Tuesday, November 8, 2011

More bad news on euthanasia from the Netherlands

For those who have continued to insist that there is no such thing as a slippery slope in the Netherlands in its practice of euthanasia, today's news is sobering. A woman with advanced dementia received lawful euthanasia, in a case regarded as a further watershed in euthanasia practice. Read it below in translation as well as a critical article by a Dutch correspondent below it. These two articles are pertinent in the context of the Steph Key Bill in South Australia, which allows euthanasia, but is promoted as merely a protection for doctors who perform it, and not bestowing a right to euthanasia by those who want it.

In Dutch euthanasia law doctors who practice euthanasia must report each euthanasia case, after the act, to a regional assessment committee. The core task of such a committee is to decide whether a doctor has acted with due care, that is, followed all the required guidelines.

These Dutch guidelines are that the doctor:
  • is convinced that the patient request was voluntary and well considered;
  • this convinced of the presence of the patient’s unbearable suffering with no relief in sight;
  • has informed the patient about their health situation and about their prospects;
  • has come to the conclusion with the patient that for this situation there is no other reasonable solution ;
  • has consulted with at least one other independent doctor, who has seen the patient and gave his judgement in writing about the above mentioned requirements for due care;
  • has carried out the ending of life or assistance in suicide in a medically careful way.
The question for any society, perhaps especially rich Western societies, is how it chooses to address suffering. The ‘unbearable’ suffering described in this case involves a fear of going into a nursing home and loss of independence. Fears of becoming a nursing home inmate can be well founded. Few people who have seen their own elderly family members live in such places would want to live there themselves, for good reasons. Are there really no other ways in which such fears can be addressed in a practice of better care? Or do we like to talk about compassion in discussing euthanasia legislation but are too lazy to actually practice it?

Any developments in euthanasia in the Netherlands do travel to other jurisdictions. This country has now taken yet another step closer towards a culture of death where prohibitions even of killing those who can not express their own wishes on euthanasia have now officially fallen. The article’s expressed expectations of many further requests for euthanasia in similar cases, within the mentioned context of a growing and large contingent of people who have dementia, in a society which is practising cost-cutting measures in health care and disability support, can only diminish the inherent dignity of human worth. Where life is not worth much it will be more easily disposed of. 

What kind of future will this lead to? There is an urgent need to look at accepting dependence and vulnerability as inalienable parts of what it is to be human. Losing independence in itself is no loss of dignity. It is the way in which we help others, and in the ways in which we are helped by them, that dignified and worthwhile lives are lived. 

It is clear that nothing stands in the way of performing euthanasia on other people who might be perceived as suffering unbearably and who are cognitively not capable of expressing their wishes. Who's next? Already euthanasia for people with a mental illness is openly discussed by the Dutch as a 'right' that they should have. People with intellectual disability too perhaps? And people with acquired brain injury, autism or some other condition?

The following is a translation of an article that appeared in the Dutch newspaper De Volkskrant, by Maud Effting − 09/11/11 

For the first time euthanasia has been applied in Holland to a patient with advanced dementia. The 64-year-old woman had indicated for some time that she wanted this, though she could no longer express her wish to die clearly and her mental capacity and reduced significantly. Nevertheless her euthanasia was approved (after its performance) by the official euthanasia assessment committee.

The woman died in March of this year. This case can have far-reaching consequences for the practice of euthanasia in the Netherlands. This means that patients who lose their mental capacity can still have euthanasia under certain circumstances, so says GP Constance de Vries from Munstergeleen. She was involved in the case as a 'SCEN'-doctor, who is a consultant as a second medical opinion in euthanasia requests.
The law requires that the doctor has to be convinced that the patient's request is voluntarily and carefully considered. In this case the patient had made it clear to her GP from the beginning that she wanted euthanasia when the time came that she had to go to a nursing home. The prospect of losing her independence and no longer be able to recognise her children was said to be a nightmare for her.

She had put these wishes in writing in a euthanasia declaration at a time when she was still clear minded. After that she had regularly repeated her wishes to her GP, with whom she had a close relationship. Her husband and children supported her decision.

Up to this time euthanasia in the Netherlands had only be applied to people who were in the beginning stages of dementia. Doctors only dared act on requests of patients with whom it was still possible to have a conversation.

 Remembering shreds of her motivation

In the last months of her life the 64-year-old patient could only remember shreds of her motivation (in asking for euthanasia). All the doctors said it was clear that she was suffering: she was confused, angry, and cried a lot. In every conversation with the doctor she said that she would rather die than go to a nursing home.

The GP consulted a number of other doctors. One SCEN doctor judged the case negatively. He agreed that she suffered unbearably but decided that he could not check whether her request was voluntary and well considered. The second SCEN doctor did agree that euthanasia was possible. Because of the sensitivity of this case, it has been considered by all five of the regional euthanasia assessment committees. In August they judged that the GP had acted with due care.

The committee found that, through many discussions with the patient, he had been able to form a clear picture of what the patient considered to be unbearable suffering. This was confirmed by her written euthanasia declaration. In addition, be it in unclear terms, she persistently signalled her wish to die till the last. 

Doctors are very reticent with euthanasia in case of dementia. Last year euthanasia was applied 21 times with patients with dementia. Before that time this hardly ever happened. The expectation is that the number of requests will increase significantly. The number of Dutch patients with dementia is estimated to reach 500,000 in 2050.

Her husbands and children supported her decision.

A second article on this euthanasia topic was published in the same edition of the newspaper which is also reproduced here in translation.

Marie-Jose Calkhoven − 03/11/11, 14:34

Contrary to suggestions of de Dutch Society for Voluntary Euthanasia (NVVE), made in its advertisements, euthanasia is not a right that can be demanded, says therapist and author Marie-Jose Calkhoven.
The NVVE is engaged in a national campaign for self-determination declarations. The television advertisements which can be seen and heard on regional television revolve around a do-not-resuscitate pendant, a non-medical-treatment declaration and a euthanasia declaration.

The fact that the NVVE campaign is contributing to awareness about dilemmas during dying is sensible. At this time where technology allows many life-saving procedures, it is good to weigh up carefully where are an individual's boundaries for medical intervention. Unfortunately there are significant concerns about the way in which the NVVE is conducting its campaign. In particular the advertisement about the euthanasia declaration is a low point. In it a teenage girl tells of her grandfather who chose for euthanasia. “Perhaps it sounds strange “, she adds , “ but when the time comes, that's what I want to do.” After which a male voice-over adds the global message :” With an NVVE self-determination declaration doctors and loved ones know what you want, because dying with dignity, that is completely normal isn’t it!” ("doodnormaal")

What is wrong with this advertisement? First the tone. The lobby-like way in which death through euthanasia is promoted, is eerie. euthanasia is recommended as if it is the latest iPhone, which you must absolutely have. Through this approach the NVVE creates the image of euthanasia as an ‘individual (consumer) right.’ This suggestion is not a contribution to a correct and realistic understanding of euthanasia law, which was developed to protect doctors, not to give citizens rights.

 When a doctor supports a self-chosen death within a strict framework of law for guidelines, he will be immune from criminal prosecution. In other words people may request a doctor to perform euthanasia, but it is not a right that can be demanded, and therefore should not be sold as such. There are too many people who assume that everything is fine with their euthanasia declaration, while its practice appears imperfect. To receive a deadly injection is a complicated matter, including when by your own request.

Human decline

 A second problem lies in the connection made between the terms ‘euthanasia’ and ‘dying with dignity.’ Through this connection it is suggested that other forms of dying would necessarily negatively affect human dignity. It is clear that the NVVE has difficulty with human experiences of decline. In many of its publications illness, dementia, wheelchair dependency, and loss of independence are mentioned alongside a ‘diminished quality of life.’  

In this sense the NVVE does not only strive for a ‘good death’, but also contributes significantly to a negative image construction of ageing, illness, and disability. The natural processes of human decline and dying process are painted as undignified, where the only way for release from them is in an early death by means of euthanasia. The NVVE thus contributes in large measure to the medicalisation of death and further dependency on medical intervention.

A third critique concerns the campaign as a whole, where the NVVE makes no distinction between self-determination declarations within the framework of medical interventions (like the do-not-resuscitate pendant and no treatment declaration) and a declaration about euthanasia. That is disappointing and also confusing. It appears as if all these instruments exist in equal classes, which is not so. Medical self-determination declarations put boundaries around interventions which a doctor may lawfully apply under life-threatening situations. The declaration releases the doctor of his duty to act in a life-saving manner and therefore lets death more easily arrive.

The declaration for euthanasia on the other hand encourages medical intervention and makes the doctor co-responsible for the arrival of death. By making active euthanasia equal to the refusal of medical treatment, the NVVE normalises and propagandises a choice for euthanasia, while it is especially important not to do so. The killing of a human being is no sinecure, including when surrounded by protocols and self-determination declarations. Therefore it has to remain an exception and no common right which can be demanded.

It would be a good thing for the NVVE if it would promote euthanasia less as a normal death, but instead try everything in preventing any necessity for requesting euthanasia.

Do-not-resuscitate pendants and a declaration not to treat can contribute to this, as can good care. In this way euthanasia can remain available where really necessary, and not as a normal means to obtain a ‘death with dignity.’

Proliving provides the translation of this article without endorsing all of its views. Do-not-resuscitate pendants as a form of advanced directive for example are a complex area fraught with difficulty. Nor does Proliving endorse a concept of euthanasia ‘where necessary only.’ This article is interesting however in offering some dissenting and cautionary views in the Netherlands which has been encultured to support euthanasia and its ongoing ‘progress’ down the slippery slope. Not only people with dementia are on this slope. There is a strong and growing Dutch movement for euthanasia for people aged over 70 who feel they have ‘completed life.’

To act on a person’s wishes to die by euthanasia because of a fear of going to a nursing home and of losing one’s independence is an indictment of an uncaring society. Why do people not want to go into a nursing home? Because in no small measure the care received in such places is undignified, and places one at risk of illness and early death. But for some reason we do not put the spotlight on better care and find it easier to reach for ways to deliver death as deliverance from human-created suffering. The lazy society’s way to practicing ‘compassion.’ A society which cannot accept dependence and vulnerability as normal parts of human life will never be a civil one. People with disabilities will be especially at risk.

Monday, September 19, 2011

John Moxon on Q & A on euthanasia

ProLiving supporter John Moxon gave a good account of a disability perspective on the issue of euthanasia in the ABC program Q & A on 19th September. The program covered a variety of issues but John's question on euthanasia fueled some debate. Go to the 'euthanasia' tab on the right next to the video window to cut to the chase!

Thursday, July 28, 2011

Steph Key Euthanasia Bill passes second reading

We have just heard that South Australia's Steph Key Bill passed its Second Reading stage in the lower house and has been referred to committee for final amendments. It will then go to the upper house. This stage passed on the voices without any MP calling for a division which means there is no Parliamentary record of who voted which way on this very important Bill.

Further news will be posted as it comes to hand.

Wednesday, July 6, 2011

The Rasouli Case: Withdrawing life support without family consent


Joan Hume

In a recent landmark judgement in the Ontario Court of Appeal, judges decided that doctors do not have the unilateral right to withdraw life-support from a patient. 

The decision, which could have far-reaching implications for the rest of Canada, was based on the Rasouli case in which doctors from the Sunnybrook Health Sciences Centre in Toronto sought permission from the court to remove life-support from Hassan Rasouli whom they claimed was in a persistent vegetative state with no hope of recovery.

The Rasouli family not only disagreed with the medical diagnosis but also refused permission for the doctors to remove Mr Rasouli’s ventilator and feeding tube.  The Rasoulis, originally from Iran, argued that removing his life support would violate his religious beliefs as a Shia Muslim.  Furthermore, Parichehr Salasel, Mr Rasouli’s wife, was a doctor herself and maintained that her husband, who had contracted bacterial meningitis after surgery to remove a brain tumour, was still able to communicate with her and was making some progress in his recovery.

The saga began in October 2010 when Hassan Rasouli, a 59 year old mechanical engineer, attended Sunnybrook Health Sciences Centre for surgery to remove a benign brain tumour.  Following the operation, he developed bacterial meningitis and ventriculitis (inflammation of the ventricles of the brain).  The infection caused a severe brain injury as well as damage to the brain stem and the spinal cord causing Mr Rasouli to lapse into a coma thereby requiring ventilator support and a feeding tube inserted into his stomach.

After five examinations, Mr Rasouli’s doctors Cuthbertson and Rubenfeld decided that he was in a persistent vegetative state and that they would withdraw all treatments, including ventilation.  This action would inevitably result in Mr Rasouli’s death.  Mrs Rasouli refused to consent to this course of action.

The doctors responded by attempting to have Mr Rasouli transferred to another Toronto hospital.  Mrs Rasouli then applied to the court for an injunction to prevent the hospital and the doctors from withdrawing her husband’s life support.  She believed that her husband still showed signs of movement and awareness of his surroundings.  The family’s religious beliefs valued respect for, and the preservation of life until all obvious signs were gone.

On the other hand, Doctors Cuthbertson and Rubenfeld asserted that they were not obliged to continue to provide treatment which they thought had no benefit even if the patient or his substitute decision –maker did not consent. In short they insisted on their right to withdraw life-sustaining treatment without consent.

The case was initially heard in February/March 2011 by Justice Himmel of the Superior Court of Justice, Ontario.   She concluded that an injunction was unnecessary because the doctors were obliged to seek consent for their actions through the Consent and Capacity Board * if the substitute decision maker would not consent to withdrawal of life support.

This decision was appealed by Sunnybrook Hospital and the doctors. The Court of Appeal, however, upheld Justice Himmel’s decision on the 29th June 2011 maintaining that the withdrawing of life-support constituted “medical treatment” and required the consent of the patient’s family.  This ruling means that doctors will not have the sole right to decide end-of-life decisions but will need to consult the family and the Consent and Capacity Board.

 *     The Consent and Capacity Board is a group of lawyers, psychiatrists and citizens in Ontario who are appointed in the province to resolve disputes such as the Rasouli case between the doctors and the family.  Ontario is the only province in Canada with such a jurisdiction which usually deals with cases within a week after application.

Sunday, April 3, 2011

Letter to South Australian Lower House

This is a letter that ProLiving has sent to all South Australian Lower House MP's:

Dear Member,                                                    4th April 2011

We are writing in reference to the Criminal Law Consolidation (Medical Defences End of Life Arrangements) Amendment Bill 2011

We ask you to oppose it.

We constitute ProLiving, a collective of Australians who directly experience disability and chronic illness in their lives. We advocate a strong public focus on good care and support, including palliative care, as a superior way forward in supporting vulnerable people and addressing suffering.

In debating this Bill we are asking you to carefully consider our disability perspective on euthanasia and physician-assisted suicide, as found here in our Disability Position Statement On Euthanasia and Physician-assisted Suicide . Twenty percent of your electorate has a disability.

A disability voice on end-of-life issues has been largely absent in Australia - for good reasons:

It is hard to argue that each of us possesses equal human worth to anyone else, when society still widely views us as inferior. Notably, government itself has styled this state of affair as one of social apartheid.

It is hard to argue because many of those things that we live with daily, involve the sort of intimate care and support, that many euthanasia proponents try to escape.

We don't experience indignity when receiving good support. Euthanasia proponents cannot conceive of that.

It is hard to be heard when our perceived 'quality of life' is painted as unbearable, while we want to live life.

It is hard to be heard when your disability involves cognitive impairments, isolation and marginalisation, especially while we know that euthanasia supporters want to do away with such experiences of life by ending it.

It is hard to argue as when we argue for the fair share of control, self-determination or autonomy that society withholds from us in trying to live our lives, euthanasia proponents use exactly those points in arguing for a right to die, which, in our case might become an obligation.

It is hard to be heard when disability advocacy has been unsupported, its funding slashed by the same government that might now sanction killing for reason of ‘intolerable ‘suffering.’

As you must know many people with disabilities remain highly vulnerable in our society. We have many reasons to believe why that vulnerability is important in order to vote against euthanasia Bills, including the Steph Key Bill. You will find those, backed by evidence, in our Disability Position Statement on Euthanasia and Physician-assisted suicide in Australia - March, 2011. We urge you to read it.

While we appreciate there is a technical difference between decriminalising euthanasia, as the Key Bill attempts to do, and legalising euthanasia, the end result is the same. The door is opened to uses of such legislation in respect to those whose life experience might be seen by others as suffering.

With respect to the Key Bill specifically, we note that

Terminal illness is not a requirement;

The eligibility criterion of "suffering from an illness, injury or other medical condition" could easily include disability experience such as for example that of non-terminally-ill Christian Rossiter in WA, as the Hon Parnell acknowledged in regard to eligibility criteria under his failed euthanasia Bill;

What is a "reasonable response to the suffering of that person" is highly subjective, untestable and offers no remedy to the person who has undergone euthanasia;

The Bill does not qualify what "reasonable responses" are, nor what "quality of life" is while the reality for many people with disabilities is filled with inadequate responses to their core human needs, including showering, dressing, and, yes still, segregation. Circumstances that should be remedied by social support, rather than death.

We also know that the hospital system in South Australia is unable to cope and that 56% of responses to the federal government's Shut Out report that disability services themselves are a problem to living their lives well.

Under these prevailing circumstances the defence of having used all "reasonable responses to the suffering of that person" is powerless in avoiding people with disabilities, such as Anne McDonald was, succeeding in applying for euthanasia because what society offers them, in her words, “ is awful.”

While the Bill includes a defence against homicide, for euthanasia-performing doctors where "palliative care measures have not relieved the person's suffering to a level acceptable to the person" we note an absence of universally available, good quality palliative care, as noted by Palliative Care Australia.

Under this Bill doctors will have a nigh unassailable legal defence when performing euthanasia. Many people with disabilities depend on doctors, not only for their health but also for many social benefits, allowances and subsidies where doctors are gatekeepers. Given research showing a high level of negative medical attitudes towards disability, the roles of healer, gatekeeper and life terminator provide such tensions and conflicts of interest that the doctor-patient relationship is severely eroded by it. This further adds to a high vulnerability of people with disabilities.

We regard it as a highly unsavoury - and undignified - spectacle that the ongoing quest for euthanasia legislation, brings out the worst elements in our society, witness Dr Philip Nitschke reportedly already “scouting” for a suitable site for a death clinic in Adelaide. Instead an explicit focus on the best quality and availability of support that people need to live well, would improve the nature of our society where all are included.

 A South Australian euthanasia Bill, including through a 'decriminalisation' backdoor is of relevance to all Australians with disabilities.

This Bill will put pressure on people with disabilities to end their lives so as not to be a burden on their loved ones, their carers or the state.
It tells them that even though we live in one of the wealthiest nations on this planet we prefer insisting on individual rights to be killed, in the knowledge that in doing so, we put people with disabilities at even greater risk than they are already.

It tells them that indeed they do not count.

This Bill is all about protecting doctors, not us.

The onus is on Members of Parliament discussing any Bill concerning ending of lives that they prove beyond doubt that changing the status quo in this way will not make presently vulnerable people even more vulnerable.

The Steph Key Bill fails a key ethical test: “First do no harm.” It is an irresponsible, a-social, unjust piece of legislation, purporting to show ‘compassion’ to a select few. The ‘social’ in social justice means a community-wide regard and compassion for the wellbeing and safety of vulnerable people. Not an abject disregard of their interests where individual choice to ‘choose one’s death’ trumps their right to choose to live it.

ProLiving asks you to search your mind and your heart with such disability perspectives in mind. Any vote on a euthanasia Bill tests our parliamentary resolve on whether we are to be a truly civil society that protects and advances the lives of its most vulnerable members, or a careless one. Again, please read our full Disability Position Statement On Euthanasia and Physician-assisted Suicide or request a copy of a PDF document version at proliving@hotmail.com

ProLiving thanks you for familiarising yourself with this disability perspective and we will follow your debate with interest.

Thank you. 


Dr Erik Leipoldt PhD      
Joan Hume OAM, MA,BA Dip Ed        
John Moxon BA(Hons)

Wednesday, March 30, 2011

South Australia's Steph Key's Euthanasia Bill and disability

Although only introduced days earlier, Private Member's Steph Key's Criminal Law Consolidation (Medical Defences - End Of Life Arrangements Bill 2011 passed its second reading stage in a session with a complete absence of Members of Parliament, known to oppose euthanasia. Whatever the reason for this unprecedented haste with a Private Member's Bill, it means disenfranchisement of the electorate. In particular disenfranchisement of a disability voice.

Interestingly, the Key Bill is backed by the same Health Minister who is presiding over a chaotic health system, where hospitals are filled to 125% capacity and unable to cope. ProLiving advocates full attention to good quality care and support, not a focus on ending lives.

The Key Bill is based on a subtle basis of 'decriminalisation', where a doctor performing euthanasia  would still be criminally liable, but if performing according to the Bill's criteria, would be excused. The difference in outcome is hard to see: isn't it just euthanasia by another name? Of course it is.

So, what of the criteria in this Bill? Do they provide a safeguard to misuse affecting vulnerable people? Unfortunately not. Like in the defeated Parnell Bill, there is no requirement for a terminal illness. A doctor will be excused when perform euthanasia when  they...

(b) ...believe[d]  on reasonable grounds that the person was an adult person of sound mind who was suffering from an illness , injury, or other medical condition that irreversibly impaired the person's quality of life so that life had become intolerable to that person (the qualifying illness); and

(c) the conduct to which the charge relates occurred at the express request of the person; and

(d) the conduct to which the charge relates  was, in all the circumstances, a reasonable response to the suffering of the person.

Nothing about a requirement for a terminal illness.

As many people with disabilities know, and which the research supports, is that doctors often have a negative view of our 'quality of life.'
And what it is 'reasonable', or indeed judged as 'all the circumstances' will be quite different from one person/doctor to the next. If, after the fact, an act of euthanasia would be judged to have strayed outside the yawning barn doors of these criteria, presumably the doctor will get a slap on the wrist as she no doubt acted out of a sense of 'mercy.' And the illegally euthanased person, well... uh... Maybe we can think of something.
As Mark Parnell MP told the SA Parliament when unsuccessfully putting his euthanasia Bill, someone like non-terminally-ill quadriplegic Christian Rossiter, had he been an SA resident, could have availed himself of his Bill. ProLiving sees no reason why the Key Bill does not allow exactly the same latitude.

Because of the creative Parliamentary process that this Bill has undergone, it is very possible that this Bill will soon be passed into law. This is not just a matter for South Australians. What happens there will be a bell whether for it happening in other States.

Tuesday, March 29, 2011

A Disability Position Statement On Euthanasia and Physician-assisted Suicide

A disability perspective on euthanasia 

Disability Position Statement on Euthanasia and Physician-assisted suicide in Australia - March, 2011

• We are Australians who live with a disability (1) or chronic illness, directly, and/or by our close involvement with people with disabilities/chronic illness, as family, friend or ally.

• We are concerned that euthanasia and physician-assisted suicide (PAS) (2) legislation may be introduced in this country that allows the intentional shortening of life, including on grounds that life with disability is not worth living.

• We oppose the introduction of euthanasia and physician assisted suicide legislation because it is inherently wrong to end a life in answer to suffering (3). This is especially so in absence of the many things we, as a rich society, can do to alleviate suffering.

• We believe that much ‘suffering’ is not primarily caused by a person’s disability or medical condition. It often arises from inadequate care and support, contributing to requests for euthanasia or PAS.

• We believe that state-sanctioned euthanasia and physician-assisted suicide poses great risks to life and well-being of people with disabilities, in particular to highly vulnerable (4) disabled people. It would undermine any social climate of support and life-giving values that they need to live good lives.

• It is a matter of social justice for the status of people with disabilities in our society to be duly considered in this matter (5).

Yes to good quality care and support
NO to euthanasia and physician-assisted suicide

Pro-Living calls for…

A halt to introduction of euthanasia and physician-assisted suicide Bills and the development of social policy that:

• Meaningfully supports people with disabilities and those who assist them, to live good lives (6) in the community, where good quality community-, health- and palliative care and service is widely available;

• Affirms disability as a normal part of life in all its diversity;

• Affirms the human worth of people with disabilities as equal to all other human beings;

• Recognises their real needs, takes responsibility for meeting them, does so competently, and in participation with the focal person with a disability, to the fullest extent.

Pro-Living Endorses…

• The Palliative Care Australia Position Statement on Euthanasia and Physician-assisted Suicide (7) with the proviso that acquiring any disability does not of itself indicate “an approaching end of life”.

• The Australian Disability Strategy’s (2011) stated intent of full inclusion of people with disabilities into society, based on the UN Convention on the Rights of Persons with Disabilities. However, ProLiving believes that the acknowledgement of people with disabilities as interdependent should be a guiding principle, rather than regard pursuit of independence as primary.

Pro-Living Believes…

The role of quality disability support is critical
Much community interest in voluntary euthanasia involves fears of pain and suffering, especially that of  “loss of dignity” through increased dependence on others, sometimes through the most basic of assistance, such as with toileting, showering and dressing. Where good quality support is provided, many people with disabilities live well with those realities on a daily basis (8). We are not claiming that therefore everyone should do likewise. We merely point to the fact that good quality care is a potent remedy against suffering and fears of suffering and preserves dignity. It contributes to a civil society where those who embody fears about aspects of life, such as fragility, loss of personal control and dependence, are treated as inherently worthy.

Fear of disability may lead to euthanasia
Because of the existence of such fears in our community, and the generally low social worth accorded to people with disabilities, life with disability is easily conflated with that of meaningless, and unbearable suffering. A low ‘quality of life’ is often assigned to living with a disability. This perception makes them vulnerable to being viewed as eligible for euthanasia and physician-assisted suicide, rather than call for good care and support.

Fear of inadequate care and support underlies some euthanasia requests
Fears of a presently inadequate care and support environment, for example ‘ending up in a nursing home’, or ‘stuck on a tube’, also underlie community support for laws that allow the intentional ending of life under such circumstances. The causes of these realistic fears are human-made. They must be addressed at that level by attention to the development of widely available, quality care and support.

About access to quality care and support
We acknowledge that in an imperfect world there may never be enough care and support to address all suffering. At the same time we assert that our wealthy country can and ought to do much more in offering quality care and support than it presently does. By this we do not primarily mean providing more money. We aim for the development, in genuine participation with disabled people and their supporters, of the best possible quality approaches to meeting their needs. Without such quality, and available support in place, it is irresponsible to legislate for euthanasia and PAS as we presently do not attend to all the reasons for people requesting euthanasia. "Unrelievable suffering?"

There are no effective safeguards against abuse of legalized euthanasia and PAS
Long accepted and legal euthanasia practice in the Netherlands (9) and in Oregon (10), as well as more recently in Belgium (11), give no reason for confidence in believing that euthanasia and physician assisted suicide can be properly regulated. To the contrary, they show the inevitability of a widening of eligibility criteria for assisted death beyond terminal illness, beyond ‘pain’, and beyond the person’s own autonomous request. Assisted by expert advice, parliamentary inquiries in the UK, Canada and US have all concluded that effective safeguards are not possible (12).

So-called ‘narrow’ euthanasia Bills, focused on terminal illness and pain, are no safeguard. They are merely a foot in the door to wider criteria, prompted by inevitable calls for additional ‘suffering’ to be treated with ending of life, as the many attempts for such widely constructed Bills show (13).

Illegal euthanasia is no rationale for legalization
Undoubtedly illegal intentional ending of life where life is considered not worth living in our healthcare institutions is happening today (14). We believe that the answer to this situation is to pay attention to better quality and safeguards in care, and safeguards against abuse, not to sanction medically assisted suicide by legalising it.

Changing the doctor-patient relationship
If choosing to have medical assistance to end one's life becomes a legal option it will have to presented as an option to people with chronic illness or disability who meet the requirements, as their right. Such an offer from health professionals would dramatically change the doctor-patient relationship and our dependence on their medical support in living our lives in good health. Many people with disabilities also depend on doctors for many social benefits, allowances and subsidies, where doctors are gatekeepers. Given research, showing a high level of negative attitudes towards disability, the roles of healer, gatekeeper and life terminator provide such tensions and conflicts of interest that the doctor-patient relationship is severely eroded by it. This further adds to a high vulnerability of people with disabilities.

Putting us out of their misery
Under a requirement of being offered euthanasia, as a legal option, our lives as disabled people would be contingent on our will to keep living in the face of the possibility that carers and family members may be thinking that we should take the option available, and our fear that we should put ourselves out of their misery in having to cope with us.

Euthanasia undermines civil society
Huge and unprecedented social, environmental and economic changes are upon us, in the form of the effects of climate change. In a society under pressure, where the response to suffering is sanctioned as killing the sufferer, presently highly vulnerable people are increasingly at risk of being treated as cumbersome, unproductive burdens, beginning with a reduction in their entitlements from the public purse, and ending with an obligation to remove themselves from the planet. On the other hand, a truly caring society, with an eye for the realities of dependence, fragility, and limitations in life, will be inclusive and socially sustainable.

Equal human worth
All people with disabilities are equally worthy to any other human being, possessing a meaningful and purposeful life by virtue of their own potential to grow as a human being, whether or not the nature and rate of that growth or its potential can be readily discerned. They should be treated accordingly, in the best spirit of care.

Disability is a normal part of life
Disability is inherent in the diverse experience of the human condition. Anyone of us appear on a scale from dependent to ‘independent’, rational to non-rational, able to less-able at any one time in our lives. A pro-living disability perspective on euthanasia is therefore relevant, and of value to all.

Autonomy, choice and independence
Much of the euthanasia debate revolves around rights to exercising personal choice. While it is true that people with disabilities are trying to rise up from very low levels of personal autonomy and choice, it is quite another thing to let respect for these principles decide in favour of euthanasia. Especially when they are being denied autonomy and life choices in a range of important areas. Many people with disabilities need better and real choices about needs like health, accommodation and work: a better life balance in other words. Independent living in disability means living in an ordinary home, with support, in a community: enjoying relationships, not being isolated. Many people with disabilities are limited in their capacity to be an autonomous human being because of cognitive impairments or mental illness. This renders autonomy a principle of limited value in euthanasia. It also means that such people with disabilities, who are thus impaired in judgment, are vulnerable to involuntary or nonvoluntary euthanasia by those who want to address suffering through euthanasia in a broad sense. Autonomy, like independence, is actually an illusion in the lives of many people with disabilities (15).

Engagement, not polls
Currently the debate is driven by polls that ask quick, simplistic questions on complex issues, involving end of life support. Disability, as is death, dying and responses to them, are mostly poorly understood by the community (16). A variety of ways of engaging with those realities must be explored, in the interests of a meaningful debate and ongoing safeguard to human wellbeing. No legislation should be passed on uninformed, uneducated assumptions.

Some context
While some progress has been made, a broadly socially devalued status for people with disabilities in Australia exists. This has resulted in their exclusion from many pursuits that are regarded as normal in our country. These include activities that people in the community typically do, for example, work, attend school and university, participate in social activities, maintain familial relationships, live in regular housing, and use public transport. Those whose impairments raise the greatest challenges to participating in these ways, such as some with significant mental illness, cognitive impairment and dementia, are among those with the highest vulnerability to abuse and covert life-ending now. Under any euthanasia law they would be more so, sooner or later.

Aside from vulnerability through their exclusion, people with disabilities are among groups in Australian society that are highly vulnerable to isolation, neglect and abuse. Negative assumptions about (people with) disability are endemic. Hate crimes against them continue (17). Their voice is rarely heard and good disability advocacy is under-supported. Many lack the adequate care and support needed for them to live good lives and reflect their human worth as equal to anyone else. The Commonwealth Government’s Shut Out report (2010) (18) for example found 56% of its respondents revealed disability support services themselves presented “barriers” in their lives. Many are still excluded from work, often cannot get good support and live in poverty.

More than half the submissions received (56 per cent) identified exclusion and negative social attitudes as critical issues. People with disabilities and their families, friends and carers reported daily instances of being segregated, excluded, marginalised and ignored. At best they reported being treated as different. At worst they reported experiencing exclusion and abuse, and being the subject of fear, ignorance and prejudice.
(Shut Out report (2010), p.7)

Proponents of euthanasia and physician-assisted suicide often characterise disability experience as unbearable suffering and a burden that should by extension be eligible for treatment by euthanasia (19). Where people with disabilities do suffer, this is often the result of their social exclusion and inadequate care and support. Their suffering is not primarily, or inherently found in the nature of their impairments, as it is often misrepresented. Such realities make people with disabilities highly vulnerable to effects of legalized euthanasia (20).

Impairment is a normal part of the human condition. Currently some one in five Australians has some sort of disability. This means not only that anyone is prone to acquire a disability at any time but that those factors that are part of disability experience are equally valid for any of us.

Until Australians are assured of the best palliative care, community services and advocacy, we will not truly know the extent to which suffering can be relieved.

...the lives of many people with disabilities are awful. (...) [O]nly when we improve the quality of the lives of those people will we be able to ascertain whether they want euthanasia because they think life with a disability is worthless or because they think it is awful (Parsons & Newell, 1996, p. 54 , reporting Ann McDonald’s view on euthanasia. Anne lived in appalling institutionalised conditions as a child with disability).

We have reason to fear that a medical view of disability still persists (21), while that same medical, and allied, professions are often gatekeepers to disability entitlements and play a central role in euthanasia. At the same time there is evidence of substantial emotional and psychological damage to doctors themselves when participating in euthanasia (22). This is not a sign of a socially ‘good’ practice.

A growing application of market-economics to community services reduces the notion of heightened vulnerability of many people with disabilities, as arising in significant part from effects of negative attitudes, to one of ‘market failure’. This concept results in values-free financial and managerial remedies to such failure, letting those in charge off the hook in addressing attitudinal causes and quality in service. A business-like focus on effectiveness and efficiency in meeting ‘demand’, results in cost-benefit analyses of service where genuine needs are not necessarily met.

A joining of a medical view of disability and a market view of life are serious threats to the lives and wellbeing of people with disabilities, when they not meet a medical benchmark of ‘quality of life’, or the primarily valued status of contributor to the economy.

An ageing population, increase in disability, and over population are developing as significant problems. So are the emerging social, environmental and economic effects of climate change. We have reason to fear that in a culture that accepts euthanasia and PAS as legitimate responses to suffering, such developments will put further pressures on good care, support and rights to life of such people as ‘unproductive burdens.’ (23)

Our society is at a crossroads in deciding whether to emphasise our culture as one that cares, or kills.

Reference Points

Making statements about end of life issues carries responsibility. ProLiving therefore makes every effort to  support its arguments with evidence - something too often lacking in the high emotions involved in this debate. While the issues are seldom black and white and involve personal values, empirical and anecdotal information does help. The reference points provided here are not intended as exhaustive.

We understand ‘disability’ as created from the interactions of impairments (physical, cognitive, mental, sensory), social and personal values and attitudes and environmental barriers. This understanding is compatible with view of disability taken in the UN Convention on the Rights of Persons With Disabilities (UNCRPD).

Furthermore we are not orthodox on a particular ‘correct’ term describing people who are disabled in the above described interactions. We use “people with disabilities”, “disabled people” and “people with disability” interchangeably in this position paper. They are not pejorative and everyone knows what they mean.

“Euthanasia” and “physician assisted suicide” can be treated as having distinct meanings but can also be used interchangeably. Either can be done or facilitated by a medical doctor, allied health professionals, like nurses, or family members. Furthermore one could describe sub categories of active or inactive, voluntary, involuntary or non-voluntary euthanasia, where it usually, but not necessarily carried out by a physician, whether one terminally ill or not. The term “mercy killing” is also used.

In this position paper, euthanasia and physician assisted suicide are both covered by this definition:

An intervention or non-intervention by one person, to end the life of another person, who is terminally ill, for the purpose of relieving suffering, with the intent of causing the death of the other person, except where the primary intent is either to provide treatment necessary for the relief of pain or other symptoms of serious physical distress, or non-provision or withdrawal of treatment is justified, in particular, because there is a valid refusal of treatment or the treatment is futile. Somerville, M.A. (1993). The song of death: The lyrics of euthanasia. Reprinted from The Journal of Contemporary Health, Law and Policy, 9, 10–76.

Euthanasia is usually proposed as an act to address suffering. Such suffering can be identified as pain, futile medical interventions, fear of loss of dignity, existential pain or even being ‘tired of life.’ Whereas euthanasia proponents may use disability experience as suffering which warrants a right to euthanasia, the vast majority of people with disabilities see their experience as just a part of the variety of life. That experience does not call for euthanasia but for good support.

All human beings are vulnerable. A bus could hit, illness could strike. One might be sacked. People with disability are often much more vulnerable to ill effects on their health, personal safety, employment, housing, through combined effects of impairment, social attitudes and environmental barriers. This follows from adopting the above-described definition of disability. A large body of research exists, describing their grossly disproportionate collective experience of exclusion, abuse, neglect, poverty, ill-health and incarceration. Whereas “dependent” or “vulnerable” is at times used as a pejorative label, heightened vulnerability for disabled people is a fact of life and should be understood for its causes. Any pejorative use should be addressed at the level of those using it in this way.

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

A ‘good life’ for people with disabilities means having opportunities in being supported towards achieving one’s individual potential to be the best one can be and to minimize harm to the person. This includes being part of a community or communities, involving a sense of belonging and contribution, living, working and playing - being fully welcomed - alongside everyone else. A good life is not a segregated and congregated life.


Gill,G. (2001). Divided understandings: The social experience of disability. In Albrecht,G,L.,Seelman,K,D., & Bury, (Eds.). Handbook of disability studies. Thousand Oaks, CA: Sage Publications.

See also
Rapley,M. (2003). Quality of life research: a critical introduction. Sage Publications. London.

See comments expressing concern of The United Nations Covenant on Civil and Political Rights Concluding observations of the Human Rights Committee : Netherlands. (2001). Inter alia, about inability to regulate euthanasia, euthanasia for newborns and children.

Furthermore, Dutch regulations have gradually widened to include people who are mentally ill, have beginning dementia, are newborn babies with disabilities and extended a right to euthanasia from age 12. Now a large citizens initiative around a right to euthanasia when ‘tired of life’ from age 70, is pushing the boundaries even further.

See Jochemsen,H. (2007). Recent developments in the euthanasia debate in the Netherlands.  ;Ms Els Borst, the Minister responsible for euthanasia supports a ‘tired of life’ rationale: Dutch Minister favours suicide pill 

Jochemsen,H.; Keown,J. (1999). Voluntary euthanasia under control? Further empirical evidence from The Netherlands. Journal of Medical Ethics, 25,1, 16-21. This study concluded that voluntary euthanasia in the Netherlands remains beyond effective control.

Around 1,000 cases of nonvoluntary euthanasia, through not being competent to consent, were reported in the first two government reports on euthanasia in 1991 and 1995. The government’s third report made it clear that it was the patient’s responsibility to make an advance direction NOT to have euthanasia, in the event of suffering and being incompetent. See The Linacre Centre for Healthcare Ethics (2004). Submission to the House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill.

Buiting,H., van Delden,J., Onwuteaka-Philpsen,B., Rietjens,J., Rurup,M, van Tol,D., Gevers,J., van der Maas,P, & van der Heide,A. (2009). Reporting of euthanasia and physician-assisted suicide in the Netherlands: descriptive study. BMC Medical Ethics 2009, 10:18.

This 2009 study concluded that “The information [Dutch doctors performing euthanasia] provide is in most cases sufficient to enable adequate review.” It also reports:

63% physicians mentioned 'other aspects'; these included increased dependency (28%), deterioration (15%) and more rare aspects (16%), such as loneliness, being a burden to relatives and being mentally exhausted. Physicians most often based the 'hopelessness' of the suffering upon the "absence of treatment alternatives" (32%), "absence of curative treatment alternatives" (28%), or "absence of treatment alternatives to relieve the patient's symptoms", or combinations of these (14%).

Hendin,H; Foley, K. (2008). Physician-assisted suicide in Oregon: A medical perspective. Michigan Law Review, 106,8. This study found that legally mandated safeguards were being circumvented, causing harm to patients.

Seven years of assisted suicide in Oregon. Patients Rights Council. A comprehensive analysis of implementation of Oregon’s Death With Dignity Act (1997), showing many flaws.

Cohen-Almagor,R. (2009). Law, ethics and medicine Belgian euthanasia law: a critical analysis. J Med Ethics 2009;35:436-439  Found concerns with the Belgian euthanasia law itself and about potential abuse.
Inghelbrecht, E, Bilsen,J., Mortier, F., Deliens, L.(2010). The role of nurses in physician-assisted deaths in Belgium. Canadian Medical association Journal, 182,9. This study highlight the role of nurses in administering life-ending drugs and warns of the nursing profession’s illegal practice in going beyond the boundaries of the profession, including through direct involvement in euthanasia without an explicit request from the patient, and in which close to half of all nurses in this study involving 1678 Belgium nurses.

Until death do us part... not. Presented as "taboo-breaking", Belgium couples are having euthanasia together.  Reported on 30 March, 2011, an 84-year old terminally ill man and his 78-year old non-terminally ill wife (she had arthritis), met all the Belgian euthanasia criteria and had euthanasia performed together. The wife simply did not want to go on without her spouse. See a video here  It was the first time that such joint euthanasia had been openly acknowledged in funeral notices but joint euthanasia by Belgian couples is reportedly not uncommon. Like in Dutch provisions, three doctors had assessed the joint request and judged it as within the law, which, also like Dutch law, does not require terminal illness as a criterion.

The UK House of Lords Select Committee, which stated in 1993, in the context of the Bland case:

We do not think it is possible to set secure limits on voluntary euthanasia. It would be impossible to frame safeguards against non-voluntary euthanasia if voluntary euthanasia were to be legalised. It would be next to impossible to ensure that all acts of euthanasia were truly voluntary, and that any liberalisation of the law was not abused. Moreover, to create an exception to the general prohibition of intentional killing would inevitably open the way to its further erosion, whether by design, by inadvertence, or by the human tendency to test the limits of any regulation. These dangers are such that we believe that any decriminalisation of voluntary euthanasia would give rise to more and more grave problems than those it sought to address.

The Senate of Canada established a Special Committee to study the issues of euthanasia and assisted suicide and reached similar conclusions in 1994 on the same grounds and so did the New York State Task Force on Life and the Law.

For example the so-called “Parnell” Bill introduced in the South Australian Parliament in 2010, expressly allowed euthanasia for persons “suffering” from a disability. Leipoldt, 2010. Euthanasia in Australia: Raising a disability voice. Australian Policy Online.

Like wise the “Rights Of The Terminally Ill Act” (1998) had inadequate safeguards. (Keown, J. (2002). Euthanasia , ethics and public policy: An argument against legalization. Cambridge University Press.)

Magnussen (2002). Angels of death: Exploring the euthanasia underground. Yale University Press.


Kopp,S.W. (2009). The influence of death attitudes and knowledge of end of life options on attitudes towards physician-assisted suicide. Omega (Westport). 58(4)299-311.

Aranda.S, O,Connor.M (1995). Euthanasia, nursing and care of the dying: rethinking Kuhse and Singer. Australian nursing Journal,3,18-121.

Webster, J., & Kristjanson, L. (2002). But isn‘t it depressing: The vitality of palliative care. Journal of Palliative Care,18(1), 144-150.

Sherry, M. (2000.). Hate crimes against people with disabilities. School of social work. University of Queensland.  Accessed Oct 25, 2010.

Shut Out: The Experience of People with Disabilities and their Families in Australia, 2010. National Disability Strategy Consultation Report prepared by the National People with Disabilities and Carer Council. FAHCSIA10307.0908.

Leipoldt, 2010. Euthanasia in Australia: Raising a disability voice. Australian Policy Online.


Hubbard,S.(2004). Disability studies and health care curriculum: The great divide. Journal of Allied Health, 33(3),184-8.

Byron,M., Cockshott,Z., Brownett,H.& Ramkalawan,T. (2005). What does ‘disability’ mean for medical students? An exploration of the words medical students associated with the term ‘disability.’ Medical education 39:176-183.

Dixon,D.P. (2008). Informed consent or institutionalized eugenics? How the medical
profession encourages Abortion of fetuses with Down Syndrome. Issues in Law &

Stevens, Jr, Kenneth, R. (2006). Emotional and Psychological Effects of Physician-Assisted Suicide and Euthanasia on Participating Physicians. Issues in Law & Medicine, 3, 187-200.p

Herman Daly is a professor of economics and past World Bank economist. John Cobb is a professor of philosophy and theology. As one strategy to reduce excess of births over deaths in answer to the overpopulation problem, they proposed a right to die for older people. Of course, the incidence of disability is high in old age, and like in disability, a sense of meaning in old age has been eroded. When meaning in the lives of vulnerable people is questioned, a perceived suffering from old age or disability, can lead to the concept of their lives as worthless and disposable. We should also ask, is a ‘right to die’ here a front for the greater good of society? They wrote:

Older people should have the right to die on their own terms. A major dread of the elderly is that they will be kept alive at great expense to society and with much trouble to their children long after their lives have ceased to have any meaning for themselves and for others. This is, on any large scale, a problem brought about by the triumphs of modern medicine. The proper response cannot be found in ancient religious texts that came out of a very different social and demographic situation. Society is beginning to take a few tentative steps toward releasing doctors from the need to take extreme measures in preserving the life of one who wants to die we hope that with due caution it will go considerably further. Quite apart from any general demographic considerations, a proper respect for human freedom and the needs of the elderly should grant them the right to die and aid them in implementing their decision. In a world where population presses upon ecological limits, there are additional reasons to take these humane steps. (p.250). Daly, H.E., Cobb, J,B. (1989). For the common good. Redirecting the economy toward community, the environment and a sustainable future. Beacon Press. Boston.

Another warning on a slippery slope from Pieter Admiraal, a former Dutch anesthetist, who became one of Holland's leading campaigners for euthanasia. He said:
In 50 years time, you will see euthanasia accepted all over the world. It will be used with patients suffering from Alzheimer's who are otherwise kept alive for five or ten years. The time will come when we say that this costs money, and if you are demented for one year, we will kill you. I see it not as the answer to the growing elderly population but as the exercise of the right of self-determination.
Reported in an excellent article by Ruth Limkin (2008). Living with Dignity. Eureka Street