OTTAWA — With Ontario’s ICUs closer to being overwhelmed than they’ve ever been and COVID-19 case counts still worrisomely high, one question is becoming ever more urgent: What happens when the province runs out of capacity for critical care?
It is becoming more and more likely that doctors will have to make decisions about who does and does not get critical care in the event of a surge — Anthony Dale, the president of the Ontario Hospital Association, recently told TVO.org that, based on Ontario Health projections, by February 24, “we will absolutely have exceeded our health system’s capability of caring for COVID patients and all the other people needing other forms of life-saving care.”
But there are serious concerns with both the content and the transparency of Ontario’s draft triage protocol, and advocates for people with disabilities say that even with changes incorporated at the behest of the disability community, they are at risk of human-rights violations and being denied care unjustly.
Since the beginning of the COVID-19 pandemic, health-care systems around the world have been concerned about what might happen if the number of patients needing critical care resources, such as ventilators, exceeded the capacity of those resources. In some jurisdictions, such as Los Angeles, this has already happened: first responders have been told to reserve oxygen and not to transport patients to the hospital whom they see as having little chance of survival. Making decisions about how to ration care — sometimes referred to as triage — is an option of last resort.
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We already experience a form of triage whenever we go to the emergency room. In normal times, you’ll see a doctor sooner for chest pain than you would for a sprained ankle. In a mass-casualty event, such as a natural disaster, where there are limited resources in the field, triage is a way to make sure those resources get used effectively. The people most in need get them first.
A pandemic is similar to a mass-casualty event in that there are many people who need treatment and limited treatment resources. But triage in this context, where there are limits on equipment and available staff, involves excluding people from care. “You can buy ventilators,” James Downar, critical-care physician at the Ottawa Hospital and a member of the province’s bioethics table, told The Agenda this week. “You can buy beds, and you can find space in a hospital. It’s a lot harder to get trained and expert staff to manage critically ill patients in a short period of time, and I think that’s more than likely going to be the limitation we hit.”
The bioethics table completed a draft version of a triage protocol in March. Although the first version of it was never made public or formally adopted, it was circulated to hospitals and community organizations for their feedback. Immediately, advocates began to sound the alarm, due to clauses in the protocol they saw as discriminatory toward people with disabilities.
One of those advocates was Brian Dunne, executive director at Participation House Support Services in London, whose clients he describes as “the people that long-term care won’t take.” The clients living there are often medically fragile, and many use ventilators in their daily lives already. Under the original triage protocol, Dunne says, his clients would have been “triaged to palliative care” despite the fact that their disabilities are stable and they live in the community.
In order to treat its patients, PHSS set up a hospital space right in the building, where it can provide everything a hospital would, short of actual critical care, Dunne says, adding that the space is also used as the facility’s isolation ward for COVID-19 patients, which helps with infection control. “We would do everything we can to save them,” he says. While he notes that he has not been told his patients can’t come to the hospital, he says there’s generally a reluctance to treat them and an understanding that the hospital is a last resort: “There’s kind of a general rule: do not send people here unless they absolutely need to go.”
Dunne isn’t the only one concerned. David Lepofsky, chair of the AODA Alliance, a disability consumer advocacy group, says that the first version of the protocol is grounded in a discriminatory approach to people with disabilities. “The fact that experts that the government hand-picked in medicine and bioethics could write a protocol ridden with disability discrimination and bias is horribly disturbing,” he says. The draft relies on a tool called the Clinical Frailty Scale, which assesses whether a patient can perform certain activities of daily living, such as getting dressed, going to the bathroom, and managing finances. Higher scores indicate greater frailty.
Because people with disabilities often have difficulty performing these tasks without assistance, he says, the use of this scale can result in discrimination against them or in a presumption of frailty — when, in fact, the patient is stable. The CFS has not been validated as a triaging tool for younger people, and its was originally used to figure out which kinds of care should be provided to frail elderly patients, not which kinds of care they should be excluded from.
A statement from ARCH Disability Law Centre, an organization that provides legal assistance to people with disabilities, said that this constitutes discrimination against disabled people because it means that a disabled person will always be at a relative disadvantage to those without disabilities.
“In effect, the Triage Protocol adopts the absence of a pre-existing disability as a qualification for prioritization in accessing critical care,” the briefing note reads. “The way in which the Triage Protocol currently operates, a person with a disability is much less likely, if ever, to be prioritized above a person without a disability. This concern is further exacerbated by the fact that a broad categorization of disabilities — progressive disabilities — is a criteria upon which a patient will be denied access to critical care.” (ARCH did not respond to interview requests from TVO.org.)
The Bioethics Table did respond to feedback about this issue — Lepofsky describes it as having been “very responsive.” In later versions of the draft protocol, the most recent of which was completed in December, the application of the CFS is more limited. Downar told The Agenda that it should be applied only to “frail patients” but did not provide additional explanation. The new version of the protocol, he said, triages based on expected survival time. Although this is an improvement in the eyes of disability advocates — since progressive disabilities, such as Alzheimer’s disease, muscular dystrophy, or Parkinson’s disease, are not singled out — Lepofsky noted on The Agenda that there is a lot of room for interpretation when it comes to expected survival time.
Perhaps more concerning is the fact that the government has not made the triage protocol public, advocates say. The latest version of the protocol does incorporate feedback from advocates, but, contrary to the table’s recommendations, it has not been widely distributed. (As with many COVID-19 policies, it’s the provincial government that decides whether it will be adopted — the bioethics table does not have final say.) But Lepofsky says that the very fact that the first draft protocol circulated for so long could lead to medical professionals inadvertently applying old, discriminatory rules, possibly without even realizing: “You can’t hit the clear button on their brains.”
A spokesperson for the Ministry of Health told TVO.org via email that "the expectation of the Ministry of Health is for the Bioethics Table to continue its engagement in consultations and discussions with various stakeholder groups. These conversations are ongoing to ensure that the proposed framework reflects the best available evidence and advice. Nothing has been approved or endorsed by the Ministry of Health."
In a series of letters written during the fall of 2020, Ena Chadha, the chair of the Ontario Human Rights Commission, called on the government to release the protocol not only to stakeholders but also to the wider public. The government, she wrote, should “ensure that human rights is the primary guiding principle” of any protocol and that any protocol should ensure that there is a legislative basis for whatever decisions are being made and have built-in accountability measures.
Chadha says that she recognizes that any protocol will necessarily result in decisions that exclude some people from treatment. “I don’t know if we can create a protocol that completely eliminates all differential treatment, but what we could do is develop one that has differential treatment that doesn’t discriminate, so it isn’t based on stereotypes about people with disabilities and the quality of their lives,” she says. “The discrimination comes in when you’re relying on biases that just assume someone with a disability will not have a good quality of life.”
Lepofsky says that is a major concern for those in the disability community, because of the stigma they already face: “If a patient is nearing the end of their life, imagine the family being told, ‘Well, what’s their quality of life?’” Studies have shown that disabled people tend to rate their own quality of life higher than medical professionals do.
Lepofsky says he doesn’t blame doctors for the situation. “I’m totally sympathetic with them — they go into medicine to save lives, not to decide ‘you should not live.’”
According to the CBC, hospitals in Ontario began sending out memos Wednesday about training critical-care physicians on triage. As of Friday morning, the protocol had not yet been officially released to the general public.
Time is of the essence, Lepofsky says: “If you want to train [health-care staff], you need to train them now. In the States, they're already doing some rationing. It's not a hypothetical.”
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