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Submission from CMF to the Select Committee of the House of Lords on the Assisted Dying for the Terminally Ill Bill

Published: 3rd September 2004

Introduction

The Christian Medical Fellowship (CMF) is an interdenominational organisation with more than 4,500 members. The membership comprises British doctors who are Christians and who desire their professional and personal lives to be governed by the Christian faith as revealed in the Bible. Members practise in all branches of the profession, and through the International Christian Medical and Dental Association are linked with like-minded colleagues in over 100 other countries.

CMF regularly makes submissions on ethical matters to Government committees and submitted evidence to the 1993 Lords Select Committee on Medical Ethics.[1] We have also published widely on the subjects of euthanasia and assisted suicide (please see our website at www.cmf.org.uk and our CMF Files on Euthanasia[2] and Assisted Suicide[3]). We are grateful for this opportunity to comment on the difficult issues raised by the Assisted Dying for the Terminally Ill Bill and would be very willing to give oral evidence to the House of Lords' Select Committee if invited.

Our submission is divided into two sections. The first addresses our general concerns about the legalisation of assisted dying. The second addresses specific elements of the Assisted Dying for the Terminally Ill Bill. Our conclusion is that euthanasia and assisted suicide should not be legalised and that this bill should not proceed.

Section One – general concerns about the legalisation of assisted dying

In the terms of the bill assisted dying means the attending physician either providing the means to end the patient's life, or if the patient is physically unable to do so ending the patient's life. This bill if passed would therefore legalise both assisted suicide and euthanasia. The arguments against euthanasia and assisted suicide are essentially the same. We have used the term 'assisted dying' to encompass both practices, and have outlined below our objections to the major arguments in their favour.

1. The argument for assisted dying from autonomy

One of the major arguments in favour of assisted dying is that of autonomy, the so-called 'right to die'. We all value living in a free society but for society to function there must be limits on individual autonomy. Rights need protection, but must be balanced against responsibilities and the rights of others. No person chooses assisted dying in isolation. Friends, relatives, healthcare staff and society are affected by the wider ramifications of the process. The effects of individual decisions on others now living and on future generations must be considered. Autonomy is never as uncomplicated as 'my right to die'. Therefore although we recognise the importance of autonomy we have the following concerns in relation to this bill.

1.1 The 'right to die' will change the role and vision of the medical profession

Legalisation of assisted dying will present legalised killing as a potential good rather than a fundamental harm for the first time. It will establish killing as a viable 'therapeutic option' that, if deemed valid in some cases, will need to be considered in all cases. This will fundamentally change the whole ethos of medicine. As a profession, and as a society, we have always seen the wish to die, for example in the suicidal person, as a cry for help, an indication that something is wrong that needs to be addressed. The medical profession has been built on seeking ways to relieve suffering, treat illness and preserve life; to restore dignity and hope. This bill changes the role of doctors and the doctor-patient relationship by introducing the option of doctors killing their patients.

Calls for assisted dying have been encouraged either by the failure of doctors to provide adequate symptom control, or by their provision of inappropriate interventions which neither lengthen life nor improve its quality. This has understandably provoked distrust of doctors by patients. However, legalising assisted dying is not the answer to this problem. Patients' fears of being kept alive by futile medicine will be replaced by the fear of being killed prematurely without their consent.[4] Rather what is needed is a relationship of trust, where the role of the doctor is to assist the patient in being in control of what happens. Patients want above all a doctor who will listen to them, take their concerns seriously, explain the options clearly and respect their wishes; a doctor who will strive to offer the best care available. This is what lies at the heart of the doctor-patient relationship. This is the way to calm patients' fears, and restore autonomy.

1.2 The 'right to die' will in reality be the right to be killed and will increase the power of the medical profession not the autonomy of the patient

In the Netherlands, some 30% of euthanasia requests are rejected by doctors on the basis that the patient's suffering is not sufficiently severe.[5] Conversely, approximately 1,000 deaths (0.8% of the total) are due to patients being killed against their wishes or without explicit consent.[6] The bill requires a doctor to make a judgement about the patient's request. Ultimately it is the doctor's assessment of diagnosis, treatment options, prognosis and the anticipated degree of future suffering that is the decisive factor, not the patient's autonomy.

Assisted dying legislation makes doctors less accountable and more powerful. Patients decide on the basis of information given to them by doctors. However it can be difficult to be certain in these areas; diagnoses may be mistaken,[7] prognoses misjudged, there may be new treatments of which the doctor is unaware, the doctor may not be up-to-date in symptom control. Furthermore, doctors are human and subject to temptation. Sometimes their own decision-making may be affected, consciously or unconsciously, by extrinsic pressures and influences, such as their own emotional state, discussion with family members and the views of other health care professionals.

1.3 The 'right to die' puts vulnerable patients at risk

The law is always concerned to protect vulnerable groups in our society. The Select Committee on Medical Ethics, in its 1994 report, unanimously ruled that there should be no change in the law.[8] Lord Walton reflected on this in a speech to the House of Lords on 9 May 1994:

'We concluded that it was virtually impossible to ensure that all acts of euthanasia were truly voluntary and that any liberalisation of the law in the United Kingdom could not be abused. We were also concerned that vulnerable people - the elderly, lonely, sick or distressed - would feel pressure, whether real or imagined, to request early death.'

This conclusion still holds.

1.4 The 'right to die' simplifies the difficulties in ensuring a decision is truly autonomous

Many patients with a terminal illness are vulnerable and lack the knowledge and skills to alleviate their own symptoms. They may well be fearful about the future and anxious about the effect their illness is having on others. Their decision-making may also be affected by depression, confusion, and dementia. There are many anecdotal accounts of patients who, on admission to a hospice, say 'let me die', but are grateful that their request was not acceded to once they have received effective symptom relief.

Many elderly people already feel a burden to family, carers and a society which is cost conscious and short of resources. They may feel pressure, real or imagined, to request assisted dying. As has been noted elsewhere, 'A sense of a duty to die is all too easy to create and all too difficult to detect.'[9] These patients need to hear that they are valued and loved. They need to know that we, as doctors and as a society, are committed to their well-being, even if this does involve expenditure of time and money.

In the 2002 study by Kelly et al[10] there is an acknowledgment that 'the wish to hasten death has been shown to be temporally unstable, raising concerns about assisting a patient's request for suicide at any particular point in their illness.' Poor communication, lack of emotional support from doctors and a concern that the patient was a burden to others were associated with a greater desire for a hastened death. Where these factors were absent there was a low likelihood of a patient expressing an interest in an accelerated death.

The desire for death is most significantly correlated with measures of depression in terminally ill patients.[11] Yet nearly 80% of psychological and psychiatric morbidity in patients with cancer goes unrecognised and untreated.[12] It is important that efforts are focussed on addressing these issues in patients. The debate about assisted dying must recognise the importance of psychiatric conditions - which are potentially treatable - and that a patient's desire to die will often decrease over time. While we recognise that certain mental stresses are not treatable – existential angst, loss of dignity, fear of the dying process – these factors are not medical as such, and do not warrant a 'medical' solution in the form of assisted dying. The spiritual and emotional nature of these issues may require the input of people from outside the medical profession. Doctors cannot be expected to be pastors and counsellors; they are not necessarily equipped to address the many needs behind a patients expressed wish to die. Allowing them to kill patients is not the answer to that problem.

1.5 The 'right to die' is the 'choice' mainly of those who are well not those who are terminally ill

In Emanuel et al[13] 60% of the terminally ill respondents supported euthanasia in a hypothetical situation involving others, but only 10% seriously considered euthanasia for themselves. Less than 4% had discussed these interventions with a physician or hoarded drugs for suicide and a very small minority of patients took concrete action such as requesting assistance to die. The paper concludes that patients' personal interest in assisted dying is not a stable preference but may shift over time.

Interest in assisted dying is far less in the terminally ill than in the general population (if surveys that cite 81% support for it amongst the public are to be believed[14]) and it cannot be assumed that a desire for assisted dying at one point in time will remain as death actually approaches.

1.6 The right to die of the few may open the door to a slippery slope that puts the vulnerable at risk

The 'slippery slope' is a contentious issue, but we believe a real one. Human nature seems such that it will push beyond what lawmakers originally intend. For example, those who framed the 1967 Abortion Act did not envisage the abortion on demand practices of the 21st century. Would a similar slippery slope follow the legalisation of assisted dying? There is no evidence to prove it would not. Without entering the philosophical debate, we are greatly concerned by aspects of the Dutch practice of euthanasia.

Philosophically it is hard to limit assisted dying to just those who are terminally ill. If relief of unbearable suffering is the aim then why not extend it to other patient groups who are suffering unbearably? To refuse assisted dying for patients who are not terminally ill but with similar symptoms could be seen as discriminatory. And why just limit it to patients who can request assisted dying? Surely it would be 'bad practice' and 'uncompassionate' to see someone suffering unbearably but not to offer them assisted dying because they were unable to request it themselves.

The Royal Dutch Medical Association (KNMG) and the Dutch Commission for the Acceptability of Life Terminating Action have recommended that active termination of the lives of patients suffering from dementia is morally acceptable under certain conditions. Two earlier reports from the commission affirmed the acceptability of similar action for severely handicapped neonates and comatose patients.[15,16] A study of Dutch neonatal doctors showed that just under half had assisted the death of a handicapped newborn child, despite this situation being outside the euthanasia legislation.[17] Case reports include a child killed for no other reason than it possessed abnormal genitalia and a woman killed at her own request for reasons of 'mental suffering'.[18]

Involuntary euthanasia will happen, regardless of the intentions of the legislators. According to the first Remmelink Report,[19] there were over 3,000 deaths from euthanasia in the Netherlands in 1990. More than 1,000 of these (0.8% of all deaths) were without an explicit request from the patient. The most recent figures show that the problem persists.[20,21] Furthermore, the lack of full reporting indicated in the third 'Remmelink' report is a major cause for concern and would invalidate the reliability of any monitoring commission that might be set up.[22]

1.7 Autonomy is not the real question - it is the issue of compassion

If patient autonomy were the only yardstick by which decisions are measured, assisted dying would effectively be on demand. Furthermore we would agree that anyone who wanted to die, for whatever reason, has the right to do so. Clearly it is not just the desire to die but the suffering of the terminally ill that is driving this debate - the argument is that it is compassionate to end the patient's life if their suffering is severe. This is no longer an argument from autonomy but from compassion.

2. The argument for assisted dying from compassion

This argument accepts that killing can be compassionate and thus changes fundamentally the values of our society and the medical profession. In the UK we have had up to now a different definition, based in the Judeo-Christian tradition, of what it means to be compassionate: 'to suffer with' (com-passion). Our nation has prided itself on developing ways to care for the terminally ill that have been envied the world over. Hundreds of doctors from abroad every year come to see how British palliative care has developed new and creative ways of relieving suffering, restoring dignity and hope to the dying. This bill would undermine the efforts of so many dedicated NHS and Hospice staff to continue to provide the personally costly service of caring for the dying.

Advances in palliative medicine mean that many of the unpleasant symptoms experienced during terminal illness can be relieved or substantially alleviated. We acknowledge that palliative care doesn't work for every patient. Experience in the hospice movement has shown, however, that restoration of dignity through creative care is possible for the vast majority.

Regrettably such a standard of care is not yet available to every dying patient. The recent report of the Commons Health Committee on palliative care recommended that more should be done to develop palliative care and improve accessibility. The disparities in regional distribution of services also need to be addressed and effective training made more widely available.

A study of over 1,000 doctors, nurses and social workers showed a negative correlation between willingness to endorse assisted suicide and knowledge of symptom management.[23] If assisted dying is legalised, the incentive for creative caring will decrease. Additionally, where doctors do not have good knowledge of symptom management, there will be an increased tendency to see death as the 'treatment' of choice.

The European Association for Palliative Care has re-affirmed its opposition to the legalisation of euthanasia.[24] If care is aimed at achieving 'the best possible quality of life for patients and their families' by focusing on a patient's physical, psychosocial, and spiritual suffering, requests for assisted dying are extremely uncommon. The answer is not to change the law, but rather to improve our standards of care.

Section Two - specific critique of the bill

1. The definition of 'terminal illness' in section 1(2)[25] - does it include only illness that despite treatment would result inevitably in the patient's death within a few months (eg. disseminated cancer, motor neurone disease etc), or does it include illness that would result inevitably in the patient's death within a few months if not treated (eg. severe asthma, COPD, diabetes, many infections, congestive heart failure, peritonitis, severe psychoses, some chronic inflammatory conditions, anorexia etc)? A patient with one of these latter conditions might argue that they did not want to be treated, and that by virtue of then having a 'terminal condition' might request assisted dying.
   
   The state of Idaho in 1977 passed a law defining a terminal condition as 'an incurable physical condition caused by disease or illness which …shortens the life of the patient.' This could include almost any medical condition. Dr. Jack Kevorkian's definition was 'any disease that curtails life even for a day.'
   
2. The definition of 'unbearable suffering'[26] is not objectively defined. Some patients find symptoms that most consider tolerable to be unacceptable.
   
3. Section 7 introduces a legal obligation for doctors with a conscientious objection to refer any patient requesting assisted dying to doctors with no conscientious objection. This amounts to forced complicity, and presumably those who refuse to comply are thereby committing an offence under the Act?
   
4. Section 7(2), whereby an attending physician who conscientiously objects, is obliged to refer the patient to another attending physician makes a mockery of the definition of attending physician given in the bill as the doctor who has 'primary responsibility for the care of the patient'.
   
5. The fact that assisted dying can be carried out on the authority of two doctors without any further review or appeal until after the patient is dead (section 13(2)) virtually ensures that anyone requesting assisted dying persistently enough will eventually receive it.
   
6. Under the bill there is no need for the four people involved in the assisted suicide process to have met the patient before and only the solicitor and witness have to satisfy themselves of his/her identity. The laxity of these provisions will encourage the foundation of special clinics to streamline the process, providing the requisite personnel and allowing completion of the declaration in a single visit, with a further visit two weeks later for the assisted dying procedure.
   
7. Psychiatric referrals (section 8) to assess whether the patient is suffering from a psychiatric or psychological condition causing impaired judgement are only required under the Act if in the opinion of the attending or consultant physician the patient may not be competent. But the attending or consultant physician may lack the skill to assess competence or impaired judgement, especially if the latter is secondary to depression.
   
8. Doctors are protected from prosecution under the Act (section 10(1-2)) if they are acting in 'good faith'. In other words, if the doctor believes that he/she is right in deciding that the patient fulfils the statutory criteria, they cannot be prosecuted. This makes nonsense of basic legal principles where the clinical or legal judgement of any doctor must be subject to objective independent assessment and scrutiny.
   
9. All historical ethical codes (eg. Hippocratic Oath, Declaration of Geneva, International Code of Medical Ethics, WMA Statement of Marbella) declare euthanasia and assisted suicide to be unethical. It follows logically that all doctors who perform or assist in either euthanasia or assisted suicide are in breach of those oaths and declarations. Section 10(3) is therefore nonsense. It also undermines the medical profession's right and responsibility to regulate the behaviour of its own members in this matter.
   
10. Wilful falsification or forgery of a declaration made with the intent of causing a patient's death (section 11(1)) will in the main prove impossible to establish because the key witness, the patient, will be dead. The same holds for witness statements.
    
11. Section 12 will encourage patients choosing assisted suicide or euthanasia in order to benefit their immediate families. It will also place huge pressure on patients to request early death in order that their families might benefit from insurance money, rather than being faced with medical fees for ongoing care.
    
12. Sending a copy of the file to the monitoring committee after euthanasia has been performed means that suspicious cases cannot be investigated prior to the death of the patient. Furthermore, section 16(1) gives the Secretary of State authority to dispense with record keeping about euthanasia altogether.
    
13. The declaration form contains no place for the signatures of attending and consulting physician.
    
14. Although this bill only seeks to establish euthanasia or assisted suicide as a right for competent adult patients, that may prove unsustainable. Once the Mental Capacity Bill comes into law there will be nothing to stop a patient enacting an advance directive for this 'treatment option' should they become incompetent and develop 'unbearable suffering' according to their own definition.

Conclusion

The above facts and arguments lead to the conclusion that:

1. Euthanasia and assisted suicide should not be legalised

2. The proposed bill is fundamentally flawed and would substantially change the way medicine is practised in this country

3. The bill should not proceed

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.