e-mail gill@willtolive.co.uk

Hosted by Cornwall Disability Forum

On the 12th March 2004 in St Austell at Restormel Borough Council Chambers

Restormel Borough Council

Introduction So What is it I'm fighting? If it is a basically a humane practice what’s the problem?
How? - So what is the reasoning behind Doctors letting patients die early? Poor Quality of Life
Unwillingness to Prolong Life
Mental Incapacity
Assisted Suicide Is Euthanasia Really For Able-Bodied Scaredy Cats? 'Right to Die' For People with Progressive Disabilities?
One Way of Coping Are Disabled People Driven to Want Death? Lack of choice and autonomy
  The Way Forward  
Gill giving speech in Council Offices

to menuIntroduction

About 8 years ago something, and for the life of me I don't know what, turned a vague feeling that was only just there, into a real fear that my life would be cut short if the medical profession ever really got its hands on me. Paranoia? Maybe, but it was real enough for me to write a play and that was the beginning of my fight against euthanasia.

to menuSo What is it I'm fighting?

I was staggered when I discovered that euthanasia actually means "good death". It came into use in the seventeenth century, meaning 'dying well and happily,' being prepared for death in the most positive sense of the word. Later it's meaning changed and it came to have overtones of 'putting someone to death before their natural end'.

Euthanasia has always had a bad meaning for me yet even now it is defined by the Brainy Dictionary as 'An easy death; a mode of dying to be desired.'

to menuIf it is a basically a humane practice what's the problem?

With the media's vociferous portrayal of Diane Pretty's campaign and Reg Crew's assisted death it appears that to the media and the general public there isn't a problem at all. With the rash of parliamentary bills that appeared during last year it didn't look as though there were problems for many MPs either.

However it becomes a problem for the people who will have an early death administered, if they;

  • don't want it,
  • have little control over when and how it will happen

There have been many debates about the merits of euthanasia. Calls for legalisation recur regularly and very high ranking committees have looked into the practice. Most of those investigations in the UK have come out resoundingly against it

For example in 1994 The House of Lords Select Committee on Euthanasia decided that:-

"it was virtually impossible to ensure that all acts of euthanasia are truly voluntary and that any liberalisation of the law in the United Kingdom could be abused."

After extensive research, and the hearing of much evidence the committee regarded the present law as,

"the cornerstone of law and of social relationships. It protects each one of us impartially, embodying the belief that all are equal."

Yet the demands for legalisation keep coming and because of that the Lords have convened another select committee to go through it all again this year.
Last year one reply I had to the letters and booklets I sent to MPs and Peers came from the Department of Health stating that;

"Under the current law, euthanasia, the intentional taking of life albeit at the patients request for a merciful outcome, is unlawful and anyone alleged to have undertaken it is open to charge of murder or manslaughter. Similarly, medical treatment given to a patient with the specific intention of hastening or inducing death, whether at the patient's request or not, is an illegal act. Assisted Suicide is unlawful under the 1961 Suicide Act. The government has no plans to change the law."

Similarly when we lobbied the Annual Representatives Meeting of the BMA in Torquay last summer against them talking to the government about euthanasia the general reaction was "Oh don't worry, we don't want the law changed."

All very reassuring until you find out that doctors don't need the law changing because they are already practising euthanasia regularly.

to menuHow? -

Do Not Resuscitate or DNR notices and Withholding/Withdrawing sustenance and or treatment practices are being used to deny life to elderly, frail, disabled and mentally incapacitated people. The GMC/BMA has guidelines on how these practices should be carried out but they are often not followed. All guidelines say that nothing should be done without a second medical opinion. But if it happens at all, the patient's doctor finds a colleague who they know will agree with them, so there are no checks and balances in place. Also time and time again we have heard of DNR notices being placed on patients without any discussion and without the patient's consent which is very much against the guidelines.

According to the guidelines, medical treatment - and food and water is included in that category - can be withdrawn when it is futile, in that it cannot accomplish any improvement, when it would not be in the patient's best interest to continue treatment or when the patient has refused treatment.
Guidelines like these rely on the doctor knowing the outcome of the procedure before they decide to take it away or not use it. But of course every patient doesn't react in exactly the same way to treatment because the complexities of human biology make all of us different. So doctors regularly get things wrong, patients who have been given two months to live have been known to be still alive two years later and treatments that are predicted not to be able to help at all actually make a few patients much better.

Many of you will know that the Withholding and Withdrawing Guidelines are being challenged by Leslie Burke in the High Court at this very moment Les is arguing that they will allow doctors to violate his Right To Life enshrined in the European Convention on Human Rights when his disability has progressed to the point where he can no longer swallow. We await Mr Justice Munby's verdict with some trepidation because there is no knowing which way he will jump. Les has done extremely well to get this whole thing under the spotlight.

to menuSo What Is The Reasoning Behind Doctors Letting Patients Die Early?

to menuPoor Quality of Life

They use judgements on a patient's current or predicted quality of life to decide whether their life is viable or not. This immediately puts anyone with a disability on the danger list. Most doctors still have little knowledge or understanding of disabilities and how they can be lived with and overcome.

to menuUnwillingness to Prolong Life

Technically every dead person could be kept alive on life support forever and many people don't want to be left suspended between life and death with the strain that puts on loved ones. There is a problem though. Some patients have recovered and regained a level of meaningful life after periods of 7 years and more of 'unconsciousness.' We therefore shouldn't be turning life support machines off quickly.

to menuCost

Getting budgets down has become a major priority in the NHS and justifying the cost of 'pointless' care is an ongoing pressure. Also when resources like Intensive Care beds are scarce and demand outstrips supply it is very difficult for doctors to treat a patient whom they regard as a hopeless case when they know that by doing so they could be depriving someone else of care who could have an easier predictable useful and productive life ahead.

to menuMental Incapacity

Mental incapacity is a very fashionable reason at present with a Bill going through parliament that is trying to formalise procedures for anyone who is either judged to be unable to make decisions or are unable to communicate their wishes. Again the necessity for doctors to make value judgements is dangerous and anyone with learning disabilities or speech problems will be vulnerable if this becomes law and they need Doctors help to maintain their life.

to menuAssisted Suicide

There was a Private Members Bill tabled in the House of Lords to legalise this last year. Many of us breathed a sigh of relief when it went in the bin because it ran out of parliamentary time only to find the bill's sponsor Lord Jolfe is a persistent son of a gun - the polite translation - who, as soon as parliament reopened this year, tabled the 2004 version of the same Bill. Although the bill has Terminally Ill in its title I'm afraid that any legislation in this vein will be the start of a slippery slope as has happened in Switzerland.

The Swiss passed a bill in the 1930s which allowed doctors to help people to die if they had 2 weeks left to live. Slowly that time limit has lengthened and the same law is now interpreted that they can help anyone to die whether they are terminally ill or not. The only thing that law stops is making anyone money out of it.

Where assisted Suicide is practised it encourages more people to think about an early death and means that people who could have turned the corner and lived a happy useful life are helped to die before they find the way through. There is a clause in the current bill which says that everyone should be offered palliative care before going ahead but if life can be ended summarily there will be no incentive to develop palliative care further. In the Netherlands, where euthanasia is legal, palliative care is no longer considered a necessary medical discipline.

to menuIs Euthanasia Really For Able-Bodied Scaredy Cats?

It is clear that able bodied people still have little knowledge about disability and genuinely fear that it should ever happen to them. Many of the people that I have asked have said that they would rather die than become like me and I suspect it is that fear that really fuels the repeated calls to legalise euthanasia. There needs to be a huge very creative push to help people cope with that.

to menu'Right to Die' For People with Progressive Disabilities?

Being faced with a disability is bad enough. You don't know:-

  • What the future holds
  • How you are going to cope or
  • How the people around you are going to cope.

Being faced with a progressive disability is worse simply because you do know what the future holds. The further ahead you look the blacker it gets.

If you have acquired a hereditary disability you are likely to be in a far worse position. You will have seen loved ones going through the same things and will know the future by chapter and verse. It is I suspect always much worse for the onlookers anyway than it is for the person dealing with it on a personal level. There is a greater tendency for onlookers to compare what their loved ones were with what they have been turned into. It has after all happened in front of their eyes. So if the watchers then have to make that same journey themselves it is understandable that they are held down by an awful lot of emotional baggage.

to menuOne Way of Coping

The only way I have found to cope with my progressive disability is to accept that time and energy are fairly scarce resources and any spent on negative thoughts and emotions like self pity and anger are wasted. Life is precious. You need to find things that you can do at that point in time and celebrate them. Do them while you can and then find other ways to continue doing them later.

to menuAre Disabled People Driven to Want Death?

Dianne Pretty and Reg Crew's headlong rush towards a 'merciful' death were given a lot of publicity. That invoked a lot of pity and empathy. But did anyone really question why they had got to that point. The commentators accepted at face value the reasons they gave about how badly their lives had turned out and didn't look any further.

People who request euthanasia often suffer from loneliness, lack of understanding, helplessness, lethargy and dependence on others. Depression is understandable when you are denied so many aspects of life.

Although there are now so many pieces of equipment and services available to enable even severely disabled people carry on with whatever it is they want to do budgetary constraints often mean depression is a major factor. The not knowing what to ask for and how to ask for it and the need to compete with everyone else on the waiting lists, all contribute to too many disabled people being short-changed. They either, do not receive the adaptations, equipment or care that they are entitled to or they receive a cheaper version that doesn't solve the problem properly.

Regularly it takes so long for the wheels of bureaucracy to turn that it is very easy to lose the will to fight. Of course if they fail the means tests they are totally on their own and have to fight their way through the jungle of salesmen, glossy brochures and financial deals, never sure whether they have been swindled.

A Case in point is before Reg Crew journeyed to Switzerland to die it was claimed that he hadn't been outside his house for four years. If that really was true I'm not surprised he wanted to die.

to menuLack of choice and autonomy

Hospitals are another big factor that can make disabled people suicidal. They are simply not geared up to cope with us. It is very easy to feel that you are a burden because staff find it very difficult to fit the extra care you need into their normal routine. Your care is made much more difficult by the lack of consideration given to disabled people for things like handrails etc. So you can be made more dependent than you need to be

A long term hospital stay would be dogged by boredom and if you are bedridden and need a Page Turner to facilitate reading, they would be hard pressed to get you one. The constant changeover of staff leads to a constant battle to get your needs and wants understood. All these would make life for a long stay patient intolerable.

to menuThe Way Forward

  • We should be campaigning for
  • An end to Euthanasia and calls for it.
  • Development of a Will to Live that simply says you don't want your life shortened just for the interim while euthanasia is dismantled.
  • Enough money in the pot to give all disabled people the care and equipment they need to be able to live life to the full.
  • Hospital regimes should be drastically changed to put patients in control.
  • The breakdown of the endemic institutional discrimination against disabled people in the medical establishment.

In the last sixty years we have come a long long way. We have moved from being almost totally excluded and largely locked inside draconian institutions to today where we are no longer trapped into the medical model and are largely free to study, work and live within normal society. The medical model made us take the blame for our inabilities which left us marginalised and helpless. There was little the doctors could do to help us so there was nothing anyone else could do and we were left totally powerless to help ourselves. With Vic Finkelstien's phenomenal intellectual leap into the social model of disability everything changed about a billion times for the better. It was suddenly not our fault and not only was it society's fault but it could be made so much better for all of us. Now with equipment like ramps, lifts, hoists and computers as well as P.A.s, lots of know-how and Anti Discrimination legislation there shouldn't be anything to stop us eating at life's top table if we want to. Of course there are parts of the old system left. Doctors still hang onto whatever power they can salvage and some of the economics needed to make equality really happen are causing pained expressions in officialdom. But we hold the whip hand now. We have the power to make things happen. We just have to badger, cajole, demand and if necessary shout, scream and be downright awkward to get our opinions heard, our value accepted and our needs met.

We maybe still being treated as second class citizens but we don't have to think like second class citizens.

We have to know our rights and actively persuade society to give us what we are worthy of. If we stand together and send out the same messages we will be too strong to be ignored.

© Gill Gerhardi 2004

CDF Thsnk you letter