Joint Ethico-Medical Committee
The Catholic Union of
Guild of Catholic Doctors
Submission to the GMC
on Withholding and Withdrawing Life-prolonging
Good Practice in Decision-making
The Joint Ethico-Medical Committee is composed of members drawn from the two parent bodies, the Catholic Union of Great Britain and the Guild of Catholic Doctors. The Catholic Union is an organisation of the Catholic Laity which is not affiliated to the hierarchy and which represents the Catholic viewpoint, where relevant, in Parliamentary and legislative matters. The Guild of Catholic Doctors represents Catholic Medical Practitioners of the United Kingdom.
We welcome this opportunity to offer our views on this important topic
Q1. Is the introduction helpful background? (Paras 1-4)
The introduction clearly lays out some of the issues and difficulties
involved in making decisions about withholding or withdrawing treatment.
We are encouraged to see the unequivocal statement that ‟euthanasia and assisted suicide are both contrary to the ethics of medicine and unlawful". However we would to expand your description of euthanasia - (‟......any medical intervention where the doctor's primary intention is to end the patient's life...." .) The Catholic understanding of euthanasia has always been - "an act or omission which of itself and by intent ends life for merciful reasons." This definition of euthanasia, with specific reference to omission, is also the one adopted by the BMA in its ‛debating pack', in preparation for its consensus conference on physician-assisted suicide (December 1999, page I3); it described euthanasia as ‟.. a deliberate act or omission whose primary intention is to end another's life." The concept of omission in euthanasia does require further explanation. Catholic thinking does not hold that life must be prolonged by all means possible, but there are circumstances where withdrawing and withholding treatment could be regarded as immoral, and we address these later in this document. It is therefore very important that any definitive guidance from the General Medical Council takes cognisance of the broader definition of euthanasia, which includes omission, as it will be held by a significant number of practising doctors.
Q2. Are there issues you consider important which are not addressed in the guidance?
An important omission has been the matter of conscience. This
document deals with matters surrounding the end of life when judgement on what is
best can be difficult. There will be times where an individual believes that a course
of action being taken is immoral. In these circumstances the doctor must be allowed
to exercise their right of conscientious objection, without detriment to their standing
within the profession and without the threat of disciplinary action by the GMC.
This relates particularly to the issue of withdrawal of hydration and nutrition.
It is our position that hydration and nutrition should never been withdrawn as a
means of deliberately bringing about the death of the patient. We hold that the
practice of withdrawing hydration followed by �terminal sedation� to cause the death
of a patient is totally unacceptable. No nurse or carer must ever be forced to participate
in such a process, especially if they had expressed a conscientious objection to
it. Doctors and nurses must not be placed in a situation of providing a standard
of care which is indistinguishable from neglect. Where a doctor believes that an
action, or withdrawal of treatment, is morally wrong, he may not in conscience ask
someone else to perform that action/omission which he himself believes to be wrong.
However, it would be right for that person to make their position clear, and then
the patient, relative or carer, could seek other opinions. The onus of seeking other
opinions should not lie with the individual expressing a conscientious objection.
At several points in the document the GMC recommends recourse to the courts for a decision. Lord Justice Ward, in his summary relating to the Manchester conjoined twins judgement, stated in response to the Archbishop of Westminster's submission on the ethical issues involved - ‟This is not a court of morals but a court of law...." Judges decide what is legal or illegal, which may be different from deciding what is morally right or wrong. As an example, the Bland judgement is one which we have a consistently criticised as being morally wrong, as the withdrawal of nutrition and hydration from Tony Bland was made in order to bring about his death, and was therefore euthanasia by omission. See footnote for further explanation. We would also argue that in the Bland case tube feeding was declared medical treatment only in order to allow its withdrawal.
Q3. Is the wording of this section clear and helpful, bearing in mind the more detailed advice in the rest of the document? (Guiding Principles - para 5)
The use of the general and poorly defined
term ‟best interests" raises serious problems. The medical profession
can legitimately claim to have expertise in making value judgments on medical and
clinical matters. On what grounds can doctors claim expertise in judging non-clinical
matters? It is important to separate the clinical judgement on what is best in the
medical sense, from what the patient wishes and desires. Otherwise whatever the
patient wants becomes �their best interest�. ‛Clinical Best Interests' are
best defined as:- ‛The preservation of life, the prevention of disability
and the relief of pain and distress.' Although patients will legitimately include
other values, beliefs and priorities in making their decisions on what treatments
to accept or reject, when it comes to dealing with the incompetent patient the doctor
should restrict their judgements to the assessment of medical factors such as the
clinical benefits, and the risks and burdens associated with any proposed treatment.
We fully support the statements that life has a natural end and that doctors should not strive pointlessly to prolong the dying process.
Q4. Is the wording sufficiently clear, bearing in mind the guidance in the rest of document? (Patients who can and cannot decide for themselves - paras 6-7)
There are potentially serious difficulties in accepting and interpreting ‛advance
statements' and ‛living wills'. In the same way that informed consent is required
to accept treatment, so ethically it is right to expect similar informed consent
for a refusal of treatment. We accept the principles enshrined in the judgment in
the case of the Broadmoor patient C [In re C  1 WLR 290-296] where C's refusal
of an amputation was made whilst he was competent and in the full knowledge of his
condition, of his circumstances and of the consequences of his decision. We accept
that such refusal would be morally binding on the doctor should the patient subsequently
become incompetent because the patient had precisely defined the circumstances to
which his decision applied. We also accept the very specific refusals of treatment,
usually on religious grounds, such as the refusal of blood transfusions by Jehovah
The difficulties lie with general ‛living wills' made by patients while they are healthy and indicating refusal of a range of (and even all) treatments. When making such a �living will� no one can know in what personal circumstances it could be implemented or what facilities for treatment would then be available. There is an important distinction to be made between the refusal of consent made close to a proposed operation, at a time of full capacity with the patient suffering from the condition and with an understanding of the consequences of that refusal, and a �living will� made some time ago, expressed either in general terms or refusing specific treatments for conditions from which the patient was not then suffering.
We support the sentiments expressed by Sir Douglas Black, writing in a recent edition of the BMJ, who has been diagnosed with a pancreatic growth but writes that he has not written a living will because "The care of terminal illness is taxing enough; and they can certainly not be simplified by being constrained by a set of legally enforceable requirements." We also support his solution to the issue "Find a good doctor and trust him or her. ...... good doctors can be found ..... and greatly outnumber the ignorant, careless and maladjusted....."
The GMC should strongly oppose the imposition of conditions which would restrict a doctor�s ability to provide ‛best medical practice'. There is no legislation on advance directives and it would be wrong to instruct doctors to respect �valid� advance directives without defining the term �valid� and without giving explicit instructions on how doctors are to ascertain the validity of �living wills / advance directives�.
To give a specific example. In the USA a woman had an advance directive refusing tube feeding. She had a stroke and was unable to swallow or speak properly. Because of the advance directive the doctors were unable to insert a nasogastric tube. She was conscious and was indicating to the nursing staff that she wanted food / fluids, but a court ruled that the �signs� she was making were insufficient evidence that she wished to overturn her advance directive.
The draft guidelines produce a significant discrepancy between the quality of the legally required consent for treatment and that proposed for the acceptance of advance refusals of treatment. The standard of refusal of treatment was defined by the Appeal Court (St George�s Healthcare NHS Trust v S  3 A11 ER 673) which stated �For their own protection hospital authorities should seek unequivocal assurances from the patient (to be recorded in writing) that the refusal represents an informed decision; that is that she understands the nature of and the reasons for the proposed treatment, and the risks and likely prognosis involved in the decision to refuse or accept it. If the patient is unwilling to sign a written indication of this refusal, this too should be noted in writing. Such a written indication is merely a record for evidential purposes.� The requirement for such strict documentation of a refusal of treatment stands in stark contrast to the advice about accepting refusals in living wills.
Q5. In your experience, how effective is independent clinical and/or ethical review in helping to reach a consensus in such cases? (Differences of view about best interests - Para 9)
Doctors are used to seeking a second medical opinions, but there is not the same experience in seeking an ‟ethical review". Furthermore, giving a second medical opinion or advice is very different from taking and accepting the responsibility for decisions made. As explained above in question one, we do not think it is right that a person who has conscientious objection should be expected to find someone else to do the very thing they cannot do and then step aside.
Q6. What other steps might be taken to try to resolve such disagreements? (Para 9)
We have already expressed our difficulties with the use of the
term ‛best interests'. In cases of disagreement among relatives and carers
which are based around non-clinical / non-medical matters, the ‟clinical best
interests" of the patient should be paramount. Our members report that relatives
can sometimes demand futile treatment because they wish to preserve the life of
their loved ones at all costs. At the other extreme, we have met relatives who were
urging withdrawal of treatment, and it became obvious that there was a financial
incentive for this, such as that they did not wish their relatives to survive because
of the cost of nursing home care. It has been suggested that financial interest
is a factor in up to 1 in 20 cases where relatives request withdrawal of treatment.
There is a small body of research evidence which shows that relatives and carers are not necessarily good at predicting what a patient would chose. One study concluded �The poor agreement between patients and surrogates suggests that substituted judgment is not an accurate tool to make end of life decisions.�
Q7. Is the explanation of the problem and the advice given clear enough to assist a reader with these concerns? (Concerns about starting then stopping treatment - Para 10)
We accept the proposal that in cases where it is not clear whether
a treatment will be beneficial, "...this should not
be used as a reason for failing to initiate treatment which may be of some benefit
to the patient." In such circumstances we suggest that the medical team should
set a realistic time scale within which the benefits of the treatment could reasonably
be expected to be manifest and to decide, at that early stage, to withdraw treatment
if the expected benefits had not been realised.
The crucial difficulty lies around what is accepted as ‟medical treatment" in particular relating to ‟artificial nutrition and hydration". There is a substantial body of opinion which does NOT accept that nutrition and hydration are ‛medical treatment.' For clarity we suggest that the issue is considered in terms of the complexity of the different methods - e.g. Nasogastric tube feeding; PEG insertion and tube feeding; Simple subcutaneous fluids; Simple intravenous fluids; Total intravenous alimentation.
We attach, as an appendix, an article in a recent Catholic Medical Quarterly written by two of our members which addresses some aspects of this issue. In summary, the insertion of a nasogastric or percutaneous gastrostomy tube can be considered as medical treatment, but once tube feeding is established the administration of nutrition and hydration via that tube is basic nursing care. Examination of the evidence relating to thirst shows that the hypothalamus is important and that �Whilst other parts of the brain are required for the behavioural patterns that occur in response to thirst, sensation of thirst can be demonstrated to persists despite a very severe damage to other parts of the brain, for example decortication. In the absence of independent demonstration of hypothalamic damage in the location of the thirst centre, any assumption that the patient with severe brain damage, from any cause, is adipsic cannot be justified.�
The withdrawal of hydration is an important part of the campaign for euthanasia. As far back as 1984 it was said "If we can get people to accept the removal of all treatment and care - especially the removal of food and fluids - they will see what a painful way this is to die and then, in the patient's best interest, they will accept the lethal injection."
Q8. Is the advice clear enough? (Non-discrimination - Para 11)
Yes. We fully support the ideal that all patients should be treated on the basis of clinical need, and decisions made on their ‟clinical best interests". It would of course be legitimate to consider the patient's ability to cope with a treatment (eg. Post transplantation immunosuppression) in considering whether to offer a particular type of treatment.
Q9. As described here, do you consider the concept of 'A good death' to be helpful? (Ensuring a good death - Para 12)
Yes. We fully support the statement that a good death is �...where
there is privacy, dignity, good quality care in comfortable surroundings, adequate
pain relief and appropriate support.�
However we would also point out the word Euthanasia [derived for Greek - Eu + thanatos] is variably defined as �good death� or �quiet and easy death�. In the current climate where active campaigns are in place advocating euthanasia, the use of the phrase �good death� could be misrepresented and/or used inappropriately. Rather than concentrating on the quality of a person�s death, reference should be made to ensuring that medical practice enhances the terminal stages of a patient�s life. Current good palliative care has allowed many patients with advanced malignant disease to lead fruitful lives with a rapid deterioration and swift death at the end. The emphasis should be on life rather than the process of death.
Q10. Is it helpful to set out the legal background in this way? Are you aware of any relevant recent legal development which is not reflected here? (Legal principles - Para 14-17)
The Bolam test is the standard used in medical negligence cases and we do not feel it is appropriate to be used to judge whether it is proper to withdraw or withhold treatment.
Q11. Is the guidance helpful as it stands? Would a specific statement about junior doctors add any value? (Clinical responsibility for the decision - Para 19)
Yes. It is right that the senior clinician takes responsibility for any decisions. It may be helpful to state specifically that, in cases of disagreement, the junior doctor should not be required to act against his/her conscience.
Q12. Is this helpful? (Diagnosis and prognosis - Para 20)
Q13. Is this helpful? Can you identify any practical problems in particular settings for obtaining second opinions? (Options for treatment - Paras 21-23)
Yes. There should not be significant problems in seeking second opinions, as long as telephone discussion about a patient�s problem is regarded acceptable.
Q14. Is this helpful? Is the wording clear enough to be applied sensibly in emergencies? (Emergencies - Para 24)
We accept the paragraph with the exception of the sentence which concludes �...you should respect the terms of any valid advance refusal which you know about or which is drawn to your attention.� In answer to question 4 we have already identified our misgivings about living wills. In a life threatening emergency situation, particularly if it is the first occasion that the clinical team has seen the patient, it is entirely inappropriate to expect the treating clinician to be able to make a judgment on the validity of any advanced refusal. A doctor should be supported in giving the best available medical care appropriate to the emergency, without the fear of legal or disciplinary consequences.
Q15. Is this guidance sufficient to ensure that the right issues are raised with patients in an appropriate way? (Seeking the patient's views - Paras 25-28)
Q16. Is the advice in this section helpful in clarifying responsibilities? (Patients who cannot decide for themselves; Assessing capacity to decide - Paras 29-32)
We suggest that if there is doubt as to a patient's capacity to decide then, whilst that capacity is being determined, the patient is treated in accordance with their clinical best interests.
Q17. Should the additional information available in other publications about criteria for assessing best interests (signposted in the footnotes) be included in the guidance as an Appendix? (Reaching a consensus - Para 33)
Yes. Although it may not be necessary to reproduce the entire publications, the essential points should be included as part of the GMC document.
Q18. Are you aware of any existing local arrangements for accessing clinical and/or ethical review? Can you identify any practical difficulties that might arise? (Disagreements about best interests - Para 34)
No - to both parts of the question.
Q19. Will the advice be helpful in achieving good communication? (Communicating decisions - Para 35)
Good communications among and between the medical teams, is obviously essential. It may be prudent to emphasise that a decision to withhold a specific treatment does not mean that other forms of care or treatment are also to be omitted. It should also be reiterated that ‛DNAR' orders refer to cardiopulmonary resuscitation, and even when a DNAR decision has been agreed other forms of resuscitation (eg. fluid replacement) may still be totally appropriate.
Q20. Is the advice helpful? Can you identify any practical problems in particular settings? (Recording decisions - Para 36)
Q21. Is this advice helpful? (Reviewing decisions - Para 37)
Q22. Given the particular complexities about children and consent, would it be more helpful to bring all the advice on children together as a distinct part of the guidance? (Children - para 39)
In paediatrics the importance of consensus agreement with parents is critical, because of the close and caring bond between them and their children. It is difficult to treat children when there is a divergent view between the clinicians and the parents.
Q23. Is this advice helpful? Can you identify any practical problems in following this guidance? (Appendix B - Cardiopulmonary resuscitation)
The advice is helpful in part only.
It is generally accepted that cardio-pulmonary resuscitation (CPR) is often successful when the cardiac arrest is due to a sudden cardiac event. When cardiac arrest occurs in the context of progressive physiological deterioration of the patient, then attempts at resuscitation are rarely successful, and if successful then often only for short period. We fully support the statement in paragraph 1 of appendix B which states about CPR:- �When used inappropriately it may prolong the dying process in a degrading and undignified manner.� This is graphically described in a filler in the British Medical Journal.
The implementation of professional guidance on CPR, is leading to a common hospital practice that unless a �Do Not Attempt Resuscitation� (DNAR) decision has been agreed with the patient and / or their carers, it is given in all cases of cardiac standstill. This is illogical as in other modalities of treatment the patient needs to consent to treatment, and yet in the case of CPR it is given unless the patient refuses!
In cases where death is imminent, eg. the patient has terminal malignancy, end stage cardiac or respiratory disease, we agree that CPR is inappropriate, but suggest that discussion with the patient or their relatives may be unnecessarily distressing and even cruel. Many relatives harbour prolonged guilt after agreeing to a DNAR order, feeling that in part they have brought about the death of their loved one. Where CPR is felt to be clinically futile we would argue that there is no need to initiate discussion of the issue with the patient or relatives. To give an analogy, physicians are unlikely to discuss artificial ventilation with a patient in end stage respiratory failure secondary to chronic obstructive airways disease. In such circumstances ventilation would be futile medical treatment and it would be insensitive to tell the patient about ventilation, only to then inform them that it would be inappropriate in their particular case. We suggest that there are many situations where CPR is also futile medical treatment and that it is inappropriate to raise the issue with the patient or their relatives in order to seek their agreement NOT to offer CPR. Naturally if the patient or relatives raise the issue then discussion is appropriate.
Q24. Is the glossary helpful? Should any other words or phrases be explained here?
Artificial nutrition and hydration: Although a distinction
can be drawn between �artificial� and �ordinary� means of providing food and fluids,
the implication is that �artificial� means are medical treatment which can be legitimately
withdrawn. We fully accept that the insertion of a nasogastric or gastrostomy tube
should be regarded as medical treatment, but once in place the provision of food
and fluids through that tube should be regarded as �basic care�.
Basic care: That which is normally required in both health and disease to sustain life and promote normal functioning. Treatment is disease specific, whilst care requirements are common to healthy and sick and include things such as provision of food and fluids, warmth, shelter, alleviation of pain and distress, companionship and psychological support. There should be a presumption in favour of providing food and fluids to a non-dying patient by whatever means are appropriate for that patient in their particular circumstances.
Best interests: In a medical context, the best interests of the patient are a combination of the medical needs of the patient (clinical best interests) and non-medical factors relevant to the circumstances of the particular patient.
Clinical best interests: This supports a presumption in favour of preserving life, restoring health and alleviating suffering. Where treatment cannot be curative, palliative care should aim to maximise physiological functions according to the circumstances. Decisions regarding treatment at the end of life are amongst the most difficult and sensitive that doctors are called upon to make. Such end of life decisions must be firmly based upon the medical needs of the patient. A clinical opinion regarding what is in the medical interest of the patient should be carefully distinguished from what the patient may decide to accept or refuse. A competent patient may refuse what is in their clinical best interests.
Euthanasia: An act or omission which of itself and by intent ends life for merciful reasons.
Dr Michael Jarmulowicz. FRCPath., MB.BS., BSc
Chairman of the Joint Ethico-Medical Committee of
the Catholic Union of Great Britain and the
Guild of Catholic Doctors
29 July 2001