Chapter 1: Overview, Purpose and Research Methodology
1.3 Aims and objectives
Studies in the UK have found that the reasons the terminally ill want an assisted death include pain and anticipated pain, fear of indignity, loss of control and cognitive
impairment, and not wanting to be a burden.44 Similarly, a study in 2010 by Price et al
found that the reasons for a desire for assisted death among terminally ill patients are, i) social factors that included financial difficulties and lower levels of social support, ii) illness-related factors that included having a symptom burden that had a greater effect on the individual’s identity or emotions, and a lower sense of personal control and
control over treatment, and iii) a loss of dignity.45 There are many terminally ill patients
in England and Wales who suffer a protracted dying process.46 Some with debilitating
conditions choose to end their lives at a relatively early stage in their illness, whilst they
are still physically able to do so, resulting in them dying prematurely.47 This thesis aims
to address these concerns. It will be argued that there is a strong case for allowing competent patients who are terminally ill to make an autonomous request for physician- assisted suicide if they are experiencing a poor and unacceptable quality of life due to unbearable pain and suffering brought about by a terminal illness.
The thesis will examine the developments in English law that have had an impact on the law of assisted death to demonstrate that they have not met the needs of society,
especially the concerns of those seeking an assisted death in England and Wales. This thesis will also examine legally permitted end-of-life medical decisions in England and Wales. It will demonstrate that due to the inconsistencies noted above in section 1.2.3, the current prohibition on assisted death is legally and morally indefensible. It will be argued that a law which permits physician-assisted suicide in particular circumstances is desirable to regulate end-of-life decisions.
The social and ethical influences affecting the development of the law on assisted death in England and Wales will be considered in this thesis. These influences include a rise in individualism, an ageing population, the sanctity of life, a right to self-determination, medical paternalism, and personal autonomy. The impact of these influences on both
44
A Chapple et al, ‘What people close to death say about euthanasia and assisted suicide: a qualitative study’ (2006)32 Journal of Medical Ethics 706,706.
45
A Price et al, ‘Prevalence, course and associations of desire for hastened death in a UK palliative population: a cross-sectional study’ (2011)1(2) BMJ Supportive&Palliative Care 140.
46
Pretty (HL)(n41).
47
the law of assisted death, and the laws which govern end-of-life medical decisions will be examined. In regard to personal autonomy and self-determination, it will be argued that a law which permits physician-assisted suicide in particular circumstances will ensure that competent patients who are terminally ill are given a level of respect which is comparable to those who already influence the manner and timing of their death by refusing life sustaining treatment.
There have been repeated calls for law reform in England and Wales. Over the past 10 years, there have also been several draft Bills proposed to legalise assisted death for the terminally ill. These include Lord Joffe’s Assisted Dying for the Terminally Ill Bill
2004 (‘ADTI Bill 2004’).48 The House of Lords set up a Select Committee (‘2004 Select
Committee’) to examine the legal and ethical issues of this Bill on assisted dying, and to
make recommendations for any future Bill.49 For reasons discussed in Chapter Two, the
Bill was not tabled for a second time. In September 2010, Lord Falconer’s Commission on Assisted Dying (‘the Commission’) evaluated the present law and explored a
possible framework for assisted dying that might be acceptable to the general public.50
The Commission’s 2012 Report found that ‘the current legal status of assisted dying is inadequate and incoherent’ and that there is ‘a strong case for providing the choice of
assisted dying for terminally ill people’.51 Based on the recommendations of the
Commission’s 2012 Report, an All-Party Parliamentary Group on Choice at the End of
Life52 together with Dignity in Dying53 drafted a Bill to amend the law.54 The draft Bill
provided for competent terminally ill adults to have the option of an assisted death,
subject to strict upfront safeguards.55 After a period of public consultation from July to
48
Assisted Dying for the Terminally Ill HL Bill (2003-04) 17 (‘ADTI Bill 2004’).
49
Select Committee on the Assisted Dying for the Terminally Ill Bill, Assisted Dying for the Terminally Ill Bill [HL]
Vol I (2004-05,HL86-1) para269.
50
The Commission on Assisted Dying was not a governmental or parliamentary commission. See more details on the Commission at ‘About the Commission on Assisted Dying’ (Commission on Assisted Dying,2010)
<www.commissiononassisteddying.co.uk/about-the-commission-for-assisted-dying> accessed 2 August 2013.
51
Report of the Commission on Assisted Dying (Demos,2012) 285.
52
The APPG on Choice at the End of Life believes that provided sufficient legal safeguards are in place, mentally competent terminally ill adults should have the right to an assisted death. See APPG on Choice at the End of Life and Dignity in Dying, Safeguarding Choice – A draft Assisted Dying Bill for consultation <www.appg-
endoflifechoice.org.uk/pdf/appg-safeguarding-choice.pdf> accessed 23 July 2013.
53
Dignity in Dying supports the aims of the APPG on Choice at the End of Life and provides the secretariat to the Group. Refer to n35.
54 See All Party Parliamentary Group (APPG) on Choice at the End of Life and Dignity in Dying, ‘Frequently Asked
Questions’ <www.appg-endoflifechoice.org.uk/frequently_asked_questions> accessed 23 July 2013.
55
November 2012,56Lord Falconer redrafted this Bill, and introduced it as the Assisted
Dying Bill 2013 (‘AD Bill 2013’) on 15 May 2013.57 To inform the current law reform
agenda in England and Wales, the thesis will evaluate the ADTI Bill 2004, the
recommendations of the 2004 Select Committee,58 the Commission’s 2012 Report, and
the AD Bill 2013.
The thesis adopts the view that the current English law is out of step with public opinion. Recent opinion polls conducted in the UK consistently demonstrate a high
level of public support for assisted death for the terminally ill.59 The 200560 and 200761
British Social Attitudes (‘BSA’) surveys show that 80% of respondents thought that
assisted dying should be allowed for terminally ill patients. A July 2009 Populus poll for The Times newspaper similarly found that 74% of respondents supported physician- assisted suicide in particular circumstances, of which 95% thought that it should be
legal for people who are terminally ill.62 These opinion polls are relevant as they
indicate a perception by the public that their needs are not being met by the current law on assisted death in England and Wales.
The British public are also generally in favour of a law that allows physicians to assist the suicides of their patients i.e. physician-assisted suicide. This is demonstrated by Chappel et al’s 2006 study on assisted death which found that those contemplating suicide wanted to end their lives with medical help and in the company of family or
friends.63 It will be argued that by allowing physicians to assist in suicides, this would
address the issue of medical complications which may arise during a suicide and lower the risk of ‘botched’ or failed suicides.
The thesis will argue that a law permitting physician-assisted suicide that restricts eligibility to people with terminal illness would be in line with the current public
56
APPG on Choice at the End of Life and Dignity in Dying, ‘Bill consultation: Latest news’ <www.appg- endoflifechoice.org.uk/bill_consultation> accessed 23 July 2013.
57
Assisted Dying HL Bill (2013-14) 24 (‘AD Bill 2013’).
58
Select Committee on the Assisted Dying for the Terminally Ill Bill, Assisted Dying for the Terminally Ill Bill [HL] Volumes I, II and III (2004-05, HL 86-I, 86-II and 86-III).
59 Report of the Commission on Assisted Dying (n51) 195. 60
A Park and E Clery, ‘Assisted dying and decision-making at the end of life’ in Park A et al (eds), BSA: the 21st
Report (Sage 2005).
61
E Clery et al, ‘Quickening Death: the euthanasia debate’ in A Park et al (eds), NatCen Social Research, BSA: the
23rd report – Perspectives on a changing society (Sage 2007).
62
‘The Times Poll: CATI Fieldwork: July 17th-19th 2009’ (Populus).
63
opinion. In doing so, however, the thesis acknowledges the limitations on terminal prognosis. Clinical evidence shows that physicians are often inaccurate in their
estimation of a patient’s prognosis and life expectancy, and that assessing the terminal
phase is inherently difficult.64 The limitations on prognosis have also been highlighted in
foreign studies.65 In a 2000 American study on doctors’ prognoses for terminally ill
patients, the researchers found that physicians are often inaccurate in their prognoses,
and that the error is systematically optimistic.66 Similarly, in a 2001 research paper on
clinical predictions of survival, a group of Australian researchers noted that the
prognoses in terminally ill cancer patients are far more frequently over-optimistic about
life expectancy than they are overly pessimistic.67 It will be argued that, although the
terminal phase of an illness may not be known with absolute certainty, there is a need for an arbitrary definition of ‘terminal illness’ in the proposed law for physician-assisted
suicide, in order to minimise the likelihood of abuse.68
Opinion polls also show that there is less public support for making the option of
assisted death available to people with non-terminal life-limiting conditions. The 200769
and 201070 BSA surveys both found that more than 80% of the public support assisted
dying being made available for people dying of incurable illnesses, but only 45% support assisted dying for people with non-terminal conditions. The July 2009 Populus poll similarly found that of the 85% of respondents who supported assisted suicide under certain circumstances, only 65% were in favour for people with a degenerative condition who were not terminally ill; 56% were in favour of this for people who were suffering extreme pain but who were not terminally ill; 48% were in favour for people with a ‘severe physical disability’ who were otherwise healthy and 34% for ‘people who simply wish to die at the same time as a long-term spouse or partner who has a terminal
64
P Glare, N Christakis, ‘Predicting survival in patients with advanced disease’ in D Doyle et al (eds), Oxford
Textbook of Palliative Medicine (3rd edn,OUP 2004).
65
E Chow et al, ‘How accurate are physicians’ clinical predictions of survival and the available prognostic tools in estimating survival times in terminally ill cancer patients? A systematic review’ (2001)13(3) Clinical Oncology 209.
66 NA Christakis and EB Lamont, ‘Extent and determinants of error in doctors’ prognoses in terminally ill patients:
prospective cohort study’ (2000)320 BMJ 469.
67
Glare et al ‘A systematic review of physicians’ survival predictions in terminally ill cancer patients’ (2003)327 BMJ 195.
68
LO Gostin, ‘Drawing a Line Between Killing and Letting Die: The Law, and Law Reform, on Medically Assisted Dying’ (1993)21 J Law Med Ethics 94,98.
69
Clery (n61).
70 S McAndrew, ‘Religious faith and contemporary attitudes’ in A Park et al(eds), NatCen Social Research, BSA:the
illness’.71 As noted by the Commission’s 2012 Report, the results of these opinion polls
indicate public concern for those whose lives might be devalued in the eyes of society,
by the very fact of such an option being made available to them.72
Groups of people considered potentially vulnerable under a law permitting physician- assisted suicide will be identified in this thesis, and safeguards to protect them will also be examined. They include the disabled and the elderly. Those opposed to the
legalisation of assisted death often argue that were it to be legalised, the vulnerable may
feel pressured to request an assisted death.73 The argument is that if the vulnerable think
that their life is not of value to society,74they may be pressured to spare society, or loved
ones from the perceived hardship and distress of their care.75 Care Not Killing (‘CNK’),
an organisation which campaigns against the legalisation of euthanasia in the UK, believes that any relaxation of the current prohibition against assisted suicide in
England and Wales will leave vulnerable people without adequate legal protection, and
will forge a mindset that certain lives are less worth living.76 The thesis will consider the
possible impact of a law on physician-assisted suicide for terminally ill patients on the ageing population in England and Wales. The July 2009 Populus poll found that 90% of those aged 65 years and over (‘the elderly’) felt that assisted suicide should be legalised
for people who are terminally ill.77 Nevertheless, it will be argued that the proposed law
should have strict safeguards to protect the elderly who might in turn be vulnerable under such a law.
Depression is another source of vulnerability that will be explored. Studies have found a close relationship between terminal illness, depression and the desire for hastened death. In Ganzini et al’s 2000 study of physicians’ experiences with Oregon’s law on
physician-assisted suicide, approximately 20% of requests for physician-assisted suicide
71
‘The Times Poll: July 17th-19th 2009’ (n62).
72
Report of the Commission on Assisted Dying (n51) 292.
73
BD Onwuteaka-Philipsen et al, ‘Dutch Experience of Monitoring Euthanasia’ (2005)331 BMJ 691.
74
JC D’Oronzio, ‘Rappelling on the Slippery Slope: Negotiating Public Policy for Physician-Assisted Death’ (1997)6(1) Cambridge Quarterly of Healthcare Ethics 113.
75
EL Csikai, ‘Euthanasia and Assisted Suicide: Issues for Social Work Practice’ (1999)31(3) J Gerontological Social Work 49.
76
Care Not Killing (‘CNK’) is a UK-based alliance of individuals and organisations established in 2005. It brings together disability and human rights organisations, healthcare and palliative care groups, and faith-based organisations. See <www.carenotkilling.org.uk> accessed 10 June 2013.
77
came from depressed patients.78 Chochinov et al’s 1995 Canadian study on the desire for
death in the terminally ill similarly showed that a ‘serious’ desire for death was
associated with a diagnosis of depression. The study found that 8.5% of 200 terminally ill patients had a ‘serious or pervasive’ desire for death. Of these patients, 58.8% had a diagnosis for depression compared with only 7.7% for those patients with no such
desire.79 A similar and more recent study in the UK found 14% of 300 terminally ill
participants to have a desire for death, out of which 63.6% had some form of depressive
disorder.80 It will be demonstrated that depression is often undetected by physicians, and
that undiagnosed or untreated clinical depression in patients may impair their decision- making capacity. To ensure that a patient’s request for assisted death is not affected by depression or any other mental disorder, the thesis includes a mandatory mental health evaluation within its proposed law for physician-assisted suicide.
Those opposing the legalisation of assisted death often argue that palliative care is a
viable alternative to assisted death.81 They argue that good palliative care can adequately
relieve the pain and distress of terminally ill patients. Palliative treatment includes
comfort care, hospice care and pain-control options.82 It aims to relieve the symptoms of
terminal illness, and focuses on a patient’s quality of life.83 The anti-euthanasia
organisation, CNK, promotes more and better palliative care for the terminally ill.84 The
thesis will demonstrate that palliative care is unable to provide all patients with total
relief from distressing symptoms.85 It will be argued that the legalisation of physician-
assisted suicide is needed to respond to the predicament of terminally ill patients, whose pain and suffering cannot be relieved by even the best palliative care.
The fear of many terminally ill patients is the possibility of dying in an undignified
manner.86 The thesis will show that a loss of autonomy and personal dignity, and a
diminished quality of life are often the more important concerns of those requesting
78
L Ganzini et al, ‘Physician’s experiences with the Oregon Death with Dignity Act’ (2000)342 N Engl J Med 557.
79
HM Chochinov et al, ‘Desire for Death in the Terminally Ill’ (1995)152 Am J Psychiatry 1185,1189-90.
80
Price (n45).
81
D Harris et al, ‘Assisted Dying: The Ongoing Debate’ (2006)82 Postgraduate Medical Journal 479.
82
R Korobkin, ‘Physician-Assisted Suicide Legislation: Issues and Preliminary Responses’ (1998)12 Notre Dame J.L.Ethics & Pub.Pol’y 449.
83
C Saunders, ‘Hospice’ (1996)1 Mortality 317.
84
See CNK (n76).
85
R Hoffenberg, ‘Assisted dying’ (2006)6 Clinical Medicine 72.
86
assisted death.87 Advances in medical technology over recent decades have increased the
possibilities for managing and treating the pain and symptoms of the terminally ill.
However, medical technology often does nothing to improve a patient’s quality of life.88
Rather, it prolongs the dying process.89 Suffering and dying may be prolonged to the
point where the terminally ill decide that it is no longer worth living.90 It will be argued
that terminally ill patients should be able to make a request for physician-assisted suicide based on a personal assessment of their quality of life. This would be consistent with court decisions allowing the withholding or withdrawal of life-sustaining treatment from incompetent patients, which are similarly based on a judgement of the patient’s quality of life.
The thesis will show that English law is also out of step with legal provisions in other
jurisdictions around the world.91 A key factor influencing public opinion of the current
law in England and Wales is the laws of those other jurisdictions which permit assisted death in some form. By informing popular debate in England and Wales, these
jurisdictions are changing the views of society at large. For this reason, the thesis undertakes a comparative analysis of the laws and legal issues relating to assisted death in six other jurisdictions — the Netherlands, Belgium, Oregon (US), the Northern Territory (Australia), Switzerland, and Germany — to consider alternative provisions which might be adopted in England and Wales. The thesis will assess the impact of their laws on assisted death, and evaluate the efficacy of each jurisdiction’s approach to assisted death in the context of their particular cultural and legal background. One of the main objections against law reform in England and Wales is the so called ‘slippery slope’ argument — that if assisted death were legalised then it could not be efficiently monitored and controlled and will lead to error, abuse, and the violation of
the rights of vulnerable patients.92Disability rights organisations in the UK, such as Not
87
R Smith, ‘A Good Death’ (2000)320 BMJ 129.
88 M Otlowski, ‘Active Voluntary Euthanasia: Options for Reform’ (1994)2 Med.L.Rev 161. 89
ibid.
90
GS Neeley, ‘The Constitutional Right to Suicide, the Quality of Life, and the “Slippery-Slope”: an Explicit Reply to Lingering Concerns’ (1995)28 Akron L.Rev. 53,54.
91 HM Biggs, ‘The Assisted Dying for the Terminally Ill Bill 2004: Will English Law Soon Allow Patients the
Choice to Die?’ (2005)12 Eur J Health L 43.
92
Dead Yet UK93 and Scope,94 are opposed to the legalisation of assisted death on this
basis. They have expressed concern that even very limited legalisation for a small set of cases would lead to assisted death being practised beyond the group of people for whom
it was envisaged.Others argue that legalising assisted suicide may lead to the
permissibility of voluntary euthanasia95 and even to the acceptance of involuntary and
non-voluntary euthanasia.96They fear that vulnerable groups might become ‘targets of