Submission from the Joint Ethico-Medical Committee
Union of Great Britain
Guild of Catholic Doctors
Nuffield Council on Bioethics consultation
The ethics of prolonging
life in fetuses and the newborn
The Joint Ethico-Medical Committee is composed of members drawn from the two parent bodies. The Catholic Union is an organisation of the Catholic laity which is not affiliated to the hierarchy but which represents the Catholic viewpoint, where relevant, in Parliamentary and legislative matters. The Guild of Catholic Doctors represents Catholic Medical Practitioners in the United Kingdom.
Question 1: In cases where a fetus may suffer from serious abnormalities that are likely to be disabling in the long term, what measures may it be appropriate to take to sustain the life of the fetus or, where possible, to correct those abnormalities before birth?
Do you consider that there are ever circumstances when it would be appropriate to override the wishes of the pregnant woman?
Judgement should be based on the likelihood that a particular treatment or intervention will achieve its intended objective. It is dangerous to make a judgement on the presumed disability that the child may have in the long term. Furthermore the judgement of the possible quality of life with a presumed disability is purely subjective. To those who are healthy a disability may appear to be devastating. To those with the disability their point of reference is by necessity different, and many of those disabled, though wishing not to be so, accept the disability and certainly would prefer their current life to the knowledge that others would have preferred them to be dead.
The natural instinct of motherhood/parenthood often results in parents favouring their children over their own needs. Overriding wishes of parents should only be necessary where there is an unreasonable refusal of treatment. What is unreasonable would not only include professional judgement but also take regard of the moral norms of that individual's religious faith community.
Ours is a culture of rights, with very little consideration of associated responsibilities. Society needs to acknowledge that a pregnant woman has responsibilities to her unborn child and if a woman is making unreasonable decisions to the detriment of her unborn then society should have a right to override such decisions. One could argue that the criteria used after birth (e.g. whether a child should be made a ward of court) could apply to the unborn. Obviously where medical/surgical intervention affects the mother, then the risk/benefit analysis must have regard to the mother’s health as well as that of the fetus.
Question 2: In which of these circumstances, if any, would it not be appropriate to use medicine and surgery to prolong the life of the newborn?
Decisions should be taken with regard to likelyhood of survival. The advances in neonatal intensive care, especially treatment of prematurity, have only been made because clinicians have ignored conventional wisdom and treated some with what others would have regarded as "futile treatment". Treatment decisions in children are fundamentally different from those in adulthood, especially old age, as in the neonate there is a greater potential for repair, regeneration and remodelling. Therefore, initial presumption should be in favour of treatment unless it is demonstrated that it is obviously futile or previous treatment has failed to achieve the anticipated benefits. As stated in the response to the previous question, treatment decisions should not be based on a prediction of possible future disability,
In cases of congenital abnormality/genetic disorders, particularly those incompatible with life such as congenital absence of kidney/Patau’s syndrome, treatment should be palliative without attempting to prolong life as an end in itself. But treatment decisions should not be made to deliberately shorten life.
Question3: In your view, are these the principal ethical questions that the Working Party should consider?
- The moral status of the fetus
- Acting and omitting to act
- Questions about the quality of life.
Which of these or other ethical questions would you identify as the most important?
1. The main question is whether the Working Party should be considering the moral status of the fetus. The fetus is an unborn human being. The Catholic Church teaches that the fetus has the same and equal moral status as all other human beings. Paragraphs 2270 and 2274 of the Catechism of the Catholic Church state: ‘Human life must be respected and protected absolutely from the moment of conception. From the first moment of his existence, a human being must be recognized as having the rights of a person - among which is the inviolable right of every innocent being to life.’ and ‘Since it must be treated from conception as a person, the embryo must be defended in its integrity, cared for, and healed, as far as possible, like any other human being.’
2. The Catholic church is again clear on the morality of acting and omitting to act.
The Catechism of the Catholic Church states: para 2277 ‘Thus an act or omission which, of itself or by intention, causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator.’ and para 2279 ‘Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Palliative care is a special form of disinterested charity. As such it should be encouraged.’
It is a sad aspect of current secular and sometimes legalistic thinking to ignore the element of intent in a decision to administer or to withhold treatment. Provision of basic care is a moral imperative.
3. The aim of medical treatment is to, where possible, cure, provide relief from suffering and to maximise the functionality of an individual with disability. To decide to withhold treatment on the basis of predicted future quality of life in the expectation that by withholding treatment the infant will die, could result in the child surviving with greater disability than if treatment had been given. Treatment decisions should be based on a balance of risk of harm and anticipated benefit of treatment, rather than judgement on the likely quality of life.
Question 4: The Working Party has identified the following questions for discussion:
What might we mean by 'quality of life' for a child?
How do religious and spiritual influences affect decisions?
How do the mass media influence decisions?
In your view, are these questions that the Working Party should consider? Should any of these questions be omitted, or are there additional questions that should be included? Which social questions would you identify as the most important?
We are concerned with the emphasis on the phrase "Quality of Life" in the context of medical decision making, because however the medical profession may wish to define "Quality of Life" it will be understood by the general public in the varied and broad terms as described in the consultation document. A better basis for the medical profession to consider in these circumstances is the concept of the reasonableness or burdensomeness of treatment. e.g. if the best expected outcome of a course of treatment is that the child will for ever remain requiring inpatient treatment, then this would be regarded as unreasonable and burdensome treatment.
As an example we agree with the decision of the court in the case of Charlotte Wyatt to withhold cardiopulmonary resuscitation on the basis that any cardiorespiratory arrest would be an indication of her poor physiological status as well as indicating that recovery to an independent life outside hospital was unlikely. But we are most concerned at the reasons promoted by those seeking the judgement ie. that she can only experience pain and her future quality of life is so poor.
The Judaeo-Christian principles which underpin our culture are based on the absolute inherent dignity of every human being, regardless of their age or level of ability. Although there are variations among different religions, most adhere to this inherent dignity and expect society to uphold and treat them according to that dignity. We feel that some of the recent challenges by relatives are because of concern about the ethical basis of treatment decisions. In the case of David Glass the relatives felt that clinicians were administering diamorphine in order to bring about death. Although the European Court verdict was phrased in the language of human rights, we believe that the challenge was made because of disagreement with the ethics of the medical decision.
Question 5: Who is best placed to judge the quality of life for a child?
When families as well as professionals are involved, whose decision should carry the most weight on whether or not to intervene to prolong the life of a fetus or a newborn baby? Examples of people likely to be involved: the mother, the father, other family members, doctors or other healthcare professionals, healthcare managers, the courts, the social services.
When parents are involved, whose views should take precedence? For example: mother, father, parents together.
Who else should be involved?
How should such decisions be made, and how should any differences in view between the parties involved be resolved?
When, if at all, do you think that people should use the law to challenge medical advice?
We have already addressed the issue of "Quality of Life" in answer to previous questions and will not repeat these arguments here. However it is important to repeat that the important basic moral principles which are accepted by the vast majority of citizens must not be transgressed by the medical profession. Religious and spiritual influences will inevitably and rightly affect decisions, but the views of the popular press must not be allowed to do so.
The medical profession is skilled in making judgements on the likely benefits and risk of treatment. Their judgement should be as objective as possible. Establishing a hierachy of the weight to be given to the views of non-medical people in treatement decisions is bound to lead to significant problems, especially where an erroneous expectation of treatment outcome (either positive or negative) may significantly bias a judgement to the detriment of the child.
It is our belief that if ethical decisions are based on judao-christian principles, which is still the predominant viewpoint, then legal challenges will be infrequent.
Question 6: How much weight (if any) should be given to economic considerations in determining whether to prolong the life of fetuses or the newborn?
It would be a tragedy if people's lives were judged in terms of their economic benefit or burden to society and if treatment decisions were based on their predicted economic burden on future society. Of course resources are finite, but a full discussion of the ethical arguments involved in allocation of health care resources is too vast to summarise in response to this consultation. We refer you to work done by the Linacre Centre for Healthcare Ethics, 60 Grove End Road, London NW8 9NH in their publication ‘Healthcare Allocation: an ethical framework for public policy’ Ed Anthony Fisher OP & Luke Gormally. Publ: St Augustine Pr Inc 2002. ISBN 0-906561-19-1
Question 7: Should a quality-adjusted life (QALY) (or another measure of health gain) for a newborn child be given the same weight as a QALY for a middle aged or elderly person?
It is of interest that earlier questions ask whether quality of life is an issue to be considered, with subsequent questions being asked as if it is a foregone conclusion that quality of life years gained is a fundamental criterion for treatment decisions.
Question 8: Would drawing up more directive professional guidance be
helpful to parents and professionals?
If so, should the UK follow practice in other countries and set a minimum age below which resuscitation normally would not be permitted?
ResponseMedicine is still an art. There are always fine judgements to be made and providing directive guidance will at times be in conflict with what may be seen as an ethical imperative. Furthermore setting a minimum age for resuscitation in prematurity will be a self-fulfilling prophecy for survival and so ‘fix’ the age of viability.
Question 9: Would drawing up new legislation in this area be helpful to parents and professionals?
Legislation is not the answer to difficult moral issues. Such legislation will inevitably lead to situations where the law could require an individual to act against their religious/moral convictions, and therefore be against current human rights legislation. Any legislation in this area would require exemptions on grounds of conscientious objection.
Dr Michael Jarmulowicz. FRCPath., MB.BS., BSc., KSG.
Chairman, Joint Ethico-Medical Committee.
Guild of Catholic Doctors
Hospital of St John & St Elizabeth
60 Grove End Road
6th June 2005