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The Right to Life

Towards a Policy
for XXX

Draft - 26^th March 2000

by Andy Berry and Glynn Vernon

Introduction

In this paper, we explore an issue of fundamental importance to people with disability - their right to life.

We show how this is under threat and then suggest a policy that XXX might adopt.

So there is no doubt, we believe, that XXX must 'stand up and be counted'. We must go as far as our charity status permits us to reverse the current erosion of the right-to-life of people with disabilities.

How is the Right-to-Life Threatened?

Historical Context

In a historical context, we might summarise the situation as follows:

Ø Before the 20^th century, medicine couldn't do much to help people with disability

Ø In the 20^th century, much of medicine's effort was devoted to saving the lives of people with disabilities

Ø In the 21^st century, medicine is beginning to ask when or even whether to, rather than how to save the lives of disabled people

Definitions

Any discussion on the right-to-life must, of necessity, make sure that we are all talking the same language. In this spirit, we've defined some crucial terms below:

Term	Definition
Right to Life	The belief that all human beings have an inalienable right to exist
Euthanasia	'Mercy Killing' or PAS (Physician Assisted Suicide). Commonly divided into 'voluntary' where the person asks for death and 'involuntary'. Voluntary euthanasia is different from suicide in that the person seeks assistance in taking their life. May also be divided into 'active' (where steps such as injections are used) and 'passive' where treatment may be withheld.
Eugenics	'Selective Breeding'. The proposition that the human race would be improved if certain people are prohibited from becoming parents.
Withdrawing and Withholding	Refers to the practise of stopping treatment or not offering treatment.
Advance Directive	‘Living Will’. A document that allows people to leave instructions about their possible medical treatment, in case there comes a time when they are no longer capable of making decisions or of communicating them.

Current Threats

We have noticed a distinct change in disabled people's attitude to the medical community. We have both spoken to friends about to go into hospital who are worried that they will not be resuscitated if they have a problem during surgery or have treatment withheld from them as a result of value judgements about their ‘quality of life’.

We have both experienced this:

	Glynn felt it necessary to leave express instructions that a trusted friend should be contacted if any questions arose when he was last in hospital.
	Andy was asked by a counsellor to ‘consider his future’[1] just after his first operation on his neck while he was paralysed.

The days of the Hippocratic Oath ("First, do no harm") seem to have gone.

Some people (for example, the philosopher Peter Singer) openly argue that the life of an infant with disability is worth less than that of some animals.

The BMA is leading a debate at the moment around the issue of withholding and withdrawing treatment from people in a Persistent Vegetative State (PVS)[2]. Their aim is to overturn the current position that in such cases that doctors must seek a court order and replace this safeguard with a requirement merely to get an independent second opinion. The danger is, as Andy pointed out in a letter to the BMJ, that many people with disability fail one or more of the proposed tests:

	being able to interact with others;
	being aware of his or her own existence and having an ability to take pleasure in the fact of that existence; and
	having the ability to achieve some purposeful or self directed action or to achieve some goal of importance to him or herself.

If treatment is unable to recover or maintain any of these abilities, this is likely to indicate that its continued provision will not be a benefit to the patient.

Withholding and Withdrawing Life-prolonging Medical Treatment
British Medical Association, 1999

In January 2000, the Medical Treatment (Prevention of Euthanasia) Bill received good support on its Second Reading in the House of Commons but failed through lack of time. The Government opposed the Bill. The danger is that the failure of the Bill could give the impression that Parliament supports euthanasia - in the debate, Yvette Cooper (Minister of Public Health) gave the distinct impression that she favours euthanasia.

The development of a powerful pro-Euthanasia lobby is also worrying particularly when leading figures in the movement can make statements like:

As for the voluntary element, this is of course fundamental in the case of adult patients who are capable of communication, but in many other cases it cannot apply - though, admittedly it may be tactically right for the V.E.S. to ignore such cases.

Barbara Smoker, a former Chairman of the Voluntary Euthanasia Society,
in the V.E.S. Newsletter, September 1991

In the Netherlands, where Euthanasia is openly practised[3], there is evidence that the voluntary nature is often illusory:

"Voluntary" euthanasia should be rejected because its voluntariness is often counterfeit and always questionable. In Holland, doctors have tried to coerce patients, and wives have coerced husbands and husbands wives to undergo "voluntary" euthanasia.

Richard Fenigsen
from Special Supplement - January/February 1989 - Hastings Center Report

Proposed Policy for XXX

If disabled peoples’ right-to-life is under threat, it is surely up to XXX to give a powerful lead in this debate - we can't leave it to others.

Principles

In this area, any policy must be based on solid ethical foundations. We suggest the following principles:

1. That it's unethical, immoral and unjust to make life-and-death decisions for another human being.

2. That an infant or child has exactly the same rights as an adult.

3. "Quality of life" is unusable in this context because it is so bound up with personal experience, expectations etc. that it is impossible to make a judgement regarding the quality of life of another person.

4. "Medical model" quality of life measurements, based on functional abilities, are largely meaningless and may vary almost from day-to-day.

5. That sickness and disability are separate.

6. That appropriate support and pain-relief reduces people's expressed desire for euthanasia.

7. That active euthanasia is always wrong.

8. But, that at the end-of-life, an individual should have the right to say 'enough is enough' subject to (6) and (7). This means that an individual should have a right to ask doctors not to prolong their life, but should not have the right to ask doctors to help them die. This should only apply where the person making the request is fully conscious and competent.

9. Advance directives create an environment in which euthanasia becomes acceptable. Further, they represent but a snapshot of a person's perception of quality of life and of circumstances of which they have little knowledge. All the evidence points to this perception changing as a person gets older or when they become disabled. For these reasons, we oppose them.

Proposed Policy

We therefore suggest that XXX:

Ø Confirms its commitment to the principles above.

Ø Actively seeks out other groups who share this commitment and works with them to further the aim of protecting everyone's right-to-life.

Ø Does nothing that could be seen as supporting euthanasia and the withdrawal or withholding of treatment with the intention of ending life.

Ø Protects the right-to-life of our service users and investigates any case where this is threatened.

Ø Ensures that this policy is known and followed by all staff and volunteers.

[1] The nature of the ‘consideration’ to be given was not clear.

[2] At the beginning of March 2000, they also held a conference on PAS.

[3] Although technically illegal, doctors who practise euthanasia are not prosecuted. They should report it when they do it, but few do.