A Response to the British Medical Association
consultation paper
Withdrawing and Witholding Treatment:
A Consultation paper
from the
BMA's Medical Ethics Committee
by the Guild of Catholic Doctors
with
the assistance of the Joint Ethico-Medical Committee
(Catholic
Union / Guild of Catholic Doctors)
This paper is drawn up by the Catholic Union of Great Britain and the Guild of Catholic Doctors as a response to the above discussion document. The Catholic Union represents Catholics in parliamentary and public life and the Guild represents Catholic doctors.
We are glad to be invited to participate in the discussion and found much to welcome and endorse in the consultation document. We took part in a similar response to the document "Withholding and Withdrawing of Life Saving Treatment" of the Royal College of Paediatrics and Child Health in 1989 and a copy of our response to that document is attached to this paper.
In order to clarify our response to the specific questions posed, we would like to state some of the principles from which we have proceeded. First it is not part of Catholic teaching that life must be prolonged at all cost. Indeed Catholic faith is that the ending of life can open the way to a life with God. (1 cf "A Christian Advance Declaration for the management of serious illness", Guild Booklet "Advance Directives or Living Wills" 1997).
We uphold the value of all human life including the disabled or incapacitated and we hold that there is an essential value and dignity to the life of each and every individual which cannot be erased. Treatment should be directed towards the relief of symptoms, sustaining of life or prevention of incapacity where the benefits outweigh the burdens and are proportionate to the desired outcome. The direct omission of basic care, such as withdrawing nutrition and hydration with the "aim" "object" and "intention" of bringing life to an end is not legitimate. ( cf statement from Catholic Bishops re the Bland judgement '93).
A definition of euthanasia which does not take into account the possibility of its achievement by omission is incomplete.
'Euthanasia may be defined as an act or omission which directly and by intention ends life for merciful reasons'
Decisions to withdraw or withhold treatment are amongst the most difficult in medicine. Therefore before addressing the specific questions upon which the BMA are seeking views, we would note that care is normally given by a team and that it is essential that all members of the team are comfortable with the decisions that are made since some members of the team will share our ethical outlook and it is important to recognise their participation in decision making. The team will include not only doctors but also nurses and carers. Many of the patients will also come from family backgrounds where religious belief is part of the fabric of their life. For these reasons, we are grateful that the BMA do not take a totally secular view but seek to understand religion in our plural society.
Responses to The Specific Questions Raised in BMA Consultation Paper
Q1 ...... Are there other legal and ethical problems associated with withdrawing or withholding treatment which are not mentioned in this paper?
We feel there will be obvious managerial and funding implications which will have a bearing on these decisions. We think the BMA should emphasise its opposition to the withholding or withdrawal of life supporting on the grounds of scarcity of resources.
Q2. Are international consensus documents such as the 1992 Appleton International Consensus used in practice when decisions need to be made?
..........
Few international consensus documents are used in bedside decisions and in particular we are not persuaded that the Appleton International Consensus was arrived at in an appropriate way. Indeed from the final document "consensus" was removed from the title. A substantial number of non American contributors rejected euthanasia. (cf Shimon Glick - The Lancet, Vol 340, Dec. 2.92).
Q3. If guidance were to be produced, are there good reasons for distinguishing between withdrawing and withholding treatment?
We believe there is a clear distinction between withdrawing and withholding treatment. A decision ab initio is different in kind from a decision made by review in both medicine and law. May we refer to the article by Howard and Treloar attached to the response. ("Tube feeding: Medical Treatment or Basic Care?" Adrian Treloar and Phillip Howard CMQ Aug. '98 5-7).
Q4. Are there reasons for distinguishing between treatment of adults and children when drawing up guidance? If so, what are they?
We would like to draw the BMAs attention to the distinction between ordinary (or commonplace/everyday) treatment and extra ordinary treatment and to make the distinction between proportionate and disproportionate treatment in its guidelines. We welcome the BMA statement "The basic ethical obligations are owed to all patients. Babies, children and elderly people, competent and mentally incapacitated patients have the same right to quality and appropriate care. Health professionals must act in the interests of the patient".
The distinction that must be drawn between the treatment of adults and children does not so much relate to the treatment itself as to the attitude of the members of the health care team. When dealing with children they must always be aware of the long term consequences of their actions and decisions.
Q5. When patients lack the ability to make decisions for themselves .......... should withdrawing or withholding treatment be an issue to be decided by health professionals and families alone?
We do not share the view expressed (p. 20, 2.9.97)) that when human life lacks the capacity of sentience it may be treated with less respect. When the decision involves not prolonging dying it can be made by professionals in consultation with the family on the basis of burden or futility. If it is a decision about withdrawing nutrition and hydration, with which we disagree, such a grave issue should be decided by a Court.
With regard to advance decision making we do not believe that advance directives other than those based on an informed understanding and anticipation of the circumstance which actually arise are likely to be upheld in common law. The patient must have at least the capacity required to make a testamentary will and despite contrary opinions, there is no case law in the UK relating to a written advance directive. When members of the Law Commission were present at the launch of the BMA document on advance statements and were directly challenged by lawyers from the floor they were unable to provide any instances of legal precedent. Indeed, if the matter was already resolved by case law, why would there be proposed statute?
We believe that the effect of the Bland judgement however was to change the homicide law, altering the common law requirement for those who have care of another to provide basic nourishment, and that it produced a distortion of "medical treatment" and "best interests". What is being decided is that an individual thought not to have best interests or quality of life is to be caused to die. It is a medicalisation of a decision which is of profound significance to society. It does not take into account a persons non medical interests such as their personal interests, religious belief, or family interests involving the emotions and wishes of those closest to the patient or societal interests which take account of the effect of this decision on society or other completely helpless patients.
Q6. 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. The withdrawal of hydration and nutrition are intrinsically wrong. In the event of decisions of this nature they are so grave and have such effect on society at large that they can only be decided in court. We would deprecate any attempt to have such decision making streamlined or carried out by appointees of the department of health or other officials.
Q7. 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. Ethics committees may have a role in advising or supporting clinicians, but cannot take responsibility for clinical decision making.
The Courts would certainly have to be involved in disputes about interpretation of advance refusals or assessments of competence if there were any doubt.
Q8. Are there particular problematic decisions of this type which should be made only by the courts? ........ 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?
We think that many advance directives for example that of the Voluntary Euthanasia Society which forbids "any measure to sustain or prolong life" under circumstances which are ill defined and which objectively could be seen to extend to a huge numbers of persons suffering from dementia, stroke, and chronic ill health; if adhered to, would be profoundly damaging to good medical practise. We think it likely that doctors obeying such a document could be at hazard if the patient were to survive in a damaged state and subsequently claims that the advance directive had been improperly interpreted. This illustrates one of our principle concerns about advance directives, namely their interpretation. Some clinicians know that some of the most disabled patients are those from whom treatment was withdrawn but who survived. There is ample evidence that in this situation the medical team are not protected against medico legal claims for negligence. It seems to us that the actual application of the legal instrument (the document) will take precedent over real clinical considerations in the event of advance directives being made legally binding. The effects of this on the morale of health care workers we consider would be extremely damaging. Doctors would he compelled to treat patients inadequately, and those who treated them correctly might even he criminalised. We believe that these are amongst the reasons why the previous government did not proceed with an earlier Green Paper and Draft Bill on Mental Incapacity.
Q9. 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. We agree with the House of Lords Select Committee on medical ethics that there is a distinction between nutrition and hydration and medical treatment in
Summary of Conclusions No. 285 "The development of the acceptance of an idea that, in certain circumstances, some treatments may be inappropriate and need not be given, should make it unnecessary in future to consider the withdrawal of nutrition and hydration, except where its administration is in itself evidently burdensome to the patient".
There is anecdotal evidence that patients have overheard and recalled discussions about withdrawing their fluid and nutrition and also circumstances in which this action was proposed for patients who eventually were found to be in the ‘locked in’ condition. It is known that the diagnosis of PVS is often mistaken and in a recent study of cases referred to a centre of excellence, as many as 40% of those who was said to be in PVS were found to have been incorrectly diagnosed. The danger to other vulnerable and helpless people from this alteration in the law of homicide strongly suggests that each and every case must be decided in court where all the evidence can be considered.
Q10. When decisions about withdrawing or withholding have to be made, what are the factors which health professionals currently take into account when discussing the matter with competent patients?
We would say that one of the main reasons why treatment can be withdrawn is that it is incapable of bringing about the beneficial effect for which it was given, or that in order to achieve its effect it places an unacceptable or disproportionate burden on the patient. We would consider that the patient is the prime object and responsibility of the doctors duty of care although the interests of the family must also be taken into account. We would be in difficulty if treatment were withdrawn for solely utilitarian reasons, for example so that resources may be reallocated. In historical and political terms, utilitarianism has been associated with the loss of individual rights for a putative advantage to the wider community. In health care terms, almost anything could be justified on the basis of this. In our opinion every individual in a developed country such as our own, is entitled to receive at least basic care.
Q11. How should "best interests" be defined for incapacitated people? What criteria should be taken into account?
We think that the best interests of a patient is properly concerned with the restoration of health, prevention of disability or relief of symptoms. In the case of ReF an incompetent patient, 'the best interests sought to save their life or to ensure improvement or to prevent deterioration in their physical or mental health". We consider that the "Bolam" principle is inappropriate in determining best interests. (cf appended memorandum of G. Wright QC) A settled body of medical opinion does have relevance to questions of negligence but it is stretching the "Bolam" principle beyond anything it can sustain to use a settled body of medical opinion as sufficient to determine a matter of life and death which is properly the realm of law. We note in passing that the Bolam principle has itself been modified as a result of two recent cases in civil law.
Q12. If 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? Should the views of blood relatives take precedence over others?
Yes. The question of consulting relatives is important from the point of view of achieving a wide degree of acceptance of any decision made. In this respect it is possible that the most significant person in a patients life may not be a blood relative and it must be remembered however that no person can decide on the behalf of another but may be able to convey their wishes or beliefs if they are known. Here again we are aware of the fact that recent research had shown that substitute decision makers are often poor interpreters of a patient's actual wishes.
Q13. Is conflict common between different categories of health professionals or between health professionals and relatives? ......... Are there good models for resolving disputes within and between health teams, carers and relatives?
It is extremely important we feel that health professionals and relatives should be able to enter into discussions. It is evident from complaints in press reports etc. that disputes still arise between health care teams, carers and relatives. Sometimes this goes as far as appeals to coroners and complaints to health authorities and we understand that a number of police investigations are currently taking place. (At the time of writing there are more than 80 cases under investigation).
We urge the BMA to consider the question of hydration and feeding in the elderly, infirm and dying seriously and offer advise. We enclose a protocol of our own for consideration. (Dr. Treloar - Guys, Kings, Thomas' group).
Q14. 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?
Yes. It is desirable that any guidelines devised, take into account the positions of all the professionals involved. That is to say the doctors, nurses and other carers. Multi-disciplinary teams are the norm and it has to be recognised that there could be a conflict of interest between the team caring for the patient and health managers (cf motion 44 BMA ARM 1997). We endorse the proposal of Millard and Jeffrey at 2.8.
Q15. Should there be more research into how decisions about withdrawing or withholding treatment are made?
Yes. There is clearly a need for more understanding of the effects of withdrawing or withholding treatment.
Q16. Do you consider that there is broad concern about the use of the "double effect" argument concerning treatment at the end of life? ............
Yes. We strongly support your statement on double effect which commences,
"In the context of terminal illness it is widely accepted that the alleviation of suffering and distress must become the primary goal of medicine. For the principle of double effect to have integrity, the issue of intent is crucial. The risk of the patient experiencing pain and distress must constantly be balanced against the risk of excessive sedation and considerable skills have been developed in the specially of palliative medicine".
Q17. 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 accept points at 2.11 from 1 to 5 inclusive, but are concerned about 1.5 patient refusal, because we think it unlikely in many cases that the patient is sufficiently informed of the consequences of refusal or could have decided in advance what their decision would be. We see a distinction between an advance refusal made during the known course of an actual disease, and one entered into perhaps many years before when the patient was still in good health. There are numerous example of patients who have changed their mind when confronted with the reality of disease or disability.
5.2 we accept, 5.3 we are troubled by the phrase 'quality of life" because it is likely to be subjective and determined in a fairly arbitrary way by persons who are essentially bystanders. There is ample evidence that children who have never been fully healthy can be content and happy with abilities and capacities which others might regard as unacceptable. (cf Response to RCPCH document on withdrawal of treatment 1997). There is also plenty of experience of patients who once felt that they would not have accepted limitations, but if they befall then they were glad to continue living.
We do of course accept that withdrawal of treatment does not imply abandonment of the patient and have an extremely positive view of palliative care.
6. We accept that when death is inevitable due to irreversible illness that this is a valid reason for withdrawing treatment and we agree that although a physiological improvement maybe achieved but does not offer any real benefit that it may be withdrawn. We accept your para 9 that treatment such as cardio-pulmonary resuscitation and provision of antibiotics should be decided by the health care team in patients if they are not competent. (cf D.N.R. policy of WRI NHS Trust).
10 is to state the obvious but again we would hold that in a developed society, nobody should die from lack of basic care.
Q18. Do you know if any existing local or national guidelines which the BMA should take into account if it moves ahead to draw up new guidance?
Yes. (cf over response to the RCPCH Document and 2,4,5,6,8, appended documents).
CONCLUSION
We would like to thank the BMA for its invitation to participate in this extremely important exercise. Although we have found it necessary to draw attention to some points which we consider could be of hazard to good patient care and which might alter in a dangerous way society's very proper concern for the preservation of life and health, in practise we believe that most Catholic doctors and nurses who make up approximately 10% of the profession, would be capable of coming to a consensus with their colleagues in particular clinical situations. We have thought it right to highlight those matters which are likely to lead to differences of opinion. We would remind that British Medical Association that it has always supported the conscientious rights of doctors and nurses not to undertake treatment which is contrary to their conscience. We are certain that the same principle applies to all our colleagues whether or not they draw on a religious insight.
LIST OF SUPPORTING DOCUMENTS
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The Conference of Bishops Response to the Law Lords Judgement in the Case of Airedale NHS Hospital Trust v. Bland.
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Hospital of St. John and St. Elizabeth Policy on Advance Directives (Living Wills).
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Response to the Royal College of Paediaticians and Child Health "Withholding or Withdrawing Life Saving Treatment in Children' J.E.M.C. C.M.Q. Feb. '98.
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Do Not Resuscitate (DNR) Policy for Paediatrics - Worcester Royal Infirmary NHS Trust 1995.
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Protocol for Fluid and Nutritional Supplementation for very Frail Elderly Patients - Adrian Treloar Psycho-geriatrician Guys/Thomas NHS Trust 1998.
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Memorandum on Bland Judgement by Gerard Wright Q.C.
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A Procedure for Responding to Non-compliance with prescribed medication - Elizabeth Fitzroy Homes - March 1998
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Advance Directives or Living Wills. - St. Pauls Publications, London 1998.
Signed by:
The Baroness Masham of Ilton, President, The Catholic Union of Great Britain.
Mr. Patrick Coyle, KCSG., FRCS., Master Guild of Catholic Doctors
Dr. A P Cole, J.P., FRCP., Chairman, Joint Ethico Medical Committee
23rd September 1998