2021 article quotes a bioethicist in defence of the January 13, 2021 Critical Care Triage Protocol, who claims it is designed to protect human rights. The title “bioethicist” implies great expertise in this area. However, there is cause for concern.
There is no public regulation of who can call themselves a bioethicist. There appears to be no self-governing body for bioethicists, and no code of ethics for bioethicists. We have learned through the critical care triage issue that a person does not need to have any training in law or human rights, to call themselves a bioethicist. Indeed, some make statements on basic constitutional and human rights that reflect a demonstrable lack of knowledge in these important areas.
For more background in this area, check out the AODA Alliance’s health care web page. Also, check out the AODA Alliance’s February 25, 2021 report entitled: “A Deeply Troubling Issue of Life and Death — An Independent Report on Ontario’s Seriously-Flawed Plans for Rationing or “Triage” of Critical Medical Care If COVID-19 Overwhelms Ontario Hospitals”.
MORE DETAILS
Globe and Mail March 29, 2021
Originally posted at https://www.theglobeandmail.com/canada/article-ontario-covid-19-surge-could-force-doctors-to-use-online-calculator-to/
Ontario’s COVID-19 triage plan includes online care calculator
By JEFF GRAY
Staff
If COVID-19’s surging third wave overwhelms Ontario’s hospitals, doctors could soon be forced to use an emergency triage protocol that includes an online calculator to help decide who gets lifesaving care and who does not.
The website, which prompts physicians to key in a critical patient’s diagnosis in order to estimate their chances of survival, is part of an emergency procedure drafted to help doctors make what would normally be unthinkable decisions. The protocol has been distributed to hospitals. But it has never officially been made public.
The province has loosened some pandemic restrictions in recent weeks, even as daily new infections still shoot upward, with more than 2,448 recorded on Sunday and 19 deaths. Ontario counted 390 COVID-19 patients in its intensive-care units, not far from the peak of 420 hit in the second wave of the virus in January.
While the provincial government says it has added hospital capacity, the Ontario Hospital Association warned last Friday that the province’s critical-care system was reaching its “saturation point” and that soon “hospitals will be under extraordinary pressure to try and ensure equitable access to lifesaving critical care.”
To deal with the onslaught, ICUs have been transferring critical patients from packed facilities to those elsewhere that still have space. Patients are being shipped via ambulance helicopter from Toronto to as far away as Kingston. Field hospitals have also sprung up around several health care facilities, including Toronto’s Sunnybrook Health Sciences Centre.
But more than a year into a pandemic that put hospitals in New York and Italy over the brink, the Ontario government has kept almost all planning for such a worst-case scenario out of the public eye.
By contrast, Quebec held open consultations on its emergency triage protocol months ago.
Meanwhile, the Ontario Human Rights Commission and disability rights groups have raised objections for months, warning that leaked drafts of Ontario’s protocol discriminate unfairly against older and disabled people.
Both a January version of the protocol, developed by the group that co-ordinates critical care across the province, and the online calculation tool have only come to light after being obtained by the Accessibility for Ontarians with Disabilities Act Alliance, a disability rights group.
The AODAA has also obtained a “framework document,” prepared by the government’s bioethics table, a committee of experts that has been wrestling with the triage issue for the past year.
The province’s Ministry of Health has said only that the triage protocol, known as an “emergency standard of care,” was drafted by the medical profession and not approved by the ministry.
The notion of an online triage aide may sound strange, but nothing about hospitals swamped by COVID-19 would be normal. The “short-term mortality risk” calculator would allow physicians to type data on the severity of a patient’s conditions – cancer, trauma, stroke and so on – to help come up with an estimated chance of survival after 12 months. Those with a higher chance of survival would be given priority for ICU spots. Decisions would be made by two doctors, not one alone.
David Lepofsky, a lawyer and chairman of the AODAA, said it’s the wrong approach.
“It creates the false impression that this can be an objective [task]. Just type in the data, press the button, the computer will tell you who lives and who dies,” Mr. Lepofsky said in an interview.
He takes issue with the protocol’s reliance on a metric for use on those over 65 known as the clinical frailty scale, which measures a patient’s ability to perform various everyday tasks.
That, he argues, devalues the lives of disabled people.
James Downar, a specialist in critical care at The Ottawa Hospital and a drafter of the triage plan who sits on the province’s bioethics table, said the online calculator is no different than the paper version that doctors can also use under the protocol.
He said using a scoring system, such as the clinical frailty scale, to evaluate patients is meant to limit the scope of a doctor’s subjective judgements or bias, in order to try to ensure everyone is treated equally. The protocol, he said, is focused on a patient’s risk of mortality at 12 months, not whether they have a disability.
“None of us want to be in a triage scenario,” Dr. Downar said.
“The purpose of a triage system is to reduce the number of preventable deaths and reduce the number of people who are denied critical care.”
Dr. Downar said he believed it would be best to make the triage plans public.
A spokeswoman for Ontario Health Minister Christine Elliott referred questions about the protocol to Jennifer Gibson, the cochair of the government’s bioethics table and director of the University of Toronto Joint Centre for Bioethics.
Dr. Gibson said the bioethics table has been in discussions with the Ontario Human Rights Commission on addressing its concerns with the triage protocol.
She also said the table has previously recommended an open public consultation on the triage issue – but that the government had so far not acted on this idea.
“We provide advice. And that advice may be taken or it may not be taken,” Dr. Gibson said.
Even with ICUs at a tipping point, Dr. Gibson said she didn’t think it was too late to start a more open discussion of the issues at stake, to build public trust.
Earlier this month, the chief commissioner of Ontario’s Human Rights Commission, Ena Chadha, wrote to Ms. Elliott to reiterate concerns about the protocol, the potential for discrimination against the disabled and a lack of consultation and transparency around it. Ms. Chadha and other groups have been at odds with the government over the issue since last March.
“We have to develop a framework that is equitable, with human-rights considerations being paramount. Which means it can’t be built on ageist or ableist notions, or assumptions about quality of life,” she said. “This is the problem.”
Michael Warner, the head of critical care at Michael Garron Hospital in Toronto’s east end, said ICU doctors have been familiarized with the emergency triage protocol – even though the government says it remains unapproved – and that committees at hospitals across the province to oversee it have been set up. He held up a paper triage form in a Twitter video on Friday, urging Premier Doug Ford to tighten public-health measures.
He also criticized the government for so far declining to say it would, if needed, issue an order to override Ontario’s health care legislation and allow for the withdrawal of lifesaving care from patients already in the ICU who are unlikely to survive. Under the plan as it stands now, only new patients would face ICU triage.
It’s unclear, Dr. Warner warned, how the plans would roll out in what would be an unprecedented crisis.
“This could be battlefield medicine,” he said. “We may end up having to improvise.”
The Globe and Mail February 7, 2021
Originally posted at https://www.theglobeandmail.com/canada/article-ontarios-life-and-death-emergency-triage-protocol-remains-a-work-in/
News
Ontario’s life-and-death triage protocol still in progress
By JEFF GRAY
Staff
If a third wave of COVID-19 overwhelms Ontario hospitals, and intensive care units run out of beds, the province’s doctors could be forced to make previously unthinkable decisions about who gets access to life-saving treatment. Precisely how they would do that remains largely under wraps even as concern mounts about the spread of more contagious new variants of the virus.
Ontario has cancelled procedures, added beds and helicoptered patients from hotspots to less-crowded hospitals to avoid the worst. But its contingency planning for how doctors would cope with an uncontainable COVID-19 surge has occurred largely behind closed doors. That has raised alarms with disability rights activists and the Ontario Human Rights Commission, who warn hospital triage protocols must guard against discrimination.
Meanwhile, some doctors say a draft “emergency standard of care” distributed to hospitals last month – but not publicly released – does not go far enough.
They say it lacks a grim but necessary provision: The power to unplug patients who are unlikely to survive from life support without consent to make room for those with a better chance.
Not allowing this kind of triage, some doctors argue, could create a kind of first-come, firstserved system, in which patients who might have lived are denied access to scarce ICU beds because others who have little hope already occupy them. More people, they say, would end up dying.
The problem is a legal one. In Ontario, removing life support without the consent of the patient or their next of kin or designated decision maker has been barred since the Supreme Court of Canada decision ruled in 2013 that the province’s Health Care Consent Act applies to both providing and withdrawing care.
The decision did not affect other provinces.
Quebec’s triage protocol, which has been made public, would allow doctors to apply a set of criteria to remove patients from life support without consent if needed. Other jurisdictions, including New York, have had to invoke triage protocols, formal or informal, to deal with tidal waves of COVID-19 cases.
Ontario’s COVID-19 bioethics table, made up of critical-care doctors and academics, recommended in a September “framework” document that the government issue an emergency order “related to any aspect [of the triage plans] requiring a deviation from the Health Care Consent Act.” It also called for an order to provide liability protection for doctors. The document laid out the principles for triaging patients in a COVID-19 surge.
In response to inquiries from The Globe and Mail, Ontario’s Ministry of Health said in a statement that an emergency order, which would need cabinet approval, “is not currently being considered.” It also said it had not yet officially approved any triage protocol and that the bioethics table would continue to discuss the proposals with “stakeholder groups.”
The draft emergency standard of care distributed to hospitals would classify new patients needing life support based on how likely they are to survive for 12 months. But those already inside the ICU, no matter how small their chance of recovery, would stay put.
Michael Warner, the head of critical care at Michael Garron Hospital in Toronto’s east end, said the government has to issue an emergency order to fix an unfair triage plan that would leave more people dead. But he said he realizes politicians would rather not confront the issue before it is necessary: “I understand that this is a nuclear football for any government.”
Last month, with more than 400 COVID-19 patients in ICUs across the province, hospitals raised frantic alarms. But with the recent slowdown in infections, numbers have declined.
On Friday, the province said it had 325 patients in its ICUs with the virus.
Critics say Ontario is wrong to keep the life-and-death deliberations quiet. Disability rights activists obtained leaked copies of the framework and the proposed standard of care and posted them online. Neither of the cochairs of the bioethics table responded to requests for comment for this article.
“That’s just the way Doug Ford likes to do things, behind closed doors, and in secret,” Opposition NDP Leader Andrea Horwath said. “But on something like this, literally life-and-death decisions … there’s just no excuse to not make these kinds of policy decisions the result of massive engagement with Ontarians.”
Disability rights activists say the current proposal would discriminate against the disabled.
Some hold that doctors should never remove a patient from life support without consent.
“That is a point that we shouldn’t have to get to,” said Mariam Shanouda, a lawyer with the ARCH Disability Law Centre, who argues the government must do more to ensure such drastic measures are never needed.
David Lepofsky, a lawyer and chairman of the Accessibility for Ontarians with Disabilities Act Alliance, said the triage protocol lacks an arm’s-length process to appeal decisions, which doctors say is not compatible with acting quickly in a crisis. He also questions the government’s legal authority to issue an emergency order that would allow doctors to remove a patient from life support without consent.
“Any doctor that would consider doing this, I hope they’ve got a lawyer,” Mr. Lepofsky said.
Andrea Frolic, an ethicist and the director of the medical assistance in dying program at Hamilton Health Sciences, who served on the bioethics table until last September, said no protocol is perfect, but the current draft includes safeguards and is designed to protect human rights.
It focuses on the individual patient’s risk of dying, she said, not any disability.
Dr. Frolic said the government needs to assure ICU doctors that the protocol and an emergency order are in place long before infections begin to spike again, so that doctors – and the public – are prepared: “That’s not necessarily something that can turn on overnight.”
The Lawyer’s Daily February 8, 2021
Originally posted at https://www.thelawyersdaily.ca/articles/24331/research-project-seeks-to-understand-covid-19-justice-barriers-for-people-who-live-with-disabilities
Research project seeks to understand COVID-19 justice barriers for people who live with disabilities
Researchers at a western Canada university have embarked on studies into how measures to combat COVID-19 have impacted access to justice for Ontarians with disabilities living in care centres and people with mental disorders in British Columbia’s prisons and psychiatric facilities.
Thompson Rivers University (TRU) law professor Dr. Ruby Dhand is one of the researchers who in January launched the two projects. Each is being run in collaboration with various legal and advocacy groups. The goal, to use legal and scientific research to promote legislative change.
The Ontario project, Dhand told The Lawyer’s Daily, will also involve a TRU science professor and a law professor from the University of Windsor and will be run in collaboration with the Toronto-based ARCH Disability Law Centre (ARCH).
According to a description on a TRU webpage, the project will examine “COVID-19 barriers to justice for those who live with disabilities in these congregate care settings,” such as long-term care homes, group homes and assisted living facilities.
Dhand said restrictions put in place to combat the health crisis have resulted in a lack of care, community supports and “communication devices,” as well as fallout from visitor bans and reductions in standard services.
“We’ve recognized that people with disabilities, as this pandemic has evolved, who are living in congregate care settings … have really been disproportionately impacted,” said Dhand. “It’s become clear that over 80 per cent of these COVID-19 related deaths have occurred in these long-term care facilities. … They are experiencing complex forms of discrimination.
“[The] purpose of this research to highlight those voices, because this will be a quotative, multidisciplinary research project. … We recognize that, throughout this pandemic, the voices of people with disabilities have really be silenced, and it doesn’t seem like they’ve been prioritized.”
Dhand also talked about the controversial emergency “triage” protocol put together by the province, which would reportedly allow doctors in intensive care units to decide who gets a bed and who doesn’t in the event hospitals become overwhelmed by the health crisis.
“A clear access to justice issue has also been Ontario’s triage protocols,” Dhand said. “As a result of the triage protocols, a person with a disability will be deprioritized. The protocols state that they will be deprioritized for a ventilator [if their] future quality of life is determined to be poor because of their disability. So, disability advocates have raised concerns about the discriminatory impact of the triage protocols on people with disability in congregate care settings. … Access to health care is an access to justice issue.”
In January, ARCH issued a statement about possible temporary suspensions to Ontario health-care legislation that “would effectively permit doctors to withdraw treatment from a patient without the consent of the patient or family” if hospitals end up having “more patients than resources.” This would accompany the province’s triage protocol, ARCH goes on to state.
The Accessibility for Ontarians With Disabilities Act Alliance recently said that such a thing would be like “recklessly tap-dancing in a constitutional minefield.”
Dhand hopes the research she and the others conduct will help prompt legislative change.
“This proposed partnership comes at a critical moment in ARCH’s advocacy efforts, and we want to be able to help; we want to be able to have this research create disability-informed responses to the pandemic and post-pandemic planning.”
Turning to the second research project, Dhand says this B.C.-based initiative is examining COVID-19 transmission risks and barriers to justice for those being detained in the province’s mental health facilities, prisons and detention centres.
It is in collaboration with a number of community organizations, including the West Coast Justice Society and the Elizabeth Fry Society.
“People with mental health and substance use issues who are in mental health facilities and prisons and detention centres have an increased potential of death,” said Dhand. “They experience much higher likelihood of getting COVID-19 because these are congregate care facilities, where people live in crowded and confined spaces with high transmission risk. And there is also a lack of resources [and] a lack of [personal protective equipment]. And people with mental health and substance use issues have already pre-existing health issues and vulnerabilities.”
Dhand said they can also “experience consent and capacity issues” and, in some cases, “may not even understand what the public health measures mean.”
She also cites “a lack of community-based care and diversion options” and an increase in the use of solitary confinement and lockdowns since the start of the pandemic.
Both projects will run for up to two years, Dhand said.