The Dog that Refused to Bark - The Lord Falconer Commission

I came across this post by Peter Saunders in my hunt for information about who the members of the Lord Falconer Commission on Assisted Dying were. It's a list of those who were asked to give evidence to the commission and refused. Amongst them are the BMA, the BMA Ethics Committee, Alzheimers UK, most of the royal colleges, Carers UK, MacMillan Cancer Support, the Motor Neurone Disease Association, the Association of British Neurologists, the Huntingdon Disease Association, the Multiple Sclerosis Association and many others. Why did they refuse? Maybe because they knew that the deck was stacked..

Good Men May Be Mistaken - More Thoughts on the End of Life Assistance Bill

In my previous post, I wondered who or what it is, that is creating the relentless push for euthanasia; if this is something that is directed or if it is a general zeitgeist that is prevalent at the moment. It isn't the first time that something like this has happened and in the early 1900's a similar discussion was taking place amongst the chattering classes and had enthusiastic support from left and right. Many people whom we now term as great were involved in it. I'm talking of eugenics and the campaign to introduce compulsory sterilisation for 'defectives' in the 1912 Mental Deficiency Bill.

The starting point for this debate was in the 1840's with Francis Galton, a cousin of Darwin. He studied the hereditary lines of 'great men' and concluded that unless something drastic was done, the breeding of degenerates was going to outstrip the breeding of more worthy people. From this, the seed of eugenics and sterilisation of the poor and the mentally ill was sown.

By 1905 this idea was reaching its peak. The main opponents to it were GK Chesterton and Josiah Wedgewood (another cousin of Darwin's) who did a filibuster of 150 speeches sustained by barley water and chocolate. (His modern descendent, Tony Benn, is also against euthanasia). But it's the people who were for it that make the interesting reading.Leonard Darwin, George Bernard Shaw, Winston Churchill, Beatrice and Sidney Webb, the Fabian Society, Arthur Balfour and none other than William Beveridge. There are more here. It also gained support from the Archbishops of Canterbury and York and Dean William Inge, Chesterton's bete noire. These people did the rounds of the Fabian Society, used their influence in church and government to promote it and gave professorships at universities to supporters.

Today it seems almost inconceivable that this happened. And to be fair to those who supported it, we have the benefit of hindsight. The horrors of the Nazis Aktion T4 programme had not been realised. But nevertheless the fact remains; for nearly 40 years, this idea was common currency amongst the brightest and best of our society. America, Sweden, France and Germany all enacted sterilisation laws. The UK escaped by the skin of its teeth. Good men may be mistaken. Great men may be mad.

Chesterton devoted an entire book to arguing against this bill. Amongst other things he said was this;

It is necessary to point out the essential fact which the eugenists seem to have forgotten all over again. We breed cows for milk; and not for a moral balance of particular virtues in the cow. We breed pigs for pork. . . . Therefore we cannot, and do not, criticise them in the way in which we criticise our fellow creatures when we call them feeble-minded; or when we betray our own feeble-mindedness by calling them Unfit. For the very word Unfit reveals the weakness of the whole of this pseudo-scientific position. We should say that a cow is fit to provide us with milk; or that a pig is unfit to provide us with pork. But nobody would call a cow fit without naturally adding what she was fit for. Nobody would call up the insanely isolated vision of the Unfit Pig in the abstract. But when we talk about human beings, we are bound to break off the sentence in the middle; we are bound to call them Unfit in the abstract. For we know how varied, how complex, and how controversial are the questions that arise about the functions for which they should be fitted.

In this argument, Chesterton puts his finger on the fallacy behind eugenics and what I believe is the fallacy underlying the assisted dying debate. The assumption underlying the legitimacy of those in favour of such things, is usefulness. A person has worth if they are industrious, make money, stand out, are independent and not a burden; they are useful. By contrast, if they do not have any of these attributes then they are not useful, therefore they have less worth. It is a seductive argument, because we need people to work and produce and pay taxes. And it is particularly appealing to people who work hard, make money and are independent. All their perception of their worth is tied up in being useful. And that is the glamour that is seducing the likes of Terry Pratchett, AC Grayling, Zoe Wanamaker and others to supporting this.They cannot bear the thought of being dependent on others or being limited by illness or disability. But the darker side of that view is how it affects their perception of others. If your worth is measured by these things, how do you then measure people that aren’t useful?

One of the things that has nagged me about this debate is this; the people who are promoting this bill are people of independent means with powerful friends. Whether or not euthanasia gets passed, they will go when they will and not a second before. If they want to take a poison, they have the friends to obtain it for them and to protect assisting relatives in any court battle afterwards. Which means in short that this bill isn’t about them. It’s about ‘helping’ other people. People that they don’t see very much of, that ‘aren’t the same’ as them, who aren’t very useful; at least not as useful as they are to society. And they do not seem to be aware of that value judgement. It underlies the feting of Susan Boyle and Stephen Hawking; they are celebrated, not simply because they are disabled, but because they are disabled people who are also useful. But the girl who lives near me with the same condition as Susan Boyle is not being feted or celebrated. Nor is anyone else with disability.

This post has wandered somewhat, but to get back to the point; what and who is driving this? I think that in part this is a fashion, a way of being avant garde. Sex is no longer taboo; death still is and the breaking of it holds a fascination. It’s also to do with the political climate. We are in a time of austerity and a growing elderly population. And the great unspoken debate going on underneath this is how they are all going to be provided for. These two forces are feeding off one another and creating a maelstrom into which the poor, the old and the disabled are being sucked into. As indeed they always have done. Those who speak of putting down animals in pain should reflect that we also put animals down when they are too old to work, too expensive to keep and when they have too high a medical bill. But what may save us is what saved us the last time; the experience of others. We have not yet enacted this legislation. Others have and we may benefit from their misfortune. In March this year, a petition with 100 000 signatures to allow those over 70 who consider their life 'complete' assistance to die, was presented to the Netherlands parliament. Let's hope for all our sakes that this doesn't succeed.

Thoughts on the End of Life Assistance Bill

So the End of Life Assistance Bill gets rejected by 85 votes to 16. A day later Lord Falconer sets up a commission on the subject of assisted dying. A certain ethicist had a wee trip up to Scotland during the evidence hearing. This, to paraphrase Margo McDonald, ain't going away. So what happened and what's going on?

I confess I have more questions than answers. Although I expected the bill to be defeated, I didn't expect it to be quite so comprehensive. There were several obvious reasons for its defeat. First and foremost, it wasn't going to do what it said on the tin. It was called 'End of Life Assistance' when in fact the bill allowed those who were not at the end of their lives, but who could not live independently (whatever that meant) and found life intolerable, to avail themselves of this. Politicians had been given comparisons with Oregon, when it actually should have been compared with the Netherlands and they don't like being misled. Secondly, Care Not Killing played a big role in leading the opposition. It is a combination of religious and non religious organisations and includes amongst its membership the National Palliative Care Council for Great Britain and Northern Ireland, Inclusion Scotland and RADAR, which is an umbrella disability organisation representing 900 disability groups. So the opposition got their sh*t together. Finally, Margo McDonald herself didn't perform well. She spent most of her opening speech attacking Care not Killing and made this comment;

According to Care Not Killing, elderly people in care will feel that it their duty to die. Some elderly people stuck in below-standard care homes do wish for an early death, but the bill's provisions do not cover them. I hope that we do not hear a litany of sanctimonious remarks about improving care provision. We have had more than enough time to do that.

The vote was a free one and I expected it to go against the bill, as I say. But I didn't expect 85/16 (and it would have been 87 if Karen Whitefield and Elaine Smith, my local MSPs hadn't been snowed in and who had declared their intentions). And it has left me with an intriguing problem. I thought that all the media attention and sympathy for euthanasia was being driven by the political classes. But in this vote, the political class has turned its face against it. I'm not sorry to be wrong on this, but it leaves me asking; who is driving the media on this? Who invited an English ethicist to a Scottish committee? Who ensured that the programme 'A Journey to Switzerland' was shown twice up here during the bill's passage? Who ensured that cases like Stafford and Dr Jane Barton got the minimum of coverage whereas Diane Pretty and others got the maximum? Who is doing this?

It may be that there is a difference between Scotland and England on this. We do have a higher church -going population, but Holyrood is quite capable of ignoring opinion from the churches. It is also quite capable of ignoring opinion from disability groups. There is a huge financial reason to legalise euthanasia; as it said in the explanatory notes to the bill;

Cost of means required to assist in death
97. The costs required to deliver an assisted death will be minimal and will inevitably be less
than those associated with providing ongoing medication and care.

Mike Rumbles did give a hint as to what had happened. He quoted Burke in his speech

As parliamentary representatives, we must resist the temptation to legislate because of opinion polls. In a representative parliamentary democracy such as ours, we are required to use our judgment. As long ago as 1774, the classical liberal Edmund Burke said:
"Your representative owes you, not his industry only, but his judgement; and he betrays ... you, if he sacrifices it to your opinion."

But this ain't enough. So - any thoughts? Is it the media class themselves running this perhaps? Or them, plus some political friends? Or is this perhaps a zeitgeist, a debate that surfaces every generation, when we have forgotten all the reasons why we do not and should not go down this path? That will be my next post..

Twelve Reasons Why Assisted Suicide Should Not Be Legalised

Twelve reasons why assisted suicide should not be legalised;

1.)The number of elderly beds in hospitals has been reduced from 27 000 - 21 000 over a period of five years, a reduction of 25%.

2.) Mid Staffordshire Hospital

3.) From 2004 - 2008, the number of specialist nursing homes for dementia sufferers has been reduced by 389, a drop of 9%.

4.)£289 per head per sufferer is spent on cancer research. £11 per head per sufferer is spent on dementia.

5.) NICE tried to remove all dementia medicines from presciption. After protests, it reinstated them, but only to be prescribed in the later stages of dementia when medicines like Aricept would be useless. Doctors now have to lie about what stage a dementia sufferer is at, so that they qualify for a presciption.

6.) Martin Ryan, a Downe's sufferer, died after being left for 26 days without food or water in hospital. Mencap reported on this and several other cases of neglect of people with learning difficulties in hospitals.

7.) Martin Amis is using the issue to promote his latest book launch.

8.) The worst health secretary in living memory and failed Labour coup leader is supporting it.

9.) Dr Jane Barton injected her elderly patients with doses of diamorphine and killed them. The GMC let her keep her registration.

10.) Margaret Haywood blew the whistle on neglect in an elderly care ward and got struck off the nursing register.

11.) The pro-euthanasia bioethicist Dr. Helga Kuhse said:
"If we can get people to accept the removal of all treatment and care—especially removal of food and fluids—they will see what a painful way this is to die and then, in the patient's best interests, they will accept the lethal injection."

12.) Hippocrates said:
"First do no harm."

Stafford Hospital- The Shock that is no Surprise

The big story in health today is undoubtedly that of Stafford hospital and the maltreatment of the elderly in their care. People wandering the corridors, drinking water out of flower vases because they were so thirsty, patients lying in soiled beds.. The list goes on and on. Now heads are going to roll and already the media is trying to establish ‘who is to blame’. But do you know the shocking thing about this story? The shocking thing is that it’s not shocking, at least not to those of us who work in the care system or are recipients of it. Across Britain today, there will be nurses, doctors, carers and social workers nodding their heads grimly at this, because this problem is present to a greater or lesser extent everywhere in care homes and hospitals. It is endemic. But why is this happening? That is what I am going to talk about in this post.

As those of you who are regularly on this blog know, I care for my mum who has Alzheimers. One day six years ago, I came to the conclusion that every problem that I had with my mum’s care had a political root, and if anything was going to change, I had to get involved in politics and try to change it from there. The particular thing that triggered me was the closure of nursing homes in my area. Why, when we had a growing elderly population, was our council shutting nursing homes? Shouldn’t they have been increasing them? I went along to a carer’s conference to ask that question. There was a good crowd there and there was a mixture of carers and professionals from the NHS and social work. I got hold of the mike and put my question to the chair, ‘Why are we shutting nursing homes when we have a growing elderly population, and where are all the elderly going to go?’
I still remember the deathly chill that followed my question. Up until that point, things had been fairly cheerful and there was a buzz of chat; suddenly the whole place was quiet and the temperature dropped about ten degrees. The answer that I was given was that they did not want to shut nursing homes, but there was a problem with the cost as we had a growing number of elderly people. Afterwards, one of the social workers came up to me.
‘I really want to thank you for asking that question’, she said. ‘ We all wanted to ask that, but we were too scared to.’

The answer that I was given was in no way acceptable, but it is true. The reason that nursing homes are shutting and the reason that Stafford hospital happened, is because there are a growing number of elderly and we do not want to fund the cost of their care. This cost cutting has been going on for a number of years in various forms;

Closure of day hospitals, cottage hospitals and local authority nursing homes;

Re-defining care of long term conditions such as dementia as ‘social care’, thus shifting funding of the person’s care to the much smaller local authority budget;

Spending only £11 per head on dementia research as compared with £289 per head for cancer;

Reducing the numbers of beds in hospitals, so that there is no room for geriatric ‘bed blockers’;

Setting impossible financial targets that can only be achieved by cutting staff and therefore leaving wards understaffed;

Persecuting anyone who dares to complain about standards. Dr Rita Pal’s story is a salutory warning for anyone in the NHS contemplating rebellion.

But it is not just central government that is to blame. The media are very much to blame as well. Why? Because they have under-reported it. And they have done this, I believe, quite consciously. I have been on several media sites tonight looking at the Stafford story and a notable number of sites that usually have a comment facility for stories, have not enabled commenting. On the BBC site, commenting is allowed, but the person has to give a name and an email address. It has not included the story on its ‘Have Your Say’ section, which you would expect for a scandal like this. This means that NHS workers and other professionals who wish to report a similar situation, but remain anonymous, cannot do so.

Which brings me to my final point. Now there’s been a three week gap between this post and the last and there’s been a reason for that. And the reason was that I did not want to say what I am going to say now, but the Stafford hospital situation has given me the impetus to do so. It’s this. If you take away elderly care homes, if you do not fund research into elderly diseases, if you take away their hospital beds, if you take away dementia medicines as NICE has done, and if you leave them in soiled beds, and reduce them to drinking water out of flower vases because you are too busy to give them fluids; if you constantly say, ‘ We can’t afford to look after you’, what is the next logical step in this process?

Get rid of them.

And that is why, Margo, no matter who puts forward the argument (and you are an MSP that I like), no matter how many programmes the BBC puts on in sympathy, no matter how untrendy it is made to oppose euthanasia, that is why I will never, ever, ever, support a change in the law to make euthanasia legal and ‘give people a choice’. The elderly, the disabled and the weakest in our society would be left completely exposed in the face of such a ‘choice’ and completely at the mercy of the grey men with clipboards who are constantly striving for such ‘streamlining’. Money drives policy and this is an area of policy that would shift very quickly from compassion to economics. People rarely venture into territory like this on their own, but as with the Stafford situation, staff can be bullied, overworked, undermined and frightened into an abusive situation and come to regard it as normal and that is why the law should remain as it is.

Finally, to go back to the carer’s conference. A few weeks later I was attending a meeting with some of the people who had been there and we started talking about care of the elderly. One of them said how she had asked the same question as myself in her office and the person in charge said, ‘In a few years, the elderly won’t be a problem.’

You have been warned.

Live and Let Die? Margo McDonald's 'End of Life Choices' Bill

On the 8th Dec last year, Margo McDonald launched her ‘End of Life Choices’ consultation. This was a follow on from Jeremy Purvis’s ‘Dying with Dignity’ bill, which was an assisted suicide bill but was unsuccessful. On 8th March (next Sunday), the consultation period will come to an end and the bill will be circulated in Holyrood for a month to gather support. If it gets the support of eighteen MSPs or more, then it will pass, subject to a vote in Holyrood.

As someone who has been a carer for a dementia sufferer for ten years, and as a health campaigner, I want to contribute to this debate. My next couple of posts will be devoted to the proposed bill itself and the backdrop to it. The implications of this document are wide ranging, and I think it is important that people understand exactly what is likely to happen if this bill becomes law.

The ‘End of Life Choices’ consultation is a fairly free flowing document, informal in structure. It describes in detail the case of Diane Pretty, Daniel James and other high profile assisted suicide cases. Further on into the document, it starts to outline the details of what the bill would consist of.


Definition of ‘assisted dying’

The normal definition of assisted suicide or “assisted dying” as it is called in this bill, is where a physician supplies the medication and the means by which the person will end their life, but the patient has to administer the medication themselves. This is distinguished from euthanasia, where the physician can also administer the medication to the patient. This is a fine, but an important difference between the two, because with assisted dying it is clearer that the patient actually gave consent. Assisted dying has been favoured as a middle ground for this issue; in Oregon, patients can take their medication home and in around half of these cases, the patient has chosen not to go ahead.

However, in this bill, assisted dying has been defined as follows;

‘ A medical practitioner administers a lethal dose of medication to terminate a patient’s life, or supplies the means, and assists the patient to self administer.’

This means that this bill is not an assisted dying bill, but it is actually a euthanasia bill under this definition. Therefore, in considering the possible consequences of this bill, we should be looking at the example of Holland, which it most closely resembles. Examples such as the Northern Territories in Australia and Oregon in America should be discounted.

Who can apply for this?

The bill states that it applies to ‘capable adults who are residents of Scotland,’ ie those who are over 16 and sound of mind. The circumstances under which they can apply for this are if they are terminally ill, suffering from a degenerative condition or if they become unexpectedly incapacitated. However, it then goes on to say,

‘Patients who are not terminally ill, suffering from a degenerative condition or unexpectedly incapacitated, but who find their life to be intolerable may request assistance to end it..’

This is a very wide ranging definition and it is not clear who it is referring to. This might be someone who is medically ill. Then again, it might be someone who is not medically ill, in which case the role of the doctor towards the person requesting assistance is unclear. The word ‘patient’ has been put in inverted commas all through the document. Does this mean that someone who requests this does not need to be ill to do so?


Who can perform this?

The bill states that an ‘assisting physician’ should be the person to carry out the request. What is normally understood by this, is that it will be a doctor. However, at the back of the draft, ‘attending physician’ is defined as follows;

..ordinarily, the GP or physician who has primary responsibility for care and treatment of the patient, but may be another suitably qualified health professional.

This does not define what a 'suitably qualified health professional' is. This might be a doctor; then again it might refer to a nurse, a nurse practitioner, a health worker or even a pharmacist. It is simply not clear what this means.


Documentation

The condition for allowing a request for assisted suicide, is that the patient makes two verbal requests, 15 days apart. These requests are documented in the attending physician’s notes. Apart from this, no written evidence or corroboration is required from a witness. The request can be carried out by one doctor on the patient, without a third party intervening at any point. Post mortem, he is required to request that a review committee verify that the specified criteria and safeguards had been observed, but it is difficult to see how they could do this, if the only documentation comes from the physician who carried out the request. In cases where the patient’s mental capacity is in doubt, there needs to be a ‘consulting health professional’ to give a second opinion, but in all other cases, one physician is sufficient.

Because the definition of ‘assisting physician’ is so vague, it is unclear as to who is actually going to be responsible for keeping the documentation. If, for example, a nurse practitioner carried this out, would they be responsible for the documentation or the doctor that the patient was registered to?

Further Considerations

People who are mentally incapacited are excluded from this bill at present. It is worth noting however, that the ‘rule of thumb’ test for someone’s capacity esp in the case of dementia, is whether they can sign their name. There are many people with dementia who can sign their name, but have no idea what they are signing and this could be abused.

Under the Adults with Incapacity Act, if a person has not previously arranged a power of welfare attorney with a relative, welfare attorney goes by default to the nurses and doctors responsible for their care at that time. This could result in a conflict of interest especially in a hospital setting, if the bill’s definitions widened. There is a possibility that this could happen, because under European law, omitting the mentally incapacitated from a service could be classed as discrimination. As I speak, the Dutch are drafting legislation to include people with mild dementia under their euthanasia laws.

I understand that this is currently a consultation document and not a legal document at present. However, I am surprised at the lack of detail, at the re-definitions of terms like ‘physician’ and ‘assisted suicide’ which are going to lead to a great amount of confusion and the wide range of the bill. If this ever gets to committee stage, it will have to be completely re-written or ditched altogether; there are too many holes in it. Whether you are for or against euthanasia, this is not fit for purpose.