Dr Catherine Moody
Nuffield Council on Bioethics
28 Bedford Square
Please find enclosed the response to your consultation on behalf of the Alliance. We are a coalition of Hippocratic and World Faith medical and nursing bodies.
I am responding as chairman, and you my reproduce it. I heard about the consultation through the Guild of Catholic Doctors, one of our constituent bodies.
I have confined our response to answers only and have not responded to all questions.
Dr A P Cole
JP FRCP FRCPCH
106a Battenhall Rd
01905 352967 t/fax
Q 1 The moral status of the born is the same as the unborn. Some argue for relative value attached to unborn life but there is no objective or agreed position on this and we do not think it is a helpful distinction.
Interventions should be guided by a basic presumption in favour of life. The nature of the intervention is on a case be case basis. Potential disability is not necessarily determinative but there is no obligation to preserve life by all and every means.
Overruling mothers wishes should be very rare , but may be justified if it is the only way to save an unborn life. In the case of pregnancy management a suitable birth plan which recognises emergencies can be helpful. It is not possible sometimes to get informed consent in an obstetric crisis
Q2 The general presumption in favour of life yields if the intervention is unable or unlikely to achieve its purpose or if the burden of it is excessive or disproportionate .As regards pre maturity the limiting factor is likely to be the availability of skills and resources. It is unlikely that a threshold can be agreed, though reviewable guidance may exist from suitable bodies. These must recognise the inevitable differences between tertiary, secondary and primary care,
A distinction may not be drawn between treatments on the basis of disability alone. This can only be dealt with on a case by case basis.
Q3 This is the key question the unborn or disabled do not have a lesser moral status. This should be made clear to families by the way in which their child is treated. Confidence is lost once parents think that their child is being treated differently because it has a disability. Many of the recent high profile cases that have come to court are due, in part, to this perception.
These can be morally equivalent especially where the necessities of life such as food and fluids are concerned.
These cannot be objectively determined. Professionals should not employ such arguments. We are sure that properly assessed and addressed disabilities are completely compatible with a contented life. We do , however, recognise an “intolerable life”, a legal term currently being considered by the courts.
Q4 As above
Religion and values, whether religiously determined or not, are central.
The role of the media can be deleterious though balanced and thought provoking reporting can play be positive. The media should not be permitted to determine final outcomes.
Professionals should confine themselves to giving accurate information. This should also state when uncertainty exists. There must also be honest reappraisals as clinical conditions frequently change. Parents may recognise these changes before professionals.
Mother, and or the parents together
Recourse to law may be unavoidable but usually represents a breakdown in confidence between families and professionals.
Q6 Should not be determinative in the NHS. Parliament has a role in determining the use of resources but the bedside decisions should be made by families guided by professionals.
Q7 We do not attach great weight to the QALY. We think proper assessments should be given such as “50% return of function...”, rather than use a flawed and potential misleading entity such as the QUALY. In any event it cannot be applied to children who have never know a different condition.
Q8 Treatment by protocol is no substitute for personal clinical responsibility. Directives have a limited use for professionals only.
Q9 Parliament may have to make decisions on the use of resources. These are not the same as decisions as to what constitutes good and ethical practise.
General remarks not covered above;
Parents approach decisions from a different perspective than professionals and given their all important role, should not be put under pressure. Almost all parents know when to give up treatment and are put under undue anxiety by questions such as “What if......”. When the time comes to make life ending decisions the family almost invariably recognise it. Their intuition that “The time has not come yet” is very likely to be correct.
We are aware of the inequality of arms that exists between Health Trusts and families. The intervention by the courts may be the only way to reach certain decisions. We hope that
Trust s may be more helpful to families rather than get into adversarial positions. Is there a role for a Court of Protection and a wider use of the Official Solicitor?
We think many of the problems that arise have done so because professionals and Trusts take up positions which do not reflect changing clinical situations.
We are persuaded that the more frequent use of second medical opinions may be of considerable assistance to families. This must also provide for transfer of children between hospitals. Financial or administrative obstacles should not be used to prevent this.