Access: Right to die?
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Rosemary McDonald, in reply to
please go back and read what Moz wrote. Not theoretical but experience-based.
I did, and I acknowledged Moz's right to his opinion.
I did not intend to misinterpret/misrepresent what he was saying.
I still hold the veiw (based on experience) that disabled people will be at risk if legislation is passed to allow doctor assisted suicide, voluntary euthanasia...call it what you will.
A C5 tetraplegic goes to hospital with a severe pulmonary infection.
He struggles to breathe.
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".
The tetraplegic's wife sits at her husband's bedside as he continues his battle for air.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.
Six years later the man still lives...and enjoys life.
There is a very thin line between refusing treatment and actively speeding a person's demise....
Imagine doctor no.1 standing at the foot of your sickbed clutching the consent form for the 'blue juice'.
Not offering any hope, any alternative.
Doesn't bear thinking about.
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Sacha, in reply to
I acknowledged Moz's right to his opinion
and his experience.
that's really important. -
Rosemary McDonald, in reply to
and his experience. that's really important.
Of course.
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Joe Wylie, in reply to
You dismiss Martin’s argument as ‘headiness borne of single-issue activism’ – if that activism is to promote disability rights, well someone has to.
A single-issue activist attempts to advance their agenda by dehumanising their opposition. It's a take no prisoners approach that precludes the possibility of negotiation. Acknowledging that advocates of the right to die may be driven by the same common humanity that motivates those who advocate for the disabled might have been a more constructive start to this discussion, rather than pitting the disabled against the supposedly abled.
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Documentary-maker Leanne Pooley talks about her experience of breast cancer and this snippet also rings true for some of us:
I thought I was a pretty strong, independent sort of person but I learned that cancer renders you weak and you have to accept that. It isn't easy to be less than who you think you are but you learn to let your friends and family fill the gap.
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Hilary Stace, in reply to
The post was a personal response by a long-time disability activist to what he saw as an attack on the right of disabled people to speak for themselves, and he was reacting against others negatively labelling and dehumanising them and their lives.
I assumed that being constructive with the opponents of that view was not his aim.
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The last time that the right to die came anywhere near being written into effective law in this part of the world it proved to be the kind of issue that doesn’t divide along familiar left-right lines. In 1995 the Northern Territory’s Rights of the Terminally Ill Act was instigated by then Northern Territory Chief Minister Shane Stone, whose politics were somewhere to the right of Joh Bjelke-Petersen.
Stone’s motivation was personal. He became a born-again advocate of the rights of the terminally ill after witnessing his mother’s final suffering. In his usual draconian fashion Stone pushed the legislation through without a conscience vote. Prime Minister John Howard used his Federal powers to overturn the act within a year of its becoming law.
While Howard appeared to have been motivated by his usual innate conservatism, he gained some unexpected supporters. Caroline Jones, the long-time host of ABC Radio’s The Search For Meaning, outed herself as a closet Catholic when she claimed to be bound by her Church’s teaching that one’s life is not one’s own to take. This came as something of a surprise to the audience she’d gained over the years, as her program had featured a scrupulously non-denominational approach to spiritual matters.
Palliative care was something of a rallying cry among those opposed to the Northern Territory legislation, despite plentiful evidence of its limitations. Yet within a year of the Rights of the Terminally Ill Act being overturned Howard cut Federal funding for palliative care.
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It is sometimes really hard for family members and friends to observe the progress of terminal illness in another person, especially when it is slow (such as with MND) or when palliative care is not optimal. I think a lot of euthanasia advocates have had this experience.
But that is about their own grief, or their own reaction to lack of control of a situation, or loss of their personal power in an unfamiliar system, rather than what might be the best thing for the dying person. If terminal illness and the process of dying is so terrible there would be more advocacy for euthanasia from palliative care clinicians - yet they are some of the staunchest opponents of it.
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Joe Wylie, in reply to
If terminal illness and the process of dying is so terrible there would be more advocacy for euthanasia from palliative care clinicians – yet they are some of the staunchest opponents of it.
I’m sure that counts for something, but I’d imagine that compliance with legal oversight would be as big a factor as any. One of the most sweeping changes that seems to have happened in the so-called developed world over the last few decades has been the legal enforcement of patients’ rights.
In the late 1980s there was an exchange of letters in the Listener about alternative cancer treatment, which culminated in a senior medical academic openly gloating over the death of a man who’d traveled overseas to undergo an unauthorised form of treatment. No doctor would even dream of doing that today.
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A great article, well written. Not everyone will agree, but its a pity you had to put up with some of the sniffy comment that followed
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Moz, in reply to
disabled people will be at risk if legislation is passed to allow doctor assisted suicide, voluntary euthanasia...call it what you will. ... There is a very thin line between refusing treatment and actively speeding a person's demise....
There's also a very thin line between supplying treatment and actively speeding a person's demise. from benign stuff like prostate cancer screening (current stats seem to say that being screen makes you more likely to die) through to radiotherapy and chemotherapy where it's often a gamble as to whether the cancer will actually kill the patient, but the therapy definitely strips years off their lives and sometimes kill people. Not to mention the "I wonder how much morphine to give" guessing that goes on.
My understanding from a number of doctors is that they don't want to be involved because it's a complex, ugly issue with a lot of downsides and very few upsides. But there's no need for a physical health type doctor to be involved in the "prescribe lethal dose" in many cases, just an "understands what they're asking for" certificate from a couple of competent authorities.
It's when you have the physically incapacitated patient that it all gets hard. Someone has to make an active decision about care, and what sort of care, and often there's no consensus. That makes it extremely risky for the doctor who says "put them out of their misery", because someone who disagrees can take legal action. And unfortunately the corpse plays no part in that ("living wills" being at best suggestive once they're applicable AFAIK).
What I object to in the discussion so far is the assumption that the anti-torture people are all about killing off inconvenient others. Frankly, I don't care about those "others" enough to have an opinion. I feel as strongly about our stupid voting law restrictions (that kill people) as I do about stupid anti-euthanasia laws (that kill people) and for the same reasons - it's all about consent. Or in this case, the denial of consent. What I care about a lot is the proposal that I should be condemned to life against my wishes. The threat of that means that I have to kill myself long before I would prefer to, simply to avoid putting the decision in the hands of people who want to see me suffer. Which I hope is an unintended consequence for the anti-euthanasia crowd. But it's also a very real one.
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Suffer, burden, pain, problem, dependent, consent, capacity, fear, death.
All powerful words with very personal meanings.
An underlying issue in the euthanasia debate is that some people want to impose their understanding of the meanings of these words - such as suffering - on others who might not see their situation as suffering.
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Martin, in reply to
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?
I’m sorry Andrew but you’re just going to have to believe disabled people when we say that ‘experts’ views have a habit of prevailing over ours, especially the more vulnerable members of our community. As soon as experts are involved, only one voice prevails – just ask those people who get no choice where and with whom they live; what time they are got up, what clothes they wear and who feeds them and what is fed to them and then what they do for the rest of the day. While these decisions by experts are frustrating, at least they are not deadly! And as you so elegantly blogged in “I Think National Just Broke our Constitution” you know how nasty, vindictive and mean-spirited this National government can be when it comes to spending money to preserve out choice, control and dignity.
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?
The point in the examples you give Andrew are about keeping people alive; physician assisted suicide is about killing people.
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Hillary, there's only one side here that wants to force people to undergo what they personally perceive as pointless suffering. No one is arguing for it to be compulsory, or even opt-out, or easy or quick. If someone wants the experience of gradual dehydration as their dying body begins to rot and call it it a good, bully for them.
The original post raises an important point. Disabled people should not be murdered by their families, nor by the medical community. That would need to be firmly in place in any new law. Abuses should retain severe sanction.But once multiple medical opinion is that a person is clearly dying, why not give them a big-ass dose of morphine if they ask for it? If that's what the dying person unambiguously wants, even if there's a few months or years of gradually increasing pain to enjoy, or whatever.
I haven't seen any reason to deny that. Not here, not anywhere.
Edit: Martin, I understand the past abuses, thank you for raising them. There's things were done with abortion and birth control last century that are also abhorrent, but we do allow women to choose birth control and even consciously terminate a pregnancy now, to kill their unborn children if you will. The abuses of the past do not have to arise in the present. -
Martin, in reply to
Instead Martin Sullivan, with the headiness born of single-issue activism, Godwins his own argument by invoking the holocaust.
Those who forget their history tend to repeat it Joe
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Hilary Stace, in reply to
Except that midwife assisted birth, that ends in death, tends to be referred to the coroner or some other official for investigation.
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Joe Wylie, in reply to
There’s things were done with abortion and birth control last century that are also abhorrent, but we do allow women to choose birth control and even consciously terminate a pregnancy now
I'm sure I'll be swiftly corrected if I'm wrong, but I recall Sacha appearing to make a case here for disability advocates to be given some form of counseling access to women who faced the prospect of giving birth to a Down syndrome child. At the time it bothered me, because it appeared to threaten a woman's hard-won right to control her own reproduction, in much the same way as certain church groups attempt to do. While it may be a long bow to draw, it seems no more so than the claim that liberalising the right to die will lead to a repeat of the holocaust.
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Martin, in reply to
Thanks Martin
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I suppose I'm just uneasy about a medical procedure for which death is the intended outcome. I'm much happier about interventions such as drugs and medical care, which ease a natural dying process. And I worry about who is making the decisions about hastening another person's death and why, and where the power lies.
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And why is it different from euthanasia for baby girls (in certain cultures) because baby girls are of less value that boy babies?
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Martin, in reply to
While it may be a long bow to draw, it seems no more so than the claim that liberalising the right to die will lead to a repeat of the holocaust.
‘Silent’ holocaust Joe, not the holocaust.
There are some cogent arguments that prenatal screening is the new eugenics aimed at the elimination of disabled people in the womb (so the silent holocaust continues). The paper “After-birth abortion: why should the baby live?” (Giubilini & Minerva, 2012) is even more alarming in its advocacy for the infanticide of those born with severe impairment. Above all, it highlights the ableism/disablism of experts which colour their pronouncements. I don’t want those sorts of people making decisions about how and when I am to die – which is what my original post is about and which is likely to happen as a matter of routine once the legal structure for euthanasia is put in place.
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Martin, in reply to
No, physician assisted suicide, would be a medical procedure. Just like midwife assisted birth.
You gotta be kidding Steven.
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Martin, in reply to
There’s things were done with abortion and birth control last century that are also abhorrent, but we do allow women to choose birth control and even consciously terminate a pregnancy now, to kill their unborn children if you will. The abuses of the past do not have to arise in the present.
See my previous response to Joe
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Joe Wylie, in reply to
prenatal screening is the new eugenics aimed at the elimination of disabled people in the womb
While I have no problem with ensuring that any liberalising of the rules governing the right to die should absolutely protect the rights of the disabled, I’m reading that as advocating the privileging of the disabled over the supposedly abled, to the point where women will be compelled, even against their will, to carry a disabled foetus to term.
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Sacha, in reply to
I recall Sacha appearing to make a case here for disability advocates to be given some form of counseling access to women who faced the prospect of giving birth to a Down syndrome child.
My position as a member of the National Screening Advisory Committee at the time Down screening changes were proposed was that pregnant women and their families needed to make an informed decision.
Currently they get bombarded with medical perspectives in a highly-pressured situation (and 90% of the time an abortion is the outcome). However, they are denied knowledge about what it is like to grow up with Down Syndrome, or to be a family with a member who experiences it. They must largely rely on what they already know about disability.
I therefore suggested well-crafted video and written interviews and explanations, supplemented by access to people who could answer specific questions about what it's actually like. Only if people want that.
Our committee's recommendation to the Director-General of Health and Minister also echoed what I wrote above about euthanasia - that investing in broader public disability awareness seemed a sensible counter-balance when you are about to implement policy that reinforces society's stereotypes about disabled people's value. That was of course ignored.
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