Tag Archives: assisted suicide

 “No amount of safeguarding will ever be enough”

JulietIn this guest blog post, Juliet Marlow, a disability rights campaigner and member of Not Dead Yet UK, explains why she is against legalising assisted suicide. Not Dead Yet UK is today protesting against the Assisted Dying Bill outside the House of Parliament.

Lord Falconer’s Private Member’s Bill proposing the legalisation of doctor-assisted suicide (AS) for those with six months or less to live will receive its third reading in the House of Lords today, Friday 16 January.

This isn’t the first time the matter has been debated. Every few years somebody will make the proposal only for it to be nervously put aside. But this time feels different. Despite its controversial nature it seems the idea has somehow caught public imagination and there is a very real chance that this time it could become law.

My name is Juliet. I’m 44, married, a PhD student and freelance writer. I sing in a rock/pop band and mostly love my life. I have been disabled since I was four; I use a wheelchair and rely on PAs to assist me with pretty much everything. I am also passionately opposed to the legalisation of AS.

On the surface, AS doesn’t look that unreasonable. People know that sick and disabled people have had to fight hard for control of our own lives so naturally they assume we want to control our deaths too.

Not Dead Yet

I am proud to belong to the anti-AS campaign group Not Dead Yet UK. Most of us have personal experience of disability and our reasons for opposing the Bill will vary. But our core arguments are that it is unnecessary and unsafe. No amount of safeguarding will ever be enough to protect all vulnerable people, all the time. And that is a terrifying thought for those of us who face illness and death every day.

Sympathy and fear are the pro-AS lobby’s weapons of choice. Sympathy is hard to fight because some of their campaigners genuinely want to try and prevent future suffering.  Nevertheless, I respectfully suggest they have missed the point – it is society that robs people of a ‘good death’, not illness. With proper pain medication and decent patient-centred palliative care, a ‘good death’ can be had. It’s never easy but it can be effectively managed to prevent unnecessary suffering.

Fear is much harder to counteract. People will die in pain and distress unless the authorities ensure all terminally ill people get the palliative support they need.  It is no coincidence that at a time of savage public funding cuts, the AS question has raised its ugly head again. It is because the misguided belief that society will always take care of its most vulnerable citizens has been tarnished, exposed as a lie.

Life not death

Our solution is not to control when and how we die, but to focus on life rather than death. We choose to campaign, protest and fight until the authorities introduce a cast-iron, needs-led end-of-life service that allows each of us to live to our natural end without pain and imagined ‘loss of dignity’.

The suggestion that dignity is lost through illness and can only be reclaimed by controlling the manner of your death is not only ignorant, but insulting to disabled people who have fought to build a meaningful life. If there is any loss of dignity then it is inflicted; it is not a natural state that can be avoided by dying early. I want support to live, not to die!

The pro-AS campaign claims that the Bill has nothing to do with disability. They are at best being naïve, at worst underhand. It has everything to do with disability. After all, it is only when terminal illness threatens to become disabling that AS is even considered. The high profile cases of the late Debbie Purdy and Tony Nicklinson demonstrate how much disability informs the whole issue. Ironically neither of those people would have qualified for AS under the current wording of the Bill, which gives credibility to our belief that once in place the legislation will be modified to include more people – what we call the ‘slippery slope’ effect. Once a line has been crossed any incremental changes to the qualifying criteria can and will be passed with little resistance.

Becoming a burden

Another concern is that coercion is not always obvious. It is subtle, creeping and sometimes even unintentional. The fear of becoming a burden to our loved ones is real, especially now as an almost imperceptible but tangible shift in attitudes towards disabled people has emerged. This is fuelled by the ‘shirker vs. striver’ rhetoric favoured by all mainstream political parties.  I have witnessed genuine cases where people are made to feel unloved and unwanted by those around them; they are made acutely aware of being a so-called burden on their loved ones. Once AS becomes acceptable it will then become expected, the ‘decent thing to do’ to alleviate stress to others.

Ultimately everyone must make up their own mind whether they can support AS. But for me, if even one  person loses their life through error or coercion then that’s too high a price to pay to allow a handful of people to end it all if and when society lets them down. Dignity in dying, surely dignity in living is more important? After all, if ill and disabled people have the latter, few will ever need the former.

You can also read Scope’s view on the Assisted Dying Bill, and we would welcome your thoughts too. 

Who opposes the Assisted Dying Bill?

Scope is against legalising assisted suicide – read three reasons why.

Along with the Prime Minister, disabled activists, doctors, lawyers, older people’s charities and national newspapers, we are opposed to what would be a major change in the law.

Here are some of the reasons why they are opposed to the Assisted Dying Bill: 

Action on Elder Abuse, Mencap, Scope and Veterans Association (Joint Letter to Peers, July 2014)

“An assisted suicide law would for the first time in this country introduce the idea that there are some people whose deaths can actively be brought about; whose suicide, unlike other people’s, society would make no significant effort to prevent and indeed would actually assist.”

Baroness Campbell of Surbiton

“The existing law on assisted suicide rests on a natural frontier. It rests on the principle that we do not involve ourselves in deliberately bringing about the deaths of other people. What the proponents of “assisted dying” want is to replace that clear and bright line with an arbitrary and permeable one. At the moment they say they want assisted suicide for people who are terminally ill, but for how long will that last, and who decides what is terminal? If terminal illness, why not chronic and progressive conditions?

“And, if chronic and progressive conditions, why not seriously disabled people? I am already on the list. Lord Falconer himself conceded three years ago that assisted suicide should not be offered to disabled people “at this point in time”. This sent a shiver down my spine: it is reminiscent of Belgium’s slippery slope.”

Baroness Grey – Thompson

“Why are people worried? It is because many disabled people are not terminally ill. However, many terminally ill people experience some sort of impairment and there is a great deal of confusion around that. There is a myth that our lives are so tragic or painful that we must want to end them. Just this week I was told, “You must have wanted to kill yourself many times in your life”. No, I have not. I have experienced excruciating pain. When I was 19, I snapped a metal rod off my spine that came out through my skin, but I have never considered killing myself. The fact is, however, that many people expected that I would ask for that. What if those people were related to me?”

David Cameron, Prime Minister

“For myself I am not convinced that further steps need to be taken, I worry about legalising euthanasia and people might be being pushed into things that they don’t actually want for themselves…”

The Church of England

“The Church of England cannot support Lord Falconer’s Assisted Dying Bill…. Patient safety, protection of the vulnerable and respect for the integrity of the doctor-patient relationship are central to the Church of England’s concerns about any proposal to change the law.”

A Joint Letter from 23 British faith leaders (July 2014)

“The Assisted Dying Bill would allow individuals to participate actively in ending others’ lives, in effect colluding in the judgment that they are of no further value. This is not the way forward for a compassionate and caring society.”

British Medical Association

“Current BMA policy firmly opposes assisted dying for the following key reasons; Permitting assisted dying for some could put vulnerable people at risk of harm; such a change would be contrary to the ethics of clinical practice, as the principal purpose of medicine is to improve patients’ quality of life, not to foreshorten it; legalising assisted dying could weaken society’s prohibition on killing and undermine the safeguards against non-voluntary euthanasia.

“For most patients, effective and high quality palliative care can effectively alleviate distressing symptoms associated with the dying process and allay patients’ fears. Only a minority of people want to end their lives. The rules for the majority should not be changed to accommodate a small group.”

Royal College of General Practitioners

“The Royal College of General Practitioners (RCGP) is to remain opposed to any change in the law on assisted dying.

“[GPs] were against a change in the law for a range of reasons, including that a change in the legislation would… put the most vulnerable in society at risk; would be impossible to implement without the possibility that patients may be in some way coerced into the decision to die; shift the focus away from investing in palliative care and treatments for terminal illness; instigate a ‘slippery slope’ whereby it would only be a matter of time before assisted dying was extended to those who could not consent due to reasons of incapacity and the severely disabled.”

Royal College of Surgeons

“The law as it currently stands should not be changed and no system should be introduced to allow people to be assisted to die.  The College does not recognise any circumstances under which it should be possible for people to be assisted to die.”

As always, we welcome your thoughts on the issue. 

Reasons I’m against legalising assisted suicide

A new Assisted Dying Bill is due to be considered by the House of Lords.

It’s prompted lots of debate – including Baroness Tanni Grey-Thompson and Lord Falconer on Radio 4’s Any Questions.

Scope’s Chair, Dr Alice Maynard, explains why she is against a change in law.

1. A change in the law sends a message to disabled people that their lives are not worth living.

Why is it that when people who are not disabled want to commit suicide, we try to talk them out of it, but when a disabled person wants to commit suicide, we focus on how we can make that possible?

I think it stems from a deep-seated belief that the lives of sick and disabled people are not worth as much as other people’s.

You only have to read the news to see that disabled people are still viewed by some as a burden on society and the economy – even by those in elected office.

People may well look at me, as someone with Spinal Muscular Atrophy, and think that my life must be dreadful. But I love my life and I’ve achieved a lot.

My concern is what happens when people have the chance to act on these views. I don’t want disabled people, or others such as older people, to become vulnerable to pressure from their families, health professionals, or from society, to end their lives to stop “being a burden”. The current law gives us protection. We shouldn’t change it on the basis of a few understandably heart-breaking cases.

2. It not just about ‘terminal illness’ – it’s about disability

Of course it is about disability. Why is the person at the end of the Dignity in Dying campaign video disabled? Why did Lord Falconer poll disabled people to ask them what they thought if it’s not about them?

This Bill is all about looking at disabled people and saying ‘I’d rather be dead than be like you’. Disabled people hear this all the time – including me.

Lord Falconer even conceded three years ago that assisted suicide should not be offered to disabled people ‘at this point in time’.

Even now, who decides what is terminal? The line between a disabled person whose life-expectancy is shortened and someone with a terminal illness can often be blurred. Prognoses change, people’s circumstances change, and it is notoriously difficult to predict how long someone has to live.

3. International experience shows disabled people who are not terminally ill are using the legislation to end their lives.

Lord Falconer’s Bill is based on the one they use in Oregon, USA. There, 40% of those requesting to end their life do so because they feel a burden on friends and family.

I’ve met people who have experienced very serious accidents, and who begged to be allowed to die because their lives were changed beyond all recognition. Now they are really glad to be here. I worry that a change in the law would lead to people making the biggest decision they can make, when they aren’t in the right frame of mind.

Mental capacity can be affected by all kinds of things, including depression – which often accompanies serious physical illness- and the effect of medication. How can we make sure that the right safeguards are in place to stop people making a decision, when they don’t really have the right information and experience to understand the possibilities?

The key part of the Bill makes no reference to mental health. It would allow disabled people who have mental health problems or who are depressed to end their lives.

Doctors are against it; disability charities are against it; older people charities are against it; palliative care experts are against it. The experts say this is a bad idea.

4. Disabled people want help to live, not to die

I’ve had discussions with disabled people who want assisted suicide to be legalised, because they worry that they won’t get the support that they need when they get older. That shouldn’t be a deciding factor in ending your life.

Disabled people have experienced massive cuts to their support in recent years, leading to many feeling isolated, and unable to even get up and out of the house.

Rather than helping people to end their life, we should be making sure that the system supports disabled people to live their lives to the full, so they have a future worth living for.

Belgium vote to legalise euthanasia for terminally ill children

Richard Hawkes blogs about the news that Belgium has voted to legalise euthanasia for terminally ill children.

Many British disabled people will be looking nervously over at Belgium. They may still only be one of a handful of countries to legalise euthanasia. But the news raises many of the same issues that we’re grappling with in the UK when it comes to assisted suicide.

Right now there are loud, well-organised and influential, calls to legalise assisted suicide for terminally ill adults. But there are lots of ordinary people, not least disabled people, who are really worried at the way we seem to be edging towards a change in the law.

There are important parallels with Belgium. What Belgium’s experience shows – as with the other handful of countries, which have legalised euthanasia or assisted suicide – is that where the law is changed, euthanasia and assisted suicide go up.

In Belgium, there has been a sharp increase in the number of euthanasia deaths, which has increased from 235 in 2003, the first year the law came in, to 1133 euthanasia deaths in 2011, the last year for which official data is available.

Belgium’s decision also shows that when you implement such laws they don’t always stay within their original parameters. And certainly the assisted dying proposals from Lord Falconer leave the door open to broaden it from people with not terminally ill to people with disabilities.

Also, once again doctors are vocal in their opposition. At home, the British Medical Association and the Royal Colleges of General Practitioners, Surgeons and Physicians are all opposed to legalising physician-assisted suicide.

Over here disabled people are asking why our response to people wanting to die is to talk them out of it, but in the case of sick and disabled people it’s how can we help you die.  The law on assisted suicide works. It also sends a really powerful message countering the view that if you’re disabled it’s not worth being alive, and that you’re a burden. It stops that view turning into something much worse.

We can’t change a law that works on the basis of powerful, but exceptional cases. Politicians will debate assisted suicide again later this year. They need to guard against community bullying of our most vulnerable members.

Your reactions to the suicide storyline in Coronation Street

Coronation Street sign
(photo by Andrea_44)

Tonight the ITV Soap Coronation Street will see Hayley Cropper, a character who has pancreatic cancer, end her life.

As the Metro says “stand by your tissues”. If the build-up is anything to go by there is sure to be a strong reaction. Here is a bit of a spoiler on Digital Spy.

Over the weekend the debate continued.

Former Paralympian Baroness Grey-Thompson says this storyline may encourage disabled or ill people to take their own lives. While Daily Mail commentator Peter Hitchens’ take on the Corrie’s storyline and the ensuing debate is “the worst thing is that this sort of propaganda by melodrama bypasses wisdom and reason”.

We asked people on Facebook and Twitter what they thought

Kevin said:

“The storyline is about suicide, not assisted suicide. Everyone already has the ‘right’ to kill themselves like Hayley. I agree with Ian Penfold – let’s help the living to live, not the dying to die. 2. It is at least a strange coincidence that the story appears just as Lord Falconer’s Assisted Dying Bill is being launched. 3. Telling some people that suicide is fine as their lives are valueless because they fulfill certain physical criteria WILL impact upon disabled people….”

But those views aren’t shared by Donna who said:

“As a severely disabled person, since birth I think it should be an individual’s choice whether to end their life with dignity. As long as that person is of sound mind. I live with constant pain as my body won’t tolerate painkillers. It is hard to explain to someone how bad the pain is. Most people think they understand pain, but take my word for it, there are many different types of severe pain, and unless you have experienced bone pain for example you can’t possibly know how demoralising it is to live with day in and day out.”

Alison’s post was particularly poignant:

“I am in the last few weeks/months of my life according to the consultants, I am only 47, I will not allow myself to become a shell of the person I am, I will not and do not want to let my children watch me struggle much more with the pain I am living with. I want the right to a dignified end, an end where my mind is sound and I have been able to have conversations with the people I love.”

Christine thinks the storyline has been “very well done” and:

“This is a case of a women who is aware of her choices and made them after careful thought. She knows why she wants to do it. It’s not like she had a bad day and then decided to end it on a 5 minute decision. This argument has been around far longer than the coronation street storyline and soaps tend to mirror real life issues. The fact is the character is going to die at some point. People with disabilities may live a long life, but with excruciating pain and loss of quality of life.”

Susan added:

“Assisted suicide was covered in Emmerdale, in a tragic storyline and the legal ramifications that followed. I can’t recollect any call for a change in the law with that storyline.

Corrie’s storyline is the suicide of a person with terminal cancer. I don’t see how the leap can be made. I’m very unsure about assisted suicide. I understand the point of view of helping somebody who wants to die but can’t do it for themselves but I can also see how it can be abused not just by relatives but by officials etc. And the way this country is at the moment I can see such a law I can see disabled people being persuaded to die when they don’t want to.”

Michelle said on the Scope blog:

“As the mother of three disabled children, two of whom are severe learning disabled this frightens me! I can see some state doctor making the decision to euthanize my children when they are adults as the most economical option, rather than pay the high expense to care for them properly. It’ll be a sad day for society when that happens!”

Tonight, the proof of the pudding will be in the watching. We have to wait and see what happens, but the debate will continue, and as this headline in the Western Daily Press says: “From Tony Nicklinson to Hayley Cropper, the right to die debate is not going away”.

Corrie suicide doesn’t tell us anything about the law and guidance on assisted suicide

Post from Alice Maynard, Chair of Scope

Alice MaynardWhy is it when someone who is not disabled wants to commit suicide we try to talk them out of it and offer them support, but when a disabled person wants to commit suicide we focus on how we can make that possible? That’s the question that’s been on my mind the last few days.

This week news broke of the story-line in Coronation Street about Hayley Cropper – a long standing character who has pancreatic cancer and is terminally ill. It’s compelling and heart-breaking. It’s sparked much discussion about dying. Something we don’t do enough. Unfortunately that debate has been seized on by campaigners – led by Lord Falconer – who want to legalise assisted suicide. First, let’s be clear: the issues raised in the soap – the character is taking her own life without the help of her husband – don’t tell us anything about the law and guidance on assisted suicide.

What the storyline should remind us is that death is very much final; death is terminal.  And this is why I am completely against any change in the law on assisted suicide. The campaign to legalise assisted suicide completely turns on its head the accepted approach of supporting someone if they feel suicidal. It ignores the fact that circumstances can change, pain can be managed, limited life can be discovered to be worth living.

The campaign instead feeds on the view that some lives just aren’t worth living. It plays into negative attitudes about disability that stubbornly refuse to be consigned to history. You don’t need to look very far for attitudes such as this. A Cornwall councillor last year said disabled children should be put down. Even some medical and social care professionals make negative assumptions about disabled people’s quality of life.

For disabled people the current law on assisted suicide sends a really powerful message that these kind of negative attitudes are not acceptable. But more than that they are a safeguard from anyone acting on those attitudes and turning them into something much worse

Legalising assisted suicide would mean the most fundamental of human right of disabled people like myself – the right to life – being violated. The campaigners argue that safeguards can be put in place. But these are completely inadequate.

In May politicians will again debate changing the law. Previous bills have been rightly rejected. I hope they will reject this one too. And I hope the public will similarly reject the bid by campaigners to hi-jack an insightful and valuable soap story-line.

Coronation Street’s controversial suicide storyline

(photo by Paul Walker)
(photo by Paul Walker)

Everyone is talking about Corrie.

Next week Hayley Cropper – a long standing character in the soap who has pancreatic cancer and is terminally ill – will take her own life. 

Every family experiences death, and nobody wants to see or think about their loved ones in pain.

It’s no surprise a touch paper has been lit.  The issue of how Hayley dies has become a major talking point – from the Sun to the Today Programme.

There have been strong reactions. Warnings have been sounded about copycat suicides.

Hayley’s husband is against the suicide. We wait to see what he will do.

The storyline has restarted the national debate on assisted suicide

The Sun backs a change in the law. It’s resident GP gives a heartfelt account of what it’s like to have a relative experience decline and increasing pain…and her wish to be able to end her mother’s suffering.

Meanwhile in the courts the family of Tony Nicklinson – who had locked-in syndrome – and Paul Lamb who was paralysed after a road accident are campaigning to have the right to ask a doctor to help Paul die.

The other side of the debate

However, disabled campaigners and charities, such as Care Not Killing and Not Dead Yet  oppose any weakening of the law. They are worried that it will ferment negative attitudes to disability and lead to disabled people being put under pressure to kill themselves.

As Dr Peter Saunders from Care Not Killing said on the Today Programme “The most concerning thing of all about this is the myth that suicidal thoughts in people who are disabled or sick should be managed differently from similar thoughts in those who are not sick or disabled… It panders to public prejudice in a way that is very, very dangerous.”

Scope’s chief executive Richard, explained the concerns in a blog.

This all comes ahead of an Assisted Dying Bill which could be heard in the Lords as early as May.

Scope has long argued that this is a really important debate, and even more important is that the views of disabled people are heard.

Let us know what you think about this storyline and the ‘right-to-die’ debate that it has sparked.