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Campaigners’ deaths prove we do not need suicide laws

by Dr. Kevin Fitzpatrick OBE

“Campaigners’ deaths prove we do not need suicide laws” by Dr. Kevin Fitzpatrick OBE

We do not ‘speak ill of the dead’. De mortuis nil nisi bonum dicendum est, a mortuary aphorism that dates from at least the 4th century is, I suspect, rooted in a superstitious fear that the dead may come back to harm us if we say bad things about them; perhaps that we might ourselves be condemned to wander as ‘lost souls’ in revenge for badmouthing those who are gone. We may, at times, wish to honour the memory of someone we couldn’t stand in life, or whose works and their consequences we hated; but if we are to avoid dishonesty, insincerity, we must have the courage to stand by what we said when they were alive. We can still be properly respectful in how we speak.

Of course the rule does not apply universally, but it seems we only allow ourselves to tell hard truths if the dead person was truly bad, a mass murderer. Maybe that comes from recognising that we are all fragile, given to making mistakes, doing some bad things at times.

In any case, it is surely possible to distinguish between the person and their legacy. I met and debated with Debbie Purdy a couple of times and I thought she was wrong – she made what is called a ‘category mistake’ – mixing up the category of one individual saying ‘I want to die now’ with the idea that such a wish must be enshrined in law. Individual wishes are just that – individual. Laws cover every citizen of a state or jurisdiction in which they are passed – which means they are a whole different category. It was her campaigning for this category mistake to be legalised that brought us into opposition.

After hours of grilling by Tony Nicklinson, in an interview he had demanded, I asked him: ‘Say you get your way tomorrow and the law is changed, and the next day, even just one innocent person dies as a result – what would you say?’ He would not respond at that point, and terminated the interview.

But that is the point for me: if, as a campaigner, you cannot guarantee the safety of others, then the death of innocent people under such laws, even that threat, should stop the campaign in its tracks, force campaigners to re-assess what they are doing.

The legacy of such campaigners, three of whom (two in Britain, one in Australia) died ‘peacefully’ in hospice or palliative care settings over Christmas, is surely the biggest, final irony. These three died ‘good deaths’ without any change in law. They have proved there is no need for a change in law in the UK, in Australia, anywhere in the world.

So it is not out of some false respect that I say nothing about Debbie Purdy the person, but out of honesty, recognition that I am not qualified to speak about her personally. I barely knew her. I wish so many others would acknowledge that they too really knew nothing about her as a person. But the time I did spend with her allowed me to understand her motivations – whilst still seeing her mistake. The problem was and is, the damage that mistake brings.

Pro-assisted suicide/euthanasia lobbies around the world claim that ‘the people want this’ change in law. Opinion polls, which everyone knows are too easily manipulated, show one thing: people can be afraid to die. We needed a poll to tell us that? These polls confirm that when asked specific questions, 80% say they would like to die peacefully, at home in their own beds, surrounded by (only) loving family (and not the ones who can’t wait to see the end of the person dying, or get their hands on their money). The biggest surprise for me has always been – only 80%? What on earth do the other 20% want for themselves, for me?

Media headlines, that most people want to die peacefully, are just empty, the most facile statements of the obvious. Such headlines, these polls, give no additional strength to an already terminally weak argument about changing laws, and those who pretend the vox-pop is some kind of marker will run as fast as they can if the same opinion polls show, as they invariably do, that we should bring back the death sentence.

In Belgium, which only gave up its death sentencing in 1996, a convicted serial rapist/murderer was supposed to die by lethal injection later this month (January 11, 2015) under their euthanasia law. Now the doctor has refused to do it. In a perversion of liberal compassion, this man has been refused proper psychological care (after all, compassion has its limits) – but an execution, death by euthanasia – can you see the difference? For him? For us? Public outrage has stayed his sentence: for now. Even Belgium’s Dr Death has counted this as a step too far.

Debbie Purdy has left a legacy: a determined few who cynically use emotion will feed on the unfounded and illegitimate reactions of those who knew her not at all, and by those who opine in the shallowest manner about her ‘courage’, and all the rest. From our shared perspective of living disabled lives, I think it’s safe to hazard that Debbie knew something that a lot of people, and perhaps especially a lot of disabled people already know: living with a disability is not a question of courage – it is a routine, sometimes a tough one, not a lifestyle choice: disability is our fact of life.

Anyone can face the question ‘Yes or no?’ ‘Do I get up – or give up – today?’ A whole philosophical movement called existentialism was born of the feeling: Sartre and Camus – neither of whom died through suicide. Most disabled people admit they do not always have one answer or another, or the same answer every time, but most also get up and get on with their lives as parents, spouses, siblings, friends, work colleagues, customers, etc.

I say ‘most’ because like any section of the population, ‘disabled people’ is not a smooth category – there are as many different kinds of disabled people as there are people. Some of us will not want to lead a disabled life; some, will be ground down by lack of support from the world around them, will become exhausted by unnecessary struggles, the futility they experience crying out against the injustice say, of the destruction of the Independent Living Fund. By all accounts, the rate of suicide is rising in Britain amongst disabled people so badly affected by the cuts in support for them to live independently. Is that a reason for killing those sufferers,

for making it legal for someone else to do so?

I say, categorically: ‘No’.

As Sartre’s intellectual exercise proves, suicide is not such an alien thought to any of us. We do not need to fear it: it is part of the human experience to contemplate ‘disappearing’ when the going gets tough – just ask Lord Lucan. We all want the ground to swallow us up at some point – that’s why the expression is so common in our language – because the feeling is.

The terrible suicide contagion that hit (and I believe still continues to impact) on a South Wales community was never more poignantly highlighted than after one young teenager’s death – she was reported as having a handful of social media ‘friends’, being something of an outcast abused by her peers, a very unhappy child from an impoverished background. Her message was ‘Just wait and see how many friends I will have after this’ – the appalling sadness of any teenager being so fooled. Sure enough, there were many hypocritical ‘friends’ who had been bullying her, who then appeared on her ‘page’ – for a week or two – to declare their undying love for her, after she hanged herself. She wasn’t around to see it happen.

The power of attention pulls others into media campaigns too – it sustains them, gives them purpose in life – for a while. Campaigners seek results, naturally. But if Debbie Purdy’s legacy is a change in the law in Britain, built on the mistake of making hard cases into bad law, I personally will count it as a stain on her life and memory. Others may be upset by that but I think if this does happen, they will have made worse of her as a person in a way that I never could speaking any ill of her.

 

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The Debate continues

First a big “well done” to all those of you who were able to attend the lobby on the 14th July. Around 30 MP’s attended which is a good number based on experience. It is still vitally important that we all keep the pressure on by contacting our MP’s to put our side of the argument on Assisted Suicide.

Here is a personal and very interesting view on the issue written by Robert Twycross a retired palliative care specialist. We are grateful to him for allowing us to reproduce it here

 

Personal view: Medically-assisted suicide

On September 11, the Second Reading of the Assisted Dying (AD) Bill takes place in the House of Commons. This would allow a terminally ill adult in England or Wales to have a lethal prescription for self-administration, supervised by ‘an attending health professional’ (doctor or nurse). The key prerequisite is a life expectancy of less than six months; the patient does not have to be in physical or mental distress. The Bill is not about long-term progressive conditions such as multiple sclerosis or dementia. Opinion polls indicate that 80% of the public favour medically-assisted suicide. In contrast, 90% of palliative care doctors are against. Why?

The main justification for such a fundamental change in the law is the right to self-determination: people should have the right to choose the time and mode of their death. Supporting arguments centre on the limits of palliative care and compassion (‘it’s compassionate to assist someone to die who is suffering unbearably; it’s cruel to force them to continue to suffer’).

However, despite upsetting ‘horror stories’ (possibly some in your own family), palliative care does not (at least, should not) leave patients to suffer unbearably. In extreme situations, increasing the dose of symptom relief and sedative drugs is already permissible as a ‘last resort option’. The most appropriate response to horror stories is to increase the availability of specialist palliative care. Interestingly, Lord Falconer has said that the primary reason for wanting to change the law is not uncontrolled pain but the intolerable thought of lost independence.

Restrictions on self-determination are legitimate if other people are likely to be endangered. Thus, the debate about AD centres on the question: can a law be devised which would allow terminally ill people to end their lives (should they wish to) without endangering others (who do not want to)? Already some people fear (and refuse) palliative care because they fear they will be ‘done away with’ – and suffer as a result. This number would surely increase if AD became lawful, enhancing the perception of doctors and nurses as potential killers.

Although both sides claim compassion as a major motivation, palliative care and AD are essentially mutually exclusive philosophies. Palliative care is based on the belief that life has meaning and purpose up to the moment of death, whereas AD is essentially nihilistic. Expecting health professionals to deliver both palliative care and AD – to face in two directions simultaneously – is simply too big an ask. Chris Woodhead, an AD activist who suffered from motor neurone disease, said:

‘The only way you can deal with [terminal illness] is to live from day to day… The more limited your world, the richer it can become… There are benefits. You can be brought closer to people who love you. This has brought me closer to [my wife]. That is something to be grateful for.’

These sentiments reflect well the ethos of palliative care.

The common denominator in patients who desire to hasten death is despair – a sense of hopelessness, helplessness and lack of control – related to actual or anticipated severe pain or other distressing symptom, loss of independence, and becoming a burden. The wish to hasten death is generally not constant unless the patient has a depressive illness, which normally responds to treatment. In practice, almost all patients change their minds when in receipt of high-quality palliative care. In fact, an expressed wish by a terminally ill person to hasten death does not mean they want AD; they want to be heard, to express their frustrations and fears, to be understood.

Prognosis, when more than a few weeks, can be wildly inaccurate. Some patients live much longer than estimated, sometimes 10–20 years. There is also risk of coercion: both doctor-on-patient and family-on-doctor. A Dutch doctor commented:

‘In the past, if I suggested euthanasia (a lethal injection administered by a doctor), nine times out of ten the patient would choose euthanasia; now when I suggest palliative care, they choose palliative care’.

In Belgium after 13 years of euthanasia, families much more consider dying as undignified, useless, and meaningless, even when it is peaceful; and demands for fast active interventions, particularly in relation to elderly parents, are increasingly direct.

Indeed, once the barrier of legislation is passed, AD seems to take on a dynamic of its own. Last year in the Netherlands, a member of a Regional Euthanasia Review Committee wrote:

‘Whereas the law sees assisted suicide and euthanasia as an exception, public opinion is shifting towards considering them rights, with corresponding duties on doctors to act… Don’t go there.’

In contrast in the UK, the law at present provides a clear ‘bright line’. It may occasionally be crossed by doctors (and others) but it is unambiguous. Indeed, it is perfectly consistent to argue that medically-assisted dying is ethically legitimate in some extreme cases but that it would be wrong to change the law. As now, it could be better to allow hard cases to be taken care of by various expedients than to introduce new legislation which would become too permissive.

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Questions and answers re assisted suicide

Why do you oppose a change in the law?

We’re concerned that people who are sick or disabled may feel pressured to make decisions about their lives based on concerns about being a burden, rather than an objective decision about whether they want to live or die.

We’d like to see the law changed so there’s a right to live a full and active life, rather than a right to ask a doctor for assisted suicide.

It looks like many disabled people are in favour of a change in the law? There’s even an organisation of disabled people campaigning for it.

The objective research on this is very limited. Most disability organisations and charities have said they don’t want the law to change because they’re concerned about the dangers it would bring.

It looks like the general public is in favour of a change in the law?

The general public also has said it wants to bring back hanging. This is a complicated debate, and it’s important not to be swayed by sensationalist headlines or simplistic opinion surveys. In the meantime, a change in the law would put disabled people directly in the firing line – the risks are huge.

Don’t you think people should have more choice about how they die?

People should certainly have more choice about how they live. If we lived in a society that fully supported disabled people’s choice and control, then having an informed debate on assisted suicide would be more straightforward. But we don’t. Instead, we’re seeing swingeing cuts to disability benefits and social care, and an increase in disability hate crime. Being disabled in the current climate is challenging enough, without putting assisted suicide on the table.

Doesn’t your opposition to change, and the current law, mean that you are condemning people who are dying to misery at the end of their lives?

We have one of the best health services in the world, and medical support around end of life care is improving all the time. If palliative care services are prioritised and fully funded, people would get the care and support they need at the end of their lives.

In the meantime, the law we have has a stern face, but an understanding heart. It holds serious penalties in reserve to deter abuse and manipulation. It combines deterrence with compassion: it gives us the best of both worlds.

Campaigners say this isn’t about disabled people, it’s about people who are terminally ill. Why are you worrying about it?

Because it is about disabled people. Being terminally ill isn’t an exact science, and we all know examples of people who have been labelled as terminally ill and since recovered. Disabled people are often considered, in our society, to have lives which are not worth living. It’s not a big step for people to conclude ‘Well, they don’t have a great life so isn’t it better for everyone if they have the right to kill themselves.’

It’s working OK in other countries isn’t it?

No. There’s limited records in Oregan, which is often highlighted as an exemplar. What we do know is that there is limited psychological testing for people who say they want assisted suicide; and there has been an increase in the number of people who have depression who have been given suicide drugs by doctors.

Campaigners have said there will be powerful safeguards in place; you don’t need to worry?

The law is an imperfect thing. Safeguards are also imperfect. Coercion is rarely obvious, and the current law protects us from malicious manipulation.

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Baroness Finlay on palliative care and Latest VBlog from Sian Vasey

Baroness Finlay, co-chair of Living and Dying Well, argues for palliative care reform in her recent Huffington Post blog: http://www.huffingtonpost.co.uk/baroness-ilora-finlay/palliative-care-services-_b_7735322.html

Here’s the link to Sian’s latest VBlog

Sian Vasey VBlog

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Lobby your MP come to Portcullis House on the 14th July 2015

The Rob Marris Assisted Dying Bill will be debated in the House of Commons on the 11th of September, as soon as Parliament reconvenes after the summer recess. There is an opportunity to lobby MPs before they go away for the summer. There may be some money available to help with costs. Find out more at the end of this information.

Glyn Davies MP is sponsoring a lobby day to enable those concerned about Rob Marris’s Assisted Dying Bill to speak directly to their MP.

This will run from 1-3pm on Tuesday 14th July, in the Boothroyd Room in Portcullis House, Parliament.

This is the most effective way of lobbying to a tight timescale, and, if it is well attended, will have real impact.

You need to send a request to your MP (MP email addresses are available here http://www.parliament.uk/mps-lords-and-offices/mps/) asking them to come along to the Boothroyd Room between 1 and 3pm.

You could say something like:

“I will be in the Boothroyd Room from 1-3pm on 14 July and, as one of your constituents, I would like to speak to you at some point during this time about the Rob Marris’s Assisted Dying Bill and the dangers it presents for older and disabled people. It is difficult and expensive for me as a disabled person to get to Parliament. I would appreciate it if you would confirm that you are able to make time to see me at some point between 1-3pm on the day.”

Even if you get a negative answer, do come anyway – pressure can be put on MPs to meet on the day itself, when it will be very difficult to refuse.

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Revised Assisted Suicide Questions and Answers

This is a revised up to date version of our Frequently Asked Questions and Answer Sheet. Hope it proves useful.

 Q.1 Campaigners for ‘assisted dying’ in the UK say they want to change the law for terminally ill people, not for people with disabilities. So why should people with disabilities feel threatened by the campaigning?
A. Terminal illness and disability are not mutually exclusive. Many people who are terminally ill are disabled people of one sort or another as well. Many long-term conditions, like (for example, Parkinson’s or MS, which involve disabilities can be life-shortening and can have successive ups and downs throughout their course. During any one of these ups and downs it would be possible for a doctor to say that the person concerned could be ‘reasonably expected’ to die within six months. Yet they are not terminally ill.

Q2 But why shouldn’t mentally competent adults who are seriously ill and suffering have the choice of physician-assisted suicide if they want it. After all, no one is going to be forced to have it?

A. Assisting a suicide is a serious matter. The law we have is there to protect us from malicious pressure or manipulation by others, who may have an interest in seeing us dead, and from ourselves too – from harming ourselves because we are depressed or feel a burden on others. It’s all very well to talk glibly about being mentally competent, but serious illness and disability are stressful experiences. It’s one thing to say whether someone who wants to ‘end it all’ is compos mentis, but it’s perfectly possible to be compos mentis and still be suffering from depression. The so-called safeguards that are being talked about may sound reassuring to the layman, but the reality is very different..

Q3. But isn’t it true to say that legalised assisted suicide is working well in Oregon?

A. No, it isn’t! The number of deaths annually in Oregon from legalised assisted suicide is now between six and seven times the number when the law came into force. Oregon’s current death rate from this source would lead to over 1,500 assisted suicides a year in England and Wales if we had a similar law here. And there is no sign of this rising trend coming to an end. Then there is the practice of ‘doctor shopping’ – people asking their doctors for assisted suicide but being refused and going from one doctor to another until they find a compliant one , who knows little about them beyond their case notes and who is, by definition, someone who may see suicide as a reasonable response to terminal illness. And recent research has shown that some people suffering from undiagnosed clinical depression are getting through the net in Oregon and being given suicide drugs to end their lives. Is this the sort of thing we want to see happening here in Britain?

The campaigning groups claim there has been no abuse of Oregon’s law and no demand for its extension. But there is no system in place in Oregon to scrutinise how requests for assisted suicide are being handled. It is impossible to know therefore whether there has been abuse. Moreover, we are now seeing attempts in the Oregon legislature to extend the definition of terminal illness to include people with an estimated 12 months to live.

Q4. Public opinion supports a change in the law. What right have you to oppose it?

A. Public opinion supported going to war in 1914 and appeasement in the 1930s; and opinion polls now regularly show support for the return of capital punishment and banning all immigration. You can’t safely decide complex and controversial issues like this on the basis of opinion polls.     And, when you examine opinion poll results carefully, you   often see that they do not say what the campaigning groups claim.

Moreover, surveys of doctors – the people who know what ‘assisted suicide’ means and who would be in the front line if it were to be legalised – show that the majority are opposed to legalisation and that only around one in seven would be prepared to have anything to do with it.

It’s all very well asking people hypothetical questions in opinion polls. As a select committee on ‘assisted dying’ was told by experts five years ago, most people know little about the subject apart from the sensationalist stories they read in the press and their responses can often be ‘kneejerk’ reactions to loaded questions about ‘choice’ and ‘suffering’. But, as people with disabilities, we are the people in the firing line who would be put at risk if the law were to be changed.

Q5. But isn’t the law as it stands cruel?

A. The law that we have has a stern face but an understanding heart. It holds serious penalties in reserve to deter abuse and manipulation. But, where assisted suicide does occur, the Crown Prosecution Service looks at the evidence carefully and, where it is clear that assistance has been reluctant and in response to persistent requests by a suffering individual, charges are not brought. It combines deterrence with compassion: it gives us the best of both worlds.

What the campaigners want to do is to replace this with a licensing system in advance. But enabling laws have a habit of encouraging the acts they enable. And, in any case, once an act of assisted suicide had been licensed, who is to say that no coercion or pressure has been applied before the act is actually carried out.

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Hostility towards disabled people increasing

A recent Scope survey suggests that hostility from strangers towards disabled people is on the increase. Although this is primarily directed at those assumed to be so called “benefit scroungers” this is yet another attack on disabled peoples rights. It also adds fuel to the fire that we are an expensive drain on society and that our lives are not that valuable. It adds to the propaganda designed to suggest that perhaps assisted suicide has some value to society as whole! We need to counteract this insidious idea wherever we see it!

http://www.guardian.co.uk/society/2011/may/14/disabled-face-increasing-hostility-strangers