e-mail gill@willtolive.co.uk

Introduction Looking at the Bills in More Detail Withholding and Withdrawing Life Prolonging Medical Treatment Practices

Imbalance in the AdvanceDirective System

Involving Subjective Judgements
  Human Rights Answering a Cry for Help? Are Disabled People Good for Nothing? In Conclusion 

To All Members of the House of Commons and the House of Lords

I am pleased to share my thoughts on the Mental Incapacity Bill and the Patient (Assisted Dying) Bill with you.  I believe that any move towards Euthanasia is incredibly dangerous for people who are marginalised by society and that such moves are therefore bad for society as a whole. Although it may not be The Government’s, The Commons’ or The Lords’ intention to introduce Euthanasia, both these Bills will open the doors to it in very insidious ways.

One reason why both The Mental Incapacity Bill and The Patient (Assisted Dying) Bill are so dangerous is the imbalance in the value placed on citizens who are disabled against those who are not.  This deficit in worth is embedded into our society to a greater extent than racism is institutionalised. Public opinion now believes that disabled people and those who are seriously ill should be able to end their lives or have them cut short.  Yet an untimely death is considered a tragedy and not sanctioned in any way for anyone else.  This lack of equal worth is held in place by the lack of public knowledge about disability.  The public are largely ignorant about, what there is available to enable disabled people to cope, what disabled people can and are doing with their lives, and how they are contributing to those around them and society as a whole. The public’s ignorance is compounded by the way disabled people are represented by the media. Disabled people are overwhelmingly portrayed either as being ‘in need’ or as superheroes.  Both images illustrate the lack of equality that exists and help to keep it in place. Although health professionals should know better, disabled people are a very small part of the population so many doctors and nurses never work with disabled people and know little more than the general public.

Looking at the Bills in More Detail

There are problems with the thinking behind both Bills and how they will work in conjunction with current medical practices and human rights conventions.

Withholding and Withdrawing Life Prolonging Medical Treatment Practices. 

The Withholding/Withdrawing practices would almost automatically make the fate of severely disabled people who are judged to be mentally incapable veer towards death if the Mental Incapacity Bill became law.

From the British Medical Association’s ‘Withholding and Withdrawing Life Prolonging Medical Treatment Guidance for decision making.’1999

The BMA does not consider that the provision of treatment to prolong life will always be a benefit. In the most extreme cases of profound disability, treatment to prolong life artificially may not provide a net benefit to the patient and the goal of medicine should shift to the palliation of symptoms.

This clearly illustrates how the BMA saw severe disability.  Although this has been removed from post Human Rights Act versions such sentiments are difficult to change quickly and prejudices are still likely to be only just below the surface.  In that environment severely disabled people will be given even less of a chance if they are judged as mentally incapable or think they want to die.

If either Bill becomes law and the Withholding/Withdrawing practices stay in place it will be easier for Euthanasia to stalk hospital corridors.

Imbalance in the Advance Directive System

Normally you are expected to want to live. Advance Directives are there to allow you to choose when you would want Doctors to stop trying to keep you alive.  Yet if you are already severely disabled or seriously ill and suffer a setback, it is beginning to be expected that you would welcome death rather than carry on even if you haven’t got an Advance Directive.

Under the Mental Incapacity Bill it isn’t assumed that if a patient doesn’t have an Advance Directive he or she wants to live.  Not having an Advance Directive just means that anyone rendered mentally incapacitated will have an arbitrary decision made for them by doctors and those close to them.  An early death will be an easy option.

At present there is no official way to clearly tell your doctors and loved ones that when a choice is forced you would choose life and would not want your life foreshortened.

Involving Subjective Judgements

Best Interest

The Mental Incapacity Bill is very clear that everyone empowered to make decisions for mentally incapacitated patients must act in the patient’s best interest.  But what is in a severely disabled or chronically sick person’s best interest?  When disabled and ill people are seen as suffering it is very easy to think of death as in their best interest.  It is also very easy to believe that disabled people have severely restricted worthless lives with a quality so low that death has to be the right way forward.  Many able-bodied people are unable to imagine being happy or contented inside a disabled or sick body and therefore believe that death must be preferred.

Irremediable Conditions

The Patient (Assisted Dying) Bill leaves what are irremediable conditions and intolerable pain open to subjective judgement. Any permanent disability is by definition irremediable and many involve pain. Arthritis is one example.  There is a danger that many more conditions will fall under such blanket terms than I suspect the Bill’s creators intended.

Human Rights

Any legislation that tips judgements towards death is violating both the UN’s Declaration and the EU‘s Convention on Human Rights

UNITED NATIONS Universal Declaration of Human Rights ARTICLE 3 Everyone has the right to life, liberty and security of person.

This will not be upheld for many disabled people if these bills are enacted.

European Convention on Human Rights SECTION 1 ARTICLE 2 Everyone's right to life shall be protected by law.

This will not be upheld for many disabled people if these bills are enacted

The European Convention on Human Rights SECTION 1 ARTICLE 14. The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status.

The Mental Incapacity Bill will discriminate against those with mental incapacity and the Patient (Assisted Dying) Bill will discriminate against patients with irremediable conditions.

Answering a Cry for Help?

The desire to end one’s life is normally interpreted as a cry for help and every effort is made to make the situation better or give the person the tools to cope.  The Patient (Assisted Dying) Bill starts from the opposite stand point, it seems to be saying that it is quite acceptable to want to die and hands out the means to do it.  Can that really be right?

What should be happening is that as soon as someone is diagnosed with a progressive condition they should be treated as though they have already sent out their cry for help. Every element of help that they need or might need in the future be it care, finances, adaptation to their home or equipment should be available regardless of their financial means.  The current system is obsessed with budget constraints partially implemented by reams of red tape that make it take six months and often a great deal longer to get what you need, if you can get it at all.  It is not surprising that some people don’t relish living with a progressive condition and battling endlessly with the systems that appear to be there to stop them getting what they need.

Diagnosis of a progressive condition is a huge shock, living with one is extremely hard work, psychologically sapping, emotionally draining and very costly.  Every part of your life has to be planned like a military campaign even when you do have everything you need.  Without that ‘everything’ life becomes worthless very very quickly, yet with it many people are able to continue to have fully useful fulfilling lives.

Are Disabled People Good for Nothing?

It is very easy to forget that many severely disabled people have achieved really great things.  Classic books have been written when the authors only have control over a left foot or a blinking eyelid. Artists using their toes or mouth, to hold the paintbrush, have completed paintings of quality.  Lots of disabled people have found ways of raising large amounts of money for charity.  Many have also found ways of using their knowledge and experience to help themselves and others by lobbying for change or by setting up organisations to help people in similar situations. These achievements appear unrecognised and worthless by these Bills which seem to be saying that such lives are not worth fighting for.

In Conclusion

These two Bills that are either about to be introduced into the House of Commons or already on the table in the House of Lords, severely infringe the sanctity of disabled life. Once that is officially lost it will be almost impossible to safeguard disabled people’s lives.

I am enclosing two booklets that express my feelings about Euthanasia, which have been very generously supported by Alert.

Yours sincerely

Gill Gerhardi