When this tide is not for turning

tide is turtningFalconer’s bill hits the rocks. Eighty years of no change. Public opinion consistently demands euthanasia law reform. Is the tide really turning?

In 1935, a group of eminent persons proposed a bill to allow voluntary euthanasia under carefully controlled conditions.The first attempt to pass legislation to make euthanasia legal in Britain was the Voluntary Euthanasia (Legalisation) Bill 1936 introduced to the House of Lords by Arthur Ponsonby. The debate was not split along party political grounds and the Government considered it “outside the proper range of Government intervention and to be one which should be left to the conscience of the individual members of the House.” Sound familiar?

Bills have followed with predictable regularity: none have passed. That’s 80 years of some people dying very badly without any choice in the matter: people that could have been offered a painless and dignified end.

Death is not something generally that people want to think about. Not politicians, not the population generally.  There is an anxiety, a fear of thinking seriously about one’s own death and rational decisions cannot be properly undertaken until that fear is acknowledged and dealt with. At the same time, there is a desire to “do some good.” Once a person gives some money to a charity, whether it is for starving people in Africa or campaigning for voluntary euthanasia, there is a sense that one has “done something” and that relief allows us then to stop thinking about it. (This works whether the money actually does any good or not.) Funds pour into campaign groups but very few achieve their political objective. Experts on political campaigning agree that it s a very expensive business to do properly. There is very limited evidence for instance, if any, to suggest that campaign groups connected with legalising voluntary euthanasia have any effect. Change, when it has happened, mostly comes from the support of doctors’ groups, (except in areas where the public can vote on legislation as happens in certain places in the United States). Each week someone will probably contact Exit and excitedly mention a story in a newspaper saying something like, “Look! the tide is finally changing!” (This has been happening since 1980 so please excuse me if I don’t leap out of my seat!) The tide of public opinion changed ages ago. It remains steady at around 80 per cent.

Meanwhile, those who cannot wait another 80 years for legislative change, and can’t afford the costs of going to Dignitas in Switzerland, seek out information on self-euthanasia from groups such as ourselves (other groups are Final Exit Network in the USA and the Australian Group, Exit International, both of which have a high profile and strong campaigning aegis.) As the body behind the most extensive scientific information on the subject, Exit is the focus of hate campaigns from religious groups and occasionally relatives of persons who have died as a result of getting information often from other sources, such as the Internet. We struggle on with minimal funds, and have done so since 1980 (when we published the world’s first guide on self-deliverance). We do the best that we can without getting shut down.

Many years ago, Exit funded a feasibility study by Glasgow University to find the most effective way (a legally sound way with the most chances of success) of drawing up a bill on assisted suicide. Few politicians look at it. They mostly re-invent the wheel, not very well, and then ask us afterwards for our ‘support’. The Commission on Assisted Dying (Demos), a think-tank, also published a report: full of idealistic aims and safeguards that people argue over in a sort of amour-vanité of knowledge, of terminology, of ideals, without giving the slightest technical consideration to the most important practical question of all: will it get passed?

With the time, money and expertise put into such things, something could have been done, and wasn’t. The cycle has been repeated for 80 years this year. If the law can be changed to allow assisted suicide and voluntary euthanasia in acceptable way fro those that need and desire it, Exit will hang up its hat and close. Until then, there is a job to do. Next time you feel a thrill of support for a hope to change the law to benefit people in the (probably distant) future, maybe spare a thought for Exit, that is doing something for people now.

The Voluntary Euthanasia (Legalization) Bill (1936) (Hansard)
The Voluntary Euthanasia (Legalization) Bill (1936) revisited, Tim Helm, JME
Lord Falconer: government must clean up assisted dying legal mess (Guardian)
Demos Commission on Assisted Dying

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2 Responses to When this tide is not for turning

  1. Kohavah says:

    To The Virtuous Individuals Who Are Part Of The Positive Exit Movement:

    I want to thank you from the deepest center of my heart and mind, for the hard work that you do. You are brave individuals who have taken on a task, that many others either will not or can not.

    At times you feel as if you are not gaining the big wins… that you hope to gain with various governing bodies. You have been hoping for blessed approval and sanction of an individual’s right of way, to exit, on their own terms, and in their own time, from people who think themselves the gods of mankind. You are discouraged by this. Remember that those who govern… are not in office for the purpose of being a truly good individual, who governs with compassion and understanding.

    However, I think you should be aware, that your work has not gone un noticed, or unappreciated. There are individuals who have learned the techniques that you have worked so hard on teaching, and who have been enabled to free themselves, in their own way, at a time when it was best for them. You have succeeded!

    It is not in the numbers that are freed, it is in doing what you can to educate others, in order that they may be enabled to exit…when things are unbearable. There is no way of knowing how many individuals have been spared continual agony and further humiliation, because you have done this work. In general individuals will want to keep this very quiet, in order that the movement continues.

    Please understand, changing the minds of people in power is not nearly as important, as making this information available to as many people as possible, who are then enabled to use your techniques, to end what would have been decades of worthless suffering.

    This information that you have worked so hard on, is being spread. Those who have no money for the books, are receiving copies of the information, from those who have been able to buy them. Friend to friend. Parent to Grandparent. Grandparent to Adult Child. Sister to Sister. Brother to Brother. Uncle to Aunt. Aunt to Nephew. The list is endless…your work is not in vain. I see it as the very essence of genuine love.

    With all of my gratitude and respect,
    Kohavah

    • One of the most rewarding aspects of our work is seeing people jettison their fear of death. Death is a hard subject to talk about. Sometimes people come to a workshop, stepping over the threshold as if it were the boarding stage for the River Styx. An hour later and they are laughing and smiling with relief, and sharing that relief with sane, like-minded individuals. Often they will say how they have gained the courage and peace of mind to face a lingering disease or unknown future, to live longer, knowing that they can at any time “pull the plug.” The peace of mind that it gives is incalculable.

      I feel impelled to issue a warning on one point you make however and that is a legal point which becomes a moral one. Sharing information with friends and families in a general way is perfectly safe. Buying books is perfectly safe. The difficulty arises if a person shares information with someone whom they know is planning to use it to end their life in the foreseeable future. That raises a legal issue first of all. The person becomes guilty of assisting, or encouraging, a suicide. The severity of the situation if and when discovered is assessed (in England & Wales for instance) by the Director of Public Prosecutions. If there is sufficient evidence the DPP then has to decide if it passes the Public Interest test, and the rules for how that is decided are laid out in the DPP Guidelines.

      How is that different, you might ask, from publishing books or holding workshops? The answer is that, of people who buy books and attend workshops, only a minute proportion will use that information for drawing life to a close. For most it provides reassurance. There has to be something else that causes someone to take his or her own life (in law this is called the novus actus interveniens, a “new act intervening”).

      But there is another, moral consideration, and possibly more than one. Have you read one of Exit’s books? How long did it take you? Did you find you went back through it and reviewed certain chapters or considerations? How long did that take? There are many precautions, safeguards. “Passing that information on” risks someone not reading it fully, misunderstanding what you told them and basically making a mess of it. If that person were to die badly, you would have that on your conscience.

      There are other concerns, explained in the books and which form a practical in our workshops. We present a situation where, often with a strong emotional appeal, someone asks another person to “help.” We encourage people to think it through. How would they react? It is people and situation dependent so no quick right-or-wrong answer. After everyone has thought it through calmly, we present a ‘sting in the tail’, something that might not have surfaced until much later. Someone with a misdiagnosis. Someone who is very persuasive and leads others into a situation which they later regret. Someone who is depressed or has just had an initial diagnosis but can be effectively treated. Believe me, we have been working in this field for more than 30 years and we are experienced in the ‘best’ (or least worst) way to deliver information. Passing it on, or receiving it, without expertise is not the best way. If you decide to take a gamble for the sake of loved ones, that is on your head, and so we try to explain what is involved legally if someone makes that decision.

      Some people accuse us, thinking it is all about making money from books. Nothing could be further from the truth. Books several inches thick and densely packed with scientific information, thoroughly checked and documented with cross-disciplinary references, are not cheap to produce. There are other books that are very affordable for those that need a brief easy-to-read introduction to the subject (Derek Humphry’s best-seller, Final Exit, comes to mind). Our books are intended for those persons who want to examine the subject in great depth: lay-people, professionals, and other researchers. Some people would say that if it is such a big decision as life and death, the purchase price is small (it’s vastly smaller than similar scientific and academic books). But basically we don’t directly have any control over the selling price which is fixed by Amazon. Neither do we encourage people to break copyright and obtain them that way. We run on a shoe-string, true, but the main reason for copyright is intellectual integrity. A Dutch organisation once changed something in one of our books and two people died horribly as a result (we had made them available internationally at no charge and in several languages). The only way we can maintain the accuracy of our our information is to maintain some control over it. You can find all the information yourself if you take it seriously enough. Our books are deposited in reference libraries and you can do the literature searches there to gain a greater understanding (when you start investing in books on neuroanatomy, pharmacology, pathology and building up a library of your own, you will have spent thousands of pounds, and a significant portion of what income we do have is also spent in this way.)

      When the law is changed, it will be easier to disseminate information more fully, and have the resources of palliative care, psychotherapy, expert medicine, all on hand (rather than us telling you where to get them). Oregon has just changed its prescribing formula to include improved anti-emetics (something we have been making a noise about all year in our publications). Someone has to do the hard work of research. Much as we would prefer to work entirely within the establishment, introducing even better safeguards, not everyone, as explained in the post, can wait that long.

      Thank you for your input. The DPP Guidelines can be found in the right-hand sidebar and at this link:
      https://www.cps.gov.uk/publications/prosecution/assisted_suicide_policy.html

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