Response to Withholding and Withdrawing Life-Prolonging Treatments: Good Practice in Decision Making, draft guidance by the General Medical Council, 2001

Question 1: Is the introduction helpful background?

Paragraph 1 rightly states that "life has a natural end". However, the guidance approves of the deliberate withdrawal and withholding of nutrition and hydration administered by tube from patients who are not dying. The withdrawal/withholding of nutrition and hydration from a non-dying patient can only have one result: the premature death of the patient. This may also apply to a terminally-ill patient, depending upon the prognosis. Therefore the guidance appears to contradict its own principle that "life has a natural end".

Also, paragraph 1 implies that quality of life should be used to determine the patient's best interests. Medical ethics has always be based on the Hippocratic principle of the patient's health being the primary concern. It is not and should not be concerned with subjective, non-clinical judgements made by medical staff or those surrounding the patient about the value of the patient's life. The restoration of health and the preservation of life is central to the patient's best interests, regardless of their condition or of their capacity to understand or express their feelings. Any attempt to re-define the concept of "best interests" to exclude the patient's clinical interests, i.e. health, is an exercise in overturning the whole structure of medical care and medical ethics.

Paragraph 3 states that the guidance "is based on those areas of broad consensus so far established". It is far from true that the withdrawal/withholding of nutrition/hydration from a patient so as to cause the patient's death (which the guidance approves) is supported by a broad consensus. In a recent open letter regarding this draft guidance, 11 respected medics and medico-legal lawyers¹ said:

...the withdrawing and withholding of treatment from patients, particularly hydration and nutrition, is a matter of prime public concern. The draft guidance appears to be legally flawed in that it assumes certain propositions to be law when they are at best controversial. Some of the medical guidance may also be open to question. Currently doctors consider a patient's best interests clinically when treating them but the guidance seems to encourage non-clinical and subjective 'quality of life' considerations which are vague and, in the context of withdrawing hydration, likely to be controversial. The guidance appears--probably inadvertently--to allow the withdrawing and withholding of fluids by tube to non-dying patients so as to cause their death. That, of course, is, and should remain, unlawful. It will be most important for the GMC guidelines to reinforce the current law in that respect.

In Airedale v Bland (at 356 - 57), Lord Justice Hoffman noted that:

If someone allows a small child or invalid in his care to starve to death, we do not say that he allowed nature to take its course. We think that he has committed a particularly wicked crime. We treat him as if he had introduced an external agency of death. It is the same ethical principle which requires doctors and hospitals to provide patients in their care with such medical attention and nursing as they are reasonably able to give..." (at 356).

He added: "The giving of food to a helpful person is so much the quintessential example of kindness and humanity that it is hard to imagine a case in which it would be morally right to withhold it." SPUC and the hundreds of thousands of people in the British pro-life movement (including a large number of medical professionals) have over many years continually voiced their opposition to the withdrawal/withholding of nutrition/hydration from a patient so as to cause the patient's death, which is rightly termed "euthanasia" or "euthanasia by omission".

Also, paragraph 3 states: "[The guidance] is therefore based on the premise 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." However, this seems to imply that, if the doctor's secondary intention is to end the patient's life, then this is not "contrary to the ethics of medicine and unlawful". Although a doctor may initiate treatment that he foresees may shorten the patient's life, the doctor may never initiate treatment with an intention of any kind to end the patient's life. Further, it is important both legally and ethically to exclude intentional killing by omission. This statement should therefore read "...that any medical intervention or omission where the doctor's purpose or one of his purposes in doing so is to hasten or otherwise the end of the patient's life...".

Also, by using only the words "medical intervention", paragraph 3 notably fails to include the withdrawal/withholding of nutrition/hydration from a non-dying patient as being "contrary to the ethics of medicine and unlawful". The withdrawal/withholding of nutrition/hydration from a non-dying patient can only result in one scenario--damage to, and the death of, the patient. This is contrary to the fundamental principle of medical ethics, upheld from Hippocrates through to Florence Nightingale: primum non nocere--first, do no harm. SPUC made a submission to the House of Lords select committee on medical ethics in 1993, in which we stated: "The Bland judgement was a total reversal of traditional medical ethics...a disturbing departure from the common law...In fact, the judgement was not an organic development of the common law, but legislation by judicial fiat."

In answer to this question, the introduction to the guidance is not "helpful background" but a contradictory and misleading re-invention of medical ethics.

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

Paragraph 5 begins:

Doctors have an ethical obligation to show respect for human life and protect the health of their patients. They also have a duty to act always in the best interests of a patient. This means offering those treatments where the possible benefits outweigh any burdens or risks associated with the treatment, and avoiding those treatments which are futile or where there is no net benefit to the patient.

This statement is to be welcomed. However, the paragraph goes on to state:

Benefits and burdens are not limited to purely medical considerations, and doctors should be careful to take account of all the other factors relevant to the circumstances of the particular patient. Prolonging life will usually be in the best interests of a patient, provided that the treatment is not considered to be excessively burdensome or disproportionate in relation to the expected benefits. Withholding or withdrawing life-prolonging treatment is in the best interests of a patient when there is no net benefit to the patient of providing the treatment.

This statement is flawed in that it implies that there may be circumstances in which prolonging life by non-burdensome and proportionate treatment is not in the patient's best interests and is unduly vague about factors to be considered among "best interests". Also, by the use of the phrase "no net benefit to the patient", it implies that assisted nutrition/hydration (where it has been re-defined as "medical treatment"), can be withdrawn or withheld. Nutrition/hydration (assisted or otherwise) is always of benefit to the patient. The only exceptions to this fact are where nutrition/hydration and/or the physical administration of its means are physically burdensome or impossible, or where the benefit may be negligible, e.g. where a terminally-ill patient is close to imminent death.

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

Paragraph 6 states: " Adult competent patients have...the right to refuse treatment even where refusal may result in harm to themselves or in their own death." This is false: there is no absolute moral or ethical right to refuse medical treatment. Patients must exercise the freedom to refuse medical treatment responsibly, in pursuit of their own good health and respect for the good of persons in the community. Where consent is refused simply in order to hasten death, it amounts to suicide and is unethical. Patients do not have the right to refuse "treatment" where "treatment" has been re-defined to include assisted nutrition and dehydration. Where a patient regards the administration of nutrition and hydration (assisted or otherwise) as futile or burdensome, it is invariably due to some failure of right reason or good judgement by the patient, except where a terminally-ill patient may be undeniably close to imminent death.

Paragraph 6 also states: "...where it is valid and clearly applicable, any refusal of treatment given when they were competent must be respected." (also repeated in paragraph 7). This statement is flawed, in that advance refusals of treatment are not legally binding. Doctors have always had and should continue to have the power critically to evaluate and reject any actual or supposed wish of a patient regarding his/her life-prolonging care and treatment, according to the doctor's assessment of the patient's best clinical interests. Furthermore, as Lord Mustill noted in Airedale v Bland: "It is a striking fact that in 20 of the 39 American states which have legislated in favour of 'living wills', the legislation specifically excludes termination of life by the withdrawal of nourishment and hydration." This trend has remained the same since Lord Mustill's statement. We submit, therefore, that whether or not advance directives are binding (legally or in any other sense), any permission for the withdrawal/withholding of nutrition/hydration contained in or extrapolated from such directives are always to be ignored.

Paragraph 6 therefore places patient autonomy above the patient's best clinical interests, which is a inversion of medical ethics, which places medical beneficence and non-maleficence above autonomy. If treatment can morally be refused by the adult competent patient even when it is not burdensome in itself but in order to allow the autonomous 'self'-liberation from a burdensome life, it is then asserted by a dubious extension that those who cannot give their consent to decisions to speed up their deaths should not thereby be deprived of this supposed "right". Thus the principle of autonomy becomes the ethical and legal vehicle for ridding the community of lives deemed "not worth living".

It must therefore be emphasised that doctors have a legal, moral and ethical duty not to kill nor to aid, abet, counsel or procure a suicide. This is the case even where the doctor is unable to save the patient's life. This principle is especially important in reassuring the patient about their safety whilst in medical care and for the maintenance of good doctor-patient relationships.

Paragraph 7 states: "Where a patient's wishes are not known, the doctor must consult with the patient's authorised representative where appointed." This statement is also legally flawed: "medical attorneys", "managers", "tutor-datives" have not been legislated for in England, Wales or Northern Ireland, and therefore there can be no obligation upon the doctor to consult such a person. The GMC, by proposing this statement, seems to be acting ultra vires and compromising its independence by promoting government policy for the establishment of continuing powers of attorney (CPAs).

Paragraph 7 goes on to state: "The health care team should be consulted and, wherever possible, so should those close to the patient who may be able to offer an insight into the patient's preferences or an opinion on what would be in the patient's best interests, based on their knowledge of the patient." The significant or decisive involvement of persons, other than the senior clinician in charge, in decisions regarding the patient's life-prolonging medical care and treatment is to be rejected. Such persons would not need to be medically or legally qualified; are not legally accountable for the consequences of whatever advice or instructions that may give to medical staff; and may benefit in some way, especially financially, from the patient's death. This statement attempts to subvert the traditional medico-ethical concept of "best interests" by widening it to include notions other than the patient's best clinical interests, i.e., health. Only the senior clinician in charge is fully qualified to make decisive judgements as to the appropriate medical care and treatment for the patient, seeking only and always the patient's restoration of health, preservation of life, prevention of impairment and alleviation from suffering.

In answer to the question, the wording of this section is unclear and unhelpful, in that it gives legally false and ethically flawed guidance.

Q6. What other steps might be taken to try to resolve such disagreements? and Q7. Is the explanation of the problem and the advice given clear enough to assist a reader with these concerns?

Paragraph 10 states: "Where patients lack capacity to decide and there is doubt about the appropriateness of providing treatment, there should always be a presumption in favour of providing treatment." In order to avoid such doubts and disagreements:

this should also apply especially where "medical treatment" has been (unfortunately) re-defined to include assisted nutrition/hydration.
the withdrawal/withholding of nutrition/hydration (assisted or otherwise) from a patient should be a criminal offence approaching or equivalent to manslaughter. The only exceptions to this law should be in the rare case where the nutrition/hydration and/or the physical administration of its means are physically burdensome.

Paragraph 10 also states: "Patients, their families and carers should be re-assured that basic care will always be provided." However, the definition of "basic care" in the glossary is perverse. It recommends the British Medical Association's definition of "basic care", which would include painkillers and indeed terminal sedation (which are clearly medical), while failing to include nutrition/hydration provided through a tube. Therefore, the absurd situation follows that a patient has a right to have their death hastened by terminal sedation but does not have the right to nutrition/hydration if it cannot be given orally. As PVS specialist Dr Keith Andrews has written², "To my mind [a gastronasic or gastrostomy tube] is simply a tool for daily living, similar to the specifically adapted spoons that enable patients to feed themselves."

Q8. Is the advice clear enough?

This paragraph is far from adequate. The promotion of inappropriate "quality of life" considerations is a threat to the medical care and even the very lives of seriously disabled people, including the very young and elderly disabled. It should be stated that, whereas treatment and non-treatment options may be evaluated, attempts to evaluate whether a patient's life is worth preserving are unethical.

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

In so far as the concept of "a good death" is used here to contain or imply the concept of its Greek translation euthanasia, we not only consider this description to be unhelpful but an thinly-veiled promotion of the illegal and unethical practice of euthanasia.

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?

Paragraph 14 lists relevant legal precedents, stating that these judgements "have shown that the courts do not consider that protecting life (the 'sanctity of life' principle) always takes precedence over other considerations." Properly understood, the sanctity of life principle and other rights or considerations (such as personal autonomy) do not come into conflict and do not require balancing or compromising. Although other human goods are more precious, the possession of life is fundamental. Unless the right to life is guaranteed, all other rights are in danger of being violated and may become purely theoretical.

The bullet-point beginning "Final responsibility...". We are concerned that this statement may jeopardise patient consent and may lead to the doctor's presuming to know what the patient wants before he recommends or seeks the patient's consent for treatment.

Paragraph 15 cites the "Bolam test". However, the Bolam test is being rejected in an increasing number of jurisdictions. The medical profession should deepen its adherence to sound medical ethics to obviate the need for recourse to legal judgements.

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

A specific statement should be made here indicating that, in order for clinical responsibility to be exercised at all, all doctors, especially junior ones, must be thoroughly grounded in the tradition of medical ethics. Such a statement should state that primum non nocere (first, do no harm) is the underlying principle guiding the withholding or withdrawal of life-prolonging treatment and that this principle specifically excludes the withdrawal/withholding of nutrition/hydration from a patient so as to cause the patient's death. This statement should also enunciate the hierarchy of principles governing the exercise of clinical responsibility--medical beneficence, non-maleficence, autonomy and justice. This statement should specifically state that clinical best interests are not determined by the wishes of the patient (or others) even though the competent patient has a right to reject treatment offered.

Q12. Is this helpful?

Current guidance on good clinical practice in this area (such as that issued by the British Medical Association) reflects a distortion and corruption of medical ethics in that it allows the withdrawal/withholding of nutrition/hydration from a patient so as to cause the patient's death. Furthermore, divisions within the medical profession over the diagnosis and prognosis of patients in persistent/permanent vegetative state and over the criteria for determining death mean that current guidance in this area is in a state of flux. The BMA's guidance gives doctors wholly inadequate, and even faulty, legal advice. In March 2000, Mr Iain Gray, deputy Minister for Community Care in Scotland said: "Concerns have been raised regarding the comments in the BMA guidelines on non-PVS patients, such as those who have suffered a stroke...To withdraw hydration and nutrition from a non-PVS patient with the purpose of hastening death would leave a medical practitioner open to criminal prosecution." This demonstrates how badly served doctors currently are by current guidance.

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

SPUC has been contacted many times by relatively junior members of health care teams who have felt constrained in expressing their professional and/or conscientious objections to potentially life-threatening courses of action. No matter how junior or senior the person, their objections to proposed treatment must be treated with appropriate respect, concern and consideration.

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

What is unclear here is:

how can the validity of advance directives be determined in an emergency? Testamentary wills may take years of legal wrangling to be interpreted!
emergencies could involve suicide notes requesting withholding of all care and treatment. If these were to be followed on the grounds that they were valid advance refusals, doctors would be colluding in suicide.

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

Please see our comment on paragraph 7 in our answer to Q4.

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?

Publications which suggest the definition of best interests along wholly or predominantly autonomistic lines (such as Making Decisions) threaten to undermine medical ethics and good clinical practice and should be strenuously avoided.

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

Please see our answers to the previous questions for detailed criticism of the use in the guidance of the glossary terms, especially our answer to Q7 re "basic care". We particularly object to the definition of "best interests", which is a "halfway house" between the objective goods of the patient (health, life, non-suffering) and more vague ideas (benefits, quality of life).

Professor Peter Millard, formerly Eleanor Peel Professor of Geriatric Medicine, St George's Hospital Medical School, past president of the British Geriatric Society; Professor John Henry, Professor of Accident and Emergency Medicine; Dr Mark Blackwell, consultant psychiatrist and honorary senior lecturer; Dr John Mclean, former senior lecturer in anatomy and embryology; Mr Peter Saunders, former general surgeon; Dr Margaret White JP, retired general practitioner; Dr A.Majid Katme, retired psychiatrist; Mr Gerard Wright QC, barrister; Mr James Bogle, barrister; Mr Bruno Quintavalle, barrister; Mrs Mary Kearns, solicitor-advocate.
Letting vegetative patients die, British Medical Journal, 12 December 1992.