As a disabled person, I have concerns about physician assisted suicide (PAS). However, I live in a country that is swiftly moving toward concrete legislation that will make it legal and accessible to applicants. As a result I think the time for debating whether PAS should be legal is a bit unproductive. I don’t say that to silence discussion. I fully expect and endorse that the discussion around the morals and ethics of PAS will and should continue.
However, from an activist perspective, it is time to accept that this legislation is quickly approaching and it will be far more productive to highlight out concerns and make suggestions that will hopefully make a society which allows PAS to be safer for disabled people.
In terms of guiding legislation I would like to see the following requirements for applicants for PAS.
- The application must be made by the person seeking assisted suicide. There should be no allowance for surrogate decision makers applying on behalf of people who can’t themselves apply.
- There should be no advance directives for PAS in cases of dementia. A person must be capable of agreeing or changing their mind at the time the lethal action is taken (this is going to make many people very angry but I think it’s necessary)
- The term suffering must not be applicable as a general descriptor to disability in any part of the legislation. Only an individual can label their own experience. There should be no legislative bias.
- PAS must be patient initiated. Physicians must not be allowed to list it as a possible treatment option. They should only be able to elaborate on it as an option if a patient specifically asks about it.
- There needs to be criminal legislation specifically targeting so-called mercy killings, so that in a world where PAS exists people do not become indifferent to the murders of disabled people by family members and care givers.
- There must be policies in place to identify if someone has been coerced into seeking PAS. If coercion is found, there must be services available to make that person safe (such as if the individual’s care giver is the coercive force, making alternate care arrangements)
- Make very clear guidelines about who can qualify for PAS. Avoid using really subjective terms like suffering unless they are accompanied by a rigid definition and not open for interpretation.
In my experience, people are woefully ignorant of what rights people had prior to Carter v. Canada (the Supreme Court ruling that legalized Physician Assisted Suicide). I can’t tell you how many people I have encountered who didn’t even know that you could refuse treatment (I’m not suggesting that this is a preferable option to PAS, just pointing out the lack of understanding), or for that matter that Advanced Directives like Do Not Resuscitate orders (DNRs) existed. So many people actually think that the Supreme Court ruling that occurred just last year opened the door for all of that. There is another shockingly large contingent of people who seem blissfully unaware that Carter v. Canada even happened.
I say blissfully unaware because they will often be found saying things like “In Canada we believe in maintaining life and we believe that until the last breath there is hope”. Seriously people, Canadians have had the right to DNRs for quite some time now and BTW Carter v. Canada is a thing that happened. I guess some people really do just use the internet to look at porn and cat videos. I can’t explain this level of cluelessness otherwise.
In many ways I feel that this ignorance of the nuance of end of life care and the options available and how long certain options have been available is scarier than the legality of PAS itself. It is ignorance that allows disability to be synonymous with suffering. It is ignorance of the current legal system that has allowed disabled people to end up with DNRs that they did not consent to. This ignorance is what allows people to say with a straight face that there is no concern of a slippery slope and that disabled people do not need to worry about being targeted by family, care givers and medical personnel for PAS.
The only way to truly tackle the risks that legal PAS poses to disabled people is to acknowledge that those risks exist.
We live in a world where disabled people are devalued by society. Some medical professionals have advocated that disabled infants be actively euthanized. Academics (like Peter Singer) have echoed that argument and have gone further to advocate for healthcare rationing as a cost saving measure. They argue that life outcomes (which they and not the patient determines) should be considered when deciding who gets life saving treatment.
It is really not that hard to imagine a family member nudging a patient towards PAS whether it be to avoid caring for the patient or out of a desire to benefit from an inheritance. It is equally easy to imagine a stressed and overworked medical staff of dropping hints to a patient whose care is both expensive and time consuming. Considering that society has already done a great job of framing disabled people as burden, that people would not be susceptible to such hints.
The biggest danger of the slippery slope is having those in power assume that their good intentions are enough to negate the risk of it happening. Acknowledging the risks and taking steps to stop them is the best hope of actually avoiding them. Good intentions are not enough.
I agree. Mental capacity to make the decision is a difficult one, as by the time someone’s quality of life is so poor that they prefer to end it, that is often impacting on their mental health. Not to mention conditions where they or the meds used to treat them have an impact on cognitive ability. I have ME, and this is a serious problem with this disability. The terminal stage is horrendous, and I sure as hell don’t want to go through it. Various degrees of paralysis can occur. People can lose the ability to think clearly or communicate by that point. Indeed, problems with both of those arise with only moderate ME. So we’ve had situations such as Lois Owen, who starved to death while her parents and doctors sat back and let it happen, because she lost the ability to eat and was frightened of hospitals. Or the Lynn Gilderdale case, where she supposedly asked her mother to kill her, and her mother was prosecuted for murder. No one ever asked whether she had the full capacity to make that decision, as far as I can tell. Her mother was acquitted.
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See, I am a person who wishes she would have been “put down” as a teenager. I’m now in my 40s and I regret almost everything that has happened in my life since puberty. Before puberty? People didn’t judge me and find me wanting.
My disabilities are autism, PTSD, and depression. So I would be found to be “not in my right mind” at almost every stage of the game. I’ve had these disabilities all of my life, so I guess I could never have given consent? I can see ways that my life could have been made bearable. I can see it even today. If I lived in a disability-friendly world, there would have been ways. But it’s not going to happen, because I am too annoying, too apart from the norm. I still can’t imagine being granted an alternative that is better than death.
I don’t know where I stand on this, other than wishing I could ask for suicide and be given it.
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