Access: Right to die?
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Here is the RNZ interview with Lecretia Seales.
Thank you Martin for this thoughtful piece. A disability perspective on this topic is not often heard in the media.
So, these experts who are so scared of becoming disabled that they firmly believe “better dead than disabled” are those who will get to speak for us when it comes to the end game?
No – they are speaking for themselves and others who may share their perspective (such as myself) that end-of-life choices should be theirs to make. Just as you are speaking for yourself and others in the disabled community with (justified and understandable) concerns about how the law may apply. Why isn’t there room for both sets of voices in the debate, and why conflate one with the other?
The other problem with physician assisted suicide is that we will all be implicated in the killing of innocent citizens by virtue of the fact doctors are subsidised by public money.
So …Catholics having to fund abortions? Jehovah’s Witnesses having to fund blood transfusions? Christian Scientists having to fund all medical treatments? Not to mention pacifists having to fund the army. Does anyone with a moral/religious problem with a form of medical intervention (or other publicly funded practice) get to veto its provision?
So the solution is to legalise euthanasia and let doctors get on with their job of assisting people to die. Hang on a minute – I thought the Hippocratic oath which all doctors take was about preserving life and doing no harm?
So I have to let a doctor decide for me what is in my best interest, because the doctor knows best how patients ought to be treated? That’s a pretty old-school view of the medical profession … as well as a somewhat surprising one, given the past medical view of how newly born disabled children were viewed (“no point trying to save the little guy/girl, given the sort of life he/she would lead anyway … .”)
Language is important in this debate.
Fine. But that means your terms aren’t neutral either. So there is no way to “call this like it is”, because the terms anyone uses for it are defined by that person’s prior view of the practice itself. Witness “terminating a fetus” vs. “killing an unborn child.
I cannot see why it is so devastating in the minds of others to need someone to help than, say, get dressed when it is not at all devastating for them to have to rely on someone to fix their TV, or car, or plumbing.
But if you cannot see why it is so devastating, then why are you so disparaging of those who hold this view? Perhaps this might help you understand better: http://www.independent.co.uk/news/people/terry-pratchett-dead-remember-the-discworld-author-with-this-moving-right-to-die-video-10104427.html
As with many people Terry Pratchett thought he would eventually want the right to die when his potential 'suffering' became too overwhelming. However, he appears to have gone through a natural progression towards death. The movie Still Alice shows a woman with early stage Alzheimers leaving instructions for her future more disabled self about killing herself. However, for various reasons it didn't happen that way. The movie also shows how family relationships can develop, rather than deteriorate, during the progression of such a disease. What is anticipated isn't always the way things happen.
As Pratchett put it, simply knowing he could make the choice for himself improved his quality of life, whether or not that choice was ultimately exercised.
The point of this post is that disabled people have long had people make judgements about the assumed tragedy and suffering of their lives. If euthanasia is legalised the power of those beliefs will mean that disability will continued to be feared as something unnatural and negative, rather than embraced as just part of the diversity of life and living until death.
Disabled people, or those increasingly disabled by illness, will have more pressure on them not to be burdens on carers or the public purse, and they will be pressured to choose to kill themselves or be killed, as the easy option. There are historical precedents, and recent anecdotal reports of disabled people with DNR (Do Not Resuscitate) on their files without their permission.
I write this as an historian and observer of disability policy and with an interest in clinical ethics. Still not sure exactly where I stand on euthanasia, although I fear that it will not be healthy for disabled people, particularly those with high needs and less able to speak for themselves.
I can see both sides of this issue, but it is not an easy conversation. So much depends on our personal and social relationship with complex things like suffering, pain, dependence, death. We do not talk about them enough.
There’s a prevailing stereotype that depending on others is a bad fate, and yet in many cultures and times it is perfectly normal. Suffering is a normal part of life, and whole aspects of theology address it. Even in past Pakeha generations we grew up in homes with grandparents and siblings alike being ill and disabled and dying in our everyday experience.
With ageing boomers and stretched healthcare dollars, there’s a move against doing everything medically possible to extend life at the expense of quality. Atul Gawande’s 2014 BBC Reith lectures on this and his recent book Being Mortal are impressive. Palliative care is a wonderfully effective field, but there will always be some people who have had enough pain or suffering and who want to feel more in control of something as otherwise uncontrollable as dying.
I’ve seen a proud family member struggle with great pain, diminishing independence and reducing quality of life in his final weeks, and I believe he might have opted for an earlier end if it was available. It would have fitted what was important to him, including the impact on those around him. I have heard other older people talk about not wanting to be a burden. The checks and balances in any euthanasia legislation must be able to counter that sort of stuff.
While social attitudes and stereotypes about disability remain as they are, the risk is very real as Martin and Hilary have said that disability will be regarded as sufficient reason for an early death in too many cases.
If euthanasia is made legal, protective mechanisms must include people beyond the medical profession who tend to have very unhelpful beliefs about disability. We also need a massive and sustained investment in broad public awareness campaigns (and remedial training for many doctors) that make disability just another part of life, not a bogey to be avoided at all costs. Current efforts are tiny, fragmented and seemingly being used as a replacement for previous community project funding sources. Not good enough to prevent utterly predictable harm.
Joe Wylie, in reply to
The checks and balances in any euthansia legislation must be able to counter that sort of stuff.
Exactly. In a forum such as this I’d once have assumed that the discussion would be about how that could be achieved. Instead Martin Sullivan, with the headiness born of single-issue activism, Godwins his own argument by invoking the holocaust. In this mini-climate of wooden-leg-waving scaremongering, it’s the issue of unbearable physical suffering that’s treated as “a bogey to be avoided at all costs”.
Moz, in reply to
that disability will continued to be feared as something unnatural and negative, rather than embraced as just part of the diversity of life and living until death.
Not everyone wants to be disabled and views it as a gift. People like me look at the options and say exactly "I'd rather die", and mean it. I am profoundly skeptical of anyone saying "Moz, you don't really mean that" because I have lived with it my whole life. I am different to other people (unique, just like everyone else) and I have had everything from "no, no, eat that foul-tasting bile, it's yummy" (I am extremely sensitive to bitter flavours) through to "a 21 year old cannot consent to a vasectomy, let alone decide they want one". It took until I was 30-ish to get a permanent one, and more than two years of doctor-shopping to get the first "temporary" one.
I do not want to have to spend two years doctor-shopping to find someone who will approve my desire not to be tortured to death by doctors should that situation arise. Given the ever-increasing availability of death-deferring treatments I think it's very likely to.
will have more pressure on them not to be burdens on carers or the public purse, and they will be pressured to choose to kill themselves or be killed,
So you'd rather see them sedated to the point of idiocy lest they think they're a burden? I realise that's not what you meant, but it's the only way I can see to prevent that happening. Anyone able enough to think about it will realise that they are a burden, and wonder whether it's worth it. That pressure comes from within as much as without. It's definitely part of my thinking, because I just can't see how three people proving round the clock moz-care is a good use of anyone's time. I believe I should have the right to say no. Those who want to should have the right to say yes.
At the very least the "cruelty to animals" laws should recognise that humans are also animals. Except for people who deny that, of course, who count as vegetables.
Chelle Hope, in reply to
Very well said, Sacha.
Firstly...thank you Martin for this post.
The voices of those who have lived with conditions that others consider unbearable MUST be heard in this debate.
Secondly, before we legislate for the 'right to die'...we must legislate for the right to live.
ALL life must be valued...not just the able, the fit, the well.
When 45% of those surveyed... "supported doctor-assisted suicide for people who were neither in pain nor had an incurable disease but who were permanently and completely dependent on others for their physical needs. " ,
and we have Moz stating that " I just can't see how three people proving round the clock moz-care is a good use of anyone's time.."
methinks there are very good reasons to be concerned that perhaps the value of the lives of those who require a high level of care are yet to be recognised.
At the risk of belabouring a comparison....when we speak about cost, being a burden, contributing little to the community or even basic human dignity....why are the right to die brigade not advocating for recidivist criminals to be given the right to end their lives?
Surely, members of this group have times when guilt and remorse overwhelm them and death seems the better option?
It is the case now that some doctors make personal judgements on the value of a disabled persons life and will refuse treatment...it happens...here in Godzone.
It is the case now that those with high care needs are made to feel worthless by government policy and legislation.
It is the case now that those with high care needs NOT under ACC have no entitlement to funded care....they get funded care at the whim, or not, of a NASC bureaucrat.
There should be absolutely NO debate on 'doctor assisted suicide' until we have legislation in place that ensures those with disabilities have equal rights and equal status as all other New Zealanders.
Moz, in reply to
and we have Moz stating that " I just can't see how three people proving round the clock moz-care is a good use of anyone's time.." methinks there are very good reasons to be concerned that perhaps the value of the lives of those who require a high level of care are yet to be recognised.
You're speaking for other people without regard for what they want. I find that offensive.
You're also misrepresenting what I said. You're welcome to disagree about the value of my life, and when I'm done with it you can have it. But I have nothing printable to say about your twisting my claim about my own life to somehow represent other people's claims about other lives.
Moz, in reply to
why are the right to die brigade not advocating for recidivist criminals to be given the right to end their lives?
Since you've apparently not made the connection, let me state for the record: I think criminals should have the same right to die as anyone else. And I think everyone should have the right to die.
Rosemary McDonald, in reply to
Agreed...we all have the right to die.
So why all the fuss?
The debate? The moralising?
Because, as soon as one person says, " I can't see how three people providing round the clock care is a good use of anyone's time.".... that veiwpoint is out there.
You may be of the the opinion that you would rather be dead than dependant....but what are you implying about those who are dependant?
Not explicitly....but by default?
And yes....every discussion about this issue has the morally superior stating " I would not want to be a burden etc.etc., the decent thing to do would be to die."
I provide round the clock care for someone who under ACC would indeed be entitled to at least tthree full time carers.
No ACC, no entitlement to funding....just me, who has it in writing, from the government, that what I do is worthless and of no value.
The person who is dependant on me?
He tells me he has a good life.
Moz....this is a very personal issue, I respect that, but please read what Martin wrote, and take on board that many people with disabilities (and their loved ones) have very real and well founded fears about so called 'voluntary' euthanasia while there is no secure place for disabled in our society....yet.
Joe Wylie, in reply to
please read what Martin wrote
Martin Sullivan writes:
I couldn’t help thinking “This is precisely the problem. It is people like this, with all their ‘expertise’ who will end up speaking for those disabled people who lack the communication skills or cannot speak once euthanasia is legalised.”
Then he goes on to presume to speak for the entire disability spectrum:
It seems that ‘euthanasia’ comes with just too much baggage; baggage such as the Nazi euthanasia program which became our silent holocaust in which over 200,000 of us perished.
Not everyone blessed with a metaphorical wooden leg chooses to wave it about, or to have it done on their behalf by a self-appointed advocate. For example, two people close to me have intellectual disabilities. Provided they remember to close their mouths around strangers, and they’re not required to sustain a conversation for longer than five minutes, they can for the most part lead ‘normal’ lives.
To expect them to sacrifice something of their privacy in the interests of out & proud disability activism would be severely damaging to the precious ‘normality’ they sometimes struggle to sustain. Nevertheless, by WINZ standards they’re disabled. While they don’t live in denial, they’re only too aware of the corrosive effects of being condescended to, even by people with the best of intentions.
It would be easy enough to write the law such that it could never apply to whatever class of disabled people anyone thought was vulnerable. The point seems to be that wanting to die is a recognised mental disorder, but accepting that you are going to die is healthy and normal.
So if we're going to die soon anyway, but only after great suffering, why does the law force us to suffer? What possible purpose is there? To save doctors from discomfort? Family? Why this one law that forces people to suffer for the benefit of others, when that would always be a serious crime at any other time and place?
Of course, it's a dangerous idea. So are a lot of things in medicine, whether or not you actually need surgery and how much benefit it will be anyway, doctors are often at odds over such matters. Euthanasia would be particularly difficult, but letting people who are not doctors do it seems like a worse idea.
If no doctor will actually push the morphine, so much for that law. But pain reduction is ethically valid, and if there's precious little left but pain, it seems like some of them would find the will if the law allowed, even if only for the last few hours after the family was ready. Arguably that's what they already do, from what I've seen of it.
I wouldn't expect any doctor now to support euthanasia though, as I wouldn't expect any police officer to support extrajudicial executions. It would be bad for your career to say you approve of what is legally murder.
Hilary Stace, in reply to
Joe, the Holocaust is relevant to this discussion. The killings started because a father asked the State to kill his disabled infant son. The doctors and officials thought about it, worked out how to do it and realised it could be done on a large scale. It is estimated that over 200,000 disabled people were euthanised by the Nazis merely because they were disabled. There is now a memorial to them in Berlin, naming many of them. So it is not surprising that Martin mentions this era as a warning.
After the war the Nuremberg Code became the basis of our modern clinical ethics system. However, for many years clinical research still took place on disabled people and children without their consent (as in the well-documented polio vaccine trials).
In mary countries disabled people still have no legal status as people. Their lives are considered worthless.
You dismiss Martin's argument as 'headiness borne of single-issue activism' - if that activism is to promote disability rights, well someone has to.
Joe Wylie, in reply to
Joe, the Holocaust is relevant to this discussion. The killings started because a father asked the State to kill his disabled infant son. The doctors and officials thought about it, worked out how to do it and realised it could be done on a large scale. It is estimated that over 200,000 disabled people were euthanised by the Nazis merely because they were disabled. There is now a memorial to them in Berlin, naming many of them. So it is not surprising that Martin mentions this era as a warning...
And if I were to tell you that all of that was news to me, you'd probably believe me.
Sacha, in reply to
Sacha, in reply to
please go back and read what Moz wrote. Not theoretical but experience-based.
Hilary Stace, in reply to
Joe I'm not sure what you and I are arguing about. I'm just defending Martin as a first time poster on a topic that is close to many people and not easy for most.
Sacha, in reply to
I believe I should have the right to say no. Those who want to should have the right to say yes.
This is the result we need to create.
There's a history to the concerns expressed. The motivation for the Nazi Aktion T4 systematic euthanasia project is relevant:
However, the criteria for inclusion in this program were not exclusively genetic, nor were they necessarily based on infirmity. An important criterion was economic. Nazi officials assigned people to this program largely based on their economic productivity. The Nazis referred to the program’s victims as “burdensome lives” and “useless eaters.”
According to bureaucratic calculations, the state could put funds that went to the care of criminals and the insane to better use—for example, in loans to newly married couples. Proponents for the program saw incurably sick children as a burden on the healthy body of the Volk, the German people. “Wartime is the best time for the elimination of the incurably ill,” Hitler said.
Thank you Martin for this.
I find it both disappointing and unsurprising that your points are being taken to mean something about your motivations and perspectives. Just as non-disabled people have a range of views on this topic, so do disabled people. The views of those supporting euthanasia have dominated airplay, so I fail to see why a disabled person expressing their opposition to this, and saying that this poses risks for our community should attract such outrage. He has, when all is said and done a right to express his views without being shat on for doing so. Can we all "play" nicely boys and girls?
Sacha, in reply to
Just as non-disabled people have a range of views on this topic, so do disabled people.
Recent local news story is one example.
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