Access: Right to die?
121 Responses
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Sacha, in reply to
I’m reading that as advocating the privileging of the disabled over the supposedly abled
It's not a zero-sum thing. We are capable of solving balancing acts like this in other areas of public policy.
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Joe Wylie, in reply to
It’s not a zero-sum thing. We are capable of solving balancing acts like this in other areas of public policy.
Well that’s what I’d expect from you Sacha, given your past form here. But it’s not what Martin Sullivan appears to be saying.
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Sacha, in reply to
We have different approaches to activism, yes. :)
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Hilary Stace, in reply to
Thanks for that Sacha. Like Rosemary's earlier post it is informed by personal experience about how power and systems work in the real world.
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Sacha, in reply to
Thanks. When it is clear something will be done regardless, sometimes the best we can do is lessen the harm.
I'm pleased the committee chair included my recommendations in the final advice. Also managed some practical wins in the sparse consumer-oriented material created afterwards. However, lack of cohesive action or leadership around the issue was another pointer that we are not good enough yet at collective advocacy.
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Sacha, in reply to
to the point where women will be compelled, even against their will, to carry a disabled foetus to term.
disabled people would have to be valued a heck of a lot more before that would ever happen.
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Joe Wylie, in reply to
to the point where women will be compelled, even against their will, to carry a disabled foetus to term.
disabled people would have to be valued a heck of a lot more before that would ever happen.
Which on the face of it appears to be Martin Sullivan’s agenda, and by unfortunate association possibly even yours. This is my problem with the blinkered nature of single-issue activism. Those who present any attempt at liberalising laws governing the right to die as a eugenicist plot to send Forrest Gump to the gas chamber can just as readily be accused of being stalking horses for the anti-abortion lobby.
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Hilary Stace, in reply to
After birth, so not abortion. Anecdotally common in many cultures. With baby girls not valued, disabled babies wouldn't have a chance of survival.
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Sacha, in reply to
And that is the connection the NZ Bioethics Council enforced during their 2008 ‘Who Gets Born’ pre-birth testing project. Disability stakeholders were assigned to the same subgroup as religious anti-abortionists.
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Sacha, in reply to
I'm really saying it would be a nice problem to have. Not going to happen.
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Rosemary gives us this scenario:
The admitting doctor decides that a sixty year old tetraplegic has little quality of life and that dying of pnuemonia is 'par for the course'.
The doctor chooses not to order any treatment..... "nurse for comfort". ...Another doctor comes on duty and, after further examination and discussion, performs an emergency tracheostomy and personally 'negotiates' for a bed in ICU...to give the man a chance of life. ...
Imagine doctor no.1 standing at the foot of your sickbed clutching the consent form for the 'blue juice'.
In the original post, we have a handwaving assertion that countries with euthanasia laws aren't perfect, without any references to back that up.
1. The scenario outlined above happens today. I personally know it does. I'm sure it also happens without discussion and the explicit consent of the affected people. Other than some doctors continuing to play god, you can't legally have an open discussion. Therefore consent is not explicit, even when there is consent, This allows god-doctors to get away with so-called grey areas.
2. In countries that permit euthanasia (that I'm aware of; certainly the Netherlands and Switzerland), the scenario of the doctor waving the form at the bottom of the hospital bed in an acute situation simply can't happen. I strongly believe, as in those countries, that safeguards of a vigorous and drawn-out process be built in. Yes, multiple counselling sessions, forms, etc etc.
3. In Switzerland and the Netherlands, every euthanasia death is accompanied by a police and/or coroner investigation. Your god-doctor can't wave his form signed under duress there. This safeguard should be implemented as well. No euthanasia law should be signed without providing this process.
4. I'm sure there are possible ways to subvert the process in countries with euthanasia laws. But without concrete examples, it's hard to say. I can envisage an intellectually-disabled person being abused into signing a form... Except in the countries I know of, if you're not legally capable of signing a contract, you can't sign that form either.
5. But I'm sure some people can come up with methods to circumvent legal processes. Is this any different and will it be more prevalent than in places that 'allow' silent withdrawal of life-saving care? I honestly doubt it.
I want the option. Yes, we have pain and suffering in our lives, but we should also be capable of deciding when enough is enough, for ourselves (no, not for someone else's convenience).
Yes, I have sat by the bedside of someone whose insides were being eaten by the cancer, and who begged God (yes, a devout Catholic) and us for an end in the few lucid moments between the morphine doses. I have also sat beside the bed of the person getting the same kind of care, and who peacefully went through her dying of several months.
Would the first woman have taken the euthanasia option if it had been offered? Probably not, actually. But I would have wanted both to have had the option - no, not explicitly counselled for, but the background knowledge it would be legal.
I have also read about plenty of instances of people in the UK who managed to obtain euthanasia supplies, and who in the end didn't use them, because they found their approach to death easier than they anticipated. No-one sane who supports euthanasia supports any reduction of the quality and scope of palliative care. Personally, I wish it were improved - there seems to be an element of 'postcode lottery' at times.
To continue with the theme of us discussing our fears, I think it's important to have articles like these that reveal the fears of those who have significant and often on-going medical interventions, and who are the people who will be most vulnerable to mendacious carers and god-doctors.
It alerts us as to just what we need to see in the way of safeguards to any law that might be proposed. If the safeguards look more like Swiss cheese, such a law should be rejected out of hand.
We need to affirm the right to always choose for ourselves, and for that choice to be clearly recognised. A big component of my support for this kind of law is that big reduction in the unspoken grey areas we operate under now.
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Any reduction in the unspoken grey areas would have to be legislated. At the moment these sit firmly in the "Doctor's professional judgement" category- not usually open for discussion with or challenge by the persons affected.
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Found this relevant recent NZ blog post from Low Visionary Euthanasia: a disability perspective
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Rebecca Macfie's Listener interview with Lecretia Seales on assisted dying is now free to read online.
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Sacha, in reply to
She is such a great journalist.
After reading that, I wonder why we would bundle permanently disabled people with terminally ill people?
Why not legally permit early death only for the latter group? Would remove some of the obvious fishhooks.
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Sacha, in reply to
Large-scale stereotypes create strange assumptions because so many people's real lives end up so far apart from the stories. Many of us learned that disability is the same as being sick for a long time. That's because we understand being ill, for a short time.
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Martin, in reply to
advocating the privileging of the disabled
We're disable people Joe, not the "disabled". As the disabled we have been incarcerated in institutions, subject to experimentation, and a whole host of other dehumanising treatments including involuntary euthanasia...
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Joe Wylie, in reply to
We’re disable people Joe, not the “disabled”. As the disabled we have been incarcerated in institutions, subject to experimentation, and a whole host of other dehumanising treatments including involuntary euthanasia…
You poor dears. Having spent a sizeable chunk of my adult life providing care and support for someone with an intellectual disability I really have to confess myself a tad underwhelmed by your brand of scenery-chewing.
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Sacha, in reply to
disable people
how does that work, linguistically?
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Martin, in reply to
sorry, forgot the d as in "disabled people", Sacha.
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Chelle Hope, in reply to
I think you've hit the nail on the head, Sacha. I would much rather see a law that allows self-determination for terminally ill people in how and when they die and leave people with disabilities, and everyone else for that matter, out of it.
While I've always been an advocate for voluntary euthanasia, this article and discussion have really made me think about a few things. I still hold the same view but it is clearly going to be more complicated to get right if we do go down that path and I do think, from what I've seen in international media, certain countries that are broadening their criteria for consideration appear to be setting some dangerous precedents.
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Lecretia Seales could have lost a lot of good living time if assisted suicide had been available to her when she was diagnosed in 2011 and given weeks to live. She would have met the criteria, and no-one would ever have known how wrong the doctors were or how much she missed out on.
Sacha's link to her story: http://www.listener.co.nz/?p=148725I would much rather see a law that allows self-determination for terminally ill people in how and when they die and leave people with disabilities, and everyone else for that matter, out of it.
Yes, I think that's a sensible course. The terminally ill and not long left bit needs to be beyond doubt though.
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Hilary Stace, in reply to
If the law distinguishes between terminal illness and disability where does something like child cancer fit?
The Belgian law also applies to child cancer (and other childhood conditions). So parents and even children can theoretically ask for euthanasia. I know a bit about child cancer and know children who have survived and others who have died.
Risks for children under a liberal euthanasia policy:
1.It is very hard for parents and clinicians to watch children have some tough treatment over a long time, especially when a successful outcome is not guaranteed.
2. Children are often well aware of their parents' anxiety over them and how their cancer has disrupted family life. -
Sacha, in reply to
If the law distinguishes between terminal illness and disability where does something like child cancer fit?
Actually I suppose some progressive impairments become terminal too. I imagine you would need to satisfy the medical and psychological criteria even more rigorously if parents are making that decision on behalf of a child, or the child does not have enough life experience or reasoning ability to make such a decision.
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I don't think parents should be able to ask for euthanasia on behalf of a child. How could a child have enough life experience? Or reasoning ability? I would set the minimum age of consent for euthanasia very high - I'd take the Confucian standard of 30 being when one reaches adulthood as the absolute minimum, but I'm not sure that would be old enough.
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