The costs of freedom?

In the recent edition of our print magazine, we published a thoughtful essay by one of Britain’s most eminent psychiatrists, Dr Colin Brewer. In his lead article, Brewer examined suicide trends over the years and asked what difference, if any, the access to means or information makes to suicide rates. But beyond this, he asked an even more difficult question: whether the means of suicide should be completely outlawed even if it is abused.

Most members of society’s like EXIT follow robust and happy, fulfilled lives. If one day they are faced with unbearable and unrelievable suffering, should they be forced to endure a drawn-out and degrading dying to ‘protect’ those who might abuse freedom? We could prevent most road deaths by requiring all vehicles to travel at the speed of horse-drawn carriages. “But almost everyone seems to accept that this annual carnage is a price we can and should accept in the interest of personal freedom and economic necessity.” Similarly, few people called for gas ovens to be banned when they were becoming a common means of suicide. In the USA, even massacres of schoolchildren seem unlikely to lead to more than minor changes in the well-entrenched gun culture.

And what of the Internet? Says Brewer, “The e-genie has been out of the e-bottle for a long time and there is not much that we can currently do to put it back.” This is particularly relevant at a time when well-meaning but often misguided pressure groups are harrying the government to ban websites relating to suicide information. True, there is some small, debatable evidence linking Internet addiction statistics and suicide. Partly the idea that someone can read about a suicide method and impulsively put it into effect. But most studies refute the idea on the grounds that although such regrettable deaths might seem impulsive, the truth is that the persons have been thinking about it and planning for a long time. This is an important point for suicide intervention programmes.  But also raises a worrying point for Exit: by making access to information on painless and ‘safe’ methods of suicide harder to come by, the authorities are often abandoning suicidal individuals to dangerous and painful deaths. Hence the rise in ‘detergent’ suicides – which also endanger the lives of paramedics and fire service. If someone is determined to end their own life, and all suicide intervention programmes have been ineffective, and nothing anyone says is going to stop them, would you rather that person managed to die painlessly or would you see them die in agony?

Most methods of suicide are freely available on the Internet. Not from this site – but from underground newsgroups that tend to give poor quality information. Such groups are hard to track down and do something about, so instead people often vent their anger at a respectable, established organisation that upholds the wishes of more than 80% of the population – a group like Exit.

Every human life is valuable. But freedom to act, to decide one’s own destiny, is at the core of what we value about life. It gives life dignity and meaning.

Further references:

• Smith A, Witte T, Teale N, King S, Bender T, Joiner T, Revisiting Impulsivity in Suicide, Behav Sci Law 2008; 26(6):779-797.
• Currier D, Internet and Suicide, in: Quigley M (ed), Encyclopedia of Information Ethics and Security, Information Science Reference 2007, 384-390.
• Preventing Suicide: A Resource for Media Professionals (World Health Organisation, 2008).

Getting the truth from your doctor

Need to get to Dignitas for assisted suicide? You’ll need to provide some medical records.

Up till now, this has worried some doctors. Under the Guidelines from the Director of Public Prosecutions, it could perhaps be interpreted as encouraging a suicide. But this week the General Medical Council has said that providing copies of a person’s medical records is “too distant from the encouragement or assistance to raise a question about a doctor’s fitness to practise.”

This is a step forward.

There has been concern in the past that a GP might not be willing to provide a copy of a patient’s medical records. Dignitas do require a medical report sufficient to verify the patient’s condition. Some doctors have been afraid that to do so might be construed as assisting a suicide under UK law. The General Medical Council (GMC) is the body that can decide on a doctor’s fitness to practice and anything that might be seen as assisting or encouraging a suicide might be grounds for preventing that doctor from practicing in the future. On 31st January 2013, the GMC finally issued guidance on this point as follows:

Some actions related to a person’s decision to, or ability to, commit suicide are lawful, or will be too distant from the encouragement or assistance to raise a question about a doctor’s fitness to practise. These includes (sic) but is not limited to:                                                                                          

a) providing advice or information limited to the doctor’s understanding of the law relating to encouraging or assisting suicide

b) providing access to a patient’s records where a subject access request has been made in accordance with the terms of the Data Protection Act 1998

c) providing information or evidence in the context of legal proceedings relating to encouraging or assisting suicide.

All this should provide much clarity for doctors and relieve the pressure on GPs. Previously, a patient would sometimes need to seek out a sympathetic doctor who was willing to provide a report. However, although these new guidelines should ease the situation, as one doctor told me, “Much of what we write in a patient’s records is in code anyway, so the patient can be none the wiser after accessing their records.” Much of this code-language seems to relate to private thoughts about a patient that shouldn’t appear in print. Hopefully it would not affect meaningful information relating to an unbearable condition. Neither should it be assumed that a doctor will cooperate in providing medical information beyond the terms of the Data Protection Act. Please note that there is a small fee applicable to obtaining your medical records in the UK.

Under the Data Protection Act 1998, you have a legal right to apply for access to health information held about you. This includes NHS or private health records, whether held by a GP or by a hospital. If you want to see your health records, you don’t have to give a reason. NHS guidance recommends it is a good idea to state the dates of the records when you apply. The health records manager, GP or other healthcare professional will decide whether your request can be approved. They can in theory refuse your request if, for example, they believe that releasing the information may cause serious harm to your physical or mental health or that of another person. Under the Data Protection Act, requests for access to records should be met within 40 days. However, government guidance for healthcare organisations says they should aim to respond within 21 days.

Further information:
GMC guidance on assisted suicide
Download the GMC document
NHS guidance on obtaining your medical records
Mail Online, GPs’ secret language revealed, 10 March 2011.
Medical slang in British Hospitals
Dignitas 

Thinking Out Loud

Exit Newsletter is one of the main foci of this organisation. Although Five Last Acts II remains the standard publication and reference volume, it is through the newsletter-magazine that we can reach members with tips and updates. In this way, it supplements our workshops where members can experience hands-on scenarios and personally connect up a tank of helium, find out about local suppliers, practice compression techniques in a safe environment or have their questions about potential drug use analysed and answered.

The current issue has a typical focus on self-deliverance topics. A three-page article on Emergency Self-Compression includes new diagrams & photos to supplement the reader’s understanding of this means of rational suicide – a method that requires no complex equipment or drugs, and that is so discrete that it can be used in a hospital without attracting unwanted attention from staff.

Short articles, Catching a Rainbow and Just Say No examine, respectively, the quest for barbiturates and the ins and out of refusing foods and liquids as two methods that have both benefits and drawbacks.

Bagging Old-Style looks at the traditional method of using a plastic bag in conjunction with some mild sleeping drugs and examines how the method largely fell out of favour – partly through lack of correct knowledge and partly through the rise in popularity of helium as a method of choice among members of ‘right-to-die’ societies. Elsewhere in the same issue are articles about the role of Dignitas in Switzerland and the pros and cons of assisted suicide there as the method of choice; then Drug Cocktails dispels some of the commonest fallacies about drug overdose as a means of suicide.

Of course, a whole magazine devoted to methodology would be rather dry reading. A two-page spread addresses criticisms from someone opposed to our work. The correspondence began as harsh criticism (received by email) but, once our unique position and views had been communicated, developed into respect and thanks. We do what we do, and we really are not at odds with any other groups (including suicide prevention groups) once both sides examine the finer details.

We were also very fortunate in this issue to have two first-rate contributions by Social Scientist, Emeritus Professor and Honorary Senior Research Fellow at Glasgow University, David Donnison. In the lead article, Thinking Out Loud, he both talks about his own process of facing eventual death and then – with typical Exit practicality – explains how anyone can set up what he has called ‘Diealogue’ groups with friends and contacts to discuss non-religious aspects of one’s own eventual demise. (The Glasgow project has been very successful and even has its own website.)

Book reviews and other ‘coffee-table’ fillers are included in our magazine – no need to mention them in detail here – but hopefully this short overview will offer our Euthanasia Blog readers more of an idea about Exit’s work and even whether to consider if the magazine is something they might wish to receive. Unlike most ‘newsletters’ it is not a round-up of news – although we maybe mention when a bill on euthanasia is being proposed again in parliament. The reason for this is that such news is now available from many sources. Most right-to-die societies offer a newsletter, or you can find free mailing lists or even set up free ‘google news alerts’ to get news on euthanasia and assisted suicide delivered to your inbox.

What Exit does – research and publish, as responsibly as possible, information on methods of rational suicide (or ‘self-deliverance’) – is less common. We’ve been doing it since 1980 and it is the reason our particular organisation was formed.

In our current view, this is not material that should be bandied about online, any more than lethal drugs should be available to children at a corner store! So the magazine is only available to subscribers (see our parent site, euthanasia.cc if interested) and certainly not ‘on-demand’ (there’s usually quite a waiting period). But for adults that take a responsible interest in controlling their own living and dying, it has a very dedicated following (and also, from other ‘right-to-die’ groups around the world who value our research).

Where does the Blog feature in all this? The Blog hopefully manages several things. For anyone remotely interested in the subject, we try to provide original articles. The right-hand column also links to resources such as legal cases and other blogs we find interesting. Our main audience is the thinking individual, so we have little motivation for ‘preaching to the converted.’ We try to analyse current issues in a new way sometimes, or add information that also is of interest to our print-version members or to those more deeply concerned. But – just in case anyone is still wondering – we don’t answer emails by telling you how to kill yourself!

The dilemma with thinking out loud is having a consideration and awareness of the listener – or in our case, the reader. There is a process of self-discovery in airing one’s thoughts, but also with the overview that it is to help, not to confuse or endanger.

“Thinking Out Loud” is also the title of Professor Donnison’s lead article, describing how groups can ‘think out loud’ together to overcome the taboos on discussing death and dying and, in doing so, maybe find human answers to some of the human problems.

Exit in the British Medical Journal

How To Die With Dignity was the world’s first “How To” manual.

How to Die With Dignity was the world’s first rational suicide manual for persons suffering from unbearable and unrelievable illness. This month, the BMJ, one of the world’s leading medical journals, publishes details of Exit’s work and history.

It was a London doctor, Colin Brewer, who probably first mooted the idea. “I drafted most of the proposed booklet (the first of its kind) but some members objected or feared prosecution, which caused delays. Scotland never criminalised suicide and has no specific law against assisting it, as exists south of the border, so impatient Scottish members declared independence and published a booklet in 1980.”

He notes that updates advice (more than 400 pages) is still available from that Scottish society, which as you know is called Exit. The BMJ ran articles by Colin and by Exit, explaining the position then and now.

(Both articles are available in the print edition and online, but for copyright reasons we can only reproduce the one from Exit.)

As the author of the updated do it yourself advice and director of the Scottish society, Exit—both mentioned by Brewer(1)—I would like to clarify a few points.

Many people are worried about the ready availability of information about suicide. Exit takes both patient empowerment (of the kind mentioned by Brewer) and suicide intervention seriously. Those with a persistent rational wish to die (as exemplified by Tony Nicklinson(2)), and those who need to be protected from their own temporary suicidal urges, deserve honest recognition and support.

We make information on self deliverance available to UK members of Exit in strict accordance with the law, after a basic age check and three months’ wait. These precautions prevent young people or those in the first stages of acute depression from obtaining the information. Newer evidence on impulsivity challenges the accepted view that people can be suddenly “pushed over the edge” to suicide,(3) but we still enforce the three months’ wait.

Suicide information is available online—from newsgroups recommending bleach and toilet bowl cleaner (hydrogen sulphide suicides) or less painful methods and from organisations similar to ours. We are a very small player.

The print version of our updated advice is also available to anyone.(4) Until legislation allows a full range of assisted dying options, and better safeguards exist for the current “back street or Switzerland” approach, this seems the “least worst” course of action.

Notes
Cite this as: BMJ 2012;345:e7073

Footnotes
Competing interests: CD is the author of Five Last Acts and director of Exit.

References

1. Brewer C. Assisted dying: “all good doctors do it anyway.” BMJ2012;345:e6536. (28 September.)
2. Kmietowicz Z. Man with locked-in syndrome who fought for doctors to end his life has died. BMJ2012;345:e5729.
3. Smith A, Witte T, Teale NE, King SL, Bender TW, Joiner TE. Revisiting impulsivity in suicide. Behav Sci Law 2008;26:779-97.
4. Docker C. Five last acts (2nd edition): expanded and revised. Exit, 2010.

Methods of suicide

There are two fairly distinct groups of people who consider suicide, or do end their life by suicide – the first is those who very regrettably feel unable to bear what essentially is, or should be, a temporary trauma – no money, no girlfriend, terrible news, and so on (or some other type of deep depression). The second is that group of adults thinking rationally and who like to be in control of all aspects of their own life where possible and, when faced with the prospect of suffering that is neither temporary no relievable, want to decide the manner and timing of their own departure from life.

This organisation takes both groups very seriously. Empowering the second group with the knowledge often gives them the courage to live longer – a fact we have known for many years but which has also recently been commented on by a leading news magazine. At the same time, suicide prevention/intervention for the first group is equally important. Their true will is to live. But what we also know is that, if the country makes one means of suicide less available, the overall suicide rate is not affected. Desperate, suicidal people just use a different means.

This does not deter some suicide prevention groups, who seem to think that banning the means will be an answer. We don’t agree, but we do feel that knowledge of the less desirable consequences of some methods may encourage people to think twice, to gain a breathing space where they can maybe get a new perspective. For the terminally ill – those who have already explored all the palliative options and found them lacking – this will generally not be an issue.

What we don’t do is give specific instructions on our websites. Some studies have suggested that having instant access to information might encourage suicide. We find the evidence on this inconclusive, but we prefer to be safe, knowing that persons seeking self-deliverance will generally both choose sensible methods and spend the time needed to read a book on the subject, making sure they do not incur further unnecessary anguish and or self-inflicted pain.

In Five Last Acts II, we look at the most effective and painless methods of self-deliverance and go into considerable detail (with step by step diagrams) on the nuts and bolts. We are not going to do that here. The information is easily available online (sadly) but not here. Everyone knows (or can very easily find) the basics through newspaper accounts of persons who have ended their lives (for whatever reason) using helium or household chemicals. But this blog entry has two objectives:

1)     To comment briefly on some of the methods most accepted by ‘right-to-die’ societies, for those already familiar with such literature, and

2)     Hopefully to dissuade persons thinking of using household chemicals or other noxious methods.

We are not here to tell or persuade anyone what to do or not do. That is up to the individual to decide for him or herself. We hope people only choose wisely.

Helium is the method that is most unanimously favoured by the four main self-deliverance organisations worldwide. It requires a little preparation but is straightforward and painless.

Compression is an emergency method that can be used with no special equipment, for instance, if one is confined to hospital. Although very simple in essence, at self-deliverance workshops only about half to two-thirds of participants were able to understand and apply it correctly in dress-rehearsals.

Drugs. Many people think that taking a large overdose of whatever sleeping pills or tranquillizers they happen to have will be fatal. This is far from being correct. Most people attempting suicide in this manner simply wake up again, putting themselves through a lot of misery for nothing. A ‘drugs alone’ option involves either very careful planning with specific combinations of drugs or else getting barbiturates from developing countries (barbiturates are an older, very powerful sleeping drug, that have largely been removed from the market in the West – it is how Marilyn Monroe died). Obtaining barbiturates in such a manner risks imprisonment as they are classed as highly controlled narcotics.

Plastic bags and sleeping tablets. Before the days of helium and hydrogen sulphide suicides, this is the suicide option that most people will remember from the newspaper accounts. While it is the ‘traditional’ self-deliverance method, many people failed, due to incorrect application.

Other methods. These, the last selection of the “Five Acts” options that are detailed in great depth in our literature, covers methods that might be possible for some people but not others. The main one is starvation from stopping eating and drinking. Contrary to popular belief, this needs considerable preparation and expert all-round support. It is a very dangerous method to attempt otherwise and can lead to horrific death. With suitable advance preparation and nursing support it can be a peaceful option for suitable individuals. It is the cultural and lifestyle choice for end-of-life in Jain some communities to this day. Two “popular” methods deserve some mention, both originating (in their present form) from Japan. The first is carbon monoxide poisoning. People in the West used to use this way years ago. It was the “car in the garage and engine running” scenario. Now, the law requires cars are fitted with catalytic convertors that remove most carbon dioxide. But the big danger of carbon dioxide poisoning is that if it goes wrong – and there are many possibilities for it to go wrong – the person is left brain-damaged. The more modern version involves charcoal burners but carries similar risks and is best avoided. The other method – that you will have read about in the newspapers and on this website – is mixing household chemicals to produce hydrogen sulphide. This seems to have grown apace as a copycat suicide method, especially in America, but is nonetheless quite horrific. If the person is very lucky, death is almost instantaneous (as promised by amateur websites). If not, the person dies as the gas burns away their lungs and they choke. Inhaling the gas in an enclosed space (in an attempt to get enough of it and quickly enough) leaves emergency personnel at risk. Many have been hospitalised, even where warning notices have been left. Hydrogen sulphide being a heavy gas that does not disperse easily, passers-by or people in the neighbourhood are also put at risk.

It is often said that most depression can be successfully treated with modern drugs. Such medicines are prescribed millions of times around the world. But how can a pill help you if you have no money, a broken relationship, or no home? These are real questions that have to be faced. Medicine is not the same as having a job. But what they often can do is give people a breathing space, to take off some of the mental-emotional pressure. Where one day there appears to be no hope, a little later, after successful treatment, a person genuinely realises there are other possibilities open. If you are feeling depressed and suicidal, it really is worth chatting in confidence to your doctor. In fact, just chatting to someone. Talking often makes a difference. And sometimes, readjusting the chemical balance that makes things look so black allows rational options to appear – ones that are at least worthy of consideration.

For persons facing a terminal illness, the types of mental challenges are rather different. As death approaches, the choices for action, our power of making and implementing decisions, often becomes less. Knowing – not guessing, but knowing – having the safe and secure knowledge about the things mentioned here, can often restore a sense of power and hope. No-one throws away life easily – the will to live is strong. But if my prognosis was to die today in a peaceful and dignified way by my own hand, or suffer until the weekend with unendurable pain, then it is nice to know that I could put my choice into action. Knowledge is often power. So while reading the book (or several books) on self-deliverance can make you forewarned and forearmed, don’t forget the other types of knowledge you need to acquire. A deep investigation of the likely course of your disease and all the palliative care options that can be obtained. The best pain control and the limits of that pain control (often better pain-control is available than that which is offered, so make a fuss.) And, if you are facing a long illness that involves a major change of lifestyle – say in a wheelchair or bed-bound – talk to a variety of people – those in a similar situation if possible – and maybe understand different ways of looking at things.

We hope that no-one reading this will feel they have to take their own life. But if, after everything we say, you feel it is the only option, then we hope you achieve your goal with less suffering and not more.

Five Last Acts II is available from Amazon websites in the U.K., U.S.A., Japan, Germany, Spain, France and Italy. Other retailers may also be able to order it for you.

An unusual death by cyanide

Dramatic news pictures and footage show Michael Marin collapsing in court after swallowing cyanide

As the organisation behind such publications as Departing Drugs and Five Last Acts II, Exit receives many queries about methods of suicide. Cyanide is one of those drugs that has been shrouded in mystery and drama since the days of World War II. While we do not offer one-to-one advice, the very public death of a former millionaire at the end of last month provides an opportunity to air some of the facts and fallacies about this little-known method of suicide. While it has been traditionally thought of as a ‘knock-out’ drug causing ‘instant death,’ complex concerns over its painlessness have dissuaded self-deliverance organisations from recommending it outright.

Michael Marin, a former Wall Street banker, is seen swallowing something in court as a verdict on an arson charge is read out. Minutes later, we see him collapsing. Investigations after his death indicate cyanide poisoning.

Cyanide is undoubtedly quick. Chemically, the action is potentially similar to the effect of suicides involving household chemicals. But speed of action is offset by a painful and unpleasant death as the cyanide burns the stomach and, chemically, prevents the cells of the body from using oxygen. In 1993, the International Drugs Consensus Working Party  that assisted the authors of the seminal booklet, Departing Drugs, briefly considered how the unpleasant effects could be mitigated. The suggestion was to use a capsule enclosed within a larger capsule, to allow the cyanide to proceed further along the gastro-intestinal tract before being released. While feasible – empty gelatin capsules can easily be purchased on the Internet – variables and unresolved questions lead to cyanide being dropped as a method.

Michael Marin purchased sodium cyanide “for US$68″ over the Internet from a company called Chemical-Supermarket.com. Millions watching him on television see him put something in his mouth and, seven minutes later, go into convulsions as he falls to the floor and can’t be revived.

Cyanide can kill in many ways. Inhaling the gas, ingesting it, or even injecting (the last one is hard to do as completing the injection oneself may be impossible). It has been used in warfare and, for a while, in executions. Suicide by cyanide was used by members of Hitler’s Third Reich; and by the father of computer science Alan Turing (after being hounded for his homosexuality). Symptoms after swallowing it include nausea, retching, convulsions, gasping (breathlessness) and collapse.

Its dramatic appeal may make it a drug of choice for those who are relatively healthy and want to make a colourful exit rather than people with an unrelievable and unbearable illness who want to make a sensible departure when all other options have been exhausted.

The Internet includes a wealth of speculation and misinformation on suicide by cyanide, so we are including some of the more reliable sources for those who wish to know more (and hopefully be dissuaded from using it) as well as news pages for those interested in seeing or reading about Mr Marin’s demise.

Daily News (report & video)
Digitraid (news report & video)
Further news coverage
Hydrogen cyanide in Compendium of Chemical Hazards
Cyanide toxicity (Medscape)
Chapter on cyanide poisoning (Baskin & Brewer)
Suicide by Cyanide (Forensics journal)
Is Execution by Lethal Gas Cruel?
General Principles of Poisoning (Merck Manual)

A few deep breaths of sulfide sadness – suicide gone wrong

Suicides and attempted suicides by hydrogen sulfide are rapidly outstripping gentler, safer, more peaceful, and less risky method. This week brings another two cases of ‘sulfide gone wrong.’

In the first case, a man in his 20s creates a concoction of toilet bowl cleaner, shampoo and other household chemicals to produce a hopefully fatally toxic gas. Last year, the Exit Euthanasia Blog warned that the logic in using these things is fatally flawed. The chemical compositions of such materials are either unknown, or liable to change without warning, or both. We don’t shy away from the method. We’re not trying to sell you a helium tank or an ‘exit hood.’ We’re just pointing out stuff based on science and our own researches rather than the pseudoscience and wishful thinking of underground forums.

The man got wrong. Without enough sulfur, the mixture that should have killed him in seconds wasn’t working. He called 911 to save himself. He survived, but what the newspaper reports don’t yet say is what his health will be in the future. The long-term effects of hydrogen sulfide exposure can be unpleasant, including damage to the heart in serious cases, neuropsychological problems, and long-term damage to the olfactory system. The man’s mother was also left with the cleanup bill, totalling several thousand dollars. Clean-up crews initially refused to contain the toxic waste because the woman’s credit card was almost maxed out.

36 hours later, another man mixed some chemicals up to kill himself and succeeded. But his mother, who tried to save him, was almost killed by the fumes. Both she a a state trooper needed emergency medical treatment.

Exit’s books and member’s journal detail research into methods of suicide, supported by medical evidence.

Links:
ABC News report
A further news report
Hydrogen sulfde exposure without loss of consciousness: chronic effects (Journal article)
More long term effects
Health effects of Hydrogen Sulphide (long report)

How will you die?

We are all going to do it at some point in our lives, but popular conceptions can be far from reality.

Characters in soap operas, for instance, tend not only die quickly but mostly from unusual causes. In reality, most people, especially over the age of 35, die after a long period of illness. Often this means long-term care. A hospital bed costs around £435 a day and a hospice bed, while hard to calculate, about twice that in real terms. While most people would prefer to die at home, it is often either not possible because of the illness, or not possible because of lack of community support.

For readers concerned to have control over the timing of their death at their choosing, this complicates matters considerably. A helium tank might be fine and dandy – but not if you cannot get out of your hospital bed and find it impractical to be discharged. Of the leading textbooks on self-deliverance, only Five Last Acts II covers emergency methods that can potentially be used in a hospital or nursing home.

Palliative care is perhaps most advanced for various types of cancer (which form, in total, the second biggest cause of death). Heart disease is the biggest killer, for which palliative care is far less well developed. Most people seem to be ill for several years before they die. And when it is known that their illness is going to be fatal, there is still usually a relatively long period during which we are wondering how to come to terms with their loss.

Many of us will not be so fit mentally or physically in the time leading to unavoidable death. Coping with day-to-day life will present new and very serious challenges. We might have a struggle arranging care, or paying for things (one man was told to report to the Job Centre or lose his benefits, even though he was terminally ill in a hospice). We might feel very confident during good health, a living will in one hand, and a stash of helium or fatal drugs in a secret place should push come to shove. But what if we end up with round-the-clock care in an institution? What if our mental faculties are not up to speed in preparing a lethal ‘exit’ cocktail?

We tend not to think about such taboo subjects. If we do contemplate dying, the image portrayed by television dramas seems more helpful to get us through the basic idea that we don’t live forever. But is it really different from any other major aspect of life? A sensible approach is to be aware of the various possibilities and an idea of what is involved. Considering your options doesn’t make you ill or speed up the inevitable.

Further reading:
What we die of (easy visual chart from the Guardian newspaper)
‘Come to the JobCentre or lose your disability allowance’ terminally ill man told
How We Die: Reflections of Life’s Final Chapter (book by Sherwin Nuland)
Chronic Terminal Illness, When Do You Say Goodbye? (article)
Trajectories of eventual fatal chronic illness (graph)
Trajectories of Illness Across Time (article)
Leading causes of death in England and Wales (statistics chart)
Mortality statistics (Open University)
Death rates of characters in soap operas (British Medical Journal)
Top 10 Occurrences before and after death (warning: slightly graphic!)
Hospice care costs (quoted in legal report)
Who will look after me if I have advanced cancer? (Macmillan support page)
End of life care in different settings (Marie Curie Cancer Care)
200,000 people a year should die at home, not in hospital (Demos Think Tank)

(And just to finish on a brighter note!)
“Take advantage of five before five — your life before your death, your health before illness, your free time before your preoccupation, your youth before your old age, and your wealth before poverty (i.e. preparing for the Hereafter).”
[Ahmad & Bayhaqi]

Putting it in writing

A watchdog committee has found that hundreds of people are being given inappropriate end-of-life care, and a substantial number being resuscitated against their wishes.

(What follows is a lengthier article than usual, but we feel it may be of interest to a sufficiently large number of people to justify it.)

The National Confidential Enquiry into Patient Outcome and Death reviewed the care given to 585 acutely-ill patients who ended up having a cardiac arrest. The watchdog concluded that cardiopulmonary resuscitation (CPR) had wrongly become the default setting. Details of whether or not to give CPR was recorded in the notes of only 122 patients in the study of hospitals in England, Wales and Northern Ireland. Of these, there were 52 cases where doctors had performed resuscitation on patients who had explicitly said they did not want it.

So are living wills the answer, or are more extreme measures needed? A reader writing to the EXIT Euthanasia Blog asks:

“I am 79 with a Living Will which asks that I not be resuscitated. I note that some doctors are ignoring some patients’ wishes in this respect. I also note that one senior lady has had a tattoo Do not resuscitate done on her breast. Is this the way to go? A medallion with DNR on it might be an attractive alternative – but I expect that could go missing. Before I book into the tattoo parlour I’d appreciate any comments.
Yours faithfully, Reg Jackson

It sounds like a pretty good idea if you want to be sure . . . but the reality is sadly a little more complicated.

Let’s take a look at living wills to start with, and a patient’s advance medical directives generally. If you make a clear statement, refusing certain treatments should certain situations arise, that is binding in law (as long as people know about it). But there are many ‘and, ifs and buts.’

The first requirement is that it is clearly a competent statement. If you’ve written something that you probably had no understanding of and/or weren’t capable of making such a decision, the refusal is null and void. A good way to address this is to discuss your wishes with your doctor at the time of making your living will and, if possible, get him to sign it to say that you have discussed it. (Of course, if you don’t have capacity anyway, or it was reasonable to believe you were acting under duress, it would also be null and void.)

Secondly, the refusal must be applicable in the circumstances. To illustrate this principle as applied to DNR instructions: unless it is written by a doctor, a DNR usually has provisos. For instance, you might say that, should you be hospitalized with a terminal condition from which there is little chance of recovering an independent lifestyle, you would not want to be resuscitated. These provisos are necessary because many people, especially if they are relatively young and healthy, would want to refuse in such circumstances but would also (quite understandably) want to be resuscitated if it was a sudden heart attack or accident from which they would reasonably be expected to recover completely if given rapid resuscitation. The law requires that any advance refusal of treatment therefore is applicable in the circumstances that have subsequently arisen.

If you have a specific diagnosis and can anticipate likely treatments offered, it’s a cinch. Otherwise you may well have to specify a number of possible scenarios.

There are other niceties, witnessing the declaration and so on, but those are the two main legal crunch conditions: competently made and applicable in the circumstances.

So to come on to tattoos, you can see that a tattoo is unlikely to fulfil the legal requirements. Does that make it useless? Well the answer is, not quite. It provides a general idea of your likely wishes in any given circumstance. So it needs to be taken into account by law, but is not binding.

But there are two further major hurdles for any advance refusal of treatment.

1) Generally speaking, there has to be enough time for the medical team to make a reasonable and competent decision as to your wishes in the circumstances. When it comes to an emergency – you’ve ceased breathing and there are only moments to decide whether to attempt resuscitation – the first legal duty is to attempt to stabilise you. A living will in the bottom of a handbag or even a tattoo is not likely to stop doctors in their tracks. This is where such patient-led initiatives can fall down: if a person is in hospital and has discussed DNR with the consultant, then a properly considered and authorised DNR can be added to the patient’s status – 0ne that those tempted to respond to an emergency would be obliged to recognise – but a non-authorised or invalid DNR cannot be taken with the same seriousness.

Similarly, if one is in hospital, the medical team is aware of your living will and its specific instructions, then, should the relevant circumstances arise they will be bound to follow your wishes in the matter. That is very different to an emergency, even though the principles (of respecting patient autonomy) are the same. And for good practical reasons. But this leads us on to . . .

2) They have to be aware of your living will. A medallion with words to the effect that “I have signed a living will” would possibly be more helpful than the words “Do Not Resuscitate.” Not binding in itself, but alerting staff to a document which they should consult before taking any considered decision.

If you are lying helpless, it might be quite difficult to start shouting the odds and demanding that doctors go look for your living will. This is where a third party can come in useful. You should ideally have copies of your living will (made after you duly signed it) lodged not only with your doctor, but with someone who is close to you and can be supportive of your opinions in such things. Simply by going along to the hospital and making a loud fuss by your bedside, while waving a copy of your document, should be enough to get the medical team to take note.

Finally, there is the question of interference in an attempt at self-deliverance. There are steps you can take to minimise the likelihood of emergency teams trying to resuscitate you following a rational suicide, but they are beyond the scope of this article. We refer readers to the book Five Last Acts II (see top right of this page), which covers both methods and legal / medical precautions.

For a fuller examination of using living wills, and a set of documents to choose from, these are provided free to persons joining the Society as part of the New Member’s Pack.

References
BBC News: NHS ‘too quick to resuscitate acutely ill people’
Gran has ‘Do Not Resuscitate’ tattoo
Medical tattoos on the rise: Report
Medical ink trending up — but can tattoos save lives?
A living wills page
Join EXIT
Five Last Acts II

On this day

In 1990, Dr. Jack Kevorkian carried out his first publicly assisted suicide, helping Janet Adkins, a 54-year-old Alzheimer’s patient from Portland, Ore., end her life in Oakland County, Michigan.

Euthanasia and the Golden Palm

Haneke wins highest honour for film exploring euthanasia

The Palme d’Or is the highest award at the world’s most important festival of cinema. Founded in 1946, it is the most prestigious and publicized film festival on the planet. And this year, the Palme d’Or was won by the highly respected Michael Haneke – for his movie exploring old age, the approach of death and, implicitly, euthanasia.

When there are so many movies celebrating the question of a good and peaceful death, why make such a fuss about Haneke’s? Let me tell you why. So often, a film will come down in favour of euthanasia. Right-to-die supporters clamour to say how strongly and movingly it ‘makes its point’ – but does it really?

This year, the BBC, hardly a bastion of anti-establishment ideas, has been frequently criticised for its ‘pro-euthanasia’ stance. Any bias might be more perceived than real, but the reality is that anti-euthanasia groups get a chance to be heard, to demand their side, to say that Pratchett’s coverage of Dignitas was not ‘balanced.’

In the end, it is mainly the right-to-die supporters who are ‘convinced.’

But art works at a different level. It is able to stimulate the viewer at higher realm of awareness. It works not to preach a viewpoint but to create beauty – sometimes with a consciousness of issues that goes beyond the usual diatribes of “for” and “against.” In fact for-and-against battles and debates often serve merely to polarise an already controversial topic. Most members of society are not passionate advocates one way or the other: they simply have a healthy interest in the “issues.”

Haneke believes that films should offer viewers more space for imagination and self reflection. Films that have too much detail and moral clarity, Haneke argues, are used for mindless consumption by their viewers. Amour (“Love”) is his second film to win the much sought-after award. It stars Jean-Louis Trintignant and Emmanuelle Riva as an elderly couple struggling to cope after one of them suffers a series of strokes. “This film is an illustration of the promise we made to each other, if either one of us finds ourselves in the situation that is described in the film,” said Haneke.

His films are often seen as the opposite of mainstream American cinema, that tells us what to think, what to feel. “My films are intended as polemical statements against the American ‘barrel down’ cinema and its dis-empowerment of the spectator. They are an appeal for a cinema of insistent questions instead of false (because too quick) answers, for clarifying distance in place of violating closeness, for provocation and dialogue instead of consumption and consensus.” Amour is set for release in America on December 19th, 2012, and in the UK on November 16th.

Amour has so many plot twists as it approaches the handling of an assisted death that it will keep your moral compass on high alert.

References
The Cannes Film Festival
Article in The Guardian newspaper (with clips from the film)
Winner announced
Applause at the ceremony as Haneke accepts award
BBC coverage
Coverage by The Independent newspaper
Review of the film