This year has seen three measures before Parliament on life and death issues. Lord Joffe introduced a private members Bill The Patients Assisted Dying Bill , which would legalise assisted suicide and euthanasia, and the Government's draft Mental Incapacity Bill which will make advance directives legally binding and allow health attorneys, who may also be beneficiaries, to make life and death medical decisions which would be binding on doctors. On the other hand Baroness Knight introduced her Patient's Protection Bill which would make it unlawful to intentionally cause death by withholding sustenance howsoever given.The Medical Ethics Alliance has been active in trying to influence Parliament, and extracts from some of our submissions are included in this newsletter. We also include submissions on social sex collection and extracts from Hansard of debates.Officers of the Alliance have been frequently contacted by the media for comment on a range of medical ethical matters far beyond the space of this newsletter. Not all of you who receiving it will be members but if you wish to support our efforts please write and donations to our charity, the online journal, would be most welcome.

Re the Patient's Protection Bill we said;

The Medical Ethics Alliance is a coalition of Hippocratic and World Faiths medical organisations. We are writing in connection with the second reading of the Patient's Protection Bill, tabled by Baroness Knight of Collingtree, which will take place on March 13 at 3 p.m.. For some years we have been concerned about deaths from the withholding and withdrawing the necessities of life . At the same time there have been real advances made in giving fluids by tube, or by intravenous or subcutaneous infusion, and improvements in oral techniques with those who have swallowing difficulties using speech therapists and dieticians.. There has, however, also been a drift towards ending lives by withholding and withdrawing fluids in accordance with "futile care plans", and the BMA's 1999 guidelines "Withholding and withdrawing life sustaining medical treatment". This is now happening to stroke, and other sentient patients, who not dying, but who are dependent on these methods. We hold that where giving sustenance is concerned, there is presumption in favour life and that food and fluids should normally be given, which presumption would only yield if the means of doing so are evidently burdensome in themselves. This was also the conclusion of the report of the House of Lords Select Committee on Medical Ethics 1994�....................

Re a Consultation by the HFEA on social sex selection we said; �The Alliance does not have one view on the moral acceptability of I V F , some holding it to be a tolerable way of enabling infertile couples who could not otherwise have children, to have a child of their own. Others take the view that the essential dignity of procreation is not compatible with fertilisation outside of the body. For those who can accept I V F , it is only acceptable when there is no other way of achieving a pregnancy. Pre implantation diagnosis, to ensure it results in a healthy child may be acceptable to a few of our members, but most are not persuaded that this can be done safely or without an unacceptable loss of embryonic human life. Some of our members can accept that in cases of serious sex linked diseases, sex determination of the embryo prior to implantation may be appropriate. If there were methods of predetermining sex before embryonic life begins, by gamete selection for example, that would be preferable. There is a consensus amongst us that discrimination between persons for reasons of gender are wrong and we will work to prevent any discrimination, either intended or unintended, arising from a change in public policy. The principle question raised by your consultation, is whether social sex selection should be supported as a matter of public policy? We are strongly opposed to such a change. The first and most obvious reason being that this would become an instrument of discrimination against the birth of girls . The reasons for this are cultural, and linked with questions of male inheritance and the survival of the family name, held to be important in some families. We would point to practices that are prevalent in India and China, where despite proscription by law, abortion of female preborns commonly occurs. If there is any doubt that this would occur in the United Kingdom, one need look no further than the policies currently used by those medical geneticists who carry out ante natal diagnostic tests. The finding of a healthy female pre born is not always welcomed, and it has been found that socially motivated abortions may follow. Why such abortions take place, when they are so clearly contrary to the Abortion Act, is beyond the scope of this letter. Suffice it to say that virtual abortion on demand, whether NHS or commercial, which has come about, is a warning that a facility granted and supposedly circumscribed by law, can change into something very different from what was intended. The other main reason why we think there should be a robust opposition to social sex selection is that it will lead to a gender imbalance in the general population. Individuals may want to balance their families but that would disturb the overall balance that at present occurs naturally. An equal numbers of both sexes is social desirable, increases the status of females, and tends towards a just and equitable society. All our members would be opposed to I V F becoming a routine method of conception for those with the capacity to have children normally. The impact of such a development on society is incalculable and in our view would be morally abhorrent. Any increase in IVF for social reasons would also have huge resource implications for medical services whether provided by the N H S or on a commercial basis. There is also an increased incidence of congenital abnormalities associated with I V F , and an morbidity and mortality amongst mothers which should militate against it. Within the cultures represented within our membership, our common ethic, and the professional experience that we share, we subscribe to the historic view of the Royal College of Midwives that, "Every child is a gift"

Extract from the debate on the Patient's Protection Bill; Baroness Knight, �The Bill does not seek to make unlawful the withholding or withdrawal of sustenance from a patient who is in the process of dying and where the placement of feeding tubes would be regarded as unduly intrusive and inappropriate or where the risk of placing the feeding tube would be excessive. Again it is important to set out what the Bill does not do. This is far removed from the deliberate withholding or withdrawing of sustenance with the purpose of causing the death of a patient who is not otherwise dying...� Lord Joffe. �I cannot see the purpose of further legislation when, in my view, doctors could probably be prosecuted under existing law�. Baroness Knight replied;�We know that what is going on at the moment is going on; people are being done to death against their will. We know that that is against our national law, the international law. We know that the existing rules, such as they are , do not stop it happening. Some kind of law is needed to protect people in that vulnerable situation�. Lord AltonQuoting Lord Mustill as saying;

�It is a striking fact that in 20 of the 39 American states which have legislation in favour of �living wills�, legislation specifically excludes termination of life by the withdrawal of nourishment and hydration�.The Bill continues to make progress.

Written Parliamentary Questions;

Baroness Masham asked Her Majesty's Government;

�Whether they have information of fear, particularly among disabled and seriously ill people, about campaigns to legalise euthanasia?�Baroness Andrews replied;

�The Government continue to receive considerable correspondence from those who in favour, and those who are against campaigns to legalise euthanasia.....there has been little evidence of �fear� from seriously ill or disabled people themselves.

The Government currently have no plans of their own to change the current law. Any proposal to change the law in this area would need to be considered very carefully�.

Baroness Masham further asked Her Majesty's Government;

�What advice they give for determining whether a person desiring suicide should be counselled to change their mind; and whether the person's disability is considered as a factor for such determination?�

Baroness Andrews replied;

�The type of counselling a person contemplating suicide should receive is a matter for the practitioner concerned to determine in consultation with the individual and their family carer. A person's disability would be one of the factors that the practitioner would need to take into account in reaching a clinical judgement�.

A submission to the Scrutiny Committee of the Mental Incapacity Bill from the Alliance; �The Medical Ethics Alliance is a Hippocratic and World Faiths coalition of medical bodies and individual doctors. We welcome the opportunity to comment on this draft Bill. We have been involved with some of these issues for a number of years having previously made submissions to the Lord Chancellor's Department.
General;

1 We welcome the Bill's provisions to protect the financial and welfare needs of people who have lost, or never enjoyed the competence to be able to manage their affairs. We will not be addressing these areas.

2 We note that the Bill applies only to adults or those over 16 years. This is appropriate as proxy decision making for the protection of children is already provided for by other legislation such as The Children Act.

3 We recognise that there can be problems over decision making in health. We welcome the intention of the Bill to maximising the patient's ability to make their own decisions and exercise their competence fully.

4 Under present law health decisions can already be made on the basis of necessity or the patients best interests and there is a considerable body of case law on this.

5 The Bill proposes a number of relatively untried and untested proposals which may have unintended consequences.

In Scotland, where the Adults with Incapacity (Scotland) Act has been in force, it has given rise to other problems. Health attorneys may disagree with doctors or cannot be located when needed. The replacement of the best interests principle has not always worked to the patient's advantage.

6 The bill does not define the �best interests' of a patient but merely suggests in section 4 that this could be something as subjective as a �belief' held under a lasting power of attorney. This is not good enough and is frankly dangerous. It vests a large amount of power with the donee but does not provide sufficient safeguards for the incompetent patient. Its potential for abuse in cases where health outcomes interlock with financial considerations is all too obvious. We do not think that the �wishes and feelings� of patients alone should be taken into account. Values should also be included. It is probable that religious beliefs amongst those who regularly subscribe to a World Faith are likely to be part of their thinking. An example of this can be seen from the �Advance Christian Declaration for the Management of Serious Diseases� appended to this submission. It will be noted that it is more that an advance refusal of treatment. We think that such a document should be recognised and respected. As doctors we believe that our colleagues would welcome such expressions. Objective criteria of the best interests of a patient exclude the possibility that it could be in that person's best interests to have his or her life deliberately ended by an action or omission intended to end the life. To do so would be a denial of the inherent worth of the incapacitated patient. In the area of health care, best interests' covers the restoration and maintenance of health, or of whatever degree of well-being can be achieved; the prolongation of life, and the control of symptoms when cure cannot be achieved. Sec. 23,24,25;

7(a) This draft Bill would introduce some new powers into Statute Law such as advance directives. Some countries have found it necessary to put advance directives into a legally proscribed form. This helps in interpretation and avoids the danger of sweeping generalisations like �I am not to receive any life sustaining treatment if I suffer ...pre senile dementia � (Voluntary Euthanasia Society). An advance directive, in our view should be at least as informed as ordinary consent to treatment. That written long ago and without informed knowledge could not come up even to the normal standard required of written consent to treatment. There will be problems of interpretation. Even testamentary wills are often disputed; one reason being the possibility that a person was acting under duress. This could apply to advance directives also. Being made in the past do they reflect the patients current views? They may well lead to delay, dispute and prevent good medical treatment being given. Since the controversial Bland judgement, tube feeding has been called �medical treatment� and therefore can be withdrawn or withheld. This bill if enacted would give force to advance decisions, including decisions to refuse �treatment� including food and fluids. This would therefore lead to the possibility of euthanasia by omission with statutory approval. It is not good enough to narrowly define euthanasia as �an active intervention to end life' the favoured definition of the Department of Health.(c) Medical advances that may be unknown to the patient may be excluded by an advance directive. There can also be unforeseen consequences from refusing treatment, for example an elderly person who refused �all operations�, and who subsequently lost their competence. If they fractured a hip it would result in them becoming bedridden and possibly dying from infected bedsores, as in times past. Legislators rightly seeking to advance patient autonomy, need to be aware that a position which permits of no derogation could lead to suffering of the sort no reasonable person would have knowingly chosen for themselves. Indeed in the worse case scenario it could result in them being reduced to that very state that they most wanted to avoid. (d) One of the greatest causes of anguish is unrelieved thirst. Unfortunately since the case of Airedale NHS Trust v Anthony Bland 1992 declared it to be lawful to remove the feeding tube from an insentient patient, there have been numerous such removals from the sentient and even the non dying to their great distress and the understandable concern of their relatives. We are aware of self-help groups who have built up dossiers of hundreds of such cases. It seems to us that the incorporation of Baroness Knight's Patient's Protection Bill into the Bill would avoid this danger.

8 Where sustenance is concerned, we argue that for those who are sentient and cannot swallow, there should be a presumption in favour of life. This presumption would yield only if medically assisted feeding was incapable of achieving its purpose, or was disproportionate or excessively burdensome in itself. We do not consider that it is possible or desirable to attempt to place a value on anther's life such as to judge it not worth living. We are very aware that persons, even those with multiply disabilities, can have a happy life if their needs are met. Proof of this can be seen in numerous chronic care settings, hospices and the day to day life of the disabled in society................ Above all we wish to see a safe Bill and if the ethical and clinical problems mentioned above, cannot be resolved we would urge legislators not to enact that part of the Bill where existing case law is sufficient.

The Assisted Dying Bill ;

Was strongly opposed in the Lords and the government decided against giving it additional time. The final stage of the debate will take place later this month, but the measure will not reach the Satute Book. The excellent debate can be read via www.catholicunion.org.

Some of the issues that the Alliance were invited to comment on by the media included;

  • Admission of Muslim Students to Medical Schools (a feature in The Times Education Supplement) was followed by a meeting between the Muslim Council of Britain and University admitting authorities.
  • Social sex selection by IVF on ( GMTV and subsequently dubbed into Spanish for Spanish TV, as the procedure had taken place in Valentia and involved a UK citizen.
  • Commercial insemination for same sex couples (The Press Association, this made many papers in the UK and was reported in Australia)
  • Extracting eggs from female abortuses for IVF treatment ( BBC, TV and three Radio channels.

A motion was put by an Alliance member;

At the BMA ARM conference, opposing the tissue typing of embryos with

a view to implantation and the bringing to birth of a child for the purpose of providing cells for transplantation into a sick sibling. It was defeated after an intervention by Council.

� A letter of complaint was sent to the BBC concerning its one sided reporting of this issue. A reply was obtained from the Director General, but no invitation to a properly balanced discussion was forthcoming.

The summer Conference of the Alliance took place in Birmingham June 23rd at;

St Mary's Hospice Conference Centre entitled;

Conscience in Medicine and Law�

Reports will be posted later on our web site www.medethics-alliance.org

First Paper
�Conscience and the Law�
Speaker, Mr John Duddington, Barrister at Law

Second Paper
�The Christian Conscience and Abortion�
Speaker, Dr Greg Gardner, General Practitioner

Third Paper
�Conscience and the Muslim Medical Student�
Speaker, Dr J Quershi, Muslim Council of Britain

Forth Paper
�Conscience and nourishing the Helpless�
Speaker, Dr Anthony Cole, Guild of Catholic Doctors

Discussion Chairman
Dr Hasan Irfan

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September 12th 2003