| Cloning Essay, Research Paper
CMF Ethics: CloningSubmission from the CHRISTIAN MEDICAL FELLOWSHIP to the
Medical Ethics Committee of the BRITISH MEDICAL ASSOCIATION on WITHDRAWING AND
WITHHOLDING TREATMENT
Introduction
Christian Medical Fellowship is interdenominational and has as members more than
4,500 British doctors and 1,000 British medical students who are Christians and
who desire their professional and personal lives to be governed by the Christian
faith as revealed in the Bible. We have members in all branches of the
profession, and through the International Christian Medical and Dental
Association are linked with like-minded colleagues in over 60 other countries.
We regularly make submissions on ethical matters to Governmental and other
bodies and, for example, commented at length[1] to the House of Lords Select
Committee on Medical Ethics in 1993 on matters which include those covered in
this Submission. We are grateful for the opportunity to comment on the issues
involved in the BMA’s Consultation Paper Withdrawing and Withholding Treatment
and would be willing to help further if requested.
Positional Statements
The following concepts in our Affirmation on Christian Ethics in Medical
Practice are relevant to this Submission:
In Relation to Human Life
Acknowledging that God is the Creator, the Sustainer and the Lord of all life.
Recognising that human beings are unique, being made in the ‘image of God’ . . .
Maintaining the deepest respect for individual human life from its beginning to
its end, including the unborn, the helpless, the handicapped, and those advanced
in age.
In Relation to Patients
Giving effective service to those seeking our medical care irrespective of age,
race, creed, politics, social status or the circumstances which may have
contributed to their illness.
Serving each patient according to their need . . .
Respecting the privacy, opinions and personal feelings of patients and
safeguarding their confidences.
Speaking truth to patients as they are able to accept it, bearing in mind our
own fallibility.
Doing no harm to patients, using only those drugs and procedures which we
believe will be of benefit to them.
Maintaining as a principle that the first duty of doctors is to their patients,
whilst fully accepting our duty to promote preventive medicine and public
health.
We hold the Bible to be the revealed Word of God and find this helpful in giving
us principles such as the above to guide decision-making in the ever more
complex areas of ethics and practice.
General Comments
We regret the tight timetable allowed for the production of Submissions on such
a vital matter. To circulate a long and complex consultation document in July,
just before the holiday season, with a deadline of mid-October has meant that we
have not been able to hold as wide a consultation within our own extensive
constituency as we would have wished.
Although some of us felt the document ‘meandered’, it is certainly comprehensive
and we find much to commend in the content. We would particularly commend ‘a
presumption in favour of prolonging life’ in cases of doubt (2.1), the
introduction (’a-c’) to Basic Moral Principles (2.8), the refusal to categorise
patients on the grounds of disability (eg 2.8.4) and the concept of ‘Best
Interests’ (2.9.4).
Specific Comments
Before attempting answers to the specific questions posed in the consultation
document, we make a number of comments of a ‘compare and contrast’ nature:
Curing and caring – not killing
Although we acknowledge that this consultation is not about euthanasia, that
subject can never be far away from the issues involved. We hold that intentional
medical killing is always unnecessary and always wrong[1] and has no place in
the practice of medicine.
Caring – not curing always
Medicine has two traditional obligations – to prevent death and to relieve
suffering. One (cure) deals with the quantity of life, the other (care) with its
quality. At the heart of the discussion of withdrawing and withholding treatment
is the shifting of the balance from the obligation to prevent death or preserve
life to the obligation to prevent suffering and maximise quality of the
increasingly precious time that remains.
Associated with this, it is essential for the public and the profession to
recognise that life has a natural end. For reasons perhaps connected with
general loss of commitment to the Christian faith and ethic, death has become a
taboo in our society. Rising patient expectations of wonder cure after wonder
cure add to the trend for many patients and their families to deny the reality
of imminent death.
In addition, many doctors overtreat dying patients or treat them
inappropriately. This may be partly for the general societal reasons given
above, for reasons of ‘defensive medicine’, or for more personal reasons. Facing
dying patients may raise uncomfortable suggestions of the doctor’s own
mortality, doctors may enjoy giving treatments, or perhaps they need more
patients in their trials. One of our members has written movingly of these
phenomena in the profession in a recent BMJ Personal View [2].
Whatever the explanations in general and in individual cases, we are convinced
that the medical profession has caused much of the present drive for euthanasia
amongst some in our society because of overtreatment.
It is not necessarily a failure for medicine when the time comes that we can no
longer cure; we then change the goals of medicine towards concentrating on
caring, a philosophy so well demonstrated by the palliative care movement. The
public needs ongoing education about the limitations of curative medicine.
Real – not rare
It is well said that ‘hard cases make bad law’, and whilst we recognise the
specific and difficult issue of withdrawing tube feeding in PVS patients, for
example, we must acknowledge that such cases are thankfully rare, and not allow
principles for decision-making to be driven by hard cases alone. As one of our
geriatrician members put it in his evidence to us, ‘most people who die are
old’. The principles for arriving at ethical answers in withdrawing and
withholding treatment situations must work out in practice with those much
larger patient groups with, for example, severe stroke.
Principled guidance – not prescriptive guidelines
We believe a key mistake in the generally excellent thinking in the consultation
document is that ‘guidelines’ will solve the problems. Two very recent BMJ
articles [3,4] have noted that doctors ‘are being flooded with guidelines’. Why
is this?
The answer probably lies in the current cultural situation of fear and blame. As
the consultation document says so well [5]: ‘how widespread is the impression
that when a person dies someone else must be responsible rather than simply
illness or human mortality being the cause of death’.
Perhaps the individual health professional thinks unconsciously: ‘If a patient
dies, someone is to blame. That someone mustn’t be me. I must cover myself. If I
have followed the guidelines they can’t pin anything on me.’ And in an
increasingly litigious society, employers will be anxious to prove that
everything was done by the book.
However, prescriptive rulebooks don’t apply well to medicine. It isn’t like
that. It is imprecise, and uncertain. Perhaps prescriptive guidelines of the ‘If
A, do B’ sort may work for a few well-specified surgical conditions, but they
are too rigid for ethical application in the vast majority of serious illnesses.
Clinical conditions wax and wane, and therapies are iterative, tried on an
empirical basis and perhaps withdrawn on grounds which are more often ‘clinical’
than ‘moral’. We call below for more objective research on treatment outcomes
and doubtless more knowledge will be gathered, but medicine will always remain
an art as much as a science.
We believe it would be a great mistake for the BMA or others to seek narrowly
prescriptive ethical guidelines. Each patient, each illness, each situation is
unique. The profession needs a set of principles, ethical guidance along the
lines we set out here, but not more guidelines of the type swamping the
profession.
Seniors at the bedside – not slaves to bureaucracy
Acknowledging that much of medicine is an art, clinical experience is a great
help. Difficult treatment decisions of the type being considered by the BMA
deserve the presence of the most clinically experienced doctors and nurses at
the bedside. Patients deserve the best. Yet inappropriate management culture
within the NHS may mean that those experienced senior professionals cannot give
the time they would like to helping make the best decisions at the bedside,
incidentally modelling best practice to colleagues in training.
We also commend multidisciplinary team approaches with shared information
inputs. Often decisions are taken by inexperienced juniors, as isolated
individuals, and not by experienced teams together. Perhaps there need to be
cultural changes and restructuring within some parts of the NHS so that patients
and paperwork both have the priorities they deserve.
Carers and clinicians – not committees and courts
We favour ethics decisions in healthcare being taken according to the
‘partnership of two experts’ – the health professionals who have their technical
areas of expertise and the patient who is an expert in two things: how he or she
feels and what he or she wants. Ideally, appropriate professional paternalism
and appropriate patient autonomy should be balanced in such a dialogue between
experts, to the benefit of both.
Decisions would ordinarily best be taken with the patient by carers and
clinicians. We do not favour the development of clinical ethics committees –
most of the ethics committees currently in existence are research ethics
committees and many new structures would need to be set up, with dubious
benefit. Most of the difficult treatment decisions under consideration are
relatively acute and committees would be too slow to respond.
Nor do we in general favour extending the involvement of the courts. Whilst we
believe decisions about withdrawal of tube feeding in PVS patients should still
go to court, and that there should be no areas in medical practice that the law
cannot examine, we do not favour further involvement of law in ethics
decision-making.
Research – not rhetoric
Whilst many aspects of caring for a patient with a final illness will always
remain to some extent intuitive, we advocate objective research into factors
determining treatment outcomes. For example, multivariate analysis of clinical
findings can assist in making predictions (eg APACHE scoring in the ITU). Advice
and decision-taking can thus be as evidence based as possible, and continuously
updated as new techniques make their impact. All the healthcare disciplines
should be committed to continuing education and the propagation of proven best
practice.
Many of these comments endorse sections of the consultation document, and we
make them all in the most constructive spirit. Individual decisions will never
be easy and we counsel against any approach that makes them seem so. However, a
reliable set of ethical boundaries such as we have tried to indicate within
these seven sets of specific comments should set helpful limits for the
difficult decisions in each unique case.
Answers to ‘Section 3 – Specific questions on which the BMA is seeking views’
1. Are there gaps which need filling in current UK ethical/legal guidance about
withdrawing or withholding life-prolonging treatments? Are there other legal and
ethical problems associated with withdrawing or withholding treatment which are
not mentioned in this paper?
As outlined above, we don’t believe there is currently the right kind of
guidance that takes adequate account of the natural history of the illnesses in
question or of their responses to therapy. Our own conceptual framework
indicates the way we view the legal and ethical issues.
2. Are international consensus documents such as the 1992 Appleton International
Consensus used in practice when decisions need to be made? If so, is review of
such guidelines necessary?
Few of us are aware of the Appleton Consensus. We doubt this approach is much
used by clinicians.
3. If guidance were to be produced, are there good reasons for distinguishing
between withdrawing and withholding treatment? If so, what are they?
In principle, and from a moral philosophy perspective, we agree with the BMA’s
position that there is no ethical difference between withdrawing treatment which
has become futile and not introducing that treatment at an earlier stage.
However, in practice the two may well feel very different to professional and
family carers and this must be taken into account at the bedside.
4. Are there good reasons for distinguishing between the treatment of adults and
children when drawing up guidance? If so, what are they?
We do not believe there are valid moral differences, though it seems to be a
(well-documented [6]) human instinct to try harder for children. On clinical
grounds, children in many situations will tend to do better than adults and
prognosis is even more difficult. For physiological but not moral reasons,
guidance about treatment of children may need to be distinguished from treatment
of adults in some clinical situations, since their resilience greatly exceeds
that of adults.
5. When patients lack the ability to make decisions for themselves, will not
recover sentience, and there is no clear indication of their wishes, should
withdrawing or withholding treatment be an issue to be decided by health
professionals and families alone?
We presume from its phrasing that this question addresses issues including the
withdrawal of tube feeding in PVS patients. Because to stop giving food and
fluid to a patient will inevitably and certainly cause their life to end, we
believe this decision, if it has to be considered, should continue to come
before the courts. Other treatment decisions which are more clearly ‘clinical’,
such as considering withholding antibiotics for life-threatening infection,
could ethically be taken by professionals and family together.
If so, should the decision-making process conform to strict criteria?
N/A
What kind of criteria would be appropriate?
N/A
Are the ones discussed in this paper sufficient?
N/A
6. Is there a foreseeable stage at which withdrawing nutrition and hydration
from patients who have irrevocably lost sentience would no longer need to go to
court?
No. See (5)
7. Is there a role for ethics committees to be involved in making decisions
about withdrawing or withholding treatment from patients who cannot express
their own views?
No (see our Specific Comments above). Most current committees are research
ethics ones. New structures of unproven benefit would be needed. Many such
decisions are too acute to await ‘the next meeting of the committee’.
8. Are there particularly problematic decisions of this type which should be
made only by the courts?
As stated, we believe decisions about withdrawing food and fluid from patients
in PVS should come to court. Whilst equally sincere doctors disagree about the
intention of withdrawing food and fluid from such patients, the fact that the
patient’s death is the inevitable consequence means this decision is different
from others.
If so, can clear parameters be defined to differentiate those cases sufficiently
problematic to require legal overview from those which could legitimately be
decided jointly by families and health professionals?
It is the certainty of death following the withdrawal of food and fluid from
patients not otherwise at the end of their natural lives which leads to this
ethical dilemma. For many professionals such action represents a breach of duty
of care, and is outside the ‘clinical’ decision to stop attempts at cure. There
would be particular pressures on nurses in such situations.
Would ambiguity about the terms of a patient’s refusal of treatment or about
competence to make valid refusal be the type of case where courts should be
involved?
Other examples of cases that should come to court might include major conflicts
between parties that cannot be resolved after ’second opinions’. However, we
repeat our conviction that there should be as little legal involvement in
medical decision-making as possible.
9. Does withdrawing or withholding artificial nutrition and hydration form a
separate category of decision from any other type of treatment which might be
withheld or withdrawn?
Yes.
If so, why?
The patient will inevitably die as a consequence of withdrawing food and fluids,
though the time of death may be unpredictable. Most health professionals feel
this is wrong – in the five years since the death of Antony Bland a conservative
estimate of 1-2,000 patients have gone into PVS and died of it. Only ten or so
cases have come before the courts in that period to request permission to
withdraw food and fluids. This suggests that whatever the difficult
philosophical issues, the intuitions of about 99% of family and professional
carers are that such an action is wrong.
Does society need to agree clear and strict criteria for withdrawing or
withholding artificial nutrition and hydration?
No.
If so, what kind of criteria?
N/A
Are the criteria and safeguards discussed in this paper (e.g. a period of
monitoring before a decision is made; an independent second medical opinion)
sufficient?
No.
10. When decisions about withdrawing or withholding have to be made, what are
the main factors which health professionals currently take into account when
discussing the matter with competent patients?
Likely prognosis is the main issue, but the integrity of the health professional
in question is important – he or she can so bias the presentation of information
as to obtain the decision they would prefer the patient made.
When deciding how to proceed for patients who cannot express an opinion?
Communicating difficult and uncertain issues to the family, with the highest
integrity.
11. How should “best interests” be defined for incapacitated people? What
criteria should be taken into account?
In general, we agree with the document’s discussion at 2.9.4. We would certainly
see capacity for relationships as valuable, but the absence of such capacity
where there appears no sentience does not reduce the intrinsic worth of that
person in God’s eyes. They are always of value because they remain made in the
image of God and He has a continuing relationship with them.
12. If a patient has left no indication of who should be consulted on his or her
behalf, how widely should views be sought from people caring for an
incapacitated adult?
Although there are no legal rights involved, it would certainly be good practice
to seek the views of those directly involved in care. However, caution is needed
because of the emotional reactions of loved ones, and their other interests,
which may or may not be ulterior motives.
Should the views of blood relatives take precedence over others?
No. The social work concept of ‘Most caring other’ is probably the best guide.
13. Is conflict common between different categories of health professionals or
between health professionals and relatives?
No, but it is not that unusual in most practices and departments.
Could conflict between health professionals be avoided or is it a positive spur
to well-rounded discussion?
‘Conflict’ in the sense of adversarial discussion can be constructive and should
not be avoided at all costs.
Are there good models for resolving disputes within and between health teams,
carers and relatives?
Prevention is better than cure. Good communication is important, and the time
pressures on understaffed and overworked teams are therefore regrettable. The
dialogue between the ‘partnership of two experts’ is based on mutual respect and
open communication, with the aim being to find consensus.
14. Is there still place for separate sets of professional guidance, attempting
to reflect the particular perspective of each profession or is it desirable that
all guidelines attempt to reflect a wide multi-disciplinary approach?
No. The different health disciplines should all be partners in the same
enterprise, and guidance must reflect commonly accepted principles.
15. Should there be more research into how decisions about withdrawing or
withholding treatment are made?
Yes, but rather than subjective research on the behaviour of health
professionals who may not know why they are doing what they are doing, we would
favour objective research on outcomes to allow the best clinical evidence base
possible. These decisions are often more ‘clinical’ ones than ‘ethical’ ones.
16. Do you consider that there is broad concern about the use of the “double
effect” argument concerning treatment at the end of life?
No. We hold the principle of intention as critical in this whole area and have
stated above that we believe intentional medical killing is always wrong. Once
explained properly, our experience is that health professionals and the public
readily understand and support the concept.
Incidentally, we find the phraseology ‘double effect’ unnecessary and unhelpful,
seeming in itself to suggest ‘double standards’, ie hypocrisy. We favour the
single word ‘intention’. The doctor’s intention is the relief of pain or
suffering even though this may very occasionally shorten by hours or days a life
which it is not possible to save.
Of course, there may in practice be hypocrisy, as doctors can pretend one
intention while having another, or there may be unconscious self deception about
motives. There are also issues about the ‘knowledge gap’ – we may intend one
thing but because of limited foresight achieve another, the ‘meaning well but
doing badly’ situation.
However, despite these issues, ‘intention’ is the most helpful concept we have
in this area. It has legal standing, and there are safeguards. A safeguard to
‘How do we know what the doctor’s intention actually was?’ would be to ensure
that major decisions were taken out in the open with the widest possible
discussion of foreseeable consequences and involving the patient as fully as
possible. In addition, where the administration of treatments is concerned,
there would be pharmacological safeguards in prescription records of drug dosage
and frequency.
If so, is the concern shared by health professionals and the public?
Such concern as there is partly reflects genuine confusion, which should be
amenable to explanation and education. However, confusion is also encouraged by
the euthanasia movement as a cynical campaign strategy. It is in their interests
to try and convince professionals and patients that ‘doctors are doing
euthanasia already with these big doses of powerful painkillers and what we need
now is a law to clarify the position’.
Would health professionals welcome more debate about the implications of “double
effect”?
Some need this helpful and very clear point explained more effectively.
17. Are there additions or amendments that should be made to the list of general
points concerning withholding or withdrawing treatment mentioned in section 2.11
of the discussion paper?
We would only emphasise that parts of this generally excellent summary seem to
take too simplistic a view of the likely natural history of clinical conditions
and of their responses to therapy. Patients can surprise us by getting better
against the odds.
18. Do you know of any existing local or national guidelines which the BMA
should take into account if it moves ahead to draw up new guidance?
No.
Do you know of any innovative ways of resolving problems connected with
withdrawal or withholding of treatment?
No, other than our approach which establishes the boundaries within which
individual decisions are taken. We do not believe that more prescriptive
guidelines will ever give the best results. In these dilemmas, a decision-making
framework is of more value than a formula.
Ten key concepts in summary:
1. Intentional killing is always unnecessary and wrong.
2. Life has a natural end and there is not necessarily anyone to blame when a
patient dies.
3. Doctors tend to overtreat towards the end of life, causing demand for
euthanasia.
4. Society needs to break its current taboo about facing death.
5. Considering the Christian faith is essential for a healthy exploration of the
concept of death.
6. When accepting that cure is either not possible or not sought by the patient,
care continues.
7. The most senior clinicians should be central figures in these decisions.
8. Many of the difficult decisions are more ‘clinical’ than ‘ethical’.
9. Medicine is a biological science with uncertain outcomes but research must
improve its evidence base.
10. Principles for guidance which define ethical boundaries are more helpful
than prescriptive guidelines.
References
1. Submission from the Christian Medical Fellowship to the House of Lords Select
Committee on Medical Ethics. 1993
2. Personal view. Doctors fighting, fleeing or facing up to death. Goodall J.
British Medical Journal, 1 August 1998; 317: 355-6
3. Editorial. Where’s the chief knowledge officer? Muir Gray J A. British
Medical Journal, 26 September 1998; 317: 832
4. Guidelines in general practice: the new Tower of Babel? Hibble A, Kanka D,
Pencheon D, Pooles F. British Medical Journal, 26 September 1998; 317: 862-3
5. Withdrawing and Withholding Treatment: a consultation paper from the BMA’s
Medical Ethics Committee. 1998. p5
6. Ibid. p14
Christian Medical Fellowship
October 1998
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