Category: Blog

Stephen Hawking is living proof that people with MND can live long and incredibly influential lives. Even after the period during which his then wife, Jane Hawking refused to let doctors switch off his life-support. All these years later, I have often cited him as an example completely contrary to the idea that MND automatically renders the life of the person as something ‘not worth living’. His longevity has also defied medical prediction, again pointing up just how vague and inaccurate such predictions can be. We never really know when someone will actually die.

Yet these are stalwart arguments of a wealthy and aggressive lobby for legislation permitting assisted suicide/euthanasia. Quite they they have never devoted energy or resources to fight for the right of every citizen to have the very best palliative care at the end of their lives, remains a mystery.

It is particularly disappointing that Hawking has changed his earlier stance, but even worse that he has betrayed naive, and really rather stupid thinking in his pronouncements. Great scientists are not immune from lazy moral thinking.

The one, in particular, which upsets me is ‘you wouldn’t do it to a dog’, which is the most over-used and ill-informed ‘argument’ in the general public response.

The idea is: we are not so cruel to our pets, ‘putting them down’ when they are at the end of their lives and/or in intolerable pain. It seems a simple equation: we treat our pets this way, why on earth would we not do as much for our human companions? Should we not do more for them, go further in our efforts to ease human suffering?

 But repeating ‘you wouldn’t do it to a dog’ in a debate about euthanasia is perhaps the most unreflective, merely emotional response: it misses entirely the vast differences between the lives of animals and the lives of human beings.

Not only does it entirely ignore these differences, it also misses the very opposite point to the one that it is supposed to make. It is because of the vast differences between humans and animals that it cannot ever be so simple a matter to end the life of a human being as euthanasing a dog, even the much loved family pet.

Pointing to how (easily?) we euthanase the family dog for example, does nothing to allow us to move straight to euthanasing the family grandmother, on exactly the same grounds. Therein lies the stupidity of the remark: whether my grandmother’s suffering is terrible and terrible to witness, whatever I might think about how to help her, cannot be just like my thinking about taking an ailing, aging springer spaniel to the vet.

In fact, as one who did, it is not even such a simple matter to end the life of the family dog. Just because some people find it easy and obvious does not make it so.

But the big and stupid mistake is to equate the two – the dog and my grandmother –  and saying so spectacularly fails to explore the categorical differences between human lives and those of other animals. It does not come close to considering specific questions, for example, about the life my grandmother has led, the things she has achieved, her place in the family, her work, her relationships – or even the rôle that pain and suffering plays in human life. Her life stands opposed to the life of my dog, regardless of my part in his life, his in mine.

One ironic twist in this is that those who cry ‘you wouldn’t do it to a dog’, generally accuse those of us who oppose legalising euthanasia, of cruelty.  

But I think it is more prudent to be extremely wary of someone who thinks that putting down his grandmother involves simply and exactly the same considerations as putting down his dog. Arguing cogently about the dangers of legalising euthanasia, about the evidence from Holland and Belgium etc, is surely more humane.

It also partly ironic because disabled people and disabled people’s organisations, by their very nature, include much more experience of impairment and sometimes of suffering, than in the general population. Not many non-disabled people suffer the rank discrimination that disabled people face every day.

Disabled people are also just as likely to have witnessed the deaths of family members, or friends, who might have suffered. That our voices are disparaged in this debate, our fears dismissed (despite the most cruel of lessons in history) is equally stupid, and insulting. But this is one detail of a bigger canvas in which disabled lives are believed not to be worth living. Too many non-disabled people view a disabled life too difficult to contemplate, as though it must always involve relentless and unremitted suffering.

This crass view is all too easily expressed directly to disabled people in forms such as ‘I don’t know how you do it’ and ‘I couldn’t live like that’ extending all too easily to ‘I wouldn’t want to live like that’ and for too many, even great scientists are not immune into ‘I wouldn’t let my dog suffer like that’.

But the extension does not stop there. For others the thought quickly leads to ‘I couldn’t, so you shouldn’t want to live like that’ and on to ‘Well, I perfectly understand if you don’t want to live like that, so I’ll fight for your right to die. Indeed I’ll help you do it’

The very next step is to: ‘You shouldn’t want to live like that, so whether I can discuss it with you or not, I will ease your suffering’ and worse, ‘I will take your life because you are an abomination.’

And here we have moved from helping someone to commit suicide, which is after all voluntary euthanasia, to non-voluntary euthanasia and to involuntary euthanasia which is after all, murder.

Coronation Street is to explore the issue of the ‘right to die’ when terminally ill Hayley Cropper decides she wants to take control of her death.

To find out more click on the link http://www.bbc.co.uk/news/entertainment-arts-23969815

In this week 13^th – 19^th May that heralds the arrival of Dying Matters Week DISTANT VOICES and ALERT, Defending Vulnerable People’s Right to Live, are proud to announce the launch of:

www.noliverpoolcarepathway.com

This web site has been created as a response to the many unnecessary and unexpected deaths that have taken place since the LCP came into existence. We also wish to wake up and shake the many mainstream organisations, including those involved in this special week and prevail on them to open their eyes to the heartache and devastation caused by supporting the LCP.

Our aim is to provide as much information as we can and to inform people of the dangers posed by the LCP, many of which are withheld from public scrutiny.

We cannot ignore the evidence from relatives, medics and of course those we have lost, who can no longer speak for themselves. We must speak for them and ask those who still believe in the Liverpool Care Pathway, “How many more?,” before you ask the question, “Is this right, is this lawful?”

Until then we give the public, the relatives and anyone who cares, something that may save lives, we are offering RISK BANDS and CARDS to protect you and yours, the RISK BANDS bear the words:

NO LCP WITHOUT INFORMED CONSENT

We also offer you something that could save your life – KNOWLEDGE.

Labour peer Lord Falconer has announced that he will present a bill before Parliament next week to legalise assisted suicide for terminally ill patients in England and Wales.

Under the terms of the bill, doctors would be permitted to prescribe drugs to help “mentally competent” adults to end their lives if they are judged to have less than six months to live.

A Private Members Bill on the issue is to be tabled by Lord Falconer in the House of Lords next Wednesday (15 May).

http://www.christianconcern.com/our-concerns/end-of-life/lord-falconer-to-table-bill-on-assisted-suicide

Marie Fleming who is terminally ill with multiple sclerosis has lost her landmark court challenge to the blanket ban on assisted suicide. The right to life under the Constitution “does not import a right to die” in this “very tragic case” , the Supreme Court ruled

http://www.irishtimes.com/news/crime-and-law/marie-fleming-appeal-on-assisted-suicide-rejected-1.1376352

First, he seeks not to introduce a law to allow assisted suicide, not even euthanasia. His campaign, like that of Nicklinson, will change the law of murder  should he succeed.

There are so many emotive responses in the media that any serious questioning of the position set out by both these men is treated with disdain, even giving rise to suggestions that we must be heartless to refuse them the death the seek.

So we must keep repeating: this is not about one individual’s wish to die. The fight is to stop any law being introduced and not even the Voluntary Euthanasia Society as was (now DiD) are supporting this campaign. Lord Falconer, who is about to try again to get a bill through parliament allowing assisted suicide/euthanasia, visited Nicklinson after the so-called commission reported to tell him that changing the law on murder was a step too far even for him and his group.

When I visited Tony Nicklinson at his request, for a Channel 4 programme, he accused me of condemning him to his hated existence. I had to respond, that I/we are not condemning him at all – we resist a change in the law and for very very good reasons. If anything ‘condemned’ him it was the stroke that left him paralysed. I asked him how he would feel if he was successful in changing the law on murder and even just one innocent person died as a result. He could not answer.

What he wants for himself, what Mr Lamb wants is not even what the majority of quadriplegics want – 90% of them say they are happy to be alive. So why should one quadriplegic change the world for all quadripelgics – that is the fundamental inequality here, the self-centredness of their appeal, which we cannot speak about because we are being heartless again. But what about all those who are spinally injured like this? Who is trailing their wish to live through the media day after day?

The courts are right to protect all disabled people some of whom are pressurised already, never mind having the full weight of the law added to that pressure to die.

A disabled woman has warned that the government’s decision to scrap the Independent Living Fund (ILF) will force her and others to seek an assisted suicide in Switzerland, rather than face an alternative of residential care.

The warning came as five disabled people asked the high court this week to overturn government plans to close ILF.

Judgment in the case has been reserved, but is expected within four weeks.

The five claimants fear that without ILF funding and support they will be forced into residential care or be left unable to leave their homes.   

Their fears were underlined by Jackie Edwards, an ILF-user from Coventry, who told Disability News Service: “The last thing I want to do is end up in residential care. It’s not something I want to contemplate.

“My parents are both in their 70s and I have a daughter of 20 and there is no way I want either end of the scale to feel they have to look after me because of what the government is doing.”

Asked if she was serious about wanting to end her own life in a Dignitas assisted suicide clinic in Switzerland, rather than living in a residential home, she said: “Deadly serious, if my only other option is residential care.

“I will make the most of the next two years and then if it comes to that… I am deadly serious.”

She said that three or four of her friends, all ILF-users, had made similar statements, and added: “They are living in fear at the moment of what is going to happen.”

When asked if her friends were also serious about ending their lives in Switzerland, she said: “If things go the way people think they are going to go, with people stuffed into residential care, yes, I think they are.”

She holds out no hope that the government will listen to her and other ILF-users who have expressed their fears about what will happen when the fund is closed in 2015.

She said: “They have done this so-called consultation and they have had a great deal of response from people in my situation saying the worst thing they could do is close ILF, and they have taken no notice. The only hope is the court case.”

Jaspal Dhani, chief executive of the UK Disabled People’s Council, said her comments demonstrated “the desperate state disabled people find themselves in”.

He said: “To say that I feel angered or sickened by it would be an under-statement. This has been going on for the last 12 to 24 months.”

He said disabled people were already deciding to kill themselves because of the impact of government cuts on their lives.

He said: “Everywhere there are stories of people taking their lives because of the reduction of care packages or the threat of ending up in residential care.

“We know that that is a reality, and it is an unacceptable reality.”

Edwards has spoken to her parents about her plan to go to Switzerland if she finds herself forced into residential care after 2015.

She said: “My mum keeps saying that it won’t come to that and it’s not going to happen, but we will see.

“If I don’t get the funding I am getting at the moment, I will not be able to pay my carers to work for me.”

Edwards has previous experience of a care facility. As a teenager, she spent a couple of months in a residential home, while an accessible extension was built onto her parents’ bungalow. She said the experience was “awful”.

Baroness Jane Campbell says:

Would you prefer to be helped to die rather than be in “unbearable” pain? To most people the answer to this question is straightforward. But is it?  Unbearable suffering is not only a matter of physical pain. Someone may find life “unbearable” when they become physically unable to communicate and cannot afford

the equipment that would enable them to connect with their family and others around them. In one US case a man fought vigorously for the right to die via the courts while media coverage highlighted his communication impairment. But after a software company provided specialist equipment and

others raised funds to provide him with home-based support, he regained the dignity and independence he thought was lost for ever and decided that he no longer wished to die. Life was “bearable” again.Despair is a common reason for contemplating suicide, but research evidence from specialists in palliative care shows that the

principal reason that most people give for seeking assisted suicide is “not wanting to be a burden”. People also cite pain as a reason for wanting the option to ask others to help them die. But I would argue that society has a duty to relieve such suffering rather than use death as a way of sweeping it away.

And who exactly are the “terminally ill”? The reality is that there is no watertight way to determine whether a person is in the last months of life.I believe that the background noise to this debate feeds into desires for a body beautiful and a perfect life untroubled by illness. The debate promotes premature

death as a choice, especially for people with severe disability or “terminal” conditions. This choice agenda is false, because it will insidiously lead to less choice – the slippery slope. As we have seen recently from the enquiry into the Staffordshire Hospital scandal, the NHS is already failing to care for hundreds

of thousands of patients who die each year, many without proper pain relief. If assisted dying were to become law, the relationship between the givers and receivers of care would be damaged irrevocably. In the NHS “assisted dying” would become the cheapest, quickest and simplest option.Legalising premature death

would sow the seed of doubt about one’s right to demand help – not to die, but to live with dignity.

Baroness Campbell of Surbiton Baroness Campbell is a vocal campaigner for disability rights and an advocate of independent living. As a founder of Not Dead Yet UK (www.notdeadyetuk.org) she is strongly against any change in the law.

Terry Pratchett says:

I believe that it should be possible for someone stricken with a serious and ultimately fatal illness to choose to die a peaceful and dignified death with medical help, rather than suffer. I cannot see why the decision of whether to live or die is for anyone but the person facing the pain, suffering and indignity. As well as the sanctity of

life, there is the dignity of life and the dignity of dying. Providing that people are composmentis and making their own choices, assisted dying does not weaken the sanctity of life, but it does strengthen the dignity of our existence.At least ten per cent of suicides are committed by people facing serious and terminal illnesses.

Many of these suicides happen without consultations or conversations with anyone. My experience of the Dignitas clinic was that it provided an opportunity for individuals to have discussions with family members and professionals about the decision. This is, alas, an example of a foreign country showing dying Britons

more compassion than we do in the UK. If we had our own law on assisted dying, we could build in opportunities for counselling before someone was allowed to take the medication necessary to end their own life, or – what I’d like to see – being allowed a physician-assisted death. I am married; it would be foolish of me to believe

that I am never fully in charge of my own decisions. Ultimately, though, this does have to be a decision made by the individual after much consultation with loved ones.I would campaign as fiercely for those who want to choose to stick it out to the bitter end as I do for those who want the choice of assisted death – the key here is

choice. People with a terminal illness need to know that they don’t have to suffer. They need support. They don’t need the values and beliefs of others to get in the way of their experience of a good death. There are those who are genuinely fearful of a change in the law to allow assisted dying – and those fears are legitimate. I

have done research in those countries in Europe and elsewhere that allow assisted dying and have found no instance of foul play. I see no reason why the British experience should be any worse. In fact, with our love of bureaucracy, we just might do it better. The big debate the right to die “The debate promotes

premature death as a choice, especially for people with severe disability or ‘terminal’ conditions. This choice agenda is false, because it willinsidiously lead to less choice” “I would campaign as fiercely for those who want to choose to stick it out to the bitter end as I do for those who want the choice of assisted death – the

key here is choice”

Sir Terry Pratchett The author’s controversial 2010 BBC TV programme, Choosing to Die, showed an assisted death at the Dignitas clinic in Switzerland. He is a patron of Dignity in Dying (www.dignityindying.org.uk) and strongly favours a change in the law.

JOIN THE DEBATE

A high-profile opponent of assisted suicide says a radio documentary in which she visited the five countries that allow state-sanctioned killing left her convinced that other governments will soon legalise the practice.

The disabled actor, comedian and activist Liz Carr said she believed it was “almost inevitable” that other countries would follow the examples of Switzerland, the Netherlands, Belgium, Luxembourg and the US states of Oregon and Washington, and legalise assisted suicide or euthanasia.

Carr visited all five countries for When Assisted Death is Legal, a two-part documentary for BBC World Service that aired for the first time this week.

Carr took the trip because she wanted to understand why these countries had adopted assisted dying laws.

The conclusion she reached was that they were all countries, or states, that were pushing the boundaries on individual rights, “lashing out” against being told what to do, whether by government or organised religion.

“I think what I learned,” she says, “is that it is almost inevitable that countries are going to see this as a way ahead and as a good thing, and that is what scared me the most.”

The attitude of many of the people she met also alarmed her. “Talking to people who are very pro [assisted suicide], it seems like the most rational and human thing to do. That was quite shocking to me.”

Only last September, Liberal Democrats at their annual conference voted heavily in favour of calling on ministers to bring in assisted dying laws, while the Labour peer Lord Falconer is expected this year to introduce another bill in the Lords in an attempt to legalise assisted suicide.

Carr told Disability News Service (DNS) that she was shocked by several incidents she encountered on her journey.

At a cocktail party, during a conference organised by the Dutch pro-assisted death organisation NVVE, she was talking to a female guest when the woman suddenly asked her: “Are you suffering intolerably?”

“People totally assumed I was interested [in assisted suicide] from the point of view of wanting it, and were surprised at my objections,” says Carr. “It was the most surreal experience.”

As a disabled, English woman in Switzerland, she felt everyone thought she was there to visit the notorious Dignitas suicide clinic. “I felt really conspicuous,” she says. In the documentary, she describes how “as someone opposed to assisted suicide and as a disabled person it was weird being somewhere where it was so normalised”.

Carr was an opponent of legalising assisted suicide before the trip, and saw nothing during her investigation to change her mind. Much of what she witnessed and heard appears to have only strengthened her views.

In Washington State, which introduced its own “death with dignity” laws in 2008, she heard of the woman with terminal cancer who was told by her health insurance provider that it would not pay for the chemotherapy drugs she needed, but would fund the full cost of an assisted death.

Carr says she fears that the drift towards a more privatised health system in the UK could see similar “choices” being offered here, if assisted suicide is legalised.

And she says the evidence she gathered suggests – although it is impossible to prove – that many disabled people across those five countries are being persuaded to die by their financial circumstances and the lack of social care and support available to them.

She says in the documentary: “At a time when we are experiencing cuts in health and social care, how can we be sure that assisted suicide does not become the easy option?”

And she concludes that what is alarming about assisted death legislation is how easily such laws can be widened once they have been introduced.

“Campaigners often talk about the slippery slope,” she says. “Once a law is in, it is unlikely ever to go away, and when it is extended it is without all the debate and discussion you have when it first goes through.”

She accepts that there are cases “where people are in great pain and suffer amazingly and are at the end of their lives”, but she told DNS that her travels had not persuaded her that legalisation could be introduced safely.

“If I believed that we were valued and I believed that people had the proper end-of-life care, whoever they were, and support and medical attention, then absolutely, why not?” she says. “It is just that I don’t [believe all of that], and nothing will change that.”

Wherever you are in the world, you’ll be able to listen to the show.  To find out how best to tune into the World Service from where you are, go to:   http://www.bbc.co.uk/worldservice/programmeguide/