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Doc. 10495
8 April 2005
Assistance to patients at end of life
Opinion1
Committee on Legal Affairs and Human Rights
Rapporteur for opinion: Mr Kevin McNamara, United Kingdom, Socialist Group
I. Conclusions of the committee
The Committee on Legal Affairs and Human Rights expresses some reservations on the report adopted by the Social, Health and Family Affairs Committee. It wishes therefore to propose several amendments to the draft resolution.
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II. Proposed amendments to the draft resolution
The Committee proposes the following amendments:
Amendment A (English text only):
In the draft resolution, paragraph 1, replace “pointed out in” with “recalls”.
Amendment B:
In the draft resolution, sub-paragraph 2.ii., delete “even”.
Amendment C:
In the draft resolution, paragraph 4, after “genuine policy of” insert “physical, moral and spiritual”.
Amendment D:
In the draft resolution, at the end of sub-paragraph 4.i, add the following text: “If, to relieve dying patients’ suffering, doctors are obliged to use forms of treatment which may have the side-effect of shortening their lives, they must so inform those patients if they are conscious, or a relative if they are not. Doctors are not entitled to cause death deliberately;”.
Amendment E:
In the draft resolution, at the end of sub-paragraph 5.ii, insert “by the doctor; the doctor must explain to the patient the consequences of the refusal of treatment. He must fully record this in the patient’s medical notes;”.
Amendment F:
In the draft resolution, sub-paragraph 5.iii., after “ “living wills” add ““or “advance decisions” “.
Amendment G:
In the draft resolution, sub-paragraph 6.i., delete “in the Netherlands and Belgium” and replace at the end “other countries” with “member states”.
Amendment H:
In the draft resolution, after sub-paragraph 6.ii., insert the following new paragraph:
“make an effort to determine the presumed wishes of patients who are no longer able to express their wishes, including through discussing the issue of advance decisions or through the appointment of a representative mandated by the patient to deal with medical questions (“representative for medical matters”). When discussing advance decisions, member states should bear in mind the safeguards around these; advance decisions dealing with life-sustaining treatment should be in writing and properly signed and witnessed;”.
Amendment I:
In the draft resolution, after sub-paragraph 6.iii, add the following new sub-paragraph:
“draw up, when they do not already exist, specific recommendations on patients who, without being terminally ill, may request that all treatment be stopped or restricted and on intensive care of the newborn;”.
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III. Explanatory memorandum
by Mr McNamara
Article 2.1 of the European Convention on Human Rights:
“Everyone’s right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.”
Article 8 of the European Convention on Human Rights:
“1. Everyone has the right to respect for his private and family life…..
2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.”
Recent European Case Law
1. Article 2, as set out above, contains a negative restraint on the State but also requires the State to take active steps for the protection of life. In the case of Osman v United Kingdom2 the European Court of Human Rights stated that:
“The Court notes that the first sentence of Article 2(1) enjoins the State not only to refrain from the intentional and unlawful taking of life, but also to take appropriate steps to safeguard the lives of those within its jurisdiction. It is common ground that the State’s obligation in this respect extends beyond its primary duty to secure the right to life….”
2. In Pretty v United Kingdom3 the European Court of Human Rights made it clear that euthanasia and assisted suicide were legitimately prohibited by the State under Article 2 of the European Convention on Human Rights (ECHR):
“The consistent emphasis in all the cases before the Court has been the obligation of the State to protect life. The Court is not persuaded that the ‘right to life’ guaranteed in Article 2 can be interpreted as involving a negative aspect…..it is unconcerned with issues to do with the quality of life or what a person chooses to do with his or her life…..nor can it create a right to self-determination in the sense of conferring on an individual the entitlement to choose death rather than life.
“The Court accordingly finds that no right to die, whether at the hands of a third person or with the assistance of a public authority, can be derived from Article 2 of the Convention.”
Furthermore, the ECHR did not consider that the UK’s blanket ban on assisted suicide is disproportionate in the context of Article 8:
“It does not appear to be arbitrary to the Court for the law to reflect the importance of the right to life, by prohibiting assisted suicide.”
The Way Forward: Parliamentary Assembly Recommendation 1418 (1999)
3. Rather than adopt the draft resolution currently under discussion, the Assembly Committee and all member States of the Council of Europe should reaffirm Parliamentary Assembly Recommendation 1418 (1999) on ‘Protection of the human rights and dignity of the terminally ill and the dying’.
4. As this Recommendation noted, the dignity of terminally ill or dying persons is best respected and protected by:
“i. recognising that the right to life, especially with regard to a terminally ill or dying person, is guaranteed by member states...
ii. recognising that a terminally ill or dying person's wish to die never constitutes any legal claim to die at the hand of another person;
iii. recognising that a terminally ill or dying person's wish to die cannot of itself constitute a legal justification to carry out actions intended to bring about death.”
5. While recognising the terminally ill or dying person’s right to self determination Recommendation 1418 acknowledges that the obligation to respect and to protect the dignity of a terminally ill or dying person derives from the inviolability of human dignity in all stages of life. Recommendation 1418 calls upon Member States to recognise and protect “a terminally ill or dying person’s right to comprehensive palliative care.” Much remains to be done in Member States to secure this right. In these circumstances calls for the decriminalisation of euthanasia as proposed by the rapporteur of the Social, Health and Family Affairs Committee are premature.
6. In paragraph 6 of its explanatory memorandum the rapporteur argues that the subject of euthanasia lies at the crossroads between “free will and religious belief”. The implication here is that the two are diametrically opposed when in fact free will and, in particular freedom of conscience, are fundamental to many of the great faiths. Such misleading language should be deleted.
7. In paragraph 7 the rapporteur argues “every survey confirms that euthanasia is practised in many countries, in proportions well in excess of what was previously believed.” The rapporteur frequently makes this assertion (see the draft resolution and paragraphs 34 and 35). At no point in either the draft resolution or the explanatory memorandum does the rapporteur provide substantive evidence to back up his disturbing assertion. Indeed, in paragraph 35 of his explanatory memorandum he argues that “anecdotal evidence abounds”. At paragraph 26 the rapporteur acknowledges that “there have been few large-scale empirical studies in Europe”. The Parliamentary Assembly must have substantial, independent and well-documented evidence if it is to consider this crucial issue with the seriousness it deserves.
8. The definition of euthanasia attempted in paragraph 8 is inaccurate and conflates legitimate end of life care with euthanasia. Paragraph 8 should be deleted. The definitions provided by the rapporteur in paragraphs 13, 14 and 15 are far more accurate.
9. In paragraph 16 the rapporteur expresses concern about the use of the word “euthanasia”. Expressions life “assisted dying” may be preferable for pro-euthanasia advocates as they help avoid the negative connotations that will inevitably be associated with “euthanasia”. However, expressions like “assisted dying” blur the boundary between euthanasia and palliative care, the latter being essentially about providing assistance in dying.
10. Euthanasia, in all its forms, can be accurately defined. To avoid any confusion it is essential that this debate is conducted using terminology that can be readily and accurately defined.
11. In paragraph 12 the rapporteur explains that “public opinion polls in several member states show that a majority are in favour of legislation to regulate euthanasia” and that legislators “must somehow respond to this challenge”.
12. Notwithstanding the fact that the questions asked in these polls are often loaded and misleading, in several member states public opinion polls have consistently shown that a majority are in favour of capital punishment. Legislators have not responded to this challenge by acceding to popular opinion but by seeking to inform the public of the dangers associated with state-sanctioned killing, not least the fact that the innocent may be victims. 4
13. Legislators should respond in the same manner to calls for the legalisation or decriminalisation of euthanasia and assisted suicide.
14. When analysing the empirical evidence from the Netherlands the rapporteur neglects to mention four important points:
15. Firstly, the three surveys which have been conducted in the Netherlands in 1990, 1995 and 20015 demonstrate that the frequency of ending of life without the patient’s explicit request has shown no decline over the years studied. In 2001, the most recent year for which statistics are available, 900 out of 3,800 cases of euthanasia or assisted suicide (approximately one-quarter) were without the patient’s explicit request.
16. Secondly, the rapporteur fails to mention that according to the latest official report on euthanasia in the Netherlands6, only 54% of cases of euthanasia were reported to the regulatory authority and that “life terminating treatment without explicit request of the patient is still seldom reported (less than 1%).” According to a press report, the low notification rate is because doctors wished to avoid the “administrative hassle” 7of reporting a euthanasia case and were concerned they might have breached the regulations.
17. Notwithstanding the difficulties in accurately estimating the number of cases that go unreported, this demonstrates that legalizing euthanasia does not necessarily create greater control over the practice. The Dutch situation demonstrates that legalizing euthanasia and assisted suicide, far from introducing greater control, simply introduces more euthanasia and more assisted suicide.
18. This disturbing trend is compounded by the statistics from Flanders, Belgium cited by the rapporteur in paragraph 31. “Of the 4.4% of all deaths resulting from the use of lethal drugs, 1.1% were cases of euthanasia, 0.1% physician-assisted suicide, and 3.2% ending of life without the patient’s explicit request. “(emphasis added).
19. Thirdly, it has recently been revealed that euthanasia is being practised on babies and infants in the Netherlands, despite the fact that euthanasia is technically legal in Holland only for patients aged over 12.8 Doctors at the Groningen hospital have admitted that at least 22 newborn babies have been put to death since 1997 based on the doctors’ own reports to public prosecutors. This information came to light in a recent report in the Dutch Journal of Medicine. The author of the report, Dr. Eduard Verhagen, the head of the paediatrics unit at Groningen University Hospital, said that doctors put to death between 10 and 15 infants a year.
20. Fourthly, in July 2001 the United Nations Human Rights Committee issued a report which expressed carefully-worded concern over the legalization of euthanasia in the Netherlands and its potential impact.9 The committee report said "such a practice may lead to routinisation and insensitivity to the strict application of the requirements." The committee also expressed scepticism over the very few negative assessments made in over 2000 cases of assisted suicide and euthanasia in the Netherlands. The report states: "The large numbers involved raise doubts whether the present system is being used in extreme cases in which all the substantive conditions are scrupulously maintained." In addition, the UN committee noted that Dutch monitoring of euthanasia detects abuses only after the patient has been killed and called for strengthening of mechanisms to catch violations in advance of death. The Human Rights Committee also urged a scrupulous investigation of reports that newborn infants with disabilities have had their lives ended by medical personnel.
21. Empirical evidence from the Netherlands and Belgium reinforces the argument that it is impossible to set safe bounds to euthanasia so as to ensure that only those who have expressed a persistent, voluntary and well-considered request are put to death.
22. In paragraph 33 the rapporteur cites evidence about the attitude of doctors to the legalisation of euthanasia. In this context it is important to cite the most recent independent survey of UK doctors by the Opinion Research Business (ORB), published on May 13th 200310. This survey revealed that:
• Almost three out of four doctors (74%) would refuse to perform assisted suicide if it were legalised.
• A clear majority (56%) also consider that it would be impossible to set safe bounds to euthanasia.
• To the question “As a doctor do you agree with assisted suicide?” 25% agreed, 60% disagreed and 13% were undecided.
• The number who rejected euthanasia was higher – 61% as compared with 22% in favour and 14% undecided.
• Not one palliative care doctor who responded to the survey would practice either euthanasia or assisted suicide.
• 66% of doctors considered that the pressure for euthanasia would be lessened if there were more resources for the hospice movement.
23. In paragraphs 36 to 40 inclusive the rapporteur sets out some of the criticisms levelled at euthanasia and the new legislation in the Netherlands and Belgium. In paragraph 41 the rapporteur goes on to say that the main arguments for euthanasia relate to personal autonomy. It should be noted that respect for personal autonomy is an important argument against euthanasia that the rapporteur neglects to mention.
24. If euthanasia or physician assisted suicide were legalized or partially decriminalized then this would have a profound impact on the personal autonomy of the medical profession who would have to meet the requests for euthanasia and physician assisted suicide.
25. Experience with abortion legislation across the Council of Europe demonstrates that the personal autonomy of medical professionals who have a conscientious objection to euthanasia will inevitably be infringed. In the European states where abortion has been legalised, there are now very few practising gynaecologists who are opposed to abortion. Abortion is such a standard gynaecological practice that it is nigh impossible to specialise in that field and refuse to carry out abortions. Doctors opposed to abortion have been forced to specialise in other areas where no such ethical conflict arises.
26. If euthanasia and assisted suicide were legalised or decriminalised we would witness a similar phenomenon in geriatric care, in palliative care and in the hospice movement – regardless of whether the legislation contained a conscience clause. Doctors opposed to these practices would gradually be squeezed out.
27. This, in return, would seriously damage trust between the overwhelming majority of patients, who do NOT want to be subject of euthanasia, and their doctors.
28. The UK Parliament’s Joint Committee on Human Rights has declared the conscience clause in a Bill which is currently being scrutinized by a House of Lords Select Committee, the Assisted Dying for the Terminally Ill Bill11, to be contrary to the European Convention on Human Rights under Article 9(1), respect for the individual’s right to freedom of thought, conscience and religion.
“What must be avoided, in our view, is the imposition of any duty on an individual physician with a conscientious objection, requiring him or her to facilitate the actions contemplated by the Act to which they have such an objection.”12
29. The definition of “passive euthanasia” in paragraph 46 is completely at odds with the definition in paragraph 15 (“withholding or withdrawal of life-sustaining treatment, with the intention of ending it”). In paragraph 46 the rapporteur concludes that it is “difficult to see the moral distinction” between what he calls passive and active euthanasia.
30. The rapporteur fails to distinguish the fundamental moral difference between whether the intention of the medical staff is to end the patient’s life (i.e. to kill him) or to respect the process of dying and to refrain from interfering into it by artificially prolonging the patient’s life. Undoubtedly there is a huge moral difference between these two categories, and the Catholic Church obviously only accepts the latter. 13
31. In paragraph 50 the rapporteur refers to a French Bill on end of life issues and patients’ rights. It is important to note that this Bill will not legalise or decriminalise euthanasia or physician assisted suicide. It is perfectly legitimate to withhold or withdraw medical treatment when it is considered that the burdens of such treatment outweigh the benefits, or where the patient is dying and the treatment would be regarded as unduly intrusive and inappropriate or where the risks of such treatment would be excessive. This is what the French Bill appears to provide. The fundamental difference is the purpose or aim of the action: the purpose is not to cause or hasten death, but death may occur as a side-effect.
32. Similar Government legislation is currently before the UK Parliament. The Mental Capacity Bill deals14 with end of life decision making and, like the French Bill, legislates for advance decisions or “living wills” as they are more commonly known.
33. Clause 25 of the Mental Capacity Bill provides that where an advance decision relates to life-sustaining treatment it must be in writing, signed by the patient and witnessed. Clause 26 of the same Bill provides that unless a medical professional is satisfied that an advance decision exists which is valid and applicable to the treatment in question he can treat the patient notwithstanding that the treatment given may contradict instructions contained in the advance decision. These are important safeguards.
34. In response to concerns that the Mental Capacity Bill might weaken the UK’s legal prohibition on euthanasia and assisted suicide the Government has inserted a clause into the Mental Capacity Bill, Clause 58, which makes clear that the legislation does not affect the law relating to murder, manslaughter or assisted suicide. The Government has inserted a further amendment into the Bill (section 4(5)) to make clear that where decisions are made about life-sustaining treatment the decision maker must not be motivated by a desire to bring about the patient’s death.
35. These safeguards against euthanasia and physician assisted suicide introduced by the UK Government into one of its own Bills must be contrasted with the situation in the Netherlands and Belgium. In an attempt to assuage concerns that the Mental Capacity Bill might legalise euthanasia the UK Prime Minister, Tony Blair, recently said; “What is right is to make it clear that someone's life cannot be ended intentionally.”15
36. In recent months a House of Lords Select Committee has been considering a Bill introduced into the UK Parliament by Lord Joel Joffe that seeks to legalise euthanasia. The Bill is entitled the Assisted Dying for the Terminally Ill Bill.16 Organisations opposed to the Bill include the British Medical Association, the Royal College of Nursing, the Disability Rights Commission and the Association of Palliative Medicine. Not one of the Royal Colleges that represents medical professionals in the UK has come out in support of the Assisted Dying for the Terminally Ill Bill.
37. As the palliative care movement was pioneered in the UK the rapporteur should take greater note of the position of the palliative care sector on euthanasia and physician assisted suicide. In paragraph 44, the rapporteur argues that “palliative care cannot in all circumstances take away unbearable pain and suffering.” In the UK at least, the palliative care and hospice sectors appear to disagree. Regard should be had to a recent briefing paper on euthanasia and physician assisted suicide by the Association of Palliative Medicine.17 In an article in the British Medical Journal the authors conclude that “the desire for euthanasia must not be taken at face value”:18
“Rather than focusing on assessing the mental competence of patients requesting euthanasia or determining clear legal guidelines, doctors must acquire the skills for providing good end of life care. These include the ability to ‘connect’ with patients, diagnose suffering, and understand patients’ hidden agendas through in-depth exploration. This is especially important as the tenor of care influences patients’ perception of hope and self worth. There is much to ponder over the meaning of a euthanasia request before we have to consider its justification.”19
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Reporting committee: Social, Health and Family Affairs Committee
Committee for opinion: Committee on Legal Affairs and Human Rights
Reference to committee Doc 9898 and reference No 2960 of 30 April 2004
Opinion approved by the Committee on 6 April 2005
Secretaries to the committee: Mr Drzemczewski, Mr Schirmer, Ms Clamer, Mr Milner
1 See Doc 10455 tabled by the Social, Health and Family Affairs Committee.
2 (1998) 29 EHRR 245.
3 Application No. 2346/02; 29th April 2002.
4 For example see the MORI website: http://www.mori.com/mrr/2002/c020823.shtml.
5 G. Van der Wal and P. Van der Maas, Chapter 19 of their report on euthanasia, 2003. See also Dr Bregje D Onwuteaka-Phillipsen et al, ‘Euthanasia and other end of life decisions in the Netherlands in 1990, 1995 and 2001’, The Lancet, 17th June 2003: http://image.thelancet.com/extras/03art3297web.pdf.
6 G. Van der Wal and P. Van der Maas, Chapter 19 of their report on euthanasia, 2003. See also Dr Bregje D Onwuteaka-Phillipsen et al, ‘Euthanasia and other end of life decisions in the Netherlands in 1990, 1995 and 2001’, The Lancet, 17th June 2003: http://image.thelancet.com/extras/03art3297web.pdf.
7 Report from the Expatica news website on 23rd May 2003; www.expatica.com.
8 Daily Telegraph, Monday 24th January 2005.
9 United Nations Human Rights Committee 72nd Session 27th July 2001; http://www.unhchr.ch/huricane/huricane.nsf/NewsRoom?OpenFrameSet.
10 Survey on Euthanasia and Assisted Suicide Prepared for ‘Right to Life’ lobby group. Results from 986 interviews 26th March – 9th April 2003. Opinion Research Business, 9-13 Cursitor Street, London, EC4A 1LL; www.opinion.co.uk.
11 see http://www.publications.parliament.uk/pa/ld200405/ldbills/004/2005004.htm.
12 see Joint Committee on Human Rights; Scrutiny of Bills Fifth Progress Report Session 2003-04 http://www.publications.parliament.uk/pa/jt200304/jtselect/jtrights/93/93.pdf.
13 By citing a pastoral letter from the Swiss Bishops on euthanasia and support for the dying, 2002, he mentions cases where the physician, without attempting to provoke death, endeavours to relieve a dying person’s suffering with palliative treatment whose foreseeable effects will bring about death”. He fails to recognise that death occurs in such cases as a side-effect and is not the objective of the action.
14 http://www.publications.parliament.uk/pa/ld200405/ldbills/013/2005013.htm.
15 http://www.publications.parliament.uk/pa/cm200405/cmhansrd/cm041215/debtext/41215-03.htm#column_1660.
16 see http://www.publications.parliament.uk/pa/ld200405/ldbills/004/2005004.htm.
17 The Patient (Assisted Dying) Bill: A joint briefing paper by the Association for Palliative Medicine and the National Council for Hospice and Specialist Palliative Care Services – May 2003. Presented in the House of Lords on 3rd June 2003.
18 Mak, Y.Y.W. Elwyn, G. and Finlay, I.G. ‘Patients’ voices are needed in debates on euthanasia’, BMJ 2003; 327:213-215; (26th July 2003).
19 Ibid.