Denied: Disability and Life-Saving Treatment in the COVID-19 Pandemic
The COVID-19 pandemic is a scary time for all. When you have a disability, it’s downright terrifying to know that your life is a risk, not just from the virus, but also from the very real potential of being excluded from lifesaving measures. The devaluation of our lives that used to be covered with a veneer of compassion is now coming into the light and is very visible, especially when it comes to triaging severe cases of COVID-19. It makes me wonder if I, as a person with a disability, would be deemed worthy of a ventilator?
COVID-19 triage and disability
Globally, we are facing the possibility of scarce lifesaving resources and that means having to make hard decisions about who should get access to them. In many places, the first two groups who’d be removed from the list on the elderly and those with disabilities. Some recent stories from the UK are particularly blatant and unnerving. BBC News wrote about a clinic in Wales that sent out a letter to some of its patients suggesting that they sign a DNR so “scarce ambulance resources can be targeted to the young and fit who have a greater chance.” Although the clinic has since apologized, it’s not stopping the trend — there are numerous reports and social media of others receiving similar letters.
The province of Ontario has been working on its own triage protocol. An article in the Toronto Star explained that “the purpose of a triage system is to minimize death and illness for the population over all and ensure consistent and predict predictable guidelines.” Although it’s not yet been made public, the ARCH Disability Law Centre has seen a copy and is concerned enough to have created a petition advocating for changes.
If you live in Ontario, please sign the ARCH petition
Specifically, they are concerned that the protocol has built-in discriminatory practices which will lead to people with disabilities being “triaged out” and not received potentially life-saving treatment. The petition states that the protocol may deprioritize care for people with cognitive disabilities, people with specific conditions, such as ALS or Parkinson’s, people who receive accommodation or assistance — that might include me — and disabled individuals may not receive accommodation during treatment to help them fully understand what is happening.
My ICU story
Four years ago, I developed complications from the flu and ended up on a ventilator in the ICU. I was on a ventilator for two weeks, then finally extubated, which led to me crashing and flatlining. The medical staff fought hard to save me and I woke up with a tracheostomy (later removed). It was a hard month for me, for the people who love me, and for the medical professionals who cared for me. I survived and I am so grateful for that every day.
My partner has told me stories of the assumptions medical professionals made about me based purely on my disability and they tended to underestimate everything about my life and capabilities. At the time, they were trying to understand how best to treat me, but in the bleak light of the pandemic, these assumptions have become something very different. In the absence of family members to explain and advocate — because if we are going to the hospital, we will all be going alone — what assumptions would guide my care (or lack of it)?
Triage protocols: a necessary evil
Triage is a process of categorizing people for treatment based on the urgency of their situation and in times of limited resources — wartime or pandemics — the chance they have of benefiting from treatment. This sounds very logical, but when you’re on the ground, making these decisions can be absolutely heartbreaking. In extreme situations, deciding to not treat someone because they have a poor chance of survival may guarantee their death.
Triage protocols are a way to standardize these decisions, helping the medical professionals who have to make them, as well as making sure decisions are not based on individual beliefs (or, cynically, that someone can pay their way out to treatment). Essentially, they ensure fairness in what is an unfair process. The overriding goal for many of these protocols is to save as many lives as possible, and secondly, to save as many life-years as possible. That means prioritizing people who have a better chance of surviving and those who have a better chance of living longer. In an untenable situation, this is the logic you have to follow.
The problem is that many of these protocols include what’s called exclusion criteria to automatically disqualify certain people. Whether we’re looking at places in the UK where people with intellectual disability have been given a DNR (do not resuscitate) without consultation with the patient or family, Chile at first excluding people with rheumatic conditions (since changed), or ICUs in the US and Canada excluding people with certain disabilities, it shows very obvious discrimination based on preconceived ideas on the value of disabled lives.
It is ableism writ large and it will have a devastating impact.
What you can do as an individual and an ally
My life, and many other lives, could depend on your help.
More than ever before, we need people with disabilities to come together with able-bodied allies to ensure that COVID-19 triage guidelines take our lives and potential as seriously as they do the able-bodied.
First, and urgently, if you live in Ontario, please endorse the ARCH petition by 5 PM ET on Monday, April 6, 2020. You can also call your Ontario Member of Provincial Parliament to share your concern. If you’re outside of Ontario, whether in Canada, the US, the UK, or any other country, do a bit of digging to find out what’s happening where you live and speak out.
On an individual level, this is a really good time for all of us to have serious conversations with loved ones about what we would want in case of severe COVID-19. If you haven’t already, make sure you have a Power of Attorney for health, as well as an advance directive, including if you want heroic measures, including ventilation, or a DNR. Create a document with your medical information, medications, and contact information for next of kin and your doctors. It might help in a possible triage situation.
In the past, when I have talked or written about how disposable people with disabilities are, people who care about me — including my readers — have tried try to reassured me by saying this doesn’t happen anymore or it wouldn’t happen to me. And it’s a lovely thought, one that comes from the heart. But I hope that you cansee how thin that line is and how easily it is crossed in times of crisis.
There is a quote attributed to a number of people, including Gandhi, that perfectly illustrates what is happening now. “The true measure of any society can be found in how it treats its most vulnerable members.”
How do you want your country to treat its most vulnerable?
REFERENCES:
Blackwell, Tom. “Some critically ill COVID-19 patients choosing to die at home rather than be treated with ventilator in ICU.” National Post. https://nationalpost.com/health/some-critically-ill-covid-19-patients-choosing-to-die-at-home-rather-be-treated-with-ventilator-in-icu
“Coronavirus: GP surgery apology over ‘do not resuscitate’ form. BBC News.” https://www.bbc.com/news/uk-wales-52117814
de Puy Kamp, Majlie, Devine, Curt, and Griffin, Drew, “As coronavirus cases grow, hospitals adopt a system to rank patients for treatment.” CNN. https://www.cnn.com/2020/04/03/health/coronavirus-hospital-ethics-ventilators-invs/index.html
Hosali, Sanchita, “The fight against Covid-19: Whose life counts?” The British Institute of Human Rights. https://www.bihr.org.uk/blog/the-fight-against-covid-19-whose-life-counts
Kumar, Sarabajaya. “The Coronavirus Act 2020 Is Extremely Dangerous For Disabled People Like Me.” HuffPost. https://www.huffingtonpost.co.uk/entry/coronavirus-disabled-people-act-2020_uk_5e872e86c5b6a94918351e9c
“A Model Hospital Policy for Allocating Scarce Critical Care Resources: Available Online Now. “University of Pittsburgh: Department of Critical Care Medicine. https://ccm.pitt.edu/?q=content/model-hospital-policy-allocating-scarce-critical-care-resources-available-online-now
Mounk, Yascha. “The Extraordinary Decisions Facing Italian Doctors. The Atlantic. https://www.theatlantic.com/ideas/archive/2020/03/who-gets-hospital-bed/607807/
Rosenbaum, Lisa, MD. “Facing Covid-19 in Italy — Ethics, Logistics, and Therapeutics on the Epidemic’s Front Line.” NEJM. https://www.nejm.org/doi/full/10.1056/NEJMp2005492
Shiel, William C. Jr., MD. “Medical Definition of Triage. MedicineNet. https://www.medicinenet.com/script/main/art.asp?articlekey=16736
Truog, Robert D., M.D., Mitchell, Christine, R.N., and Daley, George Q., M.D., Ph.D. “The Toughest Triage — Allocating Ventilators in a Pandemic. NEJM. https://www.nejm.org/doi/full/10.1056/NEJMp2005689?fbclid=IwAR2CKLyj-ZrvuR5UEF0pMqMjGuORYfeD_a7RC19QwbWwXGZgrGbnWhJVC24
Yang, Jennifer. “Ontario developing ‘last resort’ guidelines on which patients to prioritize if hospitals are overwhelmed by critical COVID-19 cases.” Toronto Star. https://www.thestar.com/news/canada/2020/03/29/ontario-developing-last-resort-guidelines-on-which-patients-to-prioritize-if-hospitals-are-overwhelmed-by-critical-covid-19-cases.html
Tag: .disability, COVID-19, discrimination ARCH, exclsuion, ontario, petition, triage, triage protocol
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This is heartbreaking, it’s such a hard time for everyone but especially for the many people with pre-existing conditions. I visit and shop for a lady with numerous conditions and we are all trying very hard to keep her safe, as she’d be affected by the same triage issue (I live in the UK, but it’s the same thing everywhere). I wish you all the best and hope that you can stay safe during the pandemic.
This is hard to read and think that practices like this are actually happening. I know in Italy they were looking at doing something similar. Does this have anything to do with the way the healthcare system is set up in Canada vs. the way it is here in the US? I can’t imagine what this feeling must be for doctors as well whose goal is to save lives and not just give up. These really are trying times for everyone. I would have never thought I’d see something like this in my lifetime. Please stay safe.
The method and rationale of triage is worded is such a way that (on the surface) it sounds perfectly logical and reasonable. That is, until you realize what this actually means for those that don’t fit within their ‘normal’ guidelines. When you get to that point, the realization of the ramifications hits home hard. While I don’t reside in Ontario, I hope that others will come forward to add their voices to this issue. Best wishes to you during this extremely scary time.
It is so scary! I worry about people who are in the risk group a lot. I do not live in Ontario so I can not help but I do hope things will turn for better soon
I had no idea about this triage system and while I can see from an objective standpoint why it would be in place, I also from a very human level see how this kind of exclusion will be terrifying. I will check and see in my own country, what our most vulnerable’s options are, as we are right now trying to keep everyone safe. I sincerely hope they really do not exclude anyone. Every life is so precious and I wholeheartedly believe we should ensure everyone is safe, healthy and be each other’s keepers. This is not the time to give up on those who are also fighting!
This was so sad to read. A gulp at my throat that this can actually happen. Just not nice at all xx
This whole situation is overwhelming and frightening. I don’t think that this detail has crossed the minds of many, but it’s a scary and real sitaution! Thank you for sharing your very real and honest experience, opening the eyes of many. Hopefully by encouraging the conversation, it will help to facilitate a change.
Very scary really for those suffering from disability in these times of the virus. Yesterday I came to know of my cousin suffering a fracture after falling down in the toilet and no hospital was ready to accept him for an urgent operation required. He finally had to pull to a few stings here and there till he got admitted. Difficult times these days.
The triage concept sounds great, in theory. In practice, it is terrifying and horrible. I’ve never believed that another human has the right to choose who lives and who dies, which is why I have such a hard time with this concept and the fact it is actually happening. With the advances in technology and human rights, it just should not happen. I don’t live in Canada, so I’m useless as far as signing the petition, but I certainly stand with you on this and I’ll continue supporting you by sharing and spreading awareness.
This is disheartening indeed and as a nurse, I can fully empathisize. I don’t live in Canada, so I’m of no help with the petition. This blog is excellent and really opens my eyes to this real issue. I’m so sad to read you had such a major fight with the flu and I genuinely hope history doesn’t repeat itself and you stay safe from this pandemic. I hope your aricle goes viral and I will share it to that along!
Holy Smokes I had no idea!!! This feels very awful to me! It just does not seem right that a person or group of people can make the decision as to who’s life is more valuable. I think I may have heard my sister say something like this about her husband, who has had a heart transplant. They were isolating way before it was made mandatory and I think she said something about because of his health he may not be eligible for life-saving measures. They live in Los Angeles.
Anyway, thanks for enlightening me. If I see a petition circulating about my part of the country I will know to sign it.
I am part of the fight for this in the UK as a member of the Disability Labour Party, I really that people particularly the elderly are already being treated like this as this Country are not not reporting about Care Home deaths of which there have been many.
It is a frightening time for everyone. And yes, those decisions are being made. Whose life is more worthy of trying to save? Are the disabled not worth as much in society as able bodied? It’s very sad and worrying for those of us whose lives are already difficult.
Stay safe, Lene
It truly is a terrifying time. However, as someone whose healthcare providers feel that surgery to free my internal organs that are being strangled by adhesions is a waste of time since they will return, I am not surprised that we would be passed over. It’s heartbreaking and wrong.