EXIT: The Self-Euthanasia Movie

EXIT: THE SELF-EUTHANASIA MOVIEDeep emotions. Self-examination. Joy and seriousness. A roomful of people gathered together last week to spend the day familiarizing themselves not just with ‘methods of self-euthanasia’ (helium and other techniques), but facing the fears, breaking taboos, finding a new community of openness for a sensible discussion but also much laughter and shared good feelings.

It was one of Exit’s long-running full-day interactive workshops. There was a look at the law and the moral dilemmas, then fast forward to imagine a situation when time runs out. Could you remain so calm? Take decisions sensibly and in full control?

Exit workshops are carefully paced to allow people time and opportunity to examine their feelings as well as the physical and intellectual dexterity that they might need one day. Different ‘methods’ are compared and questions asked. What about if you were paralysed? What if an illness was not so serious after all? How do you make sure you get the best pain relief available? For the practicals, people work in small groups, finding out for themselves, what helium is really like, how to make their own ‘hood’ should they need one one day, the pitfalls and care points of five or more methods: not just to think, “I am going to do this one day,” but to know that one is capable should all else fail.

But “A Good Death” is not just about knowing how to swallow pills or use inert gas or any of the other most safe, reliable methods of drawing one’s life to a close when the time comes: it is about peace of mind. A sense of life completed. A sense of one’s own time. The tried and tested techniques for achieving mental composure are introduced. Being at ease with oneself, one’s loved ones and the rest of the world is just as much a part of a “good death” as is lack of pain and indignity in the final moments.

Workshop facilitator Chris Docker has spent not only more than 20 years researching methods of self-deliverance (rational suicide), but has also trained in suicide prevention, palliative care, and advanced meditation techniques. He holds a Masters Degree in Law & Ethics in Medicine and has been a leading advisor on the legalities of end-of-life issues to the professions.

EXIT: THE SELF-EUTHANASIA MOVIE See the trailer HERE

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The things that become important

audience at a TED talk

audience at a TED talk

Some of the questions in life can be downright scary. Take death, for instance! We know it’s going to happen yet we do so little about it. When the time comes, sometimes everything happens in a rush.

For this Blog post, I have taken three uplifting but intensely practical inputs. Firstly is a TED talk by an emergency medical technician called Matthew O’Reilly. He identifies three common scenarios he sees when attending someone in the last moments of life. Secondly is a re-blog from my friend Derek Humphry’s mailing list where he recalls the transformative attitude of a dying woman as recounted by philosopher John Hardwig. Finally is a story from our recent Exit workshop that maybe pulls these together.

First, here’s the TED talk, called, “Am I dying?” The honest answer.

(apologies to our readers who found a large blank space here! … we weren’t aware that video embedding isn’t allowed on wordpress blogs without a $99 subscription, so they were deleted after a day or so — do please just follow the link above — it’s only five minutes but has great emotional and practical impact)

Matthew looks at common crises that persons face inside and how he answers the question, “Am I going to die?” But he goes deeper.  He finds out what people are really looking for. He tells them the truth, and listens to what is important when someone knows that they are dying. They found inner peace and acceptance. But the reactions vary. 1) It’s about forgiveness, knowing that their life was good. Or (2) a need for remembrance, and in this a sense of eternity. Or (3) “The dying need to know that their life had meaning,” he says, and how that one always moves him the most.

Next, here is an example of someone with more than a few minutes, someone who knows they are dying and wants to act on the sort of realisations that Matthew mentions: she wants to do good for others and make her life count in that way.

Looking outside oneself in dealing with death by John Hardwig
(originally published in The Daily Republic and reprinted on the Ergo NewsList)

Brittany Maynard’s ordeal is now over. On Nov. 1, the 29-year old with terminal brain cancer, who became the face of a movement to allow dying patients to choose when to end their lives, used the pills provided by her Oregon physician and died. Compassion and Choices, the nonprofit Maynard worked with, reported that “she died as she intended -peacefully in her bedroom, in the arms of her loved ones.”

I would trade quite a few more days (especially days spent with searing pain or doped into semi-consciousness in an effort to manage symptoms) for the ability to say my goodbyes and die like that. We all know by now that the best death is not the one that can be postponed the longest.

The most striking thing about Maynard was the way she transformed herself so quickly, with an essay, from just another person into a warrior with a mission. But this is in keeping with the way many terminally ill people behave. They often spend their remaining days trying to improve the lot of those who will suffer similar illnesses in the future. Some, like Maynard, campaign for policy changes. Some offer themselves as subjects for medical experimentation, knowing full well that any findings will not help them. Some participate in support groups for those with similar medical prognoses.

“I didn’t launch this campaign because I wanted attention; in fact, it’s hard for me to process it all. I did this because I want to see a world where everyone has access to death with dignity, as I have had. My journey is easier because of this choice,” Maynard wrote on Oct. 9. In that way, she gave meaning to her final days in a way that a series of purely self-centered decisions never could have.

Discussions about physician-assisted suicide – and Maynard’s death - almost inevitably focus on what’s good for the terminally ill patient. But not every patient takes such a self-centered approach. A self-centered life, focused on personal gratification, aggrandizement and comfort, may or may not be good for the one living it. But a self-centered death is not. If all we care about is ourselves, everything we care about will perish in our death. That is unbearable.

Those who see themselves as connected to something bigger and more enduring than themselves, however, can die in a context of meaning and purpose. For some, religion provides this connection. But religion doesn’t always work. Many cannot summon the necessary theological convictions, especially on demand. And some kinds of religion fail at the end of life. A Christian oncologist told me that she deals with many patients who die filled with rage against God.

For others, a sense of connection comes from family, a deeply felt affinity with the natural world, or commitment to some ongoing endeavor such as art, science or efforts on behalf of disadvantaged kids. This approach clearly spoke to Maynard, who wrote that she worried she’d soon be unable to recognize her husband; her family moved with her to Oregon so she could die there.

For those who live a life of connection, when illness threatens to sever the connections, it is time to go. But the survivors go on, burdened or blessed with the memory of the death of their loved one. For them, the death is never the end of the story. And a death in the family - especially a long, drawn-out dying process – can be much worse for the survivors than it was for the deceased. This is part of the reason Maynard gave for opting against hospice care: “I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that. I did not want this nightmare scenario for my family.” She was looking outside herself.

The evaluation of Maynard’s death and of physician-assisted suicide more generally, must not be exclusively focused on the dying person. That would be to revert to the self-centered, unconnected perspective. Those of us with deep attachments to family and loved ones are all charged with carefully weighing what each of our alternatives probably would mean for our loved ones, with helping them to understand whatever choice we make, and with preparing them, as best we can, to go on to live happy, fulfilled lives without us.


How do these things all relate to each other in a practical way?

Some while ago, we looked at peer-reviewed research on the way we can choose to influence our state of mind when facing death. Matthew has described the needs, but not all of us will have Matthew to talk us through or be in Maynard’s position. For the first time in a face-to-face situation, confronted with a fairly hard-nosed audience unwilling to swallow any psychobabble, we introduced one of the several techniques. Called LKM, it is used by persons of any religion or none and, like mindfulness meditation, involves meta-cognition (the psychological ability we have to ‘think about our thinking’). There are two stages, one is to feel good (and forgiving) about oneself and the second is to feel good about everyone else.

The first of these, feeling good about oneself, one’s life, can be particular hard at a moment when it is all about to go away. I sometimes go through this stage with people by asking them to think of someone who loves or has loved them unconditionally. Imagine that person is glancing at you from the other side of a screen as they write about you. Imagine you can look over their shoulder. Look at all of the wonderful things they are writing about you. Make peace in this way and value the goodness of your life; and then, only now, turn to your feelings towards others.

This second part involves holding that feeling now built up inside oneself, a feeling and knowledge gained from a sense of unconditional love, and extending the feeling to others. Starting with those close to you, feeling love for them and extending forgiveness for anything that has happened in the past. Then extend it to carers, associates or people you barely know. Lastly, to anyone who wished you harm or that was your enemy.

While this sounds a wonderful exercise, I have not introduced it merely to suggest we should all love each other! – even if you think that should be the case (and of course, maybe it is). But the issue we are tackling here is our own inner state of mind at the time of death. If you want a good death, whether by your own hand at a time of your choosing, whether by going to Dignitas, whether by letting ‘nature’ take its course, or it could even include a road accident (going back to the first story in this blog) then you might want to spend a moment deciding how you will handle it.

A close and very elderly friend recently said to me the other day that, with severely declining health, continuing to live a little longer became acceptable on realising contributions to the needy she can make. She probably has her ‘Exit’ kit to hand, but she is practicing her mental attitude in a wholly fulfilling way.

Sometimes learning how we want to die can inspire us to enjoy the way we really want to live our lives (first!) EXit wishes all its readers a good life, and (quite literally) a good death, and a good dying.

n.b. This is a more upbeat approach than our previous, rather graphic blog, but there is maybe a common theme running through them which we have touched on in a practical way in our ‘last moments’ essay (find it at the very foot of the ExitEuthanasia Blog). 

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Realising oneself in life and in death

Meryl Streep in The Hours © Paramount Pictures

You have a “right” to choose when and how you die and, unless you have been incarcerated, it is not that easy to take the right away from you. Whether you use it wisely is another matter. Whether you manage to do it with grace and dignity may be a matter of skill, style, breeding and knowledge. But is it selfish?

Much well-documented work has been done on the immense opportunities for bonding with loved ones in the days before death occurs. There are moments of deep sincerity in which love is somehow communicated, pathways to the heart opened, and a deep meaningfulness achieved. Critics of self-euthanasia and assisted suicide argue that these moments are not to be tossed away lightly. Exit agrees, and has published much work on this theme, yet does it negate the idea of choosing the moment of one’s death? The importance and value of our loved ones, and meaningful moments shared, are things that can be rightly treasured. The self-willed person, planning euthanasia, may even value them more, and plan or discover them to an even greater degree. Studies suggest that rational suicide, such as at the end of a terminal illness, often brings healing and a sense of closure to those bereaved (but this is reversed in cases of irrational suicide.)

So how far should we live for others, stay alive for others? Is the purpose of your life to exist for others?

I’d like to share if I may two clips from an award-winning film, The Hours. Richard is a Pulitzer-Prize winning poet. His best friend, Clarissa (Meryl Streep), is throwing a party in his honour to celebrate. Richard is dying, slowly, of AIDS.

(apologies to our readers who found a large blank space here! … we weren’t aware that video embedding wasn’t allowed on wordpress blogs without a $99 subscription, so they were deleted after a day or so — do please just follow the links below, where they are shown legitimately – warning, these movie clips are quite graphic and some viewers may find them upsetting.)

1. http://youtu.be/CWAAUSNLZXQ   2. http://youtu.be/vWZapP8b11s

In the first clip, he raises the question of his death with her and she responds as expected. He also takes her back to a moment they had shared many years ago, a moment of beauty that encapsulated (for them) the joy and meaning of being alive.

In the second clip, just before he ends his life, he takes her back to the moment again and lets her realise the depth of love he feels for her as his friend, a love she has always felt for him but never realised in totality. He brings her to an awareness that she has been living her life for him, just as much as he has been staying alive for her. He calls her “Mrs Dalloway,” a character from Virginia Woolf’s eponymous novel.

“Would you be angry if I died?”, he asks. She responds as you might expect.

” I think I’m only staying alive to satisfy you,” he continues.

She replies: “That is what we do, that is what people do, they stay alive for each other.”

On Richard’s death, she discovers that she also is now also released, she rediscovers her own life (not shown in the clip) and her love for her partner.

This is a fictitious drama with an intertextual play on the character of “Mrs Dalloway,” who, at the start of the novel, decides to “Buy the flowers herself” (presumably, rather than send one of the servants.) Flowers are here a symbol of love, and it is an action that Clarissa also decides on for the party. Yet she is living a character, trying to be someone for someone else. Richard uses his dying moment to free her from the illusion of living in character – in other words, for someone else.

The film makes no judgement on the rightness of wrongness of self-euthanasia (rational suicide); yet the rich emotion that it is possible to present in great fictitious works such as this enables us to access a depth that is hard to achieve in dry analysis alone.

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Exit welcomes CPP clarifications

Screen Shot 2014-10-19 at 22.28.40A statement issued last week by the new Director of Public Prosecutions, Alison Saunders, clarifies the Guidance of the Crown Prosecution Service (England & Wales), and eases some of the fears of doctors and others in the medical profession over cases of encouraging or assisting suicide.

The medical professions have seemed particularly vulnerable until now, given that they have a special relationship with patients known as the “Duty of Care.” This is a legal obligation requiring a doctor, nurse or other professional, to conform to a standard of reasonable care when saying or doing anything that could foreseeably harm the patient. Failure to do so, could see that medical professional taken to court for negligence or barred from further practice. What is more, the test for negligence is based on what a doctor (for instance) of similar training and experience would have done (this, in law, is known as the ‘Bolam’ test). Under current UK law, a doctor or nurse is not reasonably expected to explain to you how to kill yourself, or travel to Dignitas for assistance in dying, and could be negligent if doing so. But what if that doctor is not the doctor treating you but just happens to be your friend or acquaintance?

Until last week, this was a slightly murky gray area. The CPS Guidelines provide two long lists of factors that are formally considered in the balance when deciding whether to prosecute an individual case. (You can find links to the Guidelines, together with the new update, in the sidebar of this Blog: if you are reading this on a mobile device, you may need to switch to desktop view to access them.) One of the factors tending in favour of prosecution, reads:

the suspect was acting in his or her capacity as a medical doctor,
 nurse, other healthcare professional, a professional carer
 [whether for payment or not], or as a person in authority, such as
 a prison officer, and the victim was in his or her care;

This might seem fairly straightforward, but as a doctor, do you want to take the risk? As a patient, do you want to risk putting that doctor in an impossible position?

Fears had led to some fairly draconian advice (doctors might feel supportive but that is not the same as being willing to risk 14 years in prison). The British Medical Association was quick to advise:

The BMA advises doctors to avoid all actions that might be
interpreted as assisting, facilitating or encouraging a suicide
attempt. This means that doctors should not:
 • advise patients on what constitutes a fatal dose;
 • advise patients on anti-emetics in relation to a planned overdose;
 • suggest the option of suicide abroad;
 • write medical reports specifically to facilitate assisted suicide
abroad; nor 
 • facilitate any other aspects of planning a suicide.
 • Patients have rights of access to their own medical records under
the Data Protection Act, and where a patient makes a subject access
request, doctors are obliged to provide the requested information,
subject to certain exemptions.

While the General Medical Council (which can revoke a doctor’s licence) wrote:

...any advice or information doctors give about suicide to patients
should be limited to an explanation that it is a criminal offence
for them to encourage it.

In June of this year, the (United Kingdom’s) Supreme Court urged the DPP to clarify her guidance after they had tussled with its clauses in relation to the Tony Nicklinson case. The new amendment to the CPS guidelines, issued last Thursday, clarifies the phrase “and the victim was in his or her care” with the following footnote:

For the avoidance of doubt the words and the victim was in his or
her care qualify all of the preceding parts of this paragraph.
This factor does not apply merely because someone was acting in a
capacity described within it: it applies only where there was, in
addition, a relationship of care between the suspect and the
victims such that it will be necessary to consider whether the
suspect may have exerted some influence on the victim.

The most pertinent application we might deduce from this is the difference when you consult your doctor, a situation where there is an accepted degree of influence, as opposed to when you speak to someone who just ‘happens to be a doctor. ‘ There are exceptions, and it is up to a court to decide if a duty of care exists in a particular case, but it generally means a situation where a doctor (or even a carer) is demonstrably caring for that person. Your registered doctor has a duty of care, as does the doctor in charge of your case if you go into hospital: but when there is no formal relationship then a person who happens to be a doctor may not have any more legal duty of care towards you than any other person. For instance, while his professional ethics may insist that he or she acts to help a drowning child, or a passenger on an airplane, there is no such legally required duty in UK law (this is not the case in a number of other countries).

Although Exit would, of course, like the present law to go further in protecting doctors or others that help someone out of compassion, it would seem that the DPP is doing the best job that can be done under existing legislation to be completely fair-handed. Indeed, her amendment reflects the fairness of her verbal submissions to the courts.

Our readers can discover more about how the law on assisted suicide is applied in some of the links below. Remember, it is a two-part test that the CPS always uses: these weighing up of factors to decide if it is in the public interest to prosecute only apply if the CPS considers there to be sufficient evidence to obtain a reasonable chance of conviction.

Further information

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The ethics of euthanasia, our books, this website, right or wrong?

motor way aheadIn almost every religion and philosophical system, the right to life and the right to live the way we want to as long as it does not interfere with the same rights of others, is something universally respected. I don’t much like the phrase “the right to die” because each of us is going to die anyway. Each of us is going to experience that both in our life one day, and as an ‘observer’ long before that. You could ask every family on this planet today and not one of them could say they have not experienced the loss of someone through death. Death, undoubtedly, is a fact of life. You have no right to die but you have a right to choose when and how. However, for ease of everyday expression we can talk about a right to die.

Rights can be a natural, civil or political privilege. They are a claim to an entitlement of some sort, and it follows that to mean anything your entitlement has to be recognised by others, hence our laws – and the philosophical idea that all rights entail duties (FindLaw UK). In the example I gave above, the duty is to observe the same rights in others.

Liberties and rights are not always the same. You have a liberty to be promoted in your job, but not a right (as it would affect the rights of others). But as a woman, you have a reasonable right not to be discriminated against on account of your gender! This is not something we will always feel instinctively. Your boss may feel privately and even passionately that he can discriminate on account of your gender: but the moral law, now enshrined in the laws of the country, says he may not do so. As he considers the moral position, how you are entitled to the same freedoms as man, as any person, he may come to understand. A person’s freedom, every person’s individual freedom, is the reason we have moral law at all; correspondingly, it is the moral law that provides us with the opportunity to understand our freedoms and the freedoms of others. In a way it is, and has long been, the basis of our society for many years (Kant 1788). For without freedom, what is your life worth?

At a recent conference, I started by listing some of the freedoms we often take for granted. You have for instance the freedom to live the way you want, to speak however you want, to write what you want, to love others the way that you want to. The only moral argument is that you do so without infringing the same rights in others, and unless there is a law set in stone then you also often have to be the judge of the morality of your action. You can’t walk into the National Gallery and write your name on a Picasso just because you have an innate right to write what you want to. You may decide, in certain circumstances that you have a moral right to help someone else, including helping them to die. The law however may disagree (in some circumstances and not others); and sometimes when you exercise what you believe to be your right the consequences might be so severe that your own right to freedom would be infringed, so you would have to weigh up the options carefully (DPP 2010). A person also has the right, let us not forget, to try dissuade someone else whom he feels is misguided in wanting to die.

Having dissected the “right to die” to find what it really consists of, it would feel natural to look at a similar “right” and ask the same questions. What is the “right to life”? Thomas Jefferson wrote in the Declaration of Independence that it was self-evident that all men are endowed with certain inalienable rights, among which are the rights to life, liberty and pursuit of happiness. It was not, however, self-evident to everyone – since a war for independence quickly ensued (Hood).

The “right to life” does not mean quite the same as the “sanctity of life,” but both ideas are deeply embedded in our society and way of thinking, without being absolute (Lord Keith 1993). War is a commonly quoted exception, which could be defined as the defence of one’s right to live the way one justifiably wishes to, without interference from others. Many books have, and still could be written on this subject. A difference between “right to die” and “right to life” organisations might be caricatured as “I have the right to live and die the way I want to, and I wouldn’t want to stay alive as a ‘vegetable’,” vs “I have the right to live and die the way I want to, and I want to stay alive as long as possible, even if I’m in a vegetative state.” The difference between the two sides is either a) a desire to extend one’s personal interpretation of these rights to others, or b) a fear that others will infringe on one’s rights.

What we are talking about is the rights of the living, to make choices, to do. Not so much of existence, but of the right to exercise and enjoy that life, that existence, in the way that one sees fit, without fear or favour. The idea of a debate between “right to die” and “right to life” can throw light on the issues but, alone, not progress them. Most people are somewhere in the middle. It is philosophically disingenuous not to see things from all sides and for this reason it is mostly not in my nature to engage in debate. Yet however all-embracing any one of us might wish to be, as individual, as persons, individual organisations, we still have specific lives to fulfil, specific tasks to achieve, and particular people we are drawn towards helping. Suicide prevention is as important an issue as rational assisted suicide (I’ve studied and worked in both.) I’m trained as an ethicist to examine all sides equally. Who can not feel the pain of someone bereaved at a moment that seemed wrong? Also, who could not feel the pain of someone forced to exist against their wishes, their lives fulfilled, but tortured to a slow death in direst agony? Suicide prevention is still, relatively, a new science. If society intervened with everyone displaying ‘at risk’ signs, ten times as many people would have their lives disrupted than helped (Smith 2008). Only when someone is clearly a danger to themselves can we, as society, intervene; but if there is any doubt then the principle of autonomy, of self-determination, takes precedence (Lord Keith).

The roots of Exit go back to 1935 (when the first voluntary euthanasia society was formed, in London) and to 1980 when it broke away from its parent group to publish a manual detailing ways of painless, dignified death. It was imperfect (and still is, as are all such manuals) but the work continues, and it is to address the rights of those people who want to be able to determine their own time and manner of dying. The purpose of this Blog, our books, our workshops, is to look at the practical options for that group of people. Years ago, such people would have thrown themselves off Beachy Head, put their head in a gas oven, hung themself from a light fitting or driven their car into a tree. If you have lost someone to an untimely suicide that was at least relatively painless, would you really have preferred their bodily remains to be scattered over the rocks below a cliff-top? Doing everything we can to prevent untimely suicide and empowering people with knowledge, even knowledge of the methods of suicide, are not mutually exclusive. Almost 280 pages of our current manual are devoted to examining the moral issues, to dissuade the unprepared and encourage them to explore all other possible solutions rather than death, and, if no other solution is acceptable to them, how to communicate with their loved ones and those dear to them and minimize their pain as well.

Among groups concerned euthanasia and with self-euthanasia, Exit is among the most conservative. Our legal proposals are for exceptions to the rule; our books are quite voluminous to read and absorb the information; there are no “how-to” instructions on our Blog or Homepage and we do not offer one-to-one advice even to members. We work (and encourage others to work or act) completely within the law. We run on a tiny budget (data-led research is costly) and are frequently harassed and blamed: yet it is a fact that anyone with internet access can simply skip our websites and find “instructions” on how to die from underground chatrooms and discussion groups (many of those are so irresponsible that we really can understand attempts to have them shut down for good, but please, leave us in peace!) If you are among the small proportion of people in this thankfully democratic country that opposes euthanasia, this is not the place for you (unless you are genuinely trying to understand a different view). We are sorry for your pain but please don’t send us your haranguing emails or death threats: really, we did not cause the problems in the world. We built the motorway for people who need to get somewhere quickly and safely; we put up a sign saying No Learner Drivers or Persons Unfit to Drive. We can point you to responsible sources for suicide prevention, bereavement, mental illness and so on, but that is not the job that Exit was set up for, the work that people desperately trust us to do to give them that insurance, that key to the door marked Exit if things get so bad they cannot take it any more. (And many have said how simply knowing how they could take matters into their own hands gives them courage to live on, to live longer.)

There is a small book in our office compiled in 1989 by one of the founders of Exit, Sheila Little, a tireless, charismatic, elderly grey-haired lady who devoted her life to our mission. That mission is expressed in the letters printed, with permission, in its pages: heartbreaking tales of people who just needed to know there would be a way out for them. They trust us to do that work.

And Who Should Forbid Them

 

Professional bodies working in law, medicine, psychiatry or other areas specific to our work are invited to contact us at any time. We cannot as a matter of course enter into general correspondence with the general public however, and if you are a member of the public wishing to discuss the issues raised on this website, please follow the appropriate links. (This is not a discussion forum.)

References. These are a small selection. Our book The Exit Path contains a deeper look at the ethics of publishing data on self-deliverance for both professionals and the public. It includes over 1000 references. Exit is committed to empowerment: that means data-led knowledge of methods of rational suicide as well as suicide prevention wherever that is a realistic option.

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“I will take my life today around noon. It is time,” she began.

Gillian Bennett, Jonathan BennettWhat sort of emotions does the statement evoke in you as you look at the picture on the left of this elderly woman and her husband? What assumptions do you make? 

The woman probably appears older. We maybe look at the title of the post, searching for clues. Readers might then divide between those that “Support the option of euthanasia with proper safeguards” and those that “Feel euthanasia is immoral under any circumstance” (plus a few in-between). Every picture perhaps tells a story, but the “story” may be quite different according to our perceptions and prior beliefs.

In real life, we all have particular principles, ideas, skills and knowledge. They are part of who we are. But when we interact with another person, a different sort of thinking also comes into play. Life is not a monologue. Our understanding of another person, of their situation, is modified as we talk with them. What might have been described quite clinically as “the situation” a few moments ago, has maybe developed into what we see as “their situation” and “our reaction.” The ancients called this type of knowledge ‘phronesis’ (φρόνησις), a practical wisdom that was acquired by thinking within a particular situation rather than applying prior knowledge alone.

The lady in the photograph is Dr Gillian Bennett, an eminent psychotherapist who was 83 years old at the time that she took her own life, after careful consideration of the ravages of dementia that she was starting to face.

“There comes a time,” she wrote in the four-page letter that was posted online by her son after her death — as per her request, “in the progress of dementia, when one is no longer competent to guide one’s own affairs. I want out before the day when I can no longer assess my situation, or take action to bring my life to an end.”

Bennett told her family of her plans, but did not allow them to take part: it would be a criminal offence in Canada (where she was living) to assist in a suicide, as it would be in the United Kingdom. She would not even allow her husband to take a mattress to the spot she had chosen to die, worried in case it could cause him trouble. “That pretty much broke his heart, that he couldn’t help her with that,” said her daughter, Sarah Fox.

In some ways physicians, they say, have it easier, since they have fairly ready access to drugs: but no-one can measure the extent of another’s suffering. The strident anti-euthanasia campaigners stay in an ivory tower of technical principles. Perhaps they would not be so judgmental if they sat down and actually listened to patients like Dr Bennett. It would seem that no matter how expert, how competent, how knowledgeable a person is, no matter how unrelievable and unbearable (to them) their situation is, an anti-euthanasia campaigner always thinks they “know best.” They feel doctors cannot be trusted. They feel that the law cannot be crafted to provide sufficient safeguards. Yet common sense says the opposite.

No matter what the prohibitions on voluntary euthanasia or assisted suicide, there will still be people who take their own life for very good reasons, some going to Switzerland to make the process where at least some others, their loved ones, can be present. “Certainly, assisted suicide doesn’t lead to more deaths. We’re all going to die anyway,” says Sarah Fox. “It doesn’t lead to more deaths, but it could lead to less suffering.”

Goodbye and Good Luck! Gillian Bennett’s memorial page (written by herself)
Newspaper report (Canadian Press)
Her letter to the Vancouver Sun
British newspaper report, and a video explaining dementia
Empathy and the application of the ‘unbearable suffering’ criterion in Dutch euthanasia practice
Empathy Versus Analytical Reasoning Not So Simple (PsychCentral News Story)

 

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Speaking for the majority

Screen Shot 2014-07-17 at 21.22.38This weekend, the influential (and, surprisingly, moderately rightwing) newspaper, The Economist, takes a strong stance in favour of assisted suicide, proclaiming,

Most people in the Western world favour assisted suicide. The law should reflect their will.”

It describes the horror suffered by Tony Nicklinson, paralysed by a stroke. (After being denied the right to die by Britain’s high court in 2012, he refused food and finally succumbed to pneumonia.) It discusses the objections one by one, and answers them. In the case of strongly held religious objections, for instance, it rests with common sense and says that, “In a pluralistic society, the views of one religion should not be imposed on everybody.”

The Economist praises the Swiss model (free for the Swiss, but prohibitively expensive for most foreigners who want to travel there). It concludes that although the current bill in the House of Lords would make assisted suicide legal in Britain for the first time, it does not go far enough, but that gradualism is appropriate to allow increased public support for further liberalisation. “We hope that it passes,” says this most level-headed of newspapers. “On such an emotive and contentious issue politicians should reflect society, not lead it.”

Jo Beecham, a woman diagnosed with advanced ovarian cancer in 2011, “keeps a stock of poison in her fridge,” says The Economist.” What they don’t mention is the difficulty of obtaining and ingesting a reliably lethal and painless poison. Suicide sounds easy: with more than thirty years of research that this organization has seen, we have to point out that often it is not.

Readers of the ExitEuthanasia Blog may be interested in our work researching the strengths and pitfalls of methods of rationally ending one’s own life. Here is a taster of our print journal. It features both academic and light reading but, most essentially, tips and research to supplement our books on self-deliverance.

(from the contents of the 2014 Summer Issue) –

STAR IN YOUR OWN EXIT We talk about our famous full-day empowerment workshops where people learn the techniques in a relaxed and convivial atmosphere.
SIGNATURE SUICIDE FOR A RATIONAL PERSON The first of this issue’s articles that looks at double suicides, plus the aesthetics and personal touches for helium, compression and other methods of dignified death. Following reader requests, we also consider research on a more controversial means – that of firearms.
DEATH: CAN IT BE A WINNING GOAL OF LIFE? What did the World Cup have to do with facing death? Inspiration from Neymar’s remarkable ability to score winning goals under pressure!
LONDON THEATRES ASK IF THERE’S A RIGHT TO DIE Theatre finds a way to stimulate, not preach.
NU-TECH – EXIT REPRESENTED ON THE INTERNATIONAL STAGE A brief mention on the coming conference at the World Federation of Right to Die Societies.
BOB’s STORY – an end to life in the Central Valley sunset.
HUMOUR – keeping the blues away.
SHARING LIFE EXPERIENCES (editorial on dehydration, thoughts of death)
WHAT WOULD YOU DO? LET THE INDIVIDUAL DECIDE – A joint self-deliverance with helium raises interesting questions.
AGM REPORT & reactions to the thought-provoking and controversial short film “Relics.”
HOW TO DO AND HOW NOT TO DO IT –A VISUAL GUIDE
TIPS AND TRICKS: for helium, drugs, and compression.
QUOTE/UNQUOTE – sayings to think about
IT TAKES ALL SORTS – The very unusual funeral of Mr Hunter S Thompsom
EXIT’S SELF-DELIVERANCE WORK REMEMBERED 1985 – 2014.

This week also sees one of the last taboos against assisted death tackled in one of the world’s leading multidisciplinary academic journals. In the Cambridge Quarterly of Healthcare Ethics, a Special Section addresses “Pathologizing Suffering and the Pursuit of a Peaceful Death.” Medical Law expert, Ben A. Rich points out that psychiatry has made strong inroads into hospice and palliative care, but has also brought with it a conviction that dying patients who seek to end their suffering by asserting control over the time and manner of their inevitable death should be provided with psychotherapeutic measures rather than having their express wishes respected. He critiques that approach from the perspective of recent clinical data indicating that patients who obtain and use a lethal prescription are generally exercising an autonomous choice, unencumbered by clinical depression or other forms of mental illness.

The excuses are running out. When Nicklinson heard that his appeal had been refused by the courts, we saw this grown man break down in tears, even though he could barely move. Such things should not happen.

 

Links:
http://www.economist.com

http://journals.cambridge.org

http://relicsfilm.com/tagged/look

Join Exit: http://www.euthanasia.cc/new_app.html

 

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Praise for The Exit Path

The Exit Path (cover)Richard Cone writes:
“Five Last Acts – The Exit Path” is easily the best book I have read on the subject of self-deliverance (suicide to end unrelievable suffering). Chris Docker, the author, is clearly a scholar on the subject. The text is richly annotated with background material and references to original articles, a feature usually absent from writing on this topic. The content is authoritative. As a person familiar with the physiology of death, I found the explanations lucid, completely accurate and informative.

One of the most compelling aspects of the book is Mr. Docker’s clearly stated descriptions of the advantages and disadvantages of each method. Importantly, his extensive discussion of fasting (refusing food and water) debunks misleading statements made by some others who advocate this method above all others. Docker’s handling of this issue is balanced, precise and refreshingly unbiased.

The main theme of the book is detailed explanations of each method, including step-by-step instructions with illustrations. Anyone considering self-deliverance would benefit by carefully reading these instructions. In addition to recipes for success, the text compassionately warns of pitfalls for each method that could lead to disability instead of death, an important consideration that is too often ignored. The book benefits from limiting the content to methods for ending life. The Introduction clearly states that related issues, such as legal restrictions, wills, and management of family and care-givers, while critically important to those considering self-deliverance, are not explained here. This allows the author to do a more complete job of the topic at hand, which is practical methods.

Five Last Acts is both a major contribution to the field as well as an indispensable resource for people facing intolerable suffering. Docker shows compassion and exceptional courage by producing this controversial work. In doing so, he is preventing untold suffering. –

Phil Cheatle (Bristol UK) writes:
“This book is so outstanding at what it does that I will not lend it to anyone else. That is the highest accolade for a book of this type. If you are seeking the knowledge it offers, you will not be disappointed, The book goes as far as it can to alleviate my end of life fears. The book is well researched and very thorough in its coverage. It is not without faults – sometimes repetitive and poorly laid out. However, these faults are acknowledged, and the reasons explained by the author. He has made the right decision to publish in its current form in my opinion.

It is a very sad reflection on society that this book is necessary. Why do we allow more compassionate end of life treatment for our pets than our human loved ones?
I do not want to have to use the knowledge in this book. But unless I can be assured that my end of life wishes will be carried out by others, when the time comes, without them breaking the law, I will use a technique from this book… unless I suffer a sudden illness or accident which leaves me unable to do so. That is my remaining fear that no book can help with. Thank you, for your careful research and for having the courage to publish it.

Barbara Pearce writes:
“The information in this outstanding book was urgently needed in today’s world and is hugely appreciated by an increasing number of people who want to understand suicide. If we want and need to know the choices open to us at the end of life, then how can it be possible that the knowledge is condemned and obscured by government and the medical fraternity? The book (FLA The Exit Path) allows people to prepare and understand their choices at end of life. The book is practical, detailed and realistic. Perhaps I will never need the knowledge but I am relieved and thankful to have it all the same.

“For anyone interested (should the need arise) in taking control over one’s own destiny in the face of an incurable condition, this book covers it all. I have read many publications on the subject but never one with this much information. It’s literally as thick as 4 standard books. This book brought me a lot of comfort, knowing I have the knowledge and support by my side for the unpredictability of the future. Thanks to the author for his courage and hard work on writing this one. (From ‘Jon’)

This book goes beyond other books on the topic and reflects the author’s many years and expertise in the right to die. Authoritative and well-written. I highly recommend it. – Cheryl

Excellent book! Not only covers the much needed understanding of the physiological aspects of the human body but touches on psychology as well. I thought it a very well written book, which did a nice job balancing all aspects of end of life issues. – Kate

(All reviews have appeared on Amazon)

Thank you to all the people who have posted reveiws. It is very hard work researching this subject responsibly and the feedback is very encouraging. Chris Docker, author.

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Does it really have to come to this??

 John and Robert McIlwain will be missed by those who knew them. Frail but friendly members of the local community, they tended their shared garden and even helped with that of their neighbour in the leafy cul-de-sac – at least while their health permitted.  They were described as “good neighbours and good people”; and the floral tribute left outside their home read: “RIP Bob and Jack. Two lovely gentlemen. Its been a privilege to know you and call you friends. You will be missed by us all.” Residents in the beautiful street in the Gracemount area of Edinburgh said how the brothers, who were very private persons, would have been “shocked” by the arrival of armed officers and a police helicopter.

What was their story, of a simple life well lead, and a sudden, violent end that they saw as their only option?

The two brothers were aged 71 and 73 at the time that they died. Bob had worked with asbestos in his younger days and that had resulted in lung problems. He understood that treatments were very limited and also what the disease had and would do to him. Suddenly becoming more frail over recent months, he had taken to using his brother’s mobility scooter and was using oxygen for breathing problems related to his asbestos- related pulmonary fibrosis.

John had been disabled from birth by a hip problem, but could get around until his later years, when he became housebound, with his brother Bob looking after him. Both been keen golfers at one time, but their health had deteriorated over the years, becoming much worse about 18 months ago. Like Bob, John suffered from asbestosis, for which there is no cure.

A few weeks before their deaths, they had asked around at their neighbours, having no surviving family, to find someone to witness signing their wills. Said one of the neighbours, “Bob loved to look after his garden, and even helped with other people’s, including mine, but he wasn’t able to do that any longer because of his health. It was hard for him to give it up. He had to hire a gardener to do it for him. I last saw him on Tuesday and he just waved at me as he stood at his door.”

Both Bob and John were licensed firearm holders. A police source said: “We received a call from a man who claimed he was going to kill himself. When police arrived, two bodies were found in the house.”  The two brothers were found slumped on top of a firearm, with gunshot wounds to the stomach, at around 6pm last Thursday (29th May 2014). Rush-hour traffic in the area was gridlocked for more than two hours as police closed off a one-mile stretch of nearby Lasswade Road, a main commuter route. A police helicopter was also called in to observe the scene from the air. Police denied any suggestion that one brother had shot the other, insisting that it was a double suicide and with no suspicious circumstances.

“I think it was a brave thing for them to do,” said another neighbour. “Bob knew he wasn’t going to get better and he saw what was ahead of him. It’s very sad and they will be missed.”

Anne Parker, 83, who lived next door to the brothers, said, “There was no evil in them, they were as good as gold. They were very thoughtful,” and added, “I can only imagine that they had planned it and that it was done out of love.”

John and Bob McIlwain lived at Lockerby Cottages is a quiet residential street off Lasswade Road owned by the Lockerby Trust, set up in 1894 for “distressed gentlefolk who had fallen on hard times.”

What do you think? Was their death justified? Should there be gentler options for folk who feel they want to end their lives in unbearable circumstances? Is the police furore a fitting end to what should have been a private affair, or even a good use of public resources?

 

Further reading
Asbestosis (medical outline)
Asbestos Awareness (British Lung Foundation)
Pulmonary Fibrosis (NHS guide)
‘Gunmen’ headline (Daily Record)
What to do after a death in Scotland (Scottish Executive bereavement advice)
Send your views to the Holyrood Committee on the current Assisted Suicide Bill (intro)
Assisted Suicide (Scotland) Bill (Scottish Parliament)
Exit’s general legislative recommendations and principles

Warning: The result of a failed suicide attempt, frequently through inadequate knowledge of guns, can be horrific.
See for instance: this Neurosurgery page or this Wikipedia page, or this presentation on difficulties of non-fatal aftermaths.
Firearms suicide and attempted suicide is less common in the UK than in the USA.

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“They” said it would be easy! Choose your experts carefully…

image663389557"I stopped taking any nutrition a week ago. It was
the only choice I saw to end my life, the only
thing I can control. The literature I read said
it wouldn't be hard, and it isn't -- it's brutal.
My loved ones support me, but this is as difficult
on them to watch as it is for me to execute.

The experts told Charles Selsberg that refusal of food and liquid as a means of ending his life would not be painful. They were wrong. “But I know someone who did it and they died very peacefully,” you say. Indeed. But it is a method with many factors and what works for one person will not necessary work for someone else. Be very careful which experts you listen to and which literature you trust.

Starvation/dehydration is such a complex subject that The Exit Path spends no less than 50 pages examining and analysing the evidence and presenting guidelines based on collating data from more than 100 published sources from academic studies and the mainstream press. Yet each month we hear of some well-meaning source suggesting that it is ‘painless’ or that it is the ‘ideal’ way to go; and the same month we hear of another prolonged and painful death where someone took that advice at face value. In this short article, it is only possible to give the briefest of outlines, but we say, don’t take our word for it, look at the evidence.

How is what we tell different to the advice from other sources, some of them eminent doctors or even some right-to-die groups? The answer is metadata. We don’t just look at a few examples and add on some convenient theory. We search and search again, paying particular attention to failures and their causes. We look at the medical hypotheses and see if they stand up to the most difficult examples. We are probably one of the very few organisations that can devote full-time investigation to get to the bottom of controversial self-deliverance issues. We ask other experts to criticise our findings just as we criticise our own. When it comes to someone’s life and death, we think they deserve more than a belief, a ‘wish-and-a-prayer.’

So what are the basics on starvation-dehydration as a means of self-deliverance?

1. Firstly, you need to be in the category of persons for whom it is possible (but not inevitable) that it will work well in ensuring a peaceful and painless death.

2. If that is satisfied, you need to prepare. Once you have embarked on your terminal fast, it is too late to put the necessary things in place.

3. You need to be familiar with the probable course of your terminal fast, what to expect, the potential obstacles that may require urgent attention.

4. Your friends and family need to be aware also, how your appearance will change and your physical capacities become less. You will need to know how you can exert some control over your progress to interact with them.

5. You need the willing back-up of a medical person able to prescribe such (legal) drugs as may become necessary to relieve symptoms that arise, as well as some basic day-to day nursing care.

6. The process is voluntary. In theory, you can stop at any time; but there is also a point of no return. Calling it, “voluntary refusal of food and liquids” is a fuller way of describing it to cover the moral issues. There must be no question of relatives or carers refusing liquids or nourishment. “Starvation-dehydration” simply identifies the physical process causing death.

Let’s not beat about the bush: there are many people who die peacefully by this method and many that don’t. Tony Nicklinson (see previous blog) was severely debilitated. He was also in touch with many sympathetic doctors. Charles Selsberg was less fortunate.

Many terminally-ill cancer patients experience a bodily “shut down” and no longer feel a desire for food or drink. Many of them also have excellent hospice care to manage any conditions that arise. Many of the studies on death by starvation-dehydration have been in similarly well-managed clinical settings. Yet Jane Gross’s mother, paralysed and desperate to die, had medical back-up in her nursing home and still suffered. “The first three days were so-so,” says her daughter, adding that, on a scale of 0 to 9 where 9 is “a very good death” her mother’s condition would have been a 6. “The last three days were peaceful, an undisputed 9. It was the week in the middle that was harrowing, at best a 3.”

Finally they got an outside pain consultant to persuade the staff physicians that they could raise the dosage without risking legal liability. “Only then did my mother stop pumping one arm frantically, clenching her jaw and staring wide-eyed at the ceiling.”

Excited by the findings of a Dutch psychiatrist, one right-to-die group led by a doctor had even started recommending refusal-of-food-and-liquid as the best way to go, failing a change in the law. Horrific newspaper reports of bad deaths followed, and the group quickly played down their advice.

Factors that can eliminate (or severely increase the difficulty) of patients from point (1) include being overweight or having a pre-existing condition that increases the likelihood of organ failure. Nursing needs can include care of the mouth so that it doesn’t dry out completely (and painfully), bed turning to prevent sores, and general observation to anticipate medical needs. Medical needs commonly occurring are the need for ordinary prescription drugs to control things like sleeplessness, anxiety, occasional breathlessness and pain. Emotional needs should be thoroughly addressed by full and open advance discussions. Advance equipment might include a nebulizer or hand-held atomizer, saliva-replacement gel, eye-gel (or ‘artificial tears’) and nasal sprays, plus Vaseline or lip-balm. A soft-toothbrush for oral care, and a gauze soaked in alcohol-free chlorhexidine can be used on the gums and tongue to prevent fungal infections in the mouth.

No-one undertakes raional self-deliverance unless their suffering is unbearable. If they make that final choice, everything should be done to ensure that they do not unwittingly bring even more suffering on themselves.

Exit received an award from the Natural Death Centre in 1996 for its ground-breaking study of death from refusing food and liquids. It has continued to research and publish in this area for almost 20 years.
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No helium, no bags, no information, can’t talk about it, where will it end?

nicklinson  S.CHow much respect does the law really give you for your private life? Your family life? Your private arrangements between you and those you love and who love you? This apparently straightforward question is one that our highest court wants to decide for us. They are still ‘deliberating.’ Perhaps they think we are “just not capable” of deciding how to live and die. Is that really the case?

Slavery(1) was abolished in 1833. You now have the right to live your life as you please, without interference from others, and without interfering with their lives — at least that’s how the theory goes. One day you will die but, while alive, you must have the right to die how, and when, you will, or your status as a human being wil be reduced. The courts, so far, don’t agree. It remains more a case of, if you can get away with it, fine! The Court of Appeal holds that there is no right to commit suicide, since the Suicide Act(2):

“. . . can more accurately be described as conferring an
immunity from the criminal process for those who actually
commit suicide. A fortiori, if there is no right to kill
yourself, there can be no right, fundamental or otherwise,
to require the State to allow others to assist you to die
or to kill you”(3)

Having decided what the law can ridiculously get away with, religious, political, and well-meaning motherliness push lessening your rights further. I can buy a car, a perfectly lethal mechanism to end my life or that of another, and no-one suggests cars should be banned. Yet there are people seriously wanting to ban sales of helium. If we compare helium to cars, there is little doubt in my mind which is the most dangerous and which is the most dignified. In America, ordinary plastic bags and tubing (“Gladd bags”) were banned.(4) Cars and guns aparently are ok, but plastic bags are not (the tubing happened to be the right size for conecting a tank of helium, but these bags and tubing are available from many a highstreet store).

Last year, pressure was put on Exit resulting in the loss of our credit card trading facilities. The main inconvenience is to overseas members, for whom paying their magazine subscription becomes more cumbersome. The silliness was probably aimed at restricting information — information that can be gleaned from newspapers and medical books, hundreds of underground internet sites (not this one) or more responsibly and reliably from Exit publications (which anyone can buy from Amazon). What happens when you make it hard for people to get sensible information is that they resort to bootleg sources. Books or websites with inaccurate instructions, or horrible and undignified methods of suicide. Chemical suicides (a Russian roulette that endangers other people), potpourris of pills or other backstreet methods.

Tony Nicklinson(5) was refused help by the Courts and starved himself to death. Luckily, he died well. Starvation is a particularly risky method for many people and there are many cases of a horrble ddeath when they are unprepared.(6) Indeed, no less an authority than Lord Browne-Wilkinson stated:

"How can it be lawful to allow a patient to die slowly, though
painlessly, over a period of weeks from lack of food but unlawful
to produce his immediate death by a lethal injection, thereby
saving his family from yet another ordeal to add to the
tragedy that has already struck them?"(7) 

A patient that cannot move has less options when it comes to choosing the time and manner of his or her own death. Why do we do it? The likely answer was succinctly put in a recent Law digest:

"Rather than face head on the most difficult fact of life, that it
must end, we force people with severe physical disabilities to
continue their lives despite their express and maintained desires
to the contrary, even though we do not do so to able-bodied people.
In a society striving for equal opportunities in all other areas,
this anomaly cannot be ignored."(8)

The Supreme Court (U.K.) is currently grappling with this question of assisted suicide, since severely paralysed people are disadvantaged and unable to make a simple choice on how and when to die in the same way that able-bodied people can choose. The issue is whether the prohibition on assisted suicide is incompatible with the right to respect for private and family life. If the answer is yes, to comply with such rights, the Suicide Act 1961 should include a defence of necessity, so as to make it not unlawful for a doctor to assist in a person’s suicide when that person has made a voluntary, clear, settled and informed wish to end his or her life (but is unable to do so without medical assistance). Alternatively, if no such defence is available, the Court should declare that, in such circumstances, the Suicide Act 1961 is be incompatible with the rights to private and family life.(9)

Some people hope that our so-called “right-to-die” will seventually just go away. If only it would die, and its ashes swept under a table! But it doesn’t go away. While life goes on, the prospect of our eath, and of dying well or dying badly, continues to be a live issue.(10)
(1) The Slavery Abolition Act 1833 (citation 3 & 4 Will. IV c. 73)
(2) The Suicide Act [1961]
(3) R (Nicklinson) v A Primary Care Trust [2013] EWCA Civ 961 (para 55)(4) “A less than Gladd end” (ExitEuthanasiaBlog)
(5) Mail Online  The Independent (newspaper reports on Tony Nicklinson)
(6) Overview of rational suicide methods, including starvation
(7) Airedale Hospital Trustees v Bland [1992] UKHL 5
(8) Elaine Freer, Halsbury’s Law Exchange
(9) Current Supreme Court Cases, R (on the application of Nicklinson and another) (AP) (Appellants) v Ministry of Justice (Respondent)
(10) See also, Rosalind English, “Is there a right to die in English law?”

Regular readers interested in legal nuts & bolts: please find links to cases & statutes in the right-hand column.

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