Peaceful Pill Blog
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
To cite this article, please include reference to the author, the title, the date of publication & the citation link below:
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
- 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.
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.
September 4, 2015
A day in the country
When Australian Broadcast Corporation invited contributions to their Death and Dying ABC Open project, I submitted the following. But it has not appeared on the website. Is this a case of censorship by our national broadcaster? I guess we’ll never know since they are not responding to my emails.
Dr. Johannes Klabbers
On a beautiful day in May I drive out of town to meet up with Exit members, Andrew*, 88, and Beverley*, 80. They requested a visit. I’m driving across the bridge when Andrew calls : “We’ll take you out for lunch!”
The venue is a winery/restaurant in a wonderful location overlooking the Bay. When I arrive, Andrew and Beverley are already seated and enjoying a glass of wine.
“Would you like a drink?” Andrew asks.
I don’t want to seem like a wowser or confess to being a recovering alcoholic.
“Thanks,” I say, “I probably shouldn’t. I have to drive back after lunch. But I’ll have a Coke!”
“Now I feel bad,” Beverley says, a little sadly, “drinking in front of you.”
I instantly warm to her. She is a splendid woman, wearing a bold, black and white striped top, her hair piled on top of her head in a bun, and her nails carefully painted.
“Don’t be silly!” I touch her arm. “You enjoy it!”
The great thing about Exit people is that no one minds talking about death. I can speak freely. They have the Exit handbook and when I mention something that’s in the handbook they say : “Ah yes, that’s in the handbook.”
“When the day comes, we will go together,” Beverley tells me. They both nod. Neither of them have any wish to live without the other.
“I’ve had a marvellous life,” Andrew muses, “but I’m useless now. I’m not contributing anything to the world. I’m just using up resources!”
Beverley admonishes him but I think it’s marvellous, such humility.
“But Andrew,” I say, “I’m sure you made a contribution to the world in the past.”
“Well I tried to!” he laughs.
“Everyone is entitled to some rest and relaxation in their latter years!” I say.
He nods and smiles, but I am not convinced he believes me.
They would like to go to Switzerland. They are members of Dignitas and they have friends there.
“But we’re not terminally ill,” Andrew says. He seems disappointed.
“Except that life is a terminal illness!” Beverley retorts.
It’s an old joke but it never fails. We all laugh heartily.
They don’t really like the idea of being found by their children, Beverley tells me.
“It would be distressing for them.”
They have talked with their daughter about their desire to be in a position to end their lives when the time comes. She agrees it’s their choice, but it makes her sad. “We often end up crying together when we talk about it,” Beverley says.
I say : “Well no one is denying that death is a sad business. And your children will miss you, just like you miss your mother.”
“Oh but I didn’t like my mother!” Beverley exclaims. “She wouldn’t let me go to university.”
She pauses for a swig on her glass.
“And she wouldn’t let me read! My grandmother bought me a children’s encyclopaedia – and my mother took it from me and told me to go and play outside!”
“Anyway you’re all doing some of your grieving now instead of afterwards,” I say, trying to get back on track. “And you’re still here to support them.”
Beverley’s face lights up.
“You’re right,” she says, with a smile.
Beverley tells me they spent two years sailing around the Mediterranean in the seventies. A few years ago they set out for Tasmania in their boat but they had to turn back. It was too choppy and they didn’t feel confident.
“We realised we couldn’t do it anymore,” Beverley says wistfully.
When we part ways, Andrew and I shake hands warmly. I give Beverley a big hug and say : “You let me know if there is anything else I can do.”
“Thank you,” she says. “Thank you so much for coming. Any time you want to visit, you’re always welcome.”
I take the ferry to Sorrento. The Bay is calm and it was the warmest May day for ten years.
Almost a year later Andrew and Beverley end their lives in a country motel.
I miss them but I’m happy. They left this earth together on their own terms and at a time of their choosing.
* I have permission to use Andrew and Beverly’s real names.