Ontario is Not Out of the Woods When It Comes to the Danger of Disability Discrimination in Critical Care Triage

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/

Ontario is Not Out of the Woods When It Comes to the Danger of Disability Discrimination in Critical Care Triage

May 19, 2021

            SUMMARY

It is very good that new daily COVID-19 infection rates are dropping and that more and more people are getting vaccinated. This makes it less likely that Ontario must resort to critical care triage in the immediate future.

However, disability discrimination in critical care triage remains a critical issue (pun intended). We have learned that things can take a turn for the worse very rapidly. With new COVID-19 variants, there is a risk of a later fourth surge. As well, emergency and ambulance crews may well be engaging in critical care triage right now, with no public accountability for it.

We know that behind closed doors, Ontario hospitals have been training their staffs to make critical care triage decisions. They are using the disability-discriminatory January 13, 2021 Critical Care Triage Protocol in that training. As such, disability discrimination is getting more and more embedded in our health care system, all publicly financed.

We will continue bringing these issues to the public’s and media’s attention. Here is the latest news on this issue.

 1. Urge Doctors, Nurses, Ambulance Crews and Hospital Administrators You Know to Watch the AODA Alliance’s Informative New Captioned Video on Disability Discrimination Problems with Ontario’s Critical care Triage Protocol

Do you know any doctors, nurses or others who work in hospital emergency rooms or intensive care units (ICUs)? Do you know any hospital administrators or people who work as part of ambulance crews?

Please encourage them all to watch the AODA Alliance’s new captioned video that explains the serious disability discrimination problems with Ontario’s critical care triage protocol. Those health care staff may have gotten some training on that protocol. We fear they are getting no training on the disability discrimination that permeates it.

We also recommend that you ask your family doctor to watch this video. If you end up in hospital, and if critical care triage is going on, you will want your doctor to help advocate for you in the face of the critical care triage protocol’s disability discrimination.

If you have not seen it, we invite you to also watch this video. This video is available for one and all at https://youtu.be/Ju8cyH7TbQo Hundreds have watched it in the two weeks since it was publicly posted. We’ve gotten very positive feedback about it. Please help us reach those on the front lines of Ontario’s health care system.. We believe that they won’t want to be engaging in any disability discrimination, and will wanted to be forewarned about it.

 2. Media Shines Much-Needed Spotlight on the Ford Government’s Relentless Secrecy over Its Critical Care Triage Plans

The Ford Government’s relentless secrecy still persists when it comes to its critical care triage protocol and plans. No doubt, senior Government officials think that the recent drop in new daily COVID infections and ICU occupancy means this whole issue may go away without them having to face public scrutiny for their disability discriminatory critical care triage plans. If so, we beg to differ.

Below we set out an excellent report in the May 6, 2021 edition of the online publication Press Progress. It reports on this protracted Government secrecy, and on criticism of it from the disability community and the Ontario Human Rights Commission.

This article reports on the fact that we and some others from the disability community have had a chance, months ago, to speak to the Ontario Government-appointed advisory Bioethics Table. We emphasize that that Table does not make any decisions in this area. It only gives advice. We don’t know what happens with that advice once the Bioethics Table gives it.

We don’t know what the Bioethics Table has advised the Government at any time after September 11, 2020. We don’t have any proof that the Bioethics Table ever reviewed and advised on the January 13, 2021 Critical Care Triage Protocol itself, or if it did, whether the Government accepted and implemented that advice. It is all shielded behind the Government-created fog of secrecy.

In this article, the argument is made that among other things, we need clarity on the Government’s critical care triage plans. We add that people with disabilities need much, much more than clarity about those plans. We have utter clarity that these plans are replete with disability discrimination. We need that disability discrimination removed.

In sharp contrast to Ontario’s paternalistic secrecy over its critical care triage protocol and plans, the media has reported that Alberta has made public its critical care triage protocol. We set out below an Edmonton Journal news report on this. We have not had an opportunity to review the Alberta critical care triage protocol and cannot comment on its contents.

 3. A Unique Chance to Read the Ford Government’s Talking Points For Defending Its Disability Discriminatory Critical Care Triage Protocol

The Ford Government’s strategy for several months has been to avoid saying anything about Ontario’s critical care triage protocol and plans wherever possible. When the media asks the Ford Government questions in this area, and if the Government responds at all, it typically deflects media questions to doctors. The doctor who seems to be very often the person to whom the Ford Government points, and who is in effect serving as the Government’s spokesperson, is Dr. James Downar. Dr. Downar has often been identified as the author or co-author of the January 13, 2021 Critical Care Triage Protocol. He is also a member of the Government-appointed advisory Bioethics Table.

Below we set out a statement which Dr. Downar has sent to a media outlet in response to a media inquiry. We offer these reflections on it:

  1. a) Dr. Downar’s response is similar to or the same as other quotations attributed to him that we have seen in other media reports. It reads like it is a set response.
  1. b) This statement reads like it could have been carefully written or vetted by someone within Ford Government. It has the flavour of a Government-drafted or Government-approved communications document.
  1. c) Dr. Downar’s statement is demonstrably inaccurate and misleading on important points. It is misleading where it talks about consultations being ongoing. We have repeatedly sought chances to get the Government to consult us on this issue. We have been very public about the fact that the Government has refused to do so.

This statement is also inaccurate and misleading where it seeks to claim that disability discrimination plays no part in the Ontario critical care triage protocol. Contrary to what this statement claims, the January 13, 2021 Critical Care Triage Protocol explicitly directs that a patient’s disability IS a factor that in some cases is to be weighed AGAINST their getting access to the life-saving critical care they need, if Ontario has more patients needing critical care than it has critical care beds and supports.

For example, if a cancer patient needs critical care, they will be deprioritized if a patient is “Completely disabled and cannot carry out any self-care; totally confined to bed or chair”. As another example, if a patient needing critical care is over 65 and has a progressive disease (like MS, arthritis or Parkinson’s), their access to critical care is reduced depending on how few of eleven activities of daily living they can perform without assistance. This includes dressing, bathing, eating, walking, getting in and out of bed, using the telephone, going shopping, preparing meals, doing housework, taking medication, or handling their finances. In both examples, this is disability discrimination, pure and simple.

This statement tries to defend Ontario’s critical care triage protocol by arguing that it does not make the Clinical Frailty Scale (which we have shown to be disability-discriminatory) because, among other things it does not apply that tool to assessing patients with a stable disability. As we have publicly emphasized, this is no defence. You cannot justify discriminating against some people with disabilities, e.g. those with progressive disabilities, by pleading that you don’t also discriminate against those with stable non-progressive disabilities. In the same way, you cannot defend discrimination against Muslims by pleading that you don’t also discriminate against Catholics.

It is deeply troubling that the Government’s defender keeps repeating these bogus arguments long after we have shown them to be so obviously incorrect. The Government has certainly not disavowed these statements that are made in its defence.

 4. The Call for the Ontario Government to Remove the Disability Discrimination from Its Critical Care Triage Protocol Has Come From the Trade Union Sector

Below we set out a recent public statement by the Canadian Union of Public Employees CUPE Ontario echoing our concerns about Ontario’s critical care triage protocol and plans. We welcome support from any and all parts of our society.

 5. Delay and Delay and Delay

There have now been 839 days, or over 2 and a third years, 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 effective plan of new action to implement that report. That makes even worse the serious problems facing Ontarians with disabilities during the COVID-19 crisis. The Ontario Government only has 1,323 days left until 2025, the deadline by which the Government must have led Ontario to become fully accessible to people with disabilities.

            MORE DETAILS

 Press Progress May 6, 2021

Originally posted at https://pressprogress.ca/disability-groups-say-ontario-government-did-not-consult-them-on-life-and-death-covid-19-triage-decisions/

Disability Groups Say Ontario Government Did Not Consult Them on Life and Death COVID-19 ‘Triage’ Decisions

Ontario Human Rights Commission Chief Commissioner says vulnerable groups deserve certainty on ’life and death triage decisions’

by PressProgress

May 6, 2021

Ontario Health Minister Christine Elliott promised to involve disability advocates in the drafting of possible “triage protocols” to decide who may be health denied care should hospitals be overwhelmed.

But the province’s major disability advocacy groups say they haven’t been consulted by the Ministry on the current drafts. They worry those drafts could be discriminatory and that they could be implemented on short notice.

According to The Globe and Mail, hospitals across Toronto were practicing triage protocols to reserve Intensive Care Unit (ICU) beds for those most likely to survive, through last week.

Draft triage protocols, which were sent to hospitals on January 13, have not been finalized according to Ontario’s Health Minister. But the drafts’ emphasis on testing patients’ abilities to live “without assistance” — to weigh whether care should be allocated — has many advocates for people with disabilities worried.

On April 21, Ontario Health Minister Christine Elliott told the legislative assembly:

“I asked that this issue be dealt with—with the people with disabilities groups as well as with the Ontario Human Rights Commission. There have been numerous discussions, but nothing has been activated yet, and I can assure you that nothing has been approved at this point.”

Lawyer and AODA alliance chair David Lepofsky says the January 13 draft protocols discriminate against certain disabled people by ranking patients based on their ability to conduct Instrumental Activities Of Daily Living.

“For a person with cancer they look explicitly at whether a person is disabled and can’t get out of bed or less,” Lepofsky told PressProgress. “If it’s a person over 65 with a progressive disease it asks if they can do 11 Activities of Daily Living — getting up, shopping, eating, using the phone, doing your finances — without assistance. If not, you rank lower.”

“That’s disability.”

Yet, Lepofsky said he hasn’t been able to discuss the organization’s concerns with the minister or ministry representatives. “The only consulting that’s gone on at all is a body external to the government called the Bioethics Table. Our consultations with them were last summer — ending August 31 — and then one meeting virtually on December 17. Many of us said we needed more time and needed to prepare.”

Since the draft was leaked, on January 13, Lepofsky said the group has received no further contact.

Ontario Human Rights Commission Chief Commissioner Ena Chadha told PressProgress the OHRC has been telling the government for over a year it needs to consult with concerned advocates for people with disabilities on any triage protocol. Chadha said that wasn’t done.

While an advisory body, the Bioethics Table, consulted some affected groups ahead of the January 13 drafts, since December 2020, Chadha said no other notable consultations appear to have followed. “Since then human rights experts, and vulnerable groups disproportionately impacted by the COVID-19 pandemic, including people with disabilities, older persons, Indigenous peoples and racialized communities, have not been consulted on these latest protocols.”

“They have a right to clarity and certainty on how life and death triage decisions would affect them. Health care practitioners who would be compelled to make these difficult decisions deserve the same clarity and certainty,” Chadha said.

“Human rights groups are concerned that, despite the Minister’s expressed comments, the reality on the ground will be that the Emergency Standard of Care document circulated to hospitals in January will be used anyway out of necessity.”

On April 28, the Ontario Medical Association hosted a panel featuring Peel Region Medical Officer Lawrence Loh and OMA head Samantha Hill titled Making Difficult Decisions During the Pandemic. Included on the agenda was “Who should be ventilated if resources are limited?”

A spokesperson for the OMA confirmed the discussion was “focusing on existing guidelines” as per the January 13 proposals from Critical Care Services.

“We were sent notice that the triage protocol could be initiated within days,” a doctor at Markham Stouffville hospital told PressProgress. “They’ve been talking about this for sometime. I can’t believe I and my colleagues will be asked to make life and death decisions for people.”

Further, an early May memo obtained by the Globe from Ontario’s “critical care command centre”signalled the health system had plans to utilize the existing drafts. The memo noted, cautiously, that recent increases in capacity may mean “we will not need to activate the Emergency Standard of Care or recommend the use of the triage protocol.”

Community Living CEO Chris Beesley said his organization has been frustrated by a lack of communication from Ontario’s Ministry of Health.

“Since last Spring, we’ve been working with a coalition of disability focused organizations, to try and get some transparency on the triage protocol,” Beesley told PressProgress.

However, Beesley said, “Neither Minister Elliott nor anyone from her staff had communicated with us since last July.”

Arch Disability Law Centre lawyer Mariam Shanouda also told PressProgress “We have never been consulted by the Ministry of Health.”

“We have met several times now with the Bioethics Table which is a Table that was struck by the Ministry to advise them on the Triage Protocol. The last time we were invited to meet with the Bioethics Table was in December 2020, which is especially concerning since the latest version of the Triage Protocol is dated January 13, 2021,” Shanouda said. The organization said it has not been consulted since.

Six members of Ontario’s Bioethics Table additionally warned April 15 that “without public discussion, the vulnerability of already marginalized groups is intensified and trust eroded.”

PressProgress contacted Critical Care Services to respond to concerns advocates had that the consultations were insufficient and the draft it sent out could be discriminatory. CCSO referred PressProgress to Bioethics table member Dr. James Downar, who, CBC News reports, wrote the January 13 drafts.

Dr. Downar told PressProgress:

“The Emergency Standard of Care is a contingency plan to be used as an option of last resort. It was based on recommendations that were developed by the Ontario COVID-19 Bioethics table, which conducted extensive consultations with multiple stakeholders including disability advocates and the Ontario Human Rights Commission. The consultations are continuing, and the process of generating, reviewing and updating any triage plan should always be an ongoing process, responding to changing conditions, emerging evidence and an evolving understanding of the ethical, social and legal implications.”

Ontario’s Ministry of Health did not respond to requests for comment from PressProgress.

On April 27, the Ministry called for special medical assistance from Canada’s armed forces as hospitals face a surge in COVID-19 ICU patients.”

PressProgress

PressProgress is an award-winning non-profit news organization focused on uncovering and unpacking the news through original investigative and explanatory journalism.

@pressprogress

PressProgress is a news division of the Broadbent Institute

 Written Statement in April 2021 to News Outlet by Dr. James Downar in Response to Media Inquiry Regarding Critical Care Triage Protocol

  1. Critical care triage has not yet been initiated anywhere in Ontario. The focus of the critical care community is on building capacity to see us through this surge.
  2. The Emergency Standard of Care is a contingency plan to be used as an option of last resort. It was based on recommendations that were developed by the Ontario COVID-19 Bioethics table, which conducted extensive consultations with multiple stakeholders including disability advocates and the Ontario Human Rights Commission. The consultations are continuing, and the process of generating, reviewing and updating any triage plan should always be an ongoing process, responding to changing conditions, emerging evidence and an evolving understanding of the ethical, social and legal implications.
  3. The only criterion used to prioritize critical care would be short-term mortality risk. This is always based on an individualized assessment, and clinical guidance is provided to help assess risk in people depending on their medical condition. But assessment tools should only be used in situations where they help indicate mortality risk, and with respect to disabilities, there are clear and explicit instructions not to use the Clinical Frailty Scale for people under the age of 65, or for anyone with chronic, stable disabilities or other conditions where it would not indicate mortality risk. For other conditions, mortality risk can be determined without any assessment of function. In other words, people with identical disabilities would be prioritized very differently if their mortality risks were different, and people with no disabilities at all receive a lower priority if their mortality risk is high. The focus is squarely on mortality risk, not ability or function. This is very important.”

 Edmonton Journal April 30, 2021

Originally posted at https://edmontonjournal.com/news/local-news/ahs-releases-triage-protocol-outlining-which-patients-would-receive-care-if-icus-become-overwhelmed-by-covid-19

AHS releases triage protocol outlining which patients would receive care if ICUs become overwhelmed by COVID-19

Author of the article: Anna Junker

The Royal Alexandra Hospital is pictured in Edmonton. The hospital’s ICU unit has seen COVID-19 surges during the pandemic. PHOTO BY SHAUGHN BUTTS /Postmedia, file

Alberta Health Services has released a triage plan for determining who will receive critical care in the event that COVID-19 patients outnumber available ICU beds in the province.

The 50-page Critical Care Triage plan, unveiled Friday, would not be activated until the health authority has exhausted all other options, such as transferring patients, health-care staff, equipment and medication between different hospitals in the same health zone or across the province. It would be implemented based on direction from the AHS CEO, in consultation with the executive leadership team.

“When activated the triage protocol will be utilized in all health-care facilities and critical care units in Alberta to prioritize patients who have the greatest likelihood of overall survival,” the report states.

The plan lays out four “pandemic or disaster” stages, which would determine whether triaging is necessary.

In a “minor surge,” the number of patients requiring critical care would exceed resources. As a result, staff may be pulled from other critical care units to help with care and patients may be moved into recovery rooms.

A “moderate surge” would see staff brought in from other areas of hospitals and patients moved to recovery rooms or subspecialty ICUs. Transfers for patients in emergency departments would be delayed.

Triaging may be required in a “major surge,” which would occur when 90 per cent or more of available ICU beds in the province are occupied. The first phase of triaging would only allow patients who are predicted to have more than 20 per cent likelihood of surviving one year to enter the ICU.

A “large-scale surge” would see 95 per cent or more of available ICUs in the province occupied and could see the second phase of triaging activated. Under that scenario, those with a 50 per cent chance of surviving one year would be admitted to the ICU. Pediatric triaging will be considered.

“Information about a patient’s underlying illness, disease, or disability will not be taken into consideration unless they directly impact a patient’s likelihood of surviving the next year,” the report states.

Decisions for critical care eligibility will not include a person’s age, sex, socioeconomic status, race, disability, employment status, or the cost of future care. Once a decision has been made on who gets care, it cannot be appealed by the patient or family.

Alberta has the capacity to fully staff 425 ICU beds for COVID-19 and non-COVID-19 patients. As of Friday, there are 152 COVID-19 patients in the ICU – the highest since the beginning of the pandemic.

Kerry Williamson, spokesman for AHS, said in a statement the Edmonton Zone currently has 102 ICU beds open — a base of 72 general adult beds and an additional 30 spaces.

This week, the Edmonton Zone was between 86 and 88 per cent capacity for all ICU beds.

‘I just can’t imagine’

Dr. Noel Gibney, co-chair of the Strategic COVID-19 Pandemic Committee for the Edmonton Zone, said the triage plan is well-developed, but it is not a situation to ever want to be in.

“I just can’t imagine, explaining to the patients or their families why these individuals are not going to get the care that they need,” Gibney said. “I can’t imagine doing that day after day after day, or multiple times in the day. I mean that the moral distress associated with that would be extreme.”

He said the postponement of surgeries and release of the triage protocol suggests AHS is extremely worried about a “disaster-type situation.”

Gibney said the public health restrictions that are currently in place are “absolutely not” enough, and warned that the protocol could need to be activated this month.

“I get the sense that the government has some notion that they may be able to just vaccinate the province out of trouble this time. But we’re not going to do that,” Gibney said.

“We’re in a situation where modelling shows that in about three weeks, so that by May 22, we will be at a point where we may reach Phase 1 of the pandemic triage protocol.”

He said the province needs to implement a strict lockdown and use the same health measures that were in place last April – moving all schooling online, limiting retail to essential-only, closing non health-related personal services like hair and nail salons, severely limiting or close places of worship, and closing patios.

Adequate sick pay also needs to be implemented, he said.

“Some of the components of what the government has been doing with targeted vaccinations, I think that’s great, but it simply isn’t going to be enough in time to get us out of that danger that we’re in,” Gibney said.

ajunker@postmedia.com

Twitter.com/JunkerAnna

 Financial Post May 12, 2021

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Originally posted at https://financialpost.com/pmn/press-releases-pmn/business-wire-news-releases-pmn/theres-no-room-for-discrimination-against-people-with-disabilities-cupe-ontario-and-joel-harden-call-for-consultation-and-revision-of-triage-protocol

Press Releases Business Wire News Releases

“There’s No Room for Discrimination Against People With Disabilities”: CUPE Ontario and Joel Harden Call for Consultation and Revision of Triage Protocol

Author of the article: Business Wire

Business Wire

Publishing date: May 12, 2021 • 23 hours ago • 2 minute read • Join the conversation

TORONTO — The Ontario Government’s draft plan to ration access to at-capacity critical-care is discriminatory and must be revised immediately, said the Canadian Union of Public Employees (CUPE) Ontario and Joel Harden, NDP MPP for Ottawa Centre and the Critic for Accessibility & Persons with Disabilities.

“The fact that the draft plan says that doctors will look at your short-term mortality risk or your capacity for self-care to decide if you get access to limited intensive care units is nothing more than blatant discrimination against people with disabilities,” said Fred Hahn, President of CUPE Ontario. “This dangerously violates the foundational rights of Ontarians our members care for and the rights of many of our members themselves.”

While Health Minister Christine Elliott recently said that Ontario may not need to resort to rationing, due to reduced demand for ICUs, concerns raised by CUPE Ontario, the Ontario Human Rights Commission (OHRC), disability organizations, and the six bioethicists on the government’s advisory Bioethics Table remain.

“I’m not reassured by that at all,” said Michele Gardner, member of CUPE Ontario’s Workers with Disabilities Committee. “This discriminatory triage protocol can still be used at any time. It makes it clear that people with disabilities are at risk of not getting the critical-care they need because of explicitly biased criteria.”

“The protocol must be revised to remove any discrimination and we must be consulted moving forward,” added Gardner. “The OHRC has raised the problem of lack of consultation, and so have the six members of the bioethics table, who rightly said that without it this government is only intensifying the vulnerability of people with disabilities.”

“More than a year has passed since over 200 community organizations wrote to the Ford government urging it to remove disability discrimination from its triage protocol. The response so far has been silence,” said Harden. “It’s time to stop the secrecy surrounding critical care triage and for the Ford government to remove disability discrimination from its protocol.”

Contacts

Daniel Tseghay

Communications Representative, CUPE

dtseghay@cupe.ca