Thursday 30 June 2011

British Medical Association undermines credibility of Falconer Commission on 'Assisted Dying'

The British Medical Association, representing 140,000 British doctors, has this morning questioned the stated impartiality and independence of Lord Falconer’s Commission on Assisted Dying, supported the BMA leadership’s stance in not giving evidence to it and called on the British Medical Journal Editorial team to present a balanced and unbiased coverage of the Commission.

Delegates at the BMA annual representative meeting in Cardiff overwhelmingly voted this morning for a five part motion proposed by Dr Mark Pickering of the Yorkshire division (watch the debate here - listen from 1h56m and Dr Pickering's speech here)discrediting the independence of the commission in a move that will seriously undermine its credibility (Hear my podcast here)

Falconer’s commission was set up last November at the instigation of Dignity in Dying (formerly the Voluntary Euthanasia Society) to investigate how the law might be changed to allow assisted suicide and euthanasia. The commission has said it will take oral and written ‘evidence’ throughout this year and produce a report in the autumn.

DID’s hope was that the conclusions, when published, might influence parliament. This now looks very unlikely. DID was forced to go down the route of a private commission when its attempts to get a parliamentary committee to look at this issue failed.

There have already been three attempts to legalise assisted suicide in Britain over the last six years but all have been singularly unsuccessful resulting in defeats of 148-100 (Joffe Bill), 194-141 (Falconer amendment) and 85-16 (Macdonald Bill) in 2006, 2009 and 2010 respectively.

Falconer’s commission has already received a lot of bad press on the grounds that it was unnecessary, unbalanced and lacking in transparency.

Nine of Falconer’s twelve commissioners have publicly supported a change the law to allow assisted suicide and the remaining three are certainly not against it.

Of the first eleven expert witnesses originally invited to give evidence (I was one) six declined to do so.

The British Medical Association is one of over 50 organisations which have subsequently refused to give evidence.

The motion, all five parts of which were passed by a clear majority on a show of hands, reads as follows:

* 305 Motion by THE AGENDA COMMITTEE (Motion to be proposed by the YORKSHIRE REGIONAL COUNCIL): That this Meeting:-
i) notes that the significant majority of members of Lord Falconer’s Commission on Assisted Dying are publically in favour of assisted suicide and euthanasia;
ii) supports the BMA’s stance in not giving evidence to the DEMOS Commission on Assisted Dying;
iii) questions the stated impartiality and independence of the Commission on Assisted Dying;
iv) requests the BMA Ethics Committee to make the Association’s opposition to assisted suicide and euthanasia clear to the Commission on Assisted Dying;
v) requests the BMJ editorial team to present a balanced and unbiased coverage of the Commission on Assisted Dying.

Monday 27 June 2011

A footnote on Falconer

I posted yesterday the transcript from Charlie Falconer’s disastrous interview with Radio Four’s Ed Stourton, where the noble Lord was forced to concede that his commission on assisted dying was stacked full of the usual suspects and was tied in verbal knots trying to explain how it was still going to deliver an objectively written report.

I didn’t mention in my earlier expose of the committee membership (because it hadn’t happened at that stage) that the only MP on the commission, Penny Mordaunt, is now chair of the All Party Parliamentary Group on Choice at the End of Life.

‘Choice at the end of life’ is a euphemism for ‘assisted suicide and euthanasia’ and this is a huge conflict of interest for Ms Mordaunt. But of course, as Lord Falconer has assured us, she like all the other members of his committee, nine of whom are outspoken advocates for a change in the law, will make their decisions ‘solely based on evidence’.

The Secretariat (and I would guess the funding too) for this august body is provided by none other than Dignity in Dying (formerly the Voluntary Euthanasia Society). This All Party Group has a membership list which reads like a ‘who’s who’ of assisted suicide enthusiasts (Lord Joffe, Baroness Jay, David Winnick, Lord Warner, Earl of Arran, Lord Goodhart, Baroness Greengross, Caroline Lucas etc). The only one notable by his absence is Charlie Falconer himself.

Take good note of these names. When Falconer’s committee publishes its (surprising) conclusion that a new bill with ‘robust safeguards’ should be brought forward to legalise ‘assisted dying’ for ‘mentally competent terminally ill adults’ (with all the key terms rather loosely defined) this group will provide the prime movers and shakers taking it forward. It is in reality the political wing of the Voluntary Euthanasia Society.

Finally, I was greatly saddened to see the report in the Daily Mail about the man with multiple sclerosis, followed by Terry Pratchett in his recent ‘documentary’, who was helped to kill himself at the Dignitas facility in an industrial estate outside Zurich for the cost of his life savings of £10,000.

The title tells it all, ‘My brother took 90 minutes to die at Dignitas': What the BBC didn't reveal in controversial Pratchett documentary’. It is a chilling read.

I suspect there is a lot more that the BBC did not reveal – but that is what propaganda is all about.

BMA rejects move to lower upper abortion limit to 20 weeks for normal babies as six US States bring in laws to support it

In view of the BMA debate today (Tuesday 28 June) on lowering the upper abortion limit for able-bodied (as opposed to disabled) babies from 24 to 20 weeks (lost by 2 to 1 majority btw) I was interested to see this article yesterday in the New York Times, ‘Several States Forbid Abortion After 20 Weeks’.

It’s primarily a moan by a pro-choice journalist (this is the New York Times after all!) about how abortion laws are being systematically chipped away all over the US, state by state, by pro-lifers who are getting legislation passed to give women fully informed consent, the option of seeing an ultrasound, information about alternatives to abortion etc.

It also recycles ad nauseam the same tired mantra on fetal sentience by the Royal College of Obstetricians and Gynaecologists about babies not being able to perceive anything below 24 weeks, the view that has been termed ‘the Emperor’s new clothes’ by a recent editorial in a leading paediatric journal.

But what particularly struck me was the way that 20-week upper limits for abortion are being established all over the US, not by way of arguments about fetal viability at various ages, but by arguments about fetal sentience.

The author complains that ‘laws passed in six states in little more than a year, ban abortions at the 20th week after conception, based on the theory that the fetus can feel pain at that point… Since Nebraska passed the first 20-week limit last year, Idaho, Indiana, Kansas, Oklahoma and, this month, Alabama have followed. A similar law has advanced in the Iowa legislature, and anti-abortion campaigners have vowed to promote such laws in more states next year.’

No wonder the pro-choice lobby here is so keen to keep the argument on upper limits here focused on neonatal viability and away from 4D ultrasound and fetal pain.

It was striking that today the Chairman of Council Hamish Meldrum and the Chairman of the ethics committee Tony Calland both opposed the motion to provide better legal protection at the threshold of viability - and that Calland said the debate was all about viability (I have already critiqued the BMA briefing paper on this motion and given the arguments in its support)

As Bertrand Russell once said, ‘A fisherman once told me that fish had neither sense nor sensation but how he knew this he could not tell me’.

I wonder, does that tell us something about the propensity of UK gynaecologists and BMA leaders to cherry pick their scientific advisors on fetal sentience?

BMA rejects request to reconsider its position on presumed consent for organ donation – bad decision!

The British Medical Association today (Tuesday 28 June) rejected a motion calling it to reconsider its position on presumed consent for organ donation. This has happened just as the Welsh Assembly has announced it is introducing a bill to legalise presumed consent. The BMA supports presumed consent but Welsh doctors were trying to get it to rethink its position for both practical and ethical reasons. I believe these doctors were right and that the BMA has made a bad decision.

In the UK, the law regarding removal of organs from people after their death is set out in the Human Tissue Act 2004, covering England, Wales and Northern Ireland, and the Human Tissue (Scotland) Act 2006.

Both Human Tissue Acts state that if a person has, while alive and competent, given consent for some or all of their organs or tissue to be donated following his or her death (by joining the NHS Organ Donor Register or by other means, such as discussing their wishes with those closest to them), then that consent is sufficient for the donation to go ahead.

Once consent is established, relatives or other relevant people should be advised of the fact and encouraged to respect the deceased’s wishes. They will be treated with the utmost sensitively but advised that they have no legal right to veto or overrule them.

The Organ Donation Taskforce established a series of expert working groups to help gather evidence and advice on all these areas. The resulting report was delivered in November 2008. It recommended that the current system of opt-in be retained.

Presumed Consent (PC) for organ donation is presently utilised in 22 countries. With a PC law, all are deemed organ donors after their deaths unless they opt out of the system.

Wales aims to be the first UK country to introduce such a system.

Under the proposed ‘soft’ system of presumed consent, health professionals would still consult with families on whether they wish their relative to donate an organ after death.

The Welsh First Minister Carwyn Jones said last year that he hoped the move would increase the number of organs available for transplant.

And earlier this month he announced a bill in the Senedd’s legislative programme for the coming parliamentary session in the Welsh Assembly.

The British Medical Association (BMA) supports presumed consent but it remains controversial amongst doctors and many transplant surgeons oppose it.

Earlier this year CMF made a submission to the House of Commons Welsh Affairs Committee consultation on the matter.

The consultation was launched under the grandiose title of ‘Pre-legislative scrutiny of the proposed Legislative Competence Order in Council on Health and Health Services: Presumed Consent for Organ Donation’

Our submission expressed ethical and public policy concerns about the concept of presumed consent for organ donation and concluded that presumed consent should not be introduced anywhere in the UK.

The motion the BMA debated today at its annual representative meeting in Cardiff read as follows:

That this Meeting calls on the BMA to reconsider its policy on presumed consent for organ donation in view of the experience in Spain, where the evidence shows that presumed consent has had no effect on organ donation rates.

So why should delegates have supported this motion calling for the BMA to rethink its position?

Figures released just last week show that the number of people on the NHS Organ Donor Register has now reached a record 18 million. This means that in the UK as a whole, nearly 30% of people are registered to donate their organs after their death. There has been a 26% increase in organ donation since 2007 and we are on course to deliver the 50% increase by 2012-13 targeted by the ODTF report [NHS Blood and Transplant, Thursday 23 June].

This increase is to be welcomed. However, we know there is still a shortage of organ donors and, as a result, long waiting lists for transplant operations in the UK.

The BMA current policy on presumed consent assumes that changing legislation in the UK from an opt-in to an opt-out system, or presumed consent, will significantly increase the number of potential donors.

But this assumption is significantly flawed.

There are many factors beside legislation which affect donor rates. These include public awareness, religion, cultural attitudes to donation, hospital processes, provision of intensive care beds and numbers of road deaths, to name a few. In Spain, an important factor is ensuring that the relatives of potential organ donors are always approached by someone specifically trained for the purpose.

The experience of Spain is interesting. It does have a higher number of donors than the UK, and has presumed consent legislation but this is not a simple causal relationship.

It is acknowledged by the director of the national transplant organisation in Spain that the increase in organ donation during the 1990s could not be attributed to a change in legislation which had remained the same since 1979. In fact, the improvements in donor rates in Spain followed the implementation of a comprehensive national procurement system. (NHSBT statement 2008).

Moreover, although some European countries with opt-out systems do have higher donation rates than the UK there is no clear evidence that opt-out is the sole factor. Sweden has an opt-out law but their donation rate is lower than that of the UK. And within almost all countries, large local variations exist in donation rates, despite a common legislative background.

Moreover we should remember that the increase we have seen in the UK has been achieved without presumed consent but by implementing some of the recommendations from the Organ Donation Taskforce, especially improved promotion and public recognition of organ donation.

The issue of presumed consent is about more than donor numbers though. We cannot ignore the ethical and practical concerns it raises. These include concerns around the ascertaining and timing of a diagnosis of death, concerns that treatment before death could be influenced in some way by the preservation of organs after death, concerns for some about the value of bodily integrity, and what is sacred about bodily death, and concerns that presumed consent undermines donation as a gift and erode trust in professionals – a concern equally held by recipients and their families. And of course concerns that silence indicates a lack of understanding rather than informed consent to the policy.

In short, there is no convincing evidence presumed consent legislation would make a difference in the UK to donation rates. However we do know it would generate ethical concerns by assuming consent even when it has not been given.

Instead we should be welcoming the increase in donors registered since 2007 that has been achieved through other means and discuss how we can build on that success.

Sunday 26 June 2011

Charlie Falconer confirms bias in composition of his Commission on Assisted Dying ahead of BMA debate on its legitimacy

Former Lord Chancellor Charles Falconer (pictured) appeared on the Radio Four Sunday programme this morning. His controversial ‘commission on assisted dying’ will begin to consider the ‘evidence’ it has gathered this coming Wednesday.

Falconer’s commission was set up last November at the instigation of Dignity in Dying (formerly the Voluntary Euthanasia Society). The commission has said it will take oral and written ‘evidence’ throughout this year on whether assisted suicide should be legalised and produce a report in the autumn.

DID’s hope is that the conclusions, when published, might influence parliament. DID was forced to go down the route of a private commission when its attempts to get a parliamentary committee to look at this issue failed.

There have already been three attempts to legalise assisted suicide in Britain over the last six years but all have been singularly unsuccessful resulting in defeats of 148-100 (Joffe Bill), 194-141 (Falconer amendment) and 85-16 (Macdonald Bill) in 2006, 2009 and 2010 respectively.

Falconer’s commission has already received a lot of bad press on the grounds that it is unnecessary, unbalanced and lacking in transparency.

Of the first eleven expert witnesses originally invited to give evidence (I was one) six declined to do so. Over 50 organisations have subsequently refused to give evidence.

One of these is the British Medical Association which this Tuesday, at its annual representative meeting in Cardiff, will consider a motion dealing directly with the commission. The text is as follows:

* 305 Motion by THE AGENDA COMMITTEE (Motion to be proposed by the YORKSHIRE REGIONAL COUNCIL): That this Meeting:-
i) notes that the significant majority of members of Lord Falconer’s Commission on Assisted Dying are publically in favour of assisted suicide and euthanasia;
ii) supports the BMA’s stance in not giving evidence to the DEMOS Commission on Assisted Dying;
iii) questions the stated impartiality and independence of the Commission on Assisted Dying;
iv) requests the BMA Ethics Committee to make the Association’s opposition to assisted suicide and euthanasia clear to the Commission on Assisted Dying;
v) requests the BMJ editorial team to present a balanced and unbiased coverage of the Commission on Assisted Dying.

You can listen to today’s interview on Radio Four Listen Again (33.16-43.40 minutes). The piece begins with the presenter Ed Stourton speaking to George Pitcher, who has subsequently written the story up in a blog titled ‘On radio this morning, Lord Falconer painted himself into a corner on assisted suicide’.

Pitcher made the point on radio that nine of Falconer’s twelve commissioners have publicly supported a change the law to allow assisted suicide and that the remaining three are certainly not against it.

He called the commission ‘utterly bogus’ and a ‘kangaroo court’ and said it was a ‘cunning bit of schoolboy politics’ for Falconer to invite people to give evidence to such a body. If they agreed they would risk giving it a legitimacy it did not deserve. If they didn’t Falconer could simply say that he had made every effort to involve them.

Falconer was then interviewed live. Here is the beginning of the transcript:

Stourton: ‘Lord Falconer… it is as a matter of fact true isn’t it that you come to this with form if you like. The funding for your commission has come from those who are sympathetic to a change in the law so it’s disingenuous to present yourselves as independent and objective’

Falconer: ‘I don’t think it is. I come to it with form in this sense; I proposed an amendment to the law in the Lords… The funding does come from two people who are in favour of a change in the law but I and all of my commissioners have made it absolutely clear that we will approach the matter on the evidence…’

Stourton: ‘It’s just difficult for people to swallow that when the overwhelming majority of you are pro change isn’t it … (chuckles) I mean it doesn’t look very independent does it?’

Falconer: ‘Well come and listen – well I’m afraid you can’t come and listen to our private deliberations which are going to start on Wednesday… We have done an extremely hard working job in having every single interest represented and every single point of view heard’

Stourton: ‘Well. Wouldn’t it be fair to say at least this that you all begin with the presumption that the law needs to change?’

Falconer: ‘No’

Stourton: ‘Right. You’d be perfectly happy to come out at the end of this process and say that things are perfectly all right as they are?’

Falconer: ‘If that’s where the evidence takes us yes’

So there we have it. Falconer does not deny that the commission is funded by campaigners and stacked full of sympathisers. Yet he claims it will be solely influenced by the evidence. I wonder what a jury might make of that.

It is certainly going to be an interesting debate at the BMA meeting on Tuesday.

Saturday 25 June 2011

BMA still not listening to public or science on late abortion

On Tuesday 28 June the British Medical Association annual representative meeting voted against a motion which sought to provide legal protection for babies at the threshold of viability by a two to one majority.

The motion, proposed by John O'Driscoll of the Worcestershire division, read as follows:

’ That this Meeting believes that the legal limit for termination of pregnancy, in the absence of foetal abnormality, should be reduced from 24 to 20 weeks gestation.’

32% of delegates supported it, 61% voted against and 7% abstained.

Delegates were clearly influenced in their decision to reject the motion, both by a seven page briefing paper produced by the BMA (which was seriously unbalanced in its presentation of the scientific data) and also by the fact that both chairman of council Hamish Meldrum and chairman of ethics Tony Calland opposed it.

In 2010 there were 189,574 abortions carried out on residents of England and Wales but only 2,744 of these involved babies 20 weeks or over. Of these 792 (about 35%) were for foetal abnormality leaving 1,936 able-bodied babies aborted between 20 and 24 weeks. Every single one of this latter group was aborted under ground C, which in 98% of cases means protecting the mental health of the mother.

This motion was very modest in scope. It was simply about providing legal protection for about 2,000 British babies a year at the lower threshold of viability and would have reduced the number of abortions in this country by about 1%.

If the BMA had passed the motion it would have demonstrated that doctors were beginning to listen to the British public and the wider profession on this matter. Nearly two thirds of the public and more than three-quarters of women support a reduction in the 24-week upper age limit. 76% of the public think that aborting a baby at six months is cruel. Furthermore a 2007 poll by Marie Stopes International found that two thirds of GPs wanted a reduction from 24 weeks.

Why has public opinion changed on late abortion? There are five main reasons: 4D ultrasound, babies surviving below 24 weeks, stories of babies born alive after abortion, fetal sentience, and European precedent.

We have all seen Professor Stuart Campbell's high resolution 4D ultrasound images of babies 'walking’, swallowing, coughing, hiccupping from 12 weeks gestation and experienced how mothers bond emotionally to their babies as a result of these scans.

The public also know about individual high profile cases like Manchester's Millie McDonagh (pictured), born after a 22-week pregnancy and the world's most premature baby, Amillia Taylor, who was born a week younger in the US. Experts may argue about survival figures and about comparisons between population-based studies like EPICure and those from top neonatal units but the fact remains that some babies do actually survive below 24 weeks.

Stories of babies born alive after failed abortions are also not uncommon. In a 2007 West Midlands study of 3,189 cases of termination for fetal anomaly, 102 (3.2%) babies were born alive. This included 65.7% of those between 20 and 24 weeks. Accounts such as these understandably upset people.

And then there is the question of whether fetuses feel pain. The general public intuitively concludes that they do when they hear that from 16 weeks babies will recoil from a noxious stimulus in the womb and that premature babies born earlier than 24 weeks, if stabbed in the heel with a needle, will withdraw and cry. The RCOG wheels out its experts to tell us that babies below 24 weeks do not have the neurological apparatus to sense pain but fail to tell us that this is a controversial view not shared by other experts who regard it as being based on an outdated understanding of physiology.

Which of us, honestly, can imagine telling the mother who feels her baby kick at 20 weeks that it is not a sentient being?

Finally, Britain is out of touch with most of Europe in this matter. Most countries in the EU, 16 out of 27, have a gestational limit of 12 weeks or less. These include Germany, France, Spain, Portugal, Italy, Belgium and Austria plus most countries in Eastern and Central Europe who once had far more liberal laws. At 24 weeks Britain is up there with former Soviet States Lithuania and Latvia.

Passing motion 304 would have given more legal protection to 2,000 babies a year; just 1% of the total. It would have put clear blue water between the upper abortion limit and the lower threshold of viability. And it would have shown that the BMA was beginning to listen. Unfortunately they are not.

BMA attempts to skew debate on abortion upper time limit

I was interested to see this week a briefing paper on abortion provided by the British Medical Association in advance of a debate at the BMA annual representative meeting (ARM) next Tuesday.

The BMA’s Worcestershire division has proposed a motion (304) that the BMA support a reduction in upper time limits for abortion. It reads as follows:

‘That this Meeting believes that the legal limit for termination of pregnancy, in the absence of foetal abnormality, should be reduced from 24 to 20 weeks gestation.’

This motion is very limited in focus. Abortion is currently legal on social grounds up to 24 weeks and legal up to birth when the baby is disabled. This motion would restrict abortions on social grounds to 20 weeks or less but have no effect on limits for disabled babies. Currently 16 countries in Europe, including most western European countries, have upper limits of 12 weeks or less so it would be a very small step towards wider Europe.

The 7 page unauthored ‘briefing pack’ from the BMA claims to ‘provide factual information in order to facilitate informed debate’. The briefing has been sent as hard copy to delegates and is not available on the BMA website. This intrigued me even more.

Why is it I wondered that the BMA has devoted so much time and energy to influencing opinion on this particular issue when there are so many other important matters to debate for which delegates are provided with absolutely no briefing material at all?

I was fascinated to see what the briefing told us and what it didn’t. I was not surprised at what I found.

The briefing begins with a whole page outlining the law and giving what it calls ‘key statistics’ relevant to the motion. But I couldn’t find anywhere the one key fact I wanted to know. Ie. How many able-bodied babies between 20 and 24 weeks, as opposed to babies with fetal abnormality, are aborted per year? The number, according to the latest annual statistics, is actually about 2,000 – or more precisely 1,936 in England and Wales in 2010. This motion in other words is concerned with only 1% of the 189,000 abortions per year in England and Wales but you will not learn that from the BMA briefing.

There are then two whole pages on neonatal viability attempting to show that babies less than 24 weeks gestation are not viable. But these pages consist almost entirely of an evaluation of a multicentred study called EPICure which was carried out in 1995 – 16 years ago. Nowhere in the BMA paper are we told that the EPICure study incorporated data from all 276 maternity units throughout UK and Ireland, many of which had no specialised facilities for caring for extremely premature babies. EPICure therefore represents a lowest common denominator figure even for 1995. In no way can it be thought of as a best-practice figure for 2011!

Published studies from specialized units around the world have shown much higher survival rates than EPICure for babies born at 23 weeks of gestation ranging from 40-66% for babies born at 23 weeks. And even in EPICure10% of babies born at 23 weeks survived to discharge.

We then get eight lines on fetal sentience which regurgitates the historic RCOG position that fetuses cannot feel pain earlier than 24 weeks gestation. We get no evidence here, only unsupported conclusions. And we are not informed of the fact that the RCOG position is highly controversial amongst neurologists and neonatologists.

We are not told, for example, of the editorial in a leading paediatrics journal (Arch Dis Child Fetal Neonatal Ed ) in February this year by Martin Ward Platt, of the Newcastle Neonatal Service, who calls the RCOG report ‘an emperor with no clothes’. Ward Platt asks:

‘So, what is the evidence that the human fetus lacks ‘awareness’? In a word, there is none… I have looked at the references in the report, and the references in the references, and when I finally got back to the primary literature I found no evidence for the contention that human lack awareness, or exist in some different conscious state, beyond the unwarranted extrapolation from sheep. In contradiction to the notion of the ‘unaware’ fetus, the everyday experience of pregnancy – the felt behaviours and responses of the unborn baby, especially to sound – as well as much primary research literature on the human fetus, contains strong evidence for an opposite view.’

Finally we get 17 lines on a Southampton study authored by the well-known pro-choice activist Ellie Lee who backs abortion ‘as late as necessary’. This paper, which has not even been published in a peer-reviewed medical journal, seeks to justify carrying out abortions on 13-24 week abortions (nothing to do with this motion) on largely social grounds. Again it is dished up by the BMA as evidence-based research.

This BMA briefing paper on abortion cherry picks outdated medical literature on neonatal viability, presents controversial conjecture on fetal sentience as medical fact, recycles quasi-scientific surveys from the pro-choice lobby and tells us nothing about fetal ultrasound, medical or public opinion, numbers of babies born alive after abortion or the legal position adopted by other European countries.

At very best it is a profoundly unbalanced piece of pernicious propaganda aimed at misleading and misinforming the ARM in order to preserve the institutional bias of the BMA hierarchy on this issue. I’m not surprised that its authors haven’t named themselves.

Thursday 23 June 2011

New ‘withdrawal of treatment’ case poses major threat to disabled people

Radio Four’s File on Four programme earlier this week, ‘A Living Death’, featured four case histories of people with serious brain damage.

They included Ian Wilson, an Aberdeen man in his 50s, who suffered a severe head injury in a road accident 21 years ago and is now the longest surviving patient in the UK with vegetative state. He is looked after at home by his 83 year old mother. A second patient with the same diagnosis had died after a court ruled that food and fluids could be withheld.

People with so-called persistent vegetative state (PVS) may live for ten, twenty or thirty years – in fact the record survival is more than forty.

But since the Tony Bland judgement (picture) in 1992, in which the Law Lords ruled that a young man’s nasogastric feeding tube could be removed with the intention of ending his life, it has been possible in Britain to apply to the courts to withdraw hydration and nutrition from people who are severely brain-damaged but not dying.

But this is possible only for those in PVS. Those with lesser degrees of brain damage cannot have their lives ended in this way.

There are estimated to be between 1,000 and 5,000 patients with PVS in Britain today, but so far only 43 have died after court rulings allowing feeding tubes to be removed.

This radio programme was essentially asking two questions:

1.Should we be doing more to encourage families of those with PVS to go to the courts?

2.Should this form of ending life be extended to include those with minimal awareness states that are less serious than PVS?

Two doctors were interviewed, both professors in neurological rehabilitation, Derick Wade of the Nuffield Institute in Oxford, and Lynne Turner-Stokes of Kings College, London.

Turner-Stokes is the chair of a committee set up by the Royal College of Physicians to make recommendations about life-ending protocols for PVS patients. She pointed out the cost of looking after people so affected – about £100,000 per year – and asked whether this cost was justified given financial pressures on the NHS.

Wade was much more cautious and warned of the incremental extension that would follow any further change in the law.

The current law is soon to be tested by a case brought by the mother of a patient – known as M – who was left in a ‘minimally conscious state’ following an episode of encephalitis in 2003. The case has been reported by the BBC and Daily Mail and is to be heard in July this year.

Vikram Sachdeva, counsel for the mother, argues that M ‘is in a very low level minimally conscious state with no meaningful interaction with the environment.’

However, the application is ‘strongly opposed’ by the Official Solicitor, who represents M's interests.

This is a landmark case which, if successful, will radically redraw the law in this country and place the lives of many more disabled people at risk.

The Bland decision crossed a legal rubicon. Withdrawing nutrition and hydration from non-dying patients with the explicit intention of ending their lives is euthanasia by omission. This case, however, could take us several steps further down the slippery slope.

I will be watching it very closely.

Assisted suicide is still suicide and has devastating effects on those left behind

The BBC2 documentary ‘Choosing to die’ was an attempt by the pro-euthanasia lobby, aided by the BBC, to romanticise and normalise suicide.

After witnessing a man with motor neurone take his own life by drinking poison at the Dignitas facility, Terry Pratchett, fantasy novelist and patron of the Voluntary Euthanasia Society (now rebranded ‘Dignity in Dying’), declared that ‘this was a happy day’ and that he had just been in the presence of ‘the most courageous man he had ever met’.

He waxed lyrical about ‘the right kind of snow’ falling outside and announced that he himself would lie to die ‘in the sunshine’ after he had lost the ability to dictate novels.

But Pratchett was talking about a man he hardly knew. What we did not see, and what Pratchett was either unwilling, or incapable, to convey, was the wider picture – the effect of suicide on family and friends – and the feelings of loss, betrayal, failure and grief that only those who truly loved the deceased can truly understand.

Suicide is always a tragedy. One life is cut short and the lives of those left behind are changed forever. People react in different ways. Some will suffer under the burden of guilt that they could have done something more to change the victim’s state of mind.

Others may try to cope with the pain of the loss by trying to convince themselves and others that the person really wanted to die and is now better off dead.

Some will even attempt to romanticise the death in some way or to recast it as an act of bravery or self-sacrifice, rather than one of despair and abandonment.

But the reality is that suicide is never beautiful. It is ugly. And it has consequences.

I was therefore interested to read this week a different kind of testimony: the honest but harrowing account of a daughter who had accompanied her mother to die in Zurich previously, and the effect these events had had on her family.

Rona Royle, who was suffering from motor neurone disease, took her life at Dignitas on 17 December 2009, one of 160 Britons who have died there since the clinic opened in 2002.

The death was witnessed by her 78-year-old husband, their daughter Karen and her partner David.

Karen and David now find it impossible to erase from their minds the memory of the place where she died: a ‘blue tin shed’ on a barren industrial estate, with no views, just a scrubby patch of garden littered with cigarette butts.

‘It reminded me of a gas chamber. I felt like I was taking Rona to her execution’, said David.

Karen and David, who live in Anglesey, believe the Pratchett documentary failed to address the distressing reality of assisted suicide - especially for those left behind.

Rona’s determination to end her life split their family in two. Karen says her brother David, who took over their father’s building business when he retired, found it impossible to come to terms with his mother’s diagnosis and decision to end her life.

He was not present in Zurich, and he and Karen no longer speak. Her two children, aged 21 and 17, are now estranged from his children.

The death also had a profound effect on her father:

‘Watching Mum die seemed to totally disconnect Dad’s mind,’ she says. ‘He was very confused and wouldn’t settle when we returned to the hotel. He didn’t even recognise David any more.

‘I couldn’t cry for Mum because I had Dad to look after. In the early hours, we had to call out a doctor.’

By the time they returned to Britain, Jim didn’t even recognise his own home, where he’d lived with Rona for 21 years. He died from cancer six months later.

‘Compared with Mum, Dad had the better death, without a doubt,’ says Karen.

‘Although his body was riddled with cancer, he died peacefully at home with us.’

Like many of those who have helped family members kill themselves, she felt she had not other choice but to go along with it.

‘For us, it was horrific, but Mum was a very proud, meticulous woman, and she couldn’t face what this disease would take from her.

‘I cherished my mum. I would have cared for her to the end of her days, if that was what she wanted. I didn’t want to lose her, but we loved her and we could not deny her wishes.’

We often speak of the pressure that changing the law might put on vulnerable people to end their lives for fear of being an emotional or financial burden on others.

But we need to remember that the current law is also there to protect what Bishop Michael Nazir-Ali has called the ‘vulnerable assister’; the loved one who is placed under pressure to go along with the suicide, either out of misguided compassion, or because they fear incurring the disapproval of the one who is so desperate to end it all.

The current law allows relatives to say, ‘Even if I wanted to help you mum I can’t. It is against the law. We’ll have to find some other solution than suicide.’

Monday 20 June 2011

My letter to Jeremy Hunt about BBC media portrayal of suicide

Last week I wrote on behalf of Care Not Killing to Jeremy Hunt (pictured), the Secretary of State for Cuture, Olympics, Media and Sport. I asked him to carry out an investigation into the way assisted suicide is covered by the BBC and its link to English suicide rates. I also wrote along similar lines to the Secretary of State for Health.

Whilst the BBC has issued a statement denying bias in its media coverage of assisted suicide (as expected!) it has not yet addressed the matter of suicide contagion. That in itself is very interesting given that the issue has huge media coverage all over the world in the last week. Here is my letter to Mr Hunt:

The Secretary of State for Culture, Olympics, Media and Sport

Dear Sir,

Re Link between BBC coverage of assisted suicide and English suicide rates

I am writing to ask you, as Secretary of State for Culture, Olympics, Media and Sport, to carry out an urgent investigation into the way assisted suicide is covered by the BBC and its link to English suicide rates.

The television programme, ‘Choosing to Die’, featuring celebrity author Terry Pratchett and scheduled to be shown BBC2 at 2100 on Monday 13 June, features the death on screen of a British man, Peter Smedley, at the Dignitas facility in Zurich. The programme has already had a huge amount of advance media publicity.

On the basis of its reported contents, it breaches international and national guidelines on suicide portrayal. As such it poses a significant risk to vulnerable people and, on the basis of available evidence, it is highly likely that copycat suicides will follow the screening.

The BBC editorial guidelines note that ‘factual reporting and fictional portrayal of suicide, attempted suicide and self-harm have the potential to make such actions appear possible, and even appropriate, to the vulnerable’.

The WHO international guidelines on suicide portrayal refer to over 50 published studies, systematic reviews of which have consistently drawn the same conclusion, that media reporting of suicide can lead to imitative suicidal behaviours. This phenomenon is variably termed suicide contagion, copycat suicide, suicide cluster or the Werther effect.

The WHO recommendations to media professionals include the following:

•Avoid language which sensationalizes or normalizes suicide, or presents it as a solution to problems
•Avoid prominent placement and undue repetition of stories about suicide
•Avoid explicit description of the method used in a completed or attempted suicide
•Avoid providing detailed information about the site of a completed or attempted suicide
•Exercise caution in using photographs or video footage
•Take particular care in reporting celebrity suicides

Since 2008 the BBC has screened no less than five docudramas and documentaries portraying assisted suicide in a positive light and none giving the opposite perspective. The above recommendations have been repeatedly and consistently breached.

Over this same period, and previously, the BBC has granted an international platform to many personal accounts about assisted suicide. Cases are often highlighted in painstaking detail featuring long personal interviews and often with substantial extraneous information about the individual’s personal life.

Contrary views are either not expressed, or are at best relegated to single sentence reactionary sound-bites. This creates the false impression that the small minority these cases constitute are somehow representative of all people facing suffering or death.

The programme which the BBC intends to screen on Monday constitutes a major risk to vulnerable people and may also be in breach of the Suicide Act 1961 which was amended in 2010 by the Coroners and Justice Act, making it illegal to ‘encourage or assist’ the suicide of another person. This new wording was adopted specifically to counter the encouragement of suicide by media or internet amidst concerns following the Bridgend cluster of suicides in 2007.

Figures from the Office for National Statistics show that suicides in England rose from 3,993 in 2007 to 4,390 in 2009 – an overall increase of 10% and the greatest two year rise in over a decade. Amongst males aged 45-74, the age group of Terry Pratchett and suicide victim Peter Smedley, the rise has been 16% from 1,174 to 1370. The latter figure is the highest in over 20 years.

It is noteworthy that the national suicide prevention strategy for England, launched in 2002, is failing dismally to reach its targets. In addition no annual reports seem to be available since 2008.

I attach further reference information and look forward to hearing from you at your earliest convenience.

Yours sincerely

Peter Saunders
Campaign Director
Care Not Killing Alliance

Saturday 18 June 2011

General Medical Council confirms the appropriateness of sensitive faith discussions with patients

Last Thursday I took part in a discussion on the Radio 4 PM programme about whether or not faith discussions were ever appropriate in the context of a doctor-patient consultation.

The journalist introducing the programme made reference to the case of Richard Scott, the subject of a complaint to the GMC for discussing his faith with a patient.

Also mentioned was CMF’s own Saline Solution course which is aimed at helping doctors integrate faith and practice.

The key question was framed as follows: ‘Do General Medical Council guidelines leave room for a course which teaches doctors to initiate discussions with patients based on the belief that having a faith is good for you?’

Niall Dickson, Chief Executive of the General Medical Council, explained that the GMC’s role was not to vet courses but to guide doctors. ‘The first point is that the start of a consultation is not the point at which you start introducing your faith and you should be where the patient is at. But there may be circumstances where a patient is at a point where they do want to discuss faith and it may be appropriate for the doctor to reflect on their own faith during that discussion.’

When asked how the GMC determined whether or not a doctor had expressed ‘religious, political or other beliefs or views’ in an ‘inappropriate or insensitive’ way Dickson explained that the GMC guidance was there to enable doctors to make good judgements themselves:

‘I am not there to judge, the doctor is there to judge and this essence of medicine is making judgements in the face of uncertainty and the importance of the doctor understanding where the patient is at. Taking a vulnerable patient and imposing your religious views on them and exploiting their vulnerability would be on the wrong side of the line as far as we are concerned.’

When asked how frequently this occurred in practice he said that it was very uncommon: ‘It has happened on a couple of occasions. It is not a common thing. The vast majority of doctors with faith or without faith know how to talk to patients and know where the patient is at and even if you haven’t got faith you should, if a patient wants to talk about faith, be able to respond positively as well.’

I was asked about the content of the course and was able to talk about the large amount of evidence there is for the positive effects of faith on physical and mental health: ‘What we do at these courses is to teach people firstly about the very strong link that there is between faith and health. There is actually a huge evidence base. We are talking about in the vicinity of 1,200 research studies and 400 reviews in peer-reviewed medical journals. 81% show a positive correlation between faith and health; 4% a negative correlation and 15% sit on the fence.’

I emphasised, as the GMC guidance states, that faith discussions ‘should not normally be part of the consultation, and would not normally be. But there are occasions when it would be appropriate to move into these sorts of areas. The World Health Organisation’s definition of health is that health is not just to do with the physical things but also to do with mental, social and spiritual things as well. Human beings are not just biological machines. We have social, psychological and spiritual needs as well and there are times when it is appropriate to address those if they are having a bearing on a person’s health.’

When asked if I thought there was a danger of doctors taking advantage of patients I emphasised that, ‘Doctors must never impose their beliefs on patients nor exploit their vulnerability. But if they feel it is appropriate (and the key words we use are sensitivity, permission and respect) and a deeper exploration is being invited or would be helpful in a patient-centred consultation then it wouldn’t be inappropriate to do that. In fact many patients will actually welcome that sort of discussion. We know that many medical conditions do have social, psychological and spiritual elements to them and if you are not addressing those then you are not really practising whole person medicine.’

I was asked finally if we had developed our course because ‘Christian doctors felt put upon’. I said ‘no’ and explained that we had developed it ‘because we think Christian doctors really want to practise medicine that addresses the needs of the whole person’.

I closed by adding that I welcomed very much the GMC guidance stating that ‘all doctors have personal beliefs which affect their day to day practice’ and that it applied not just to doctors with a faith ‘but to all doctors equally. No doctor should impose his or her beliefs whether they are political, religious, moral or otherwise.’

Wednesday 15 June 2011

New BBC Radio Four Programme - Are we in for more bludgeoning of disabled people?

I've just been alerted to the fact that BBC Radio 4 is running another forty-minute 'documentary' on an end-of-life theme next Tuesday 21 June at 2000.

'A Living Death', is 'a review into the care of patients in vegetative or low awareness states', which has been launched by the Royal College of Physicians.

The programme is billed as follows (emphasis mine):

'There are thought to be as many as 5000 such people in the UK. The working party will look at concerns that assessment and diagnosis of patients is not consistent across the country and will ask whether the cost of long term care is affordable to the NHS. Ann Alexander examines calls for a reform of the process to end the life of such patients where their families believe their loved one would no longer wish to be alive. The programme reveals how some hospitals appear unaware of the law and hears how the process can be lengthy and costly, putting families under further strain.'

Yes, all the usual specious euphemisms are there in abundance.

It looks we might be in for another barrage from the BBC telling us how 'worthless' the lives of people with severe stroke, dementia, head injury or brain damage are and how 'they would all wish to die anyway', how much it costs to 'keep them alive' and what a mercy it would be if they could be 'allowed (or helped) to die' so as not to put a 'strain on their families' or 'divert precious NHS resources'; how we would be doing them all a service because they are 'better off dead'. More Minette Marin nonsense in other words.

Let's wait and see.

A society is ultimately judged on how it treats its weakest members, and there is no such thing as a worthless life. Those who are severely brain-damaged need our love, care and support more than anybody.

The amount we spend on them is miniscule compared to that we spend on smoking, alcohol, pornography and the consumer items that we cannot afford that have got us, as a nation, into such a financial mess.

World Elder Abuse Awareness Day (15 June) – A reminder to treasure, honour and protect the older members of our community

You are unlikely to read about it in the British press, but today, 15 June, is World Elder Abuse Awareness Day.

While most people today are aware of child abuse, it was not always so. Indeed, the concept was only developed in the 1960s. But that development has proven enormously important, as it has allowed us to focus our resources and energy on combating the problem.

Fifty years after child abuse first entered the public consciousness, another phenomenon is just coming to the attention of the public: elder abuse. Research suggests it is widespread and traumatic.

A recent report by the Care and Social Services Inspectorate for Wales shows a 9% rise in the number of adult protection referrals in 2009-10. Around 5,000 cases of abuse are being investigated in Wales every year, the majority of those cases involving older people.

On a regular basis we see media coverage about older people being mistreated. Elder abuse takes place in many different settings – for example, the older person’s home, care homes, nursing homes and hospitals. It happens when an older person’s human rights and dignity are violated. It can come through financial scams, physical attacks, sexual abuse, psychological abuse or neglect. The perpetrators are often in a position of trust and have control of the life of the older person.

Elder abuse can also include actions that many people might not consider. For example, physical abuse can include inappropriate use of medication or force feeding, emotional abuse can include treating an older adult like a baby or otherwise injuring his or her dignity, and sexual abuse includes any sexual contact with a person who is incapable of consenting.

Furthermore, older adults are particularly vulnerable to less common forms of abuse, such as neglect and abandonment, violations of rights to privacy, community support and information, and financial abuse, which is the most prevalent form of abuse among older adults.

Financial abuse is ‘the illegal or improper use of an incapacitated or vulnerable adult or his resources for another’s profit or advantage.’

This type of exploitation can take many forms such as forgery, misappropriation of cash or assets, abuse of joint accounts, or abuse of power of attorney. Signs of financial exploitation may include disparity between income and assets, unexplained or sudden inability to pay bills, inaccurate or no knowledge of finances, fear or anxiety when discussing finances, or unprecedented transfer of assets to others.

Financial exploitation of a vulnerable adult can occur:

1. Without the elder’s knowledge
2. By trickery, intimidation, or coercion, or
3. When the elder is too confused to give informed consent

A slight majority of financial exploitation victims are elderly females over age 70 who live alone. They may also suffer from one or more physical or mental impairments. Perpetrators are most often relatives of the victim, typically the adult children.

Nationwide financial exploitation is the third most frequent form of abuse after neglect and emotional abuse. Estimates are that 30-40% of elder abuse involves some form of financial exploitation.

It is often argued that legalising euthanasia or assisted suicide would be a recipe for elder abuse. Given the vulnerability of many older people, who already feel themselves to be a financial, emotional or care burden on others, this is a powerful reason for not changing the law.

There are too many people already who have an interest, financial or otherwise, in an older person’s death. Let’s not give them any encouragement. And let’s work to honour, protect and uphold the older members of our community.

The Bible insists that we respect and honour old people (Leviticus 19:32; Proverbs 20:29) carry their burdens; listen to their advice (Proverbs 23:22-23; Job 32:6-9) and serve them as we would serve the Lord himself.

I’ll leave the last words to Mark Cheesman, in a Triple Helix article on the subject:

The Scriptures do not hold older people up as infallible, and are honest about the besetting sins and faults of old age. But they also see them as given to the younger people for their profit, just as the younger ones are given to the older folks.

It is a stark fact that many non-Christian communities esteem their elderly people far more than does the Western church. We should main-stream the older people in our churches: honour and make space for their input, and seek their prayers and wisdom. We should make many fewer mistakes if we did! And old people would feel much better about themselves, and be spurred on to greater things rather than just feeling a waste of space.

Further reading

The International Network for the Prevention of Elder Abuse

Financial exploitation of the elderly

Vancouver Sun article

Action on Elder Abuse

Elder Abuse – Chipping the Old Block (Triple Helix)

Tuesday 14 June 2011

Care Not Killing warns of dangers of 'copycat suicide' following screening of BBC programme

Care Not Killing, an alliance of over 40 organisations, has today called on the Secretary of State for Health and the Secretary of State for Culture, Olympics, Media and Sport, to carry out an urgent investigation into the way assisted suicide is covered by the BBC and its link to English suicide rates.

The press release reads as follows:

A programme featuring celebrity author Terry Pratchett was shown on BBC2 on Monday night following a huge amount of advance media publicity. It breaches international guidelines on suicide portrayal and, as such, poses a significant risk to vulnerable people. There is a real risk that copycat suicides will follow the screening.

The WHO international guidelines on suicide portrayal refer to over 50 published studies, systematic reviews of which have consistently drawn the same conclusion, that media reporting of suicide can lead to imitative suicidal behaviours. This phenomenon is variably termed suicide contagion, copycat suicide, suicide cluster or the Werther effect.

Its recommendations to media professionals include the following:

· Avoid language which sensationalizes or normalizes suicide, or presents it as a solution to problems
· Avoid prominent placement and undue repetition of stories about suicide
· Avoid explicit description of the method used in a completed or attempted suicide
· Avoid providing detailed information about the site of a completed or attempted suicide
· Exercise caution in using photographs or video footage
· Take particular care in reporting celebrity suicides'

Since 2008 the BBC has screened no less than five docudramas and documentaries portraying assisted suicide in a positive light and none giving the opposite perspective. The above recommendations have been repeatedly and consistently breached.

The programme which the BBC intends to screen on Monday constitutes a major risk to vulnerable people and may also be in breach of the Suicide Act 1961 which was amended in 2010 by the Coroners and Justice Act, making it illegal to 'encourage or assist' the suicide of another person. This new wording was adopted specifically to counter the encouragement of suicide by media or internet amidst concerns following the Bridgend cluster of suicides in 2007.

Figures from the Office for National Statistics show that suicides in England rose from 3,993 in 2007 to 4,390 in 2009 – an overall increase of 10% and the greatest two year rise in over a decade. Amongst males aged 45-74, the age group of Terry Pratchett and Peter Smedley, the rise has been 16% from 1,174 to 1370. The latter figure is the highest in over 20 years.

It is noteworthy that the national suicide prevention strategy for England, launched in 2002, is failing dismally to reach its targets and, perhaps tellingly, no annual reports are available since 2008.

We are therefore calling on the Secretary of State for Health and the Secretary of State for Culture, Olympics, Media and Sport to carry out an urgent investigation into the way assisted suicide is covered by the BBC and its link to English suicide rates.

Monday 13 June 2011

Twenty facts we did not learn from Terry Pratchett’s BBC ‘documentary’ on assisted suicide in Europe

The Sunday Times, in line with its new editorial policy, ran a typically effusive article last weekend about last night’s ‘documentary’ in which we saw a British man, Peter Smedley, kill himself on screen by drinking poison at the Dignitas suicide facility near Zurich.

Earlier this year I suggested that the BBC was acting in the role of cheerleader for assisted suicide through its partisan coverage of this issue; and I blogged earlier about how this particular programme was further evidence of BBC bias and would fuel more suicides by way of the Werther effect.

But I was also interested to see Mr Pratchett’s (brief) description in the Sunday Times about how the documentary came to be made in the first place.

‘Late last year the BBC, which had earlier transmitted my Dimbleby lecture on assisted dying, asked me to "learn something about assisted dying practices elsewhere in Europe" and also to speak to Britons who had signed up with Dignitas… Of course I said yes.’

Here are twenty things the programme did not tell us about assisted suicide and euthanasia in Europe:

1. Assisted suicide and euthanasia are illegal in every country in Europe with the exception of Belgium, Luxembourg, Switzerland and the Netherlands – just four of the fifty sovereign states.

2. Margo Macdonald’s End of Life Assistance (Scotland) Bill, which would have legalised both euthanasia and assisted suicide in Scotland, suffered an overwhelming defeat by a 85-16 margin last November because MSPs were convinced that its ‘safeguards’ were not safe.

3. On 20 January 2011 the European Court of Human Rights (ECHR) ruled that while there is a ‘human right’ to suicide, the state has no obligation to provide citizens with the means to commit suicide.

4. On 25 January 2011 the French Senate rejected proposals to legalise assisted suicide and euthanasia, by 170 votes to 142. Francois Fillon, the French prime minister, had spoken out strongly against the proposals.

5. The German Medical Congress, representing German Physicians, decided on 1 June to oppose assisted suicide and euthanasia, leading to a change in doctors’ guidance which will prohibit doctors from participating in both assisted suicide and euthanasia.

6. Using organs from euthanasia victims is now an established procedure in Belgium.

7. At least 300 cremation urns containing human remains have been dumped in Lake Zurich near the controversial Swiss suicide facility Dignitas.

8. A recent study found that in the Flemish part of Belgium, 66 of 208 cases of ‘euthanasia’ (32%) occurred in the absence of request or consent.

9. In Belgium, nearly half of all cases of euthanasia are not reported to the Federal Control and Evaluation Committee. Legal requirements were more frequently not met in unreported cases than in reported cases and a written request for euthanasia was absent in 88%.

10. Dozens of disabled children have been killed under the Groningen protocol in the Netherlands despite the fact that this is illegal.

11. In 2006 the Royal Dutch Medical Association declared that ‘being over the age of 70 and tired of living’ should be an acceptable reason for requesting euthanasia.

12. Many who have died at the Dignitas facility are not terminally ill. Ludwig Minelli, the Director, has helped people who are chronically ill, disabled, depressed or frail elderly to kill themselves and has suggested the relations of the terminally ill could also take a lethal drug cocktail even if they are in perfect health.

13. The Dignitas facility had to move from the residential apartment block it was located in after residents complained about encountering body bags in the lifts.

14. Jacques Attali, former President of the European Bank for reconstruction and development, has said, ‘As soon as he goes beyond 60-65 years of age man lives beyond his capacity to produce, and he costs society a lot of money...euthanasia will be one of the essential instruments of our future societies.'

15. Almost half of Belgium’s euthanasia nurses have admitted to killing without consent, despite the fact that involuntary euthanasia is illegal in Belgium and that nurses are not allowed to perform even voluntary euthanasia.

16. In 2007 approximately 10% of all deaths in the Netherlands were connected to the practice of terminal sedation. Many of those deaths were caused by dehydration, by the physician sedating the patient and then withholding hydration until death occurs, which usually takes 10 - 14 days.

17. Soraya Wernli, a nurse employed by Dignitas between 2003 and 2005, has accused the organisation of being a ‘production line of death concerned only with profits’.

18. According to a 2005 House of Lords Select Committee Report a Dutch-type euthanasia law in Britain would result in 13,000 deaths per year.

19. Grand Duke Henri, the monarch of Luxembourg, opposed the euthanasia law and as a result was stripped of his executive power to veto laws.

20. The Nazi holocaust began in 1939 with the killing of 6,000 disabled children and 70,000 patients in geriatric and psychiatric institutions. Leo Alexander, a psychiatrist who gave evidence at Nuremberg in 1949 said that ‘its beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the attitude, basic in the euthanasia movement that there is such a thing as a life not worthy to be lived. This attitude in its early stages concerned itself merely with the severely and chronically sick. Gradually the sphere of those to be included in this category was enlarged to encompass the socially unproductive, the ideologically unwanted, the racially unwanted and finally all non-Germans.’

Sunday 12 June 2011

Papageno and Werther effects – public policy lessons for the prevention of suicide

I recently blogged about the new German film ‘Goethe’, a study of the early life of the celebrated German poet of the same name.

It retells the quasi-autobiographical love story ‘The Sorrows of Young Werther’ which made Goethe famous. Werther commits suicide after his lover marries another man. The book, when initially published in 1774, provoked a spate of suicides amongst young people, and thereby gave rise to the medical term ‘Werther Effect’ meaning ‘copycat suicide’ or ‘suicide contagion’.

The ‘Werther Effect’ is the subject of the WHO international guidelines on the portrayal of suicide in the media, ‘Preventing Suicide: A Resource for Media Professionals’.

The guidance sets out the type of media coverage of suicide that is likely to elicit copycat behaviour, most of which has been breached by BBC coverage of assisted suicide.

I was therefore most interested to find a recent paper by Austrian authors in the British Medical Journal and a much longer one by the same group in the British Journal of Psychiatry published only late last year reviewing media coverage of suicide.

The authors note in the first (BMJ) paper, ‘Papageno vs Werther Effect’, that some media coverage of suicide actually leads to a decrease rather than an increase in suicide rates.

‘Newspaper items accounting for (a decrease) form a distinct non-sensationalist class of suicide reporting. They follow the recommendations of the World Health Organization in reporting suicide—for example, avoiding terms such as suicide epidemic. Our findings suggest that media reports on individual mastery of suicidal crises are highly relevant in preventing suicide.’

In other words, media stories about how people coped positively with suicidal feelings actually lead to a decrease in levels of suicide in the general population.

They name this protective effect ‘the Papageno effect’ in honour of the character in Mozart’s opera the Magic Flute.

‘When Papageno fears that he has lost his love, Papagena, he prepares to kill himself. But three boys save him at the last minute by reminding him of other alternatives to dying.’

The second (BJPsych) paper had the aim ‘to test the hypotheses that certain media content is associated with an increase in suicide, suggesting a so-called Werther effect, and that other content is associated with a decrease in suicide, conceptualised as a Papageno effect.’

It concludes that ‘The impact of suicide reporting may not be restricted to harmful effects; rather, coverage of positive coping in adverse circumstances, as covered in media items about suicidal ideation, may have protective effects.’

They concede that ‘More research is needed to understand the Papageno effect’ but argue that ‘from a public health perspective, even small protective effects could have a noticeable positive impact on internationally ongoing collaborations between health and media professionals’.

So we have a tale of two fictional lost loves. Werther killed himself but Papageno was helped to find new meaning in life. Werther effect bad. Papageno effect good.

Now all we need to do is to persuade the media in Britain, and especially the BBC, to apply these findings.

Using organs from euthanasia victims now an established procedure in Brave New Belgium

Recently I blogged about Jack Kevorkian, the American pathologist known by many as ‘Dr Death’ for his role in helping people commit suicide. He died on Friday 3 June in Detroit, USA.

Kevorkian killed 130 people through assisted suicide and was eventually jailed for giving a patient a lethal injection on television.

Despite claims that his murders were motivated by compassion, he once described the alleviation of his victims’ suffering as ‘a first step, an early distasteful professional obligation’ to get a license for human experimentation.

He was open about his desire to obtain organs for transplantation and experimentation. He even took the kidneys of one victim to a 1998 press conference where he offered them ‘first come, first served’.

You might have thought using the organs of victims of euthanasia was something in the realms of science fiction. It seems not.

I have just been alerted by Michael Cook of BioEdge to an article just published in the journal Applied Cardiopulmonary Pathophysiology, which demonstrates that using organs from euthanised patients seems to have become a well established procedure in Belgium, only nine years after it was legalized in 2002.

Michael reviews the article as follows:

A press release from a team at a hospital in Leuven announced yesterday that it had successfully transplanted lungs from four euthanised patients between 2007 and 2009.

The authors observe that the quality of the lungs from euthanised patients seems superior to those obtained from brain dead donors and donations after cardiac death. ‘In contrast to these donors, euthanasia donors do not experience an agonal phase before circulatory arrest as seen in donors dying from hypoxemia or from cardiogenic or hypovolemic shock.’

Apparently a number of patients who request euthanasia want to donate their organs. However, since many of them have cancer, the organs are not suitable. Three of the euthanased patients who did donate suffered from ‘a debilitating benign disease such as a neurological or muscular disorder’. The other was not ill at all, but had an ‘unbearable mental disorder’.

The authors were at pains to stress that they acted strictly within the guidelines for euthanasia in Belgium. All of the patients gave their consent.

Organ donation after euthanasia in Belgium is well organized. Eurotransplant, a coordination group for transplants in Austria, Belgium, Croatia, Germany, Luxembourg, the Netherlands and Slovenia, has already developed elaborate protocols for ‘organ donation and transplantation after euthanasia’.

On looking at the paper myself (linked above) it seems that 2.8% of all cardiac death donors were euthanized including 23.5% of all lung donors.

I was amazed at how nonchalantly the issue was dealt with as if killing patients and then harvesting their organs was the most natural thing in the world.

Given that half of all euthanasia cases in Belgium are involuntary it must be only a matter of time before the organs are taken from patients who are euthanized without their consent.

The matter of fact way the retrieval process is described in the paper is particularly chilling and shows the degree of collaboration that is necessary between the euthanasia team and the transplant surgeons:

‘Donors were admitted to the hospital a few hours before the planned euthanasia procedure. A central venous line was placed in a room adjacent to the operating room. Donors were heparinized immediately before a cocktail of drugs was given by the treating physician who agreed to perform the euthanasia. The patient was announced dead on cardiorespiratory criteria by 3 independent physicians as required by Belgian legislation for every organ donor. The deceased was then rapidly transferred, installed on the operating table, and intubated.’

In other words prep them for theatre next to the operating room, then kill them and wheel them in for organ retrieval. All in a day’s work in Brave New Belgium.

Wesley Smith's comments on this are very thought-provoking:

'Imagine being a devalued person with a serious disability and come to believe your life isn’t worth anything, and in fact, worry that you are a burden, to realize that you could reverse the situation by being euthanized and harvested? This is a emotional inducement to be killed, and as such, is extremely dangerous to the well-being of people with serious disabilities.

And it won’t stop there. Just as I was right in my 1993 prediction, trust me on this: Coming next–paying people with serious disabilities to be killed and harvested, like Jack Kevorkian once advocated. Utilitarian booster of such a course would argue that it saves society money on the costs of long term care, allow the disabled person the satisfaction of offering a benefit to society out of their personal tragedy, and leave a nice bundle for family, friends, or cause. Win. Win. Win.

Once you accept the premise that there is such a thing as a life not worth living–to the point that killing is an acceptable answer to the problem–there aren’t many arguments left against such a regime. People with disabilities should be very alarmed.'

I am told that if you take a frog and put it hot water it will jump out. If you put it in cold water and gradually bring it to the boil it will make no attempt to escape before being boiled alive – it simply will not recognize the gradual change in temperature. Human beings are not unlike frogs in this regard - if the moral climate changes gradually they don't notice it.

Belgium has been subject to a gradual rise in euthanasia temperature which means that doctors there now do things that those in most doctors in other countries would find absolutely horrific. Take warning! The price of freedom is eternal vigilance.

Saturday 11 June 2011

Third International Symposium on Euthanasia and Assisted Suicide - a fantastic success

Last weekend I had the privilege of attending the the Third International Symposium on Euthanasia and Assisted Suicide in Vancouver, Canada. The event was organised by the Euthanasia Prevention Coalition of Canada and its Executive Director Alex Schadenberg (pictured) has filed this report which is available on both his own blog and Life Site news. I reproduce it here:

'The Third International Symposium on Euthanasia and Assisted Suicide in Vancouver (June 3 - 4) was a tremendous success. The goals that were set-out before the Symposium were surpassed. The DVD’s of the Symposium will be available in early July for $50 for the complete set. The Third International Symposium was organized by the Euthanasia Prevention Coalition (EPC).

The International leaders had a meeting on Thursday, June 2, that was chaired by Alex Schadenberg. The meeting examined issues related to the language of the debate and common directions for the group. There was general agreement concerning the language of the debate and the group agreed to appoint Hugh Scher, the legal counsel for EPC, to work on branding and common ideas.

We discussed our need to strengthen the international leadership of the group. The group agreed that Alex Schadenberg would continue to be the Chair of the Euthanasia Prevention Coalition - International. Paul Russell - HOPE Australia, Peter Saunders - Care NOT Killing Alliance UK, Margaret Dore - Seattle Attorney, Nancy Elliott - New Hampshire and Mark Pickup - Human Life Matters agreed to complete the new international leaders team. Paul Russell was appointed as Vice-Chair.

The Friday sessions were mainly devoted to establishing what has occurred over the past few years. These sessions of the Symposium celebrated our many successes.

Rita Marker, the leader of the Patients Rights Council, spoke about the history of the euthanasia movement in America. She also urged the participants to focus on the language of the debate.

Henk Reitsma, from the Netherlands, uncovered the changes that have occurred in the Netherlands over the past 10 years, since euthanasia was officially legalized. He showed us how dutch citizens have the lowest death rates in Europe during the medium years of their lives but they have the highest death rates at birth and they are now dying at a younger age. He also uncovered the fact that the rates of euthanasia by sedation and dehydration have risen dramatically. It appears that Dutch physicians prefer to end the lives of their patients in that manner to avoid filling out the paper work.

Paul Russell, the leader of HOPE Australia spoke about the successful defeat of the euthanasia bills in South Australia. He emphasized how effective it has been working with Margaret Dore and EPC. He also explained how the euthanasia lobby is changing and how he is adapting his message.

Peter Saunders, the campaign director for the Care NOT Killing Alliance in the UK, spoke about the many development in Europe and in the UK. He spoke about how the assisted suicide prosecution guidelines in the UK are being abused. He informed us of the current directions in Europe.

Gordon Macdonald, the leader of the Care NOT Killing Alliance in Scotland spoke about the successful defeat of the Margo Macdonald euthanasia bill. He explained to us what worked and he emphasized how the next challenge by the euthanasia lobby will be more difficult.

Nancy Elliot, a former three term representative from New Hampshire, who worked to defeat the assisted suicide bill in her state, emphasized how maintaining a focused message enabled her to successfully convince the legislature to oppose assisted suicide.

Bradley Williams, the leader of Montanans against Assisted Suicide explained that assisted suicide is not legal in Montana and how his grass roots approach is building a strong opposition to assisted suicide in his state.

Linda Couture, the director of Vivre dans la Dignité in Quebec explained how they have built a strong opposition to euthanasia and assisted suicide in Quebec. They continue to challenge the Quebec government - Dying with Dignity committee to not allow euthanasia through the backdoor.

Harry van Bommel spoke about the founding principles of the hospice movement and urged us to maintain the founding principles. He emphasized the importance of caring for your friends and family and how the experience of caring for others is positive both personally and for society.

Dr. Margaret Cottle, the VP of EPC Canada spoke about the long and caring heritage of medicine. She spoke about how doctors can be healers or killers. She then coined the term “cultural green” and explained the reasons why there is a long history of doctors refusing to kill their patients. She said that the ethical heritage is like an old growth forest that took a long time to grow but is easy to cut down.

Alex Schadenberg spoke about a series of studies that have been published in the literature over the past few years. He proved that people who live with depression are dying by euthanasia in the Netherlands and assisted suicide in Oregon. He proved that more than 30% of all euthanasia deaths in Belgium are done without request or consent and nearly 50% of all euthanasia deaths in Belgium are not reported. He explained the history of the Groningen Protocol, the protocol that allows for the euthanasia of infants with disabilities in the Netherlands and how the language of the Protocol is eugenic.

The Friday dinner featured Senator Helen Polley from Australia who spoke about the long history of the euthanasia lobby in Australia continuously pushing on a territory, state and federal level for the legalization of euthanasia. Senator Polley was truly inspiring.

Saturday morning began with a presentation from Msgr Barreiro from HLI who spoke about the nature of the human person.

Joe Comartin, the NDP co-chair of the Parliamentary Committee on Palliative and Compassionate Care shared with the group some of the findings of the parliamentary committee. He emphasized that Canada needs to implement many changes in the care it provides to people in vulnerable conditions and that if the government can commit to a program of change, that the demand for euthanasia would drop substantially if not nearly completely. He stated that we have a lot of work to do but he has hope.

Krista Flint from Inclusive Humanity and Rhonda Wiebe with the Council of Canadians with Disabilities spoke about how to re-frame the debate around the issues of euthanasia. They emphasized the importance of the lived experience and how images, stories and messages can imprint on a culture. They showed us how similar messages presented in a different way can produce a very different response.

Margaret Dore spoke about the importance of language and how to frame your message in a way that the mainstream society will agree. She used examples of the recent campaigns in Montana, New Hampshire and Washington State to give examples of the messages that worked and the messages that didn’t work. She emphasized that we need to maintain message discipline.

Nick Goiran, a Liberal member of the Western Australian state legislature, spoke about the successful defeat of the euthanasia bill in Western Australia. Nick emphasized the importance of one on one meetings and explained how he effectively compared the issue to the capital punishment debate in Australia.

Hugh Scher spoke about the current court challenges in Canada. He spoke about EPC’s involvement in the Hawryluck vs Scardoni and Rasouli court cases. He emphasized the importance of these precedent setting cases and how they are affecting medical decision making in Canada. Hugh also spoke about the recent court challenges by the Farewell Foundation in BC and the BC Civil Liberties Association. The current court challenges are designed to strike down Canada’s laws prohibiting euthanasia and assisted suicide.

Mark and Laree Pickup spoke about their life experience with disability. Mark was diagnosed with MS nearly 30 years ago and experienced a roller coaster ride from being an active and athletic man to requiring assistance and support for many of his daily tasks. Mark stated that if euthanasia had been legal in those early years that he would have taken the lethal dose in his time of despair. Laree admitted that during the difficult times that she considered divorcing Mark to start a new life without a husband with disabilities. Mark stated that he is thankful that euthanasia was not available to take his life in his time of despair. Now that he has accepted his disabilities he has found great dignity and happiness in his life.

Mark called on the participants to be part of an interdependent community and not buy into the ideology of the euthanasia lobby that values life only in what you do, rather than what you are.

The Third International Symposium concluded with an announcement by Peter Saunders and Gordon Macdonald that the Euthanasia Prevention International will co-host a European Symposium in Scotland, possibly in June 2012 and an announcement by Paul Russell that the Euthanasia Prevention Coalition International will co-host a Australasian Symposium in Australia, possibly in September 2012.

The Third International Symposium was a tremendous success because it brought together most of the world leaders who updated and challenged the participants of the Symposium. It also created an effective, unified and active group of leaders who will continue to build successful campaign to defeat bills to legalize euthanasia and turn the tide on the cultural paradigm of euthanasia and assisted suicide.'