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Submission from CMF to the GMC on Withholding and Withdrawing Life-Prolonging Treatments: Good Medical Practice in Decision-Making

Published: 1st July 2001

Introduction

Christian Medical Fellowship is interdenominational and has as members over 5,000 doctors throughout the United Kingdom and Ireland 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 more than 90 other countries.

We regularly make submissions on a whole range of ethical matters to Governmental and other bodies, and welcome this opportunity to comment on 'Withholding and Withdrawing Life-Prolonging Treatments: Good Practice in Decision-making'. We are encouraged that the Council is making a special issue of this topic. This Submission has been produced after discussion with members of our Medical Study Group.

We have made other submissions to other official bodies on this and related end-of life issues which are accessible on our website at www.cmf.org.uk/ethics/submissions/ and the Council is welcome to consult these and the CMF File on 'When to withdraw or withhold treatment' for more relevant background material.

• Withholding and Withdrawing Treatment (October 1998) - Medical Ethics Committee of the British Medical Association
• Who decides? Making decisions on behalf of Mentally Incapacitated Patients (March 1998) - Family Policy Division of the Lord Chancellor's Department
• Advance Directives (1994) - BMA Working Party
• Medical Ethics (1993) - Select Committee of the House of Lords

May we begin by commending the General Medical Council for their Consultation Document which provides an excellent basis for discussion on these vital issues.

Preamble

Our submission is based on the following presuppositional framework:

1. Human beings, even in the agony of suffering, or in a twilight mental state, are God-like beings. And any being made in God's image deserves a range of responses: wonder, respect, empathy, and above all protection from abuse, from harm, from manipulation, and from wilful neglect. In the incarnation, God re-affirmed once and for all the value that he places on humanity, created in his image. Every patient, no matter how deformed the body, deranged the mind, diminished the personality, carries this double hallmark of divine value.
2. Human life is sacrosanct, and there is a strict line drawn between removing suffering and removing the sufferer. Intentional killing by euthanasia (homicide), suicide (whether physician-assisted or not) or by withdrawal of treatment is always morally wrong. The key issue separating ethical and unethical acts is intention. Withdrawal or withholding of treatment in a dying patient whose death is both imminent and inevitable is good medical practice if the burden of the treatment outweighs its benefit and the intention is to relieve suffering, rather than to hasten death.
3. There is a fundamental difference between making treatment decisions, and making value-of-life decisions. Doctors are qualified to make treatment decisions: to decide which treatment is worthwhile and which is not. But doctors are not qualified to make value-of-life decisions: to decide which life is worthwhile and which is not. Doctors may determine whether a treatment is futile, but they can never determine whether a life is futile. When we withdraw or withhold treatment, we are expressing a belief that the treatment is valueless, not that the patient is valueless.
4. Not only is each individual human life special, but we are all part of the human family, created to be in community. To think that matters of life and death can be decided in isolation, by a single individual, is a dangerous illusion. Whilst recognising that most withdrawal of treatment decisions are clinical rather than ethical, and that therefore the most senior clinicians should be central figures in these submissions, we recognise that sections of the medical profession have in the past embraced unethical practices. Therefore it is essential that doctors remain accountable outside professional bodies to the timeless principles of the Judaeo-Christian ethic and the spirit of historically accepted ethical codes including the Hippocratic Oath, Declaration of Geneva (1948), the International Code of Medical Ethics (1949).
5. Death is the 'last enemy', an evil and an outrage to be fought. Similarly, the loss of function, infirmity and the degenerative disease that come with age are real evils. Dylan Thomas expressed this in striking terms writing of his father's blindness; Do not go gentle into that good night
   Rage, rage against the dying of the light. Old age itself is not an evil, but rather a stage of life to be respected and honoured. For those trapped in a fallen and decaying body, living a severely limited and frustrating existence, death can come as a merciful release, a sign of God's grace. Christian attitudes to death reflect this strange ambiguity: on one hand it is an evil to be fought; on the other hand it may at times be accepted, even welcomed, as a sign of God's mercy and grace.
6. Despite the many advances in curative medicine the time-honoured maxim of 'heal sometimes, relieve often, console always' remains true. When cure fails, care must continue. Good palliative care for the dying patient must match symptom to treatment: Pain should be managed with analgesics, nausea with antiemetics, anxiety with anxiolytics, choking with good airway management, hunger with nutrition, thirst with fluids etc. Whilst recognising that some treatments have more than one mode of action, it is no more appropriate to treat hunger and thirst with pain relief and sedation than it is to treat pain and anxiety with food and fluids.
7. Patients and their relatives have three prime concerns in this area: to receive good palliative care and to die comfortably, to avoid futile and intrusive treatments and to avoid being neglected or abused. Therefore any guidance on end-of-life issues must ensure that it enables adequate symptom relief for the dying patient, frees doctors from the obligation to supply intrusive treatments and interventions in which burden to patient outweighs benefits, and provides safeguards against abuse and negligence. It is possible for laziness, negligence and bad care to pass under the guise of wanting to avoid subjecting the patient to intrusive treatment.

Comments on questions raised in the document

Introduction (Paragraphs 1-4)

Q1. Is the introduction helpful background?

The statement (para 3) that 'any medical intervention where the doctor's primary intention is to end the patient's life is both contrary to the ethics of medicine and unlawful' is an excellent starting point and deserves more prominence. The emphases on doctors making 'care of their patients their first concern' (para 1), life having 'a natural end' (para 1), doctors having access to 'up-to-date medical advice', especially on palliative care, (para 2) and 'greater involvement' for patients and families (para 2) are all helpful.

But there is an implication in the words 'little hope of recovery' (para 1) and 'all means at their disposal to prolong a patient's life' (para 4) that the end of medical care is primarily curative. Medicine has not failed when cure is not possible; it is as much about caring and consoling as curing - and good palliative care involves much more than simply avoiding intrusive treatments.

This introductory section should emphasise more that the GMC guidance is about maximising palliative care for the patient who is dying. It should state explicitly that it deals with the question of whether or not doctors should administer treatments that may lengthen life in patients whose deaths would be otherwise imminent and inevitable. This would make it clear that the guidance is not providing a framework whereby some patients who are not terminally ill, or alternatively terminally ill patients whose deaths are not inevitable and imminent, could be starved or dehydrated to death, or caused to die through other forms of neglect. This would allay the considerable anxiety evoked among the public and some doctors by the earlier BMA guidance on this issue.

It is imperative that the GMC guidance is not misunderstood as a smoke-screen whereby failure to care can be justified on the grounds of 'best interests of the patient' and where the real intention is to lessen the treatment burden on a health system short of staff and resources by removing the obligation to provide certain categories of care to certain patient groups.

Q2. Are there issues you consider important which are not addressed in the guidance?

We welcome much of the guidance but summarise here our major concerns, most of which are picked up in more detail in other parts of the submission as indicated:

1. The legal status of the guidance is not clear and needs to be more clearly stated.
2. The guidance needs to be more explicit both in the title, subtitles and throughout that it deals with the management of dying patients: those whose deaths are inevitable and imminent without life-prolonging treatment (Q1).
3. In addition to the welcome emphasis on doctors not giving treatments to the dying patient when burden outweighs benefit, there needs to be much more emphasis on the obligation of doctors to provide adequate symptom relief and support, not just pain relief and sedation, when cure is not possible (Q1,7).
4. The guidance unhelpfully uses a number of terms which are already given alternative meanings by the voluntary euthanasia movement (eg. Best interests, good death, dignity etc): a new vocabulary is required (Q9).
5. In all instances of doubt about withholding and withdrawing treatment there should always be a presumption in favour of starting or continuing treatment. This needs to be more explicit more often throughout the guidance.
6. When legal precedent is based on disputable case law this needs to be stated more clearly (Q10).
7. There is a real danger of doctor paternalism in the way the guidance is framed. When senior physicians are challenged the case goes to the courts who then appeal to the medical profession (Q10).
8. There needs to be more provision for members of a team, who believe non-treatment decisions are unethical, to object conscientiously without fear of discrimination (Q11).
9. Too much new and controversial material, which will have profound implications for the way the guidance will be followed, is introduced in the glossary.
10. The definition of basic care should not exclude artificial nutrition and hydration when this enhances a patient's well-being and relieves hunger and thirst (Q7, Glossary).
11. The definition of best interests should make it clear that doctors are not qualified to judge a human life as not worth living (Preamble 3, Glossary).
12. The definition of life-prolonging treatments should not include artificial nutrition and hydration because, in the public mind at very least, this leaves the way open for patients whose deaths are not imminent and inevitable to be dehydrated or starved to death (Glossary).
13. Advanced refusals/statements need a proper legal definition (Q4).

Respect for human life and best interests (para 5)

Q3. Is the wording of this section clear and helpful, bearing mind the more detailed advice in the rest of the document?

It would help to add the words 'at the end of life' to the heading to emphasise the point well made in paragraph 5 that we are talking about patients whose deaths are imminent. We also need to be sure that we are talking about 'best interests' that can assessed by doctors. As stated in paragraph 3 of the preamble above, doctors are only qualified to make treatment decisions: to decide which treatment is worthwhile and which is not. Doctors are not qualified to make value-of-life decisions: to decide which life is worthwhile and which is not. Doctors may determine whether a treatment is futile, but they can never determine whether a life is futile. It is not acceptable for doctors to make the decision that a patient's quality of life is such that it is in their best interests to die.

Patients who can, and those who cannot, decide for themselves (para 6,7)

Q4. Is the wording sufficiently clear, bearing in mind the guidance in the rest of the document?

The paragraph should also allow for the fact that 'adult competent patients' who may nonetheless feel a burden to relatives, carers or a community short of resources may feel under considerable pressure, whether real or imagined, to request withdrawal of treatment. This paragraph should also recognise that as well as protecting patients from burdensome treatment they do not want, there is an equal need for patients to be properly informed and given every opportunity to request appropriate treatment. It also needs to recognise that a patient's desire for treatment may change with time. Patients who make advance refusals when fit and well may not be properly informed about the effectiveness of palliative care, or the intrusiveness of treatments and may make ill-informed decisions. Also not all 'advance statements' are legally binding - the guidance does not make it clear that the legal force of advance directives is grounded in disputable case law and not statute law. It would be wise then to reword sentence 2 para 6 to read '...where it is legally valid and clearly applicable, any legally binding refusal of treatment...'. The same change needs to be made in paragraph 7, sentence 2: '... any legally valid advance refusal of treatment'. Legally valid advance refusal and statement should be defined, preferably in the glossary and footnoted.

With regard to incompetent patients, it should be noted that relatives and carers (including health professionals), particularly if suffering themselves through caring for the patient (or standing to gain financially from their death), may sometimes be tempted to act in their own, rather than in the patient's, best interests. In situations of doubt there should be a presumption in favour of starting or continuing treatment.

Differences of View about best interests (para 9)

Q5. In your experience, how effective is independent clinical and/or ethical review in helping to reach a consensus in such cases?

Independent reviews are more likely to be effective in reaching a consensus in cases of disagreement if they are easily and quickly attainable from people with extensive clinical experience, recognised integrity and the willingness to explain decision pathways. It is important that in the light of paragraphs 19 (senior clinician decides) and paragraph 40 (non-compliers answering to courts and GMC) that junior members of the health-care team are not forced to implement non-treatment decisions against conscience. A conscientious objection clause needs to be added here to ensure that such people are not discriminated against.

Q6. What other steps might be taken to try to resolve such difficulties?

Objective medically assessable best interests should take precedence over perceived spiritual or psychological best interests because they are more easily measurable and less open to dispute. If the dispute cannot be resolved after application of these measures the patient should be given the benefit of the doubt and the treatment in question continued. After a further period of treatment, consensus might be more easily achieved when the team have been able to assess treatment outcome.

Concerns about starting then stopping treatment (10)

Q7. Is the explanation of the problem and the advice given clear enough to assist a reader with these concerns?

The emphasis on a 'presumption in favour of starting treatment' in these circumstances is good. But the reassurance that only 'basic care', as defined in the glossary, will always be provided raises concerns. The glossary definition of 'basic care' includes pain relief (including presumably pain relief given parenterally) but only 'the offer of oral nutrition and hydration'. 'Artificial nutrition and hydration' (including ng tubes and pegs) are excluded. This is inconsistent. 'Basic care' (which the guidance admits is not legally defined) should either include all symptom relief including the relief of hunger and thirst or only that care that does not require artifices (tubes, IVs etc). We prefer the former. The criterion for deciding what constitutes basic care should be effectiveness of symptom relief, not mode of administration. Either way the priority should be to do what is necessary to relieve patients' symptoms whether this requires artifices or not. The guidance appears to leave the way open for neglecting to relieve hunger and thirst, which can persist despite serious damage to other areas of the brain. In addition the distinction between cups, spoons, ng tubes and pegs (page 29) is blurred, controversial and difficult to define. In practice, in the current NHS there are often not the staff resources to ensure that adequate hydration by cup or spoon is possible as it is so time-intensive. Hydration by fine ng tube or peg is surely far preferable to death by dehydration!

Non-discrimination (11)

Q8. Is the advice clear enough?

Yes, if it is indeed aimed at protecting vulnerable patients from being neglected as indicated in the explanatory note circulated with the questions. Perhaps these examples raised in the media (elderly and Down's syndrome) should be specifically mentioned here, to ensure that this paragraph is properly understood.

Ensuring a good death (12)

Q9. As described here do you consider the concept of 'a good death' to be helpful?

Yes, provided that it is distinguished clearly from the term 'euthanasia' (meaning literally 'good death') which has come to mean 'intentional killing on compassionate grounds'. The word 'dignity' is also unhelpful as 'death with dignity' is used as a synonym for 'euthanasia in popular circles. Symptom relief involves more than simply pain relief and support includes social, emotional and spiritual factors. We therefore suggest changing the wording to 'privacy, love and respect, good quality care in comfortable surroundings, adequate symptom relief and appropriate social, emotional and spiritual support'.

The legal background (14-17)

Q10. Is it helpful to set out the legal background in this way? Are you aware of any relevant legal development which is not reflected here?

It is helpful provided the point is made that many of these principles are based on case law which is itself open to interpretation, and which can be applied differently by different judges (for example see the ruling in the Conjoint Twins case where all three Appeal Court judges reached the same conclusion but by different application of case law). It would be wrong to convey the impression that principles are set in stone when their interpretation and future application is disputable.

The legal precedent that artificial nutrition and hydration constitutes medical treatment and may be legally withdrawn applies not generally but only in PVS. In addition all PVS cases must currently go back to the Law Lords for individual decisions.

The Bolam Test applies to civil negligence, and it is debatable whether it has a place in decisions on withdrawal of treatment. The starting point should surely be whether the proposed action constitutes criminal negligence. This paragraph, together with paragraphs 19 and 40 gives the appearance of circular reasoning and could well be misunderstood by the public as a return to dangerous doctor paternalism. That is, if there is disagreement about a course of action then the senior doctor decides (para 19) If others (team or relatives) disagree it goes to the courts (para 9). The courts decide on the basis of 'responsible medical consensus' (para 15) - presumably looking to the BMA and GMC guidance. But what if the BMA or the GMC embrace an unethical course (as the German medical profession did in the 1930s and 1940s?) This effectively places the profession above the law - and this fact will be clearly evident to the general public at a time when fears of doctor paternalism are being fuelled in the media and by high profile cases (Bristol, Alder Hey etc). There has already been a lot of public disquiet expressed about the BMA guidance as noted above.

Clinical responsibility for decisions (19)

Q11. Is the guidance helpful as it stands? Would a specific statement about junior doctors add any value?

Yes. It is important to make it clear that the senior clinician carries both authority and ultimate accountability for the decision, that decisions are made on the individual case after proper consultation (ie no blanket judgements and policies) and that the responsibility and authority cannot be delegated to junior staff. This will ensure that these decisions are not made in an emergency situation. There must also be provision for juniors to conscientiously object to being executives for non-treatment decisions that they believe are unethical or morally wrong.

Diagnosis and Prognosis (20)

Q12. Is this helpful?

Yes, allowing for the fact that assessments of prognosis are notoriously difficult in some situations.

Options for Treatment (21-23)

Q13. Is this helpful? Can you identify any practical problems in particular settings for obtaining second opinions?

Yes, provided there is provision for second opinions in remote areas.

Emergencies (para 24)

Q14. Is this helpful? Is the wording clear enough to be applied sensibly in emergencies?

Yes. But it would be useful to add as a final sentence, 'If in doubt there should always be a presumption in favour of starting treatment'. (from para 10) In emergency situations it will usually be impossible to ascertain the proper validity of advanced refusals so decisions should be left until a clearer decision can be made, usually on the post-take ward the next day. This system applies to CPR decisions and should apply here.

Choosing between options: patients who can decide for themselves (25-28)

Q15. Is this guidance sufficient to ensure that the right issues are raised with patients in an appropriate way?

Yes.

Choosing between options: patients who cannot decide for themselves (29-32)

Q16. Is the advice in this section helpful in clarifying responsibilities?

Yes. But amend para 31 sentence 1 to read 'any legally valid'; and add 'If in doubt there should always be a presumption in favour of starting or continuing treatment' (see above).

Reaching a Consensus (33)

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?

Yes definitely, with full references for further reading.

Disagreement about best interests (34)

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?

No. Practical difficulties would arise less often if measures implied in answer to Q5 above are followed.

Communicating Decisions (35)

Q19. Will the advice be helpful in achieving good communication?

Yes.

Recording Decisions (36)

Q20. Is the advice helpful? Can you identify any practical problems in particular settings?

Yes, but it is important to achieve these objectives without imposing too much extra time consuming requirements on medical staff, especially on busy surgical and medical wards. Might a simple form solve this?

Reviewing Decisions (37)

Q21. Is this advice helpful?

Yes.

Children (Appendix A)

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?

Yes. But it may be wiser to include already existing guidance from the Royal College of Paediatrics and Child Health as an appendix.

Cardiopulmonary Resuscitation (Appendix B)

Q23. Is this guidance helpful? Can you identify any practical problems in following this guidance?

We have appended our own file on 'Do not resuscitate dilemmas'. We would want particularly to emphasise patient involvement in decision-making, fully informed consent and that decisions are made on the basis of evidence-based survival prospects rather than on quality of life considerations.

Glossary

Q24. Is the glossary helpful? Should any other words or phrases be explained here?

A glossary is essential but this glossary is the most unhelpful part of the draft guidance because it introduces too much new and controversial material. See especially comments above in answers to Q4 and Q7 re the definition of valid advanced statements/refusals and the definition of basic care respectively.

In addition the definitions of 'artificial nutrition and hydration', 'best interests' and 'life-prolonging treatments' are disturbing and extremely controversial. They are stated to have no wider or legal status, and are indeed it would appear quite arbitrary. But nevertheless they will have profound implications for the way the guidance is put into practice.

We are particularly concerned about decisions about hydration and nutrition in an under-resourced health service where only cups and spoons are regarded as part of basic care. We are gravely concerned that artificial nutrition and hydration (which includes the relatively standard and straightforward procedures of ng tubes, pegs etc) are being considered as 'life-prolonging treatments' which have the 'potential to save or extend the life of a patient who might otherwise die through organ or system failure' (including presumably pre-renal renal failure secondary to dehydration). We do not consider nutrition and hydration to be in the same category as CPR and artificial ventilation and are concerned that this definition will allow busy and pressed healthcare professionals in a service short on human resources to dehydrate patients whose deaths are not imminent and inevitable either deliberately or through neglect, and to treat their symptoms of thirst and hunger inappropriately with narcotics and terminal sedation.

Although not explicitly stated, the clear implication of the 'best interests' definition is that doctors may make non-treatment decisions for incompetent patients on the basis of quality of life considerations - rather than purely on effectiveness of treatment considerations (see para 3 in preamble above)

Our suggested rewording of the three problematic paragraphs is as follows:

Basic Care: Delete first sentence and reference to BMA. 'This covers procedures or medications which are solely or primarily aimed at providing comfort to the patient or alleviating that patient's pain, symptoms (eg nausea, anxiety, depression, thirst, hunger, fear, loneliness etc) and distress. These would include the offer of oral or artificial nutrition and hydration.'

Best interests: There is a general duty on doctors to provide only those treatments which serve patients' best interests. A treatment will be in the best interests of a patient where it may benefit the person, and where the benefit(s) outweigh(s) any burdens or risks associated with treatment. Benefits and burdens, according to this definition, include the benefits and burdens of treatments for a patient's symptoms only. It is not acceptable for doctors to make the decision that a patient's quality of life is such that it is in their best interests to die.

Life-prolonging treatment: 'These are treatments which have the potential save or extend the life of a patient whose death would otherwise be imminent and inevitable through organ or system failure. These include for example cardiopulmonary resuscitation, artificial ventilation, renal dialysis, chemotherapy and antibiotics for life threatening infections.'

For further information:

Steven Fouch (CMF Head of Communications) 020 7234 9668

Media Enquiries:

Alistair Thompson on 07970 162 225

About CMF:

Christian Medical Fellowship (CMF) was founded in 1949 and is an interdenominational organisation with over 5,000 doctors, 900medical and nursing students and 300 nurses and midwives as members in all branches of medicine, nursing and midwifery. A registered charity, it is linked to over 100 similar bodies in other countries throughout the world.

CMF exists to unite Christian healthcare professionals to pursue the highest ethical standards in Christian and professional life and to increase faith in Christ and acceptance of his ethical teaching.