May 21, 2016

From Voluntary Euthanasia to Rational Suicide? Exit’s 20th Anniversary Conference

The forthcoming Exit 20th Anniversary conference is titled ‘From Voluntary Euthanasia to Rational Suicide’.

But what are we talking about?

Generally speaking, VE – voluntary euthanasia is the catch-all term that means an assisted death. Euthanasia comes from the Greek, meaning good death.

Voluntary speaks for itself (although as some Christian groups would argue, there is nothing voluntary about it. Silly them).

In more technical talk, however, voluntary euthanasia can also mean a lethal injection. This is when a doctor can lawfully help a person to die. Hands on help, if you like. This is the model used in the Netherlands, Belgium and Luxembourg.

In Darwin in 1996, this is kind of what Dr Philip Nitschke did when he helped four patients to die under the Rights of the Terminally Ill Act (ROTI).

Although Dr Nitschke built a Deliverance Machine so he would not have to administer the lethal injection.  While Dr Nitschke believed passionately in a person’s right to choose to die. He did not want to be the one doing the ‘killing’.

The Rights of the Terminally Ill Act lasted nine months before being over turned by the Federal Parliament of Australia in March 1997, as a result of a conscience vote. The Private Members Bill that led to the defeat of the NT’s law was Mr Kevin Andrews.

As a kind of semantic difference to VE sits Physician Assisted Suicide (PAS) which has more recently morphed into to VAD – Voluntary Assisted Dying.

Each of these latter terms involve a physician prescribing a lethal drug to a patient. The patient however must be able to drink the lethal drug themselves.  There is no hands-on assistance. This is the legal model in the US states of Oregon, Washington, Vermont and California. Canada too will follow this approach.

Regardless of what term you use, all of these involve the medical profession.

Exit International works alongside these legal frameworks by providing information about euthanasia, assisted suicide, or whatever you would like to call it.

Moving on 20 years and we have arrived at ‘rational suicide’.

Rational suicide can be defined as the act of dying by one’s own hand after careful consideration.

Rational Suicide is an informed and considered decision (unlike the irrational suicide of depressed teens).

Rational Suicide does not depend upon the medical profession providing permission or the means of death.

Two recent examples of rational suicide are that of renowned psychology Professor in the US, Sandy Bem. See the New York Times article.

In Australia, scientists Peter and Pat Shaw rationally suicided together. This was written about in detail in the Sydney Morning Herald in January 2016.

To this end, Exit is holding its 20th anniversary conference on the journey that has been undertaken from a time when a patient could receive a lethal injection from a doctor, to now when a person can rationally plan when and how they will die without medical interference.

The Exit Conference that will be held at the State Library of Victoria on 22 – 23 September 2016 features speakers who have much to contribute to how we can understand the right to die debate.

Australian historian Dr Deb Campbell will examine how the Australian right to die debate has become stultified in old frameworks of understanding and a discourse that is going nowhere.

US Law Professor Susan Stefan will consider if rational suicide / assisted dying is a medical treatment or a civil right.

Dr Lieve Thienpont, a Belgium psychatrist will explain how rational suicide is provided for under Belgium’s voluntary euthanasia laws.

Ms Anny Shaw, daughter of Peter and Pat Shaw, shall speak about her and her sisters’ experience of her parents rational suicide pact.

If you are in Melbourne in September you are invited to come along.

This historic conference is destined to be a gathering like none other.

Register Now

 Fiona Stewart, PhD MPolLaw LLB

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February 28, 2016

America’s Moral Panic over Euthanasia in the Netherlands

Whoever said it was Donald Trump who was causing moral panic and outrage in the US at the moment was only partly right. The other mischief maker is the Dutch, at least where euthanasia is concerned.

The study published last week in the Journal of the American Medical Association shows a few things. And not just that the Dutch are allowing euthanasia where Americans would fear to tread.

It shows also that the Journal’s editorial regime is in trouble, or it should be. Allowing such a study – and I use the term loosely – to be published in a peer reviewed journal of this nature.

At its core the article gives a quantitative analysis to 66 qualitative cases of voluntary euthanasia in the Netherlands (recorded between 2011 and 2014). Any first year research methodologies student would know how inappropriate, misleading and downright unscientific it would be to apply such a methodological approach.

Psychiatrists are ill suited to be the arbiters of end of life decision making. This study  shows why.

The study by three psychiatrists is flawed not only because it is the narrow discipline of psychiatry that conducted it. Psychiatry is unsuited to this endeavour because there is nothing in medical school training that teaches social science research methodologies. The only reason these psychiatrists have gotten away with it is because they sit at the pointy end of the medical pyramid of privilege.

Far too many of us, both within and outside the medical profession, hang off their every word. When we shouldn’t.

Not only is the study flawed because the figures are so small as to make percentages meaningless, but in doing so, the highly contextualised nature of the 66 instances of decision making is ignored.

The narratives of these lives along with issues of subjectivity, identity and agency barely get a look in.

Thirdly, but not finally, sloppy findings of this nature lend themselves  to misinterpretation by the press, both willfully and through plain ignorance.

The end result is that the public is stripped of insight into something which is a topic of great interest and which should be reported on responsibly.

Take Charles Lane’s op ed in The Washington Post in recent days.

Pro-life/ anti-choice, Chuck uses the JAMA article to accuse the Dutch of euthanazing a 30-something man diagnosed with autism. That he wanted out and was considered to have legal capacity to make such a choice is beside the point.

Nuh, Chuck just wants to tell us that if you get autism, don’t go to Holland because the Dutch will be to put you down!

Next point, Chuck notes that in 37 cases the patients refused ‘possibly beneficial treatment’. But that the ‘doctors proceeded anyway’ in putting these good folk down.

Lets unpack this one for a minute.

In the Northern Territory of Australia’s 1996 Rights of the Terminally Ill Act, the treatment on offer had to be acceptable to the patient. If it were not acceptable, there was no requirement to pursue it. In other words the person could then ‘satisfy’ that criteria towards using the ROTI Act for a peaceful death.

This type of legislative clause of acceptability is important.

It is important because it preserves autonomy and personal dignity. It also upholds the widely-accepted belief (and legally enshrined patient right) that a person can decline medical treatment.

That is, you do not need to be shackled to the hospital bed, and needles inserted or tablets shoved down your throat if you don’t want it.

If a person has the capacity to refuse medical treatment then their decision to turn such treatment down should not be dismissed.

What type of society do we want to live in?

Surely not one that forces medical treatments on the unwilling? Yet this is precisely what concerns Chuck here.

And that’s not all. He’s also worried about the 70-something ‘physically healthy’ woman (Chuck had to add that bit in) who requested and received euthanasia because she didn’t want to live on after the death of her husband (from voluntary euthanasia) the previous year.

According to Chuck, ‘live on’ is precisely what she should have been forced to do. So much for the land of the free.

I could go on but I won’t.

What I will say to conclude is that the Dutch secular tradition of looking after oneself and self-reliance seems to stir up deep-seated anxieties in countries such as the US, where God is writ large.

And where the religious right is both well-funded and active.

While Chuck Lane’s op ed is tomorrow’s take-out wrapper, it is of concern because The Post chose to give it a run.

That it is not the only article to appear of late where Holland is being hung out to dry as some wacky nirvana where anything goes, shows how deep the cultural misunderstandings run between the so-called land of the free and a country that could be called the real thing.

I, for one, hope the Dutch do not bend to America’s religious right, nanny-state mentality on this issue.

The Netherlands has led the way for more than 20 years. I hope they continue to do so.

 Fiona Stewart, PhD MPolLaw LLB

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October 7, 2015

California’s End of Life Options Act (SB-128) – What’s it all about?

“I do not know what I would do if I were dying in prolonged and excruciating pain,” he wrote in a letter addressed to state lawmakers. “I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill.

“And I wouldn’t deny that right to others.” – California Governor, Jerry Brown

If you fail, try, try again.

And so those who support end of life rights in California have done. It took them eight attempts but finally common sense and compassion have prevailed.

On 6 October 2015, California became the fourth US State to legalize assisted suicide, with the End of Life Options Act.

Already this new Law is under attack from those who would prefer that no one has choice over the timing and manner of their death.

More about the nay-sayers later. Here is what the new Law is about:

Title: End of Life Options Act

Criteria:

• You must be a resident of California
• You must be an adult – ie 18 years of age or over
• You must be suffering from a terminal disease – ie an incurable and irreversible disease
• You must have legal capacity – ie you must understand the nature and consequences of your decision, along with its significant benefits, risks, and alternatives, and you must be able to make and communicate your decision to health care providers
• You must undergo a ‘Mental Health Capacity Assessment’
• You must make two oral requests at least 15 days apart
• You must also make a witnessed written request on the specified form
• Your health care provider must complete the ‘End of Life Options Act Checklist’
• You must administer the drug physically to yourself, no one can help you

What Drugs will be used?

The Act states that the drug to be used will be determined and prescribed by the attending doctor

What is allowed:

• The Act provides immunity for health care providers from prosecution
• The Act allows health care providers to refuse to engage with the provisions of the Act
• The Act provides strict reporting criteria of doctors, pharmacists, and the State Public Health Officer
• The health care provider is provided with immunity against civil, criminal, administrative, employment, or contractual liability or professional disciplinary action for participating in good faith

What is not allowed:

• Active euthanasia – ie a physician-administered lethal injection
• Coercion or the exertion of undue influence on a person to die is strictly prohibited (no surprises there)
• False, forged, un-authorized requests for the end of life drug are prohibited
• The Act prohibits provision in a contract, Will or other agreement that is conditioned upon or affected by a person making or rescinding a request for an end of life drug
• The Act prohibits the sale, procurement or issuance of any life, health or accident insurance/ annuity policy, health care service plan, contract etc conditioned upon or affected by a person making or rescinding a request for an end of life drug
• An insurance provider cannot provide information (including its availability) to an individual about an end of life drug without a request by the individual, the person’s representative or agent, including their doctor

Its a Wrap, West Coast Style

Brittany Maynard has left one hell of a legacy.

The power of the individual’s story to change the world remains a reality. While the experience of New Zealand’s Lucretia Seales amounted to very little – and certainly no legal dispensation to be allowed help to die – the California existence should serve to preserve hope for the rest of us.

Under Attack

But already the End of Life Options Act is under legal attack.

A group called ‘Seniors Against Suicide‘ have filed papers seeking a referendum to overturn the new Act. They say they are working with ‘other opponents of medically killing depressed and ill patients.’

Once again, radical Christian groups can’t stand the thought of those who do not share their faith exercising their free will and autonomy over their own lives.

Some people never learn. Lets hope they fail miserably in imposing their view of the world on the rest of us.

September 27, 2015

Submission to Inquiry into End of Life Choices

I made a late submission to the Parliamentary Committee Inquiry into End of Life Choices in the Australian state of Victoria, not expecting it to be accepted, but it was. Here it is :

…the tintinnabulation that so musically wells 
From the bells, bells, bells, bells,
Bells, bells, bells –
From the jingling and the tinkling of the bells.

Edgar Allan Poe ‘The Bells’ (c.1848)

I have tinnitus, or as I prefer to think of it, tintinnabulation. The word was invented by Edgar Allan Poe to describe the lingering sounds a bell makes after being struck. It makes it sound more poetic and less like a disease, or a condition, but it is not an accurate description of what I hear, and it doesn’t fade like tintinnabulation.

Many people suffer from tinnitus but in my own case I don’t say ‘suffer’ because it is more discomfort than suffering and, whilst certainly unpleasant, it’s not unbearable, at least not at this stage. Do I wish it would stop? Yes of course. The realisation that it is unlikely to ever stop makes me feel quite claustrophobic. It varies in intensity, pitch and frequency. Sometimes it’s less loud and not as insistent. And when I’m listening to the ocean it almost disappears, it is as if it neutralises it. (Some tinnitus sufferers wear a device that constantly produces a noise which more or less successfully neutralises the sound.)

A Dutch woman Gaby Olthuis, did suffer unbearably from tinnitus. As she lived in The Netherlands where euthanasia is available for people who are suffering unbearably but who are not not terminally ill. But Gaby did not just have tinnitus, she subsequently developed hyperacusis, a condition where you become so hypersensitive to sound that it causes unbearable pain. I am also sensitive to certain sounds and I hope I don’t end up with hyperacusis. Is it possible for me to imagine it getting so bad that I would not want to be alive anymore? Absolutely.

Gaby successfully requested and received euthanasia in The Netherlands in 2014 aged 47. Many people were ready to condemn her, especially because she was young and she had children. The Levenseindekliniek (end of life clinic) was reprimanded by the authorities for acceding to her request. But who could deny that her suffering was unbearable after watching this heartbreaking interview with her, recorded three weeks before her death?

[Download link to MP4 file for this video](https://goo.gl/dfMxe2)

And if Gaby had been unsuccessful in getting medical help, she would have ended her own life. She had obtained the means to do so peacefully at a time of her choosing. People are ending their own lives every day because they are suffering unbearably. Making it legal for them to do so under medical supervision, gives them peace of mind. It makes it easier but it doesn’t make it more likely. It certainly makes it less traumatic for the people that care about them. Not only can they can end their lives with their loved ones present if they wish, the presence of a medically qualified person means that if something goes wrong, help is available.

I urge the Victorian Parliament to legalise medical assistance in dying for people who are  suffering unbearably, however I would propose that the decision whether or not the person applying for assistance is suffering unbearably be made not by a doctor, but by a panel of citizens from the community – similar to a jury system. The panel would have the power to call for evidence from experts including the treating doctor and, especially important, people who suffer from the same disease or condition as the applicant. If the application was successful the panel would accede the request and a doctor would then be able to assist in the death of the applicant.

Thank you for your time.

Dr.Johannes Klabbers