Peaceful Pill Blog
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.
August 4, 2015
Why I don’t want to know about dying to know day
A lot of things have a day now. Last week we had Cheesecake Day. That was good. I like cheesecake. In Mexico they have a Day of the Dead. In Australia The Groundswell Project has declared August 8th #DyingToKnowDay.
Perhaps you’re just dying to know what I think about #DyingToKnowDay?
Of course you are. But please note that, that these are my own personal views and they do not necessary reflect the views of Exit or of Dr.Nitschke. Exit is a broad church (if you will forgive the euphemism) and unlike some other organisations, there is plenty of room for differing and divergent views within it.
So in theory at least, I am in favour of #DyingToKnowDay. It has to be a good thing that people are being encouraged to talk to each other about death and dying. Right?
Certainly. But what kind of conversations are actually being encouraged? And what is more important, what kind of conversations are being discouraged? It seems to me there are two elephants in the room. That’s a lot of elephants in a room as small as this!
One is the vexed issue of suicide. The fact is that on average a million people or thereabouts in the world choose to shuffle off this mortal coil ever year, by whatever means available. This is a huge problem and as a society we have no idea how to address it. One of the problems is that the average person is not deemed qualified to have an opinion on suicide, and what has become the norm, is that it’s better not to talk about it. Thus when someone is found dead, and the newspaper says that ‘there are no suspicious circumstances’ we can assume they made a decision to end their life. But it is not named as such because of the idea of suicide ‘contagion’. It’s as if by talking about it, by naming it, people are going to be more likely kill themselves.
Suicide has become the realm of mental health ‘professionals’ and other ‘experts’ like Beyond Blue, the Samaritans and Lifeline. These are the people you are advised to call if you are thinking about ending your life. And the kinds of people you’ll be talking to, if you ring one of those organisations, believe that by definition, anyone who is thinking of ending their life is mentally ill.
They support initiatives like those of the World Health Organisation to limit access to peaceful, effective ways of ending your life. And of course this does have the effect of reducing the numbers of people ‘committing suicide’ somewhat. But does it reduce the amount of suffering and the misery in the world? Does it make people happier? And won’t people who are determined to end their lives just find another way to do it?
The Groundswell Project
It seems to me what the #DyingToKnowDay people and the Death Café people are trying to do is to limit conversations about death and dying to safe topics, like palliative care or end of life care or hospices or advanced health care directives or medical power of attorneys or bereavement or mourning rituals or ‘natural’ burials. These are interesting enough issues and we should be informed about them – but they are not the only conversations that we need to have.
At the beginning of the year I emailed Kerrie Noonan*, the co-founder of the Groundswell Project whose mission is “To develop innovative arts and health programs that create cultural change about death and dying, while championing others to do the same.” I’m in favour of that (again, in theory). I explained who I was and that I would like to be involved in #DyingToKnowDay, but unfortunately I did not receive a response – and a follow up email didn’t get a response either. I subsequently emailed various other people involved with aspects of this and other projects, asking for a meeting, offering to come and give a talk – and was duly ignored by them all.
Could it be that they don’t want someone participating in the conversation who is interested in the issue of how people can be in control of their own death and determine how they die at a time and in a manner of their choosing? I mean after all it is not ‘natural’ to decide to end your life. I suspect this is why they don’t want me or Exit to be involved.
In October, the Groundswell Project is partnering with an organisation called The Natural Death Association Network (NDAN) to host a ‘Death Literacy’ conference. “EMPOWERING CHOICE AT END OF LIFE” insists their website over a backdrop of sunlight in a forest, and then a child’s hand. Again I too am very interested in end of life choices, but the kinds of choices I am interested in are slightly different.
So this whole ‘movement’ if that is what it deserves to be called, seems to be an unholy alliance between what appear to be, on the face of it, sensible professionals like Kerrie Noonan who is a psychologist and people who work in palliative care on the one hand – and old (and new) school hippies, the ‘spiritual’ crowd who like scented candles, on the other. They are interested in death and dying because they think of it as a ‘sacred portal’ to another existence. They believe in an afterlife and they are dying (excuse me) to tell you about it. They call themselves ‘death doulas’ or ‘death walkers’ who will ‘accompany’ you on your ‘death journey’ (for a fee) or ‘celebrants’ looking for a gig. Or, you can do a workshop where they will teach you how to be a death walker or death doula.
But what is really important for those of us who are committed to a secular autonomous approach to death and dying, in my view, is that we don’t become distracted. We need to continue to focus our energies on working out ways in which we can give people who want it, who need it, access to the information that is required to have control over how and when you die. This is the way we can help reduce unnecessary suffering, powerlessness and misery in the world and that can only be a good thing.
A lot of good people are attracted these kinds of initiatives because there is such a dearth of them. When there are so few conversations about death and dying – something which happens to all of us and to the ones we love and care about – when these conversations do happen and there is good publicity, they attract a lot of interest. And therein lies the problem. Politically and ideologically, I would argue, we must be careful about who we allow to dictate the terms of these conversations. The Groundswell Project, the well intentioned Death Café organisers, the self appointed ‘experts’ of the Natural Death movement – and dare I say it, the Voluntary Euthanasia Party – all have more or less hidden agendas and vested interests, and they want to claim a piece of the action now. Because what is coming is inevitable, but it won’t be self determination.
In the debate about what is now called Voluntary Euthanasia (much to my chagrin – but that’s a story for another day) we are also seeing it. As the legal system and the long arm of law enforcement do everything within their power to silence Exit and its supporters, and whilst the media is engaged in a vendetta against Philip Nitschke – Rodney Syme and his supporters (which include the Fairfax press) are hell bent on hijacking the debate. “Trust us,” they say, “We are doctors. And look,(pointing at Philip) he is not a doctor anymore.” (The fact that the Supreme Court has ruled the suspension of Dr.Nitschkse’s medical license illegal notwithstanding. The damage is done.) Well I for one, don’t want to have to go cap in hand to the likes of Rodney Syme and beg for help when the time comes, and have him sit in judgment over whether my suffering is unbearable or not.
But most of my friends are enthusiastic supporters of the VEP and many of them are likely to think #DyingToKnowDay is a good thing. I don’t want to alienate them – but what I am saying is: If what we want is to have control over our own deaths, no existing or proposed legislation that I’ve seen is ever going to give us that. What those kinds of legislation propose to do is give a little bit more power to others to have a bit more of a say over our deaths. And the numbers of people who will benefit from such legislation will be very small. They will be a limited number of terminally ill people, most probably in the very final stages of their disease.
But wouldn’t a change in legislation be a step in the right direction? you might ask. Isn’t it better than what we have now? Well in a way, yes – but in another way no! Not really. Why would you vote for legislation which requires you to hand over control over how your life ends to a doctor? Being a doctor doesn’t make you an expert in dying or suffering. A doctor may be able to make you well or to give you appropriate pain relief if you need it, but the medical people are not experts in dying. Every death is unique. Your death, just like your life, belongs to you and you are the expert of your own death.
Of course it’s a good idea talk with your nearest and dearest about your death and to consult with professionals when you are making your will, or when you are arranging your funeral – and when you are thinking about your health and the quality of your life. But what I am advocating is autonomy and self determination in dying. That is the issue I want to talk about. Who wants to talk about that with me?
* Subsequent to posting this I received a friendly call from Kerrie Noonan. She read my post and apologised profusely for not responding to my email. She assured me that anyone can be involved in Dying To Know Day including Exit and that there is not excluding right-to-die conversations – but that they walk a fine line, with the palliative care… shall we call it an industry? (my word not hers) seeking to medicalise and dominate the conversation. So that is encouraging. Next year we (Exit) will do something and I will put in a proposal for the Death Literacy conference. I also offered her the opportunity to write a post for the Peaceful Pill Blog which she said she’s be interested in doing. Watch this space!
July 22, 2015
The life and death of Rogi Wieg
Rogi Wieg, a well known Dutch poet, died by voluntary euthanasia in Amsterdam on Wednesday night.
Throughout his life he suffered from serious depression and anxiety. He frequently had long spells in psychiatric institutions where he received electroshock therapy. He attempted suicide three times. His request for euthanasia was granted on the basis of ‘unbearable psychic suffering’ but he also suffered numerous debilitating physical symptoms particularly in the last years of his life – possibly as a side effect of all the different medications he had taken over many years.
In 2003 on a tour to promote his book Kameraad scheermes (2003) he told audiences : “Most people who say they want to die, don’t actually want to be dead. They just don’t want the life that they have.”
After being told by doctors that he was ‘uitbehandeld’ (no further treatment available), he began the process of requesting euthanasia. In an extraordinary moving and frank interview with Wim Brands conducted last winter and shown after his death by the VPRO on Dutch TV (in Dutch – no subtitles) Rogi Wieg speaks about the death of his father – also through voluntary euthanasia – his own fear of death and his sadness about death being the only thing he had left to look forward to. He said that even now he still frequently feels like he would like to end his suffering by taking his own life and not waiting for the outcome of his application for euthanasia, which he expects to be successful. But he was determined to see the process to its conclusion – to do otherwise would be like a defeat.
He talks about his disappointments, four years after the death of his father he finds he no longer thinks of him as someone he loves – and he is very negative about his mother whom he calls a narcissist. His condition, by his own admission, is rooted in a long standing fear of death – and, I would suggest, an existential crisis that has continued haunted him for most of his life. He explored every therapeutic avenue available without resolution, including four years of psychoanalysis, many and varied medications and electroshock therapy.
Rogi Wieg was fortunate in only one sense: He was a citizen of a country where he had a choice about ending his suffering in a humane way.
“I don’t believe in God,” he once wrote, “But I hope He believes in me.”
Rogi Wieg was 54.