Memorandum by the Voluntary Euthanasia
Society
1. INTRODUCTION
1.1 The Voluntary Euthanasia Society (VES)
was founded in 1935 by a group of eminent doctors, theologians
and lawyers. VES believes the patient should be the decision maker
at the end of life irrespective of whether he wishes to prolong
his life, or ask for medical help to die if terminally ill. It
is for this reason that VES is committed to securing a change
in the law so that a terminally ill person who is suffering unbearably
may ask for and receive medical help to die.
1.2 VES has around 55,000 members and supporters.
It is the foremost independent research organisation in the United
Kingdom on legal and human rights issues relating to end-of-life
decision making. VES regularly advises NHS Trusts, doctors and
lawyers on end-of-life decision making and advised the European
Court of Human Rights in the Dianne Pretty case on the comparative
legal position on assisted dying throughout Europe.
1.3 Currently in the UK many terminally
ill people die painful and distressing deaths. This is best understood
with reference to neurological illnesses such as Motor Neurone
Disease ("MND") and was noted by Lord Steyn in the Dianne
Pretty case:
"She is paralysed from the neck downwards.
She has virtually no decipherable speech. Her life expectancy
is low. She has only months to live. Yet her intellect and capacity
to make decisions is unimpaired. She wishes to be spared the suffering
and loss of dignity which is all that is left of her life for
her. She wishes to control when and how she dies."
1.4 The vast majority of people in the UK
(over 80 per cent) wish to see a change in the law so that a dying
person who is suffering unbearably can ask for and receive medical
help to die. The law at present prevents this choice. We recognise
that a small minority of our society is opposed to assisted dying—their
opposition in many instances being based on their religious beliefs.
While respecting their views in relation to their own lives and
deaths, we believe it would be undemocratic to allow this minority
to impose their beliefs on the majority of our society who do
not share their beliefs.
1.5 We share the view expressed by the General
Medical Council that it is for society as a whole, through the
democratic process, to determine whether, and on what basis, assisted
dying should be made lawful1. This view is shared by the BMA who
state: "although the medical profession has an important
voice in the debate, ultimately these decisions are for society
as a whole, not just doctors"2.
1.6 We welcome the House of Lords' decision
to consider Lord Joffe's Bill in detail. VES believes that regulating
the wishes of terminally ill patients by the law of murder and
the Suicide Act of 1961 is ineffective, out-dated and inhumane
and the Bill puts forward a considered alternative approach to
this important issue. The Bill gives terminally ill patients who
are suffering unbearably the option of medical help to die. It
will also better protect vulnerable people and provide guidance
to medical professionals who might otherwise have been criminalised
for their compassionate acts.
2. KEY DEVELOPMENTS
SINCE 1994
Since the House of Lords last considered end-of-life
decision-making (including medically assisted dying) 10 years
ago, there have been many significant developments including the
following:
2.1 Assisted dying has been decriminalised
and underpinned by rigorous legislation in Oregon (1997), the
Netherlands (2002) and Belgium (2002).
2.2 There is a wealth of data on assisted
dying, particularly from Oregon and the Netherlands (referred
to throughout this submission). This evidence demonstrates that
it is far better to provide for medically assisted dying within
a properly regulated system.
2.3 Surveys show that the majority of the
UK public, inclusive of elderly and disabled populations, support
medically assisted dying3. A recent NOP survey (August 2004) found
82 per cent of respondents support a change in the law. This included
81 per cent of Protestant and Catholic respondents4.
2.4 Many terminally ill patients support
medically assisted dying (73 per cent in a study by Wilson, 2000;
80 per cent in a study by Sullivan, 1997)5.
2.5 Many UK doctors and nurses now also
support a change in the law6. A Medix-UK survey (2004) found that
when asked to choose between criminal prohibition and legislation
to permit medically assisted dying, 56 per cent of doctors chose
legislation7. A 2003 Nursing Times' survey found that two
out of three nurses supported a change in the law8.
2.6 Patient choice is central to NHS policy
and patients increasingly wish to make their own medical treatment
decisions at the end of life9, as seen in the legal cases of Dianne
Pretty, Miss B and most recently, Leslie Burke.
2.7 Surveys, such as those by the Nursing
Times (2003), McLean (1996) and Doctor Magazine (1995)
show that doctors and nurses are being asked by their patients
for help to die10.
2.8 Surveys, such as those by The Sunday
Times (1998), McLean (1996) and Ward and Tate (1994)
also show that in the UK, doctors are already assisting their
patients to die11.
2.9 Three of the House of Lords Select Committee
members who were unable to support assisted dying legislation
in 1994 now support the Bill12.
2.10 The Law Commission has recently raised
concerns in connection with the Homicide Act 1957 and its application
to mercy killing13.
3. THE IMPACT
OF THE
CURRENT LAW
ON PATIENTS,
THEIR FAMILIES
AND HEALTHCARE
PROFESSIONALS
3.1 At the request of the Home Secretary,
the Law Commission considered the Homicide Act 1957 in its report
published on 6 August 2004. Currently, a person who ends the life
of a dying person who has asked for help to die, can be charged
with murder and if convicted receive a life sentence. This applies
even when the dying person is helped to die by a doctor acting
out of compassion. The Law Commission noted that: "at present,
in such cases, a conviction for murder, with consequent mandatory
life sentence, can only be avoided by a `benign conspiracy' between
psychiatrists, defence, prosecution and the court, to bring them
within diminished responsibility". They further stated: "it
is however a blight on our law that such an outcome has to be
connived at rather than arising openly and directly from the law"14.
3.2 The Suicide Act of 1961, which governs
England and Wales, is no better. This Act provides that any person
who assists in the suicide of another even if they are dying,
shall be liable to imprisonment for up to 14 years. However its
application is erratic and arbitrary15. This is despite the House
of Lords finding in the Dianne Pretty case, that the Director
of Public Prosecution could publish guidelines making clear the
types of cases he would not prosecute16. This Act is also the
harshest of its kind in Europe. Assisting a suicide is not a crime
in countries as diverse as Sweden, Finland, Switzerland, Germany
and France, and in the Netherlands and Belgium, where medical
help to die is underpinned by rigorous legislation17.
3.3 Evidence clearly shows that despite
it being a criminal offence, doctors assist their patients to
die 18. A Medix-UK survey (2004) found that 45 per cent of doctors
believed their colleagues actively help patients to die (a further
44 per cent were unsure; 4 per cent "would rather not say")
19.
3.4 Doctors who are asked by a terminally
ill patient for help to die can do one of two things: they can
ignore the request and risk undermining their relationship with
the patient and their patient consequently feeling abandoned20.
Alternatively, they can explore the request. If the patient still
wants help to die and the doctor gives that assistance, he risks
criminal prosecution.
3.5 In some instances, a terminally ill
patient may ask a loved one for help to die. Relatives can feel
compelled to help even though they may be prosecuted. The psychological
and emotional impact of helping a loved one to die in secret can
be immense. Perhaps even worse, when that help has not been successful,
the patient can be left in even greater distress and in a worse
physical condition21.
3.6 To end their suffering, dying patients
may take their own life, in some cases violently22. Seven per
cent of doctors in a Medix-UK survey (2004) reported that at least
one of their terminally ill patients had committed or attempted
to commit suicide in the last two years23.
3.7 Others like Reg Crew and John Close,
both of whom suffered from MND, may, as a last resort, travel
to Dignitas for help to die—an organisation in Switzerland
without proper regulation or safeguards24.
3.8 The use of the Suicide Act 1961 and
the law of murder to regulate a terminally ill person's wishes
at the end of life is deeply inhumane. Further it:
— Does not stop assisted dying. It
simply drives it underground where it takes place without transparency
or accountability (Meier 2003; Magnusson, 2002; Emanuel 1998;
Kohwles 2001; Ward and Tate 1994)25;
— Prevents an open discussion between
a doctor and a terminally ill patient about the end of that patient's
life, causing further anguish (Ryan 1998; Bascom and Tolle 2002)26;
— Denies terminally ill patients the
choice of medical help to die thereby causing great distress;
(Quill and Cassel 2003; Quill 1996)27;
— Compassionate doctors who, at the
request of a patient, help him to die, have to do so secretly
for fear of prosecution. This adds to the doctor's burden and
criminalises his compassionate behaviour (Kohwles 2001; Back 2002)28;
— The lack of transparency puts vulnerable
people at risk (Lee 2003; Emanuel 2002; Brock 2000)29.
3.9 A law which is not respected, even at
great risk to those who break it, is a law that needs changing.
4. PALLIATIVE
CARE AND
MEDICALLY ASSISTED
DYING
4.1 VES is committed to the improvement
of all palliative care, both in terms of resources and access,
and supports the recent House of Commons Health Select Committee's
recommendations30.
4.2 Palliative care should be standard care
for all terminally ill patients. However, medically assisted dying
should not be seen in opposition to palliative care. Rather, we
should adopt a patient centred approach, which provides all options
to dying patients, including access to excellent palliative care
and a medically assisted death as a last resort31.
4.3 Some commentators have argued that legalisation
would undermine palliative care service provision and its future
development32. However the evidence from both Oregon33 and the
Netherlands34 demonstrates that palliative care can successfully
work alongside the option of help to die. The vast majority of
patients who choose assisted dying under the Oregon Death with
Dignity Act 1997 (ODDA) are enrolled in hospice programmes35.
Oregon hospices continue to care for those who are considering
this option36. In the Netherlands, better palliative care has
been a core goal of medical policy since the mid 1990's and has
improved substantially since that time37.
4.4 In Belgium, legislation providing all
patients with the right to palliative care was passed in parallel
with assisted dying legislation38.
4.5 Research from both the UK (Seale and
Addington-Hall) and abroad shows that even with good palliative
care, some dying patients still suffer unbearably and want help
to die39. The BMA 40 the National Council for Hospice and Specialist
Palliative Care Services41 and Macmillan Cancer Relief42, have
all recognised that good quality palliative care will not meet
every patient's needs.
4.6 No amount of palliative care can address
some patients' concerns regarding their loss of autonomy, loss
of control of bodily functions and loss of dignity. An inability
to meet these needs arises not because of a failure of palliative
care, but because these are person-centred issues. These issues
most frequently lie at the heart of a request for help to die43.
5. CORE PRINCIPLES
OF THE
BILL
5.1 The Bill would permit a terminally ill
person who is suffering unbearably to ask for and receive medical
help to die. Such assistance should be viewed as a "last
resort" option, alongside other "last resort" palliative
care options (eg sedation at the end of life, withholding and
withdrawal of treatment, aggressive pain relief)44.
5.2 The Bill is very similar to the ODDA
but it is not a simple copy. Careful consideration has been given
to the experiences of patients, carers, doctors and nurses, as
well as vulnerable populations.
5.3 Autonomy and competence are key principles
at the core of virtually all medical treatment decisions. Patients
can, without safeguards, refuse to give consent to treatment even
if this will lead to their death. At the heart of this decision-making
process is a presumption of capacity and respect for the person's
autonomy45.
Munby J reiterated this point in the recent
case of Burke versus the General Medical Council on 30 July 2004
46.
He noted:
". . .Personal autonomy—the right
of self-determination—and dignity are fundamental rights,
recognised by the common law and protected by Articles 3 and 8
of the Convention [European Convention of Human Rights]. The personal
autonomy which is protected by Article 8 embraces such matters
as how one chooses to pass the closing days and moments of one's
life and how one manages one's death".
He further stated:
"Important as the sanctity of life is,
it has to take second place to personal autonomy; and it may have
to take second place to human dignity".
5.4 While autonomy is an important principle
in the Bill, it is not unfettered autonomy. The principle of autonomy
is counterbalanced by an array of safeguards.
5.5 Only competent adults, domiciled in
England and Wales, suffering unbearably from a terminal illness,
can make a request to a doctor for assistance to die. Only the
patient, not the doctor, can initiate the process. Before the
patient can proceed with his request, he must be seen by two doctors
one of whom must be a consulting physician who is a specialist
in the patient's condition. The prognosis must be confirmed, and
all other alternatives to assisted dying including palliative
care must be explored. Should competency be in question, the patient
will be referred for a psychiatric assessment. If the patient
cannot fulfil all the criteria, his request will fail47.
5.6 The importance of the patient acting
voluntarily is stressed throughout the Bill with a range of safeguards
that include a written declaration, which must be independently
witnessed by two adults one of whom shall be a practising solicitor48.
At any stage the patient can revoke his request 49.
5.7 The Bill provides that a specialist
in palliative care, who can be a doctor or a nurse, is required
to attend any patient who requests help to die, in order to see
if their needs can be met in an alternative way50.
5.8 The option of having a medically assisted
death can act as "an insurance policy", giving terminally
ill patients reassurance that, should their suffering become unbearable,
they can request and receive assistance to die. This can help
people live with less fear of the future, regardless of whether
they ever use this option 51. As Jim Rooney, a Motor Neurone Disease
sufferer who received a prescription under the ODDA but died naturally
from his disease noted, "Just knowing that this law is an
available option is very liberating for a person with my condition"52.
5.9 In response to the fact that some doctors
are uncomfortable with being directly involved in a patient's
death, the Bill only permits patient self-administration of medication
to hasten death unless the terminally ill patient is physically
incapable of ending his own life. This provision will predominantly
relate to people suffering from neurological illnesses such as
MND. Its key objective is to prolong life—no longer will
such patients make the decision to end their life just because
they are physically still able to do so. Instead, this provision
will enable them to continue to live and give them the reassurance
of an assisted death should their suffering become unbearable,
even though they are physically incapable of self administration.
5.10 No healthcare professional (such as
a doctor, nurse or pharmacist) with a conscientious objection,
is required to take part in assisting a patient to die53.
5.11 Section 15 of the Bill creates the
right of a patient to request and receive such medication as may
be necessary to keep him free, as far as possible, from pain and
distress. It is a safeguard against pain being a motivating factor
behind a request for help to die. In a Medix-UK survey 97 per
cent of doctors supported this right54. This is an important clause
for three reasons. Firstly, a proportion of patients (3-30 per
cent) still suffer from poorly controlled pain at the end-of-life55.
For example, a survey published by Cancer BACUP (2001) found that
77 per cent of cancer patients reported they suffered pain, 54
per cent were not involved in making decisions about their pain
control and 63 per cent had not discussed the different types
of medication available with their doctor56. Secondly, as noted
by Rogers and Todd in Palliative Medicine, clinicians can
underestimate terminally ill patients' distress and pain57. Thirdly,
Home Office proposals to reform the Coroner and Death Certification
Service are likely to create further problems around pain relief
at the end-of-life. Dame Janet Smith, Chair of the Shipman enquiry,
has suggested that investigators should be trained to "think
dirty" when looking into causes of death58. In the aforementioned
survey, 74 per cent of doctors said they would now be more nervous
about prescribing pain relief as a result of these proposed changes59.
6. RESPONSE
TO CONCERNS
EXPRESSED ABOUT
MEDICALLY ASSISTED
DYING
6.1 It is important to test the validity
of concerns in connection with medically assisted dying against
the experience and empirical data of countries and states which
permit medically assisted dying, most notably, the Netherlands
and Oregon. The Select Committee may therefore find it helpful
to visit Oregon and the Netherlands or invite relevant professionals
from these places to address the Committee.
6.2 In assessing this data, we think it
helpful to proceed on the basis that the humanity, integrity and
skills of doctors in both England and Wales and doctors in the
Netherlands and Oregon will not be significantly different.
6.3 Slippery slope
— We acknowledge that concerns have
been raised in connection with a "slippery slope". The
concern is that assisted dying legislation for competent terminally
ill adults will lead to a devaluing of human life and that vulnerable
people will become "victims" of this legislation60.
We have found no evidence to support these allegations61. We agree
with researchers such as Emanuel, Lee and Brock who have concluded
that assisted dying legislation would help ensure doctors adhere
to strict safeguards and thus protect vulnerable people62.
— Evidence from the Netherlands and
Oregon suggests that legislation will not lead to an "avalanche"
of assisted deaths. There has been no such increase in Oregon
or the Netherlands. Evidence from the Netherlands shows that year
on year roughly the same number of patients are assisted to die63.
— Further, the Bill has been very tightly
drafted and it would require new legislation to extend its scope.
6.4 Reasons for assisted dying
— In Oregon, research often led by
Dr Linda Ganzini has found that the primary reasons terminally
ill patients receive help to die are: loss of autonomy and dignity;
being less able to engage in activities; being ready for death;
having a poor quality of life; seeing life as existentially pointless;
avoiding dependence; and wanting control over the manner and timing
of death64. Pain is not a primary concern65.
— This research has also found that
such patients are more likely to be from a higher socio-economic
group, be more educated66, have strong personalities and are forceful
and persistent in their request67.
6.5 Competence
— Mental health professionals in the
USA have observed through their work that the thought processes
underlying the decision by terminally ill patients to ask for
and receive medical help to die are similar to the thought processes
of patients when deciding to refuse life-sustaining treatment68.
People who have a terminal illness can and do make rational and
reasoned decisions to ask for help to die (see for example, Fenn
and Ganzini 1999; Werth and Cobia 1995)69.
— Dr Ganzini and others have concluded
from looking at all the evidence that depression does not play
a role in terminally ill patients in Oregon who receive assistance
to die70.
6.6 Burden
— Evidence suggests that when patients
who receive assistance to die feel "a burden", this
is related to their frustration at being dependent on others during
their dying process, and is linked to losing autonomy71.
6.7 The effect on the medical profession
— There is no evidence that medically
assisted dying legislation has an adverse effect on the medical
profession.
— In Oregon, an unexpected benefit
of the legislation has been that it has helped to improve doctors'
knowledge and skills in connection with dying patients72.
— Professor Back and others have found
that based on their research and experience, the best outcome
for patients and their families is when the doctor is able to
discuss all the patient's concerns and requests, including any
request for help to die. If the doctor cannot be open to such
a discussion, the patient can feel abandoned and suffer further
distress72.
— A six country European study found
that the best communication between doctors and their patients
and families concerning end-of-life decisions, occurred in the
Netherlands74
— Out of eleven European countries
surveyed (including the UK), the Dutch have the highest regard
and trust for their doctors75.
— We have found no research to show
that people would distrust their doctors if medically assisted
dying was legalised76.
— Surveys show that where assisted
dying is permitted, society remains supportive of the legislation.
In a survey conducted in Oregon in August 2004, 74 per cent of
those surveyed have become more supportive since the ODDA took
effect (4 per cent less supportive)77. In the Netherlands, 81
per cent supported assisted dying (a further 7 per cent were neutral)78.
6.8 The "1,000" patient deaths in
the Netherlands
— The "1,000" cases of patient
deaths due to life ending acts in the Netherlands without explicit
request are often cited as evidence of abuse of assisted dying
legislation79.
— We note that this is a concern.
However, according to the most recent Government research from
the Netherlands, Onwuteaka-Philipsen has found no increase in
these types of cases over the last 10 years80. Further, it is
incorrect to say that these cases prove "abuse". The
authors of the 1991 Remmelink study that identified these "1,000"
cases noted: "In more than half of these cases the decision
has been discussed with the patient or the patient had in a previous
phase of his or her illness expressed a wish for euthanasia should
suffering become unbearable . . . The decision to hasten death
was then nearly always taken after consultation with the family,
nurses, or one or more colleagues. In most cases the amount of
time by which, according to the physician, life had been shortened
was a few hours or days only"81.
— Professor Luc Deliens and others
have argued that one of the benefits of assisted dying legislation
may be that doctors approach end of life decision making with
greater care82. In some countries which lack a properly regulated
and transparent system for medically assisted dying, doctors are
up to five times more likely to end their patients' lives without
their explicit request83. Where there is no transparency or regulation
concerning end of life practices (such as in the UK), it is possible
that vulnerable people are at greater risk84.
6.9 Reporting in the Netherlands
— The percentage of Dutch doctors reporting
assisted deaths continues to increase from 18 per cent in 1991
to 54 per cent in 200185.
— There is no evidence to indicate
that the failure to report reflects abuse or an increase of assisted
deaths86.
— Dutch doctors who fail to report
are not protected by their legal system. They are in the same
position as doctors in England and Wales who fail to comply with
the law on assisted dying, namely they are subject to criminal
prosecution.
— The Dutch have recently developed
a package of Government measures designed to improve reporting87.
— Irrespective of what the criminal
law provides in England and Wales, we know from countless surveys
that assisted dying does take place but, unlike Oregon and the
Netherlands, reporting remains at zero.
6.10 Safeguards in the Bill
— The Parliamentary Joint Committee
on Human Rights found the Bill's safeguards adequately protect
the rights of vulnerable patients88.
— The safeguards in the Bill are more
stringent than those in Oregon, the Netherlands and Belgium.
— These safeguards, when viewed in
the context of other end-of-life medical decisions where there
is no legislative framework or nationally agreed safeguards, are
carefully considered and comprehensive. These other end-of-life
medical decisions include decisions to withhold or withdraw treatment,
and to provide sedation at the end of life or aggressive pain
relief where consciousness levels/competency will be impaired.
6.11 The absence of similar safeguards in
other end-of-life decisions
— Researchers have noted that abuse
is more likely to occur in end of life decisions other than medically
assisted dying (eg sedation at the end of life, withholding and
withdrawal of treatment). This is because in such cases, the patient
may not be the decision maker89. These practices are not underpinned
by a legislative framework or even nationally agreed safeguards,
thereby exposing vulnerable populations to possible inappropriate
end-of-life decisions.
— Frequently, withholding and withdrawal
of treatment decisions lead to the ending of that patient's life.
Patients such as Mr Burke are concerned that when they can no
longer communicate, the decision could be made by medical practitioners
to withhold and withdraw treatment which could end his life. This
concern has been echoed by the Disability Rights Commission90.
— We endorse their concern and contend
that it is only when the patient is the principal decision maker,
as in the Bill, that vulnerable people can be adequately protected.
7. CONCLUSION
— Currently many people in the UK suffer
distressing and painful deaths. Many of these terminally ill people
would like medical help to die, but under the current law, such
help is a criminal offence;
— The wish of a dying person like Dianne
Pretty to receive medical help to die should not be regulated
by the Suicide Act and the law of murder. As recently recognised
by the Law Commission, "this is a blight on our law";
— Irrespective of what the law may
say, health professionals break it on a repeated basis out of
compassion and respect for the wishes of their terminally ill
patients;
— Currently, terminally ill people
whose suffering is unbearable may with or without the help of
a loved one, attempt to end their own lives sometimes with deeply
distressing consequences, not just for the patient but also the
relative. In an NOP survey conducted in August 2004, 50 per cent
of those surveyed were willing to break the law in such circumstances91;
— A law which is not respected, even
at such very real risk to those who break it, is a law which needs
changing;
— The general public, in repeated opinion
polls, have made it clear they wish to see the law changed;
— Evidence from Oregon and the Netherlands
shows that it is far better to provide for medically assisted
dying within a properly regulated system;
— Lord Joffe's Bill draws on the experience
of Oregon in particular. The Bill would not only deliver greater
patient choice to terminally ill people who are suffering unbearably,
but also provide clear guidance to the medical profession in these
circumstances and better protect the more vulnerable groups within
our community;
— The Bill will give patients better
end of life care. For the first time terminally ill patients who
need pain relief will have the legal right to request and receive
it. Further, for the first time, patients who are terminally ill
and ask for medical assistance to die, will have a guaranteed
right to be attended by a palliative care specialist;
— The Bill gives terminally ill people
"an insurance policy" of an assisted death, thereby
enabling them to continue to live without so much fear and anxiety
about their future. They know that if their suffering becomes
too much they can have help to die;
— At the most critical time in a patient's
life, the Bill will enable open and honest discussion between
doctor and patient of all the dying patient's desires and concerns;
— The Bill will relieve a considerable
burden from the shoulders of many medical professionals. They
will no longer have to act in secret out of a fear of prosecution;
— Finally, as noted by commentators
such as Professor Griffiths and Roger Magnusson, the choice before
the Select Committee is not between permitting or preventing medically
assisted dying. The choice is between making medically assisted
dying visible and regulated, or allowing it to continue "underground",
without any safeguards, transparency or accountability.
August 2004
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11 Ward, BJ and Tate, PA, "Attitudes among
NHS physicians to requests for euthanasia", BMJ 1994;
308: 1332-4
The Times and Sunday
Times Archive, "Focus: Doctor will you help me die?"
Sunday 15 Nov
McLean, S, "Survey of medical practitioners'
attitudes towards physician assisted suicide", May 1996.
12 Baroness Flather, Baroness Warnock and Baroness
Jay.
13 The Law Commission (Law Com 290), Partial
Defences to Murder, Cm 6301, August 2004. Refer to this PDF for
the full report: http://www.lawcom.gov.uk/files/lc290.pdf
14 The Law Commission (Law Com 290), Partial
Defences to Murder, Cm 6301, August 2004; section 1.2 page 7 and
2.34 page 23: http://www.lawcom.gov.uk/files/lc290.pdf
15 The Daily Telegraph, 24 August, 1996
The Observer, 4 December,
1994
See "Notes and references" provided.
16 Refer to Section 80 http://www.parliament.the-stationery-office.co.uk/pa/ld200102/ldjudgmt/jd011129/pretty-4.htm
17 See appendix one of the "Notes and References"
provided.
18 UK:
Ward, BJ and Tate, PA, "Attitudes among NHS
physicians to requests for euthanasia", BMJ 1994;
308: 1332-4
The Times and Sunday
Times Archive, "Focus: Doctor will you help me die?"
Sunday 15 Nov
McLean, S, "Survey of medical practitioners'
attitudes towards physician assisted suicide", May 1996
Abroad:
Magnusson RJ, Angels of death: Exploring euthanasia
underground. (Yale University Press, 2002)
Kohlwes, JR, Koepsell, TD, Rhodes, LA, and Pearlman,
RA, "Physicians' responses to patients' requests for physician-assisted
suicide", Archives of Internal Medicine 2001; 161
(5): 657-663
Emanuel, EJ, Daniels, ER, Fairclough, DL, and Clarridge,
BR, "The practice of euthanaisa and physician-assisted suicide
in the United States", JAMA 1998 (a); 280 (6): 507-513
Meier, DE, Emmons, CA, Wallenstein, S, Quill, T,
Sean Morrison, R and Cassel, CK, "A national survey of physician-assisted
suicide and euthanasia in the United States", NEJM
1998; 338 (17): 1193-1201
Meier, DE, Emmons, CA, Litke, A, Wallenstein, S and
Sean Morrison, R, "Characteristics of patients requesting
and receiving physician assisted death", Archives of Internal
Medicine 2003; 163 (13): 1537-1542
Mitchell, K and Owens, RG, "National survey
of medical decisions at end of life made by New Zealand general
practitioners", BMJ 2003; 7408 (327): 202-203
van der Heide, A, Deliens, L, Faisst, K, Nilstun,
T, Norup, M, Paci, E, van der Wal, G, van der Maas, PJ, "End-of-life
decision-making in six European countries: descriptive study",
The Lancet 2003; 362: 345-350.
19 Medix Poll Qr564, August 2004.
20 Quill, TE, and Cassel, CK, "Nonabandonment",
Annals of Internal Medicine 1995; 122 (5): 368-374.
Quill, TE, and Cassel, CK, "Professional organizations'
position statements on physician-assisted suicide: a case for
studied neutrality", Ann Intern Med 2003; 138 (3): 208-11.
21 See for example, Sanderson, M, A memoir: Wrong
Rooms (Scribner: London, 2002).
22 Ripamonti, C, Filiberti, A, Totis, A, De Conno,
F, and Tamburini, M, "Suicide among patients with cancer
cared for at home by palliative-care teams", The Lancet
1999; 354: 1877-78
Grzybowska, P, and Finlay, I, "The incidence
of suicide in palliative care patients", Palliative Medicine
1997; 11: 313-316.
23 Medix Poll Qr564, August 2004
24 http://www2.netdoctor.co.uk/news/index.asp?id=112660&D=23&M=6&Y=2004
See also "Notes and References" provided.
25 See references listed in 17 above. Particularly:
Emanuel et al, ibid
Magnusson, ibid
Kohlwes et al, ibid.
26 Bascom, PB and Tolle, SW, "Responding
to requests for physician assisted suicide: `These are uncharted
waters for both of us . . .'", JAMA 2002; 288 (1): 91-98
Sadowsky interviewing Ann Harvath: Hahttp://www.ohsu.edu/son/news/discovery03_4_7.pdf
Ryan, CJ, "Pulling up the runaway: the effect
of new evidence on euthanasia's slippery slope", Journal
of Medical Ethics 1998; 24: 341-344.
27 Quill, TE, A midwife through the dying process:
Stories of healing and hard choices at the end of life, (John
Hopkins University Press, 1996).
Quill and Cassel 2003, ibid.
28 Kohlwes et al, ibid
Back, AL, Starks, HM, Hsu, C, Gordon, JR, Bharucha,
A, and Pearlman, RA, "Clinician-patient interactions about
requests for PAS: A patient and family view", Archives
of Intern Med 2002; 16 (2):1257-1265.
29 Emanuel et al 1998, ibid
Magnusson, ibid
Brock, DW, "Misconceived sources of opposition
to physician-assisted suicide", Psychology, Public Policy
and Law 2000; 6 (2): 305-313.
30 House of Common Health Committee: Palliative
Care. Fourth report of session 2003-04, volume 1, July 2004.
31 Quill, TE, Lo, B, and Brock, DW, "Palliative
options of last resort: a comparison of voluntary stopping eating
and drinking, terminal sedation, physician assisted suicide, and
voluntary active euthanasia", JAMA 1997; 278 (23):
2099-2104
Quill, TE, Coombs Lee, B, Nunn, S, "Palliative
Treatments of Last Resort : Choosing the Least Harmful Alternative",
Annals of Internal Medicine 2000; 132 (6): 488-493
Quill 1996, ibid.
32 The Christian Medical Fellowship: http://www.cmf.org.uk/press_releases/joffebill3.htm
33 Goy, ER, Jackson, A, Harvath, TA, Miller,
LL, Delorit, MA, and Ganzini, L, "Oregon hospice nurses and
social workers' assessment of physician progress in palliative
care over the past 5 years", Palliative and Supportive
Care 2003; 1: 215-219
Tolle, SW, "Care of the Dying—Clinical
and financial lessons form the Oregon experience", Annals
of Internal Medicine 1998; 128 (7): 567-568
Tolle, SW, and Tilden, VP, "Changing end-of-life
planning: the Oregon experience", Journal of Palliative
Medicine 2002; 5 (2): 311-317
VES personal communication with Ann Jackson, Director
of the Oregon Hospice Association (OHA), 16th June 2004-08-27.
34 Korte-Verhoef, R, "Developments in palliative
care services in the Netherlands", European Journal of
Palliative Care 2004; 11 (1): 34-37
Kuin, A, Courtens, M, Deliens, L et al, "Palliative
Care Consultation in the Netherlands: A Nationwide Evaluation
Study", Journal of Pain and Sypmtom Management 2004;
27 (1): 53-60.
35 Oregon Department of Human Services (ODHS)
2004, ibid.
36 VES personal communication with Ann Jackson,
Executive Director of the Oregon Hospice Association, 17 Aug 2003
37 Korte-Verhoef, ibid
Kuin et al, ibid.
38 Confirmed by VES personal communication with
Professor Bert Broeckaert, Director of the interdisciplinary centre
for religious studies, Leaven, Belgium, 20 Aug, 2004.
39 Seale, C and Addington-Hall, J, "Euthanasia:
The role of good care", Social Science and Medicine
1995; 40 (5): 581-587.
Kohlwes et al, ibid
Ganzini, L, Nelson, HD, Schmidt, TA, Kraemer, DF,
Delorit, MA, and Lee, MA, Physicians' experiences with the Oregon
death with dignity act", NEJM 2000; 342: 557-63
40 Medical Ethics Today: The BMA's handbook
of ethics and law, Chapter 11, page 403. 2nd Ed., BMA Publishing
Group, 2004.
41 http://www.hospice-spc-council.org.uk/publicat.ons/text/euthanas.htm
This statement has since been removed from the National
Council for Hospice and Specialist Palliative Care website.
42 Macmillan Cancer Relief, End of life issues
position statement, Approved 23rd July 2003.
43 Ganzini, L, Silveira, MJ and Johnston, WS,
"Predictors and correlates of interest in assisted suicide
in the final month of life among ALS patients in Oregon and Washington",
Journal of Pain and Sympt Management 2002(a); 24: 312-317
Ganzini, L, and Back, AL, "From the USA: Understanding
requests for physician-assisted death", Palliative Medicine
2003(a); 17: 113-4
Ganzini, L, Harvath, TA, Jackson, Goy, ER, Miller,
LL, and Delorit, MA, "Experiences of Oregon nurses and social
workers with hospice patients who requested assistance with suicide",
NEJM 2002(b); 347: 582-88
Kohlwes et al, ibid
Lavery, JV, Boyle, J, Dickens, BM, Maclean, H, and
Singer, PA, "Origins of the desire for euthanasia and assisted
suicide in people with HIV -1 or AIDS: a qualitative study",
The Lancet 2001; 358 (9279): 362-367
WW, "Clarity?" The Lancet Neurology 2003,
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44 Quill, TE, Lo, B, and Brock, DW, "Palliative
options of last resort: a comparison of voluntary stopping eating
and drinking, terminal sedation, physician assisted suicide, and
voluntary active euthanasia", JAMA 1997; 278 (23):
2099-2104.
45 See "Notes and References" provided.
46 R (Burke) v The General Medical Council Queens
Bench Division on 30 July 2004 Clauses 213 (g),(h) and 80(4).
47 See Section 2 and Section 8 of the Bill.
48 See Section 4 of the Bill.
49 See Section 6 of the Bill.
50 See Section 3 of the Bill.
51 Muskin, PR, "The request to die: role
for a psychodynamic perspective on physician-assisted suicide",
Journal of American Medical Association 1998; 279: 323-328
See "Notes and References" provided.
52 Coombs Lee B (ed), Compassion in Dying: Stories
of dignity and choice, chapter 1, page 1, (New Sage Press: Oregon,
2003).
53 See Section 7 of the Bill.
54 Medix Poll Qr564, August 2004.
55 Rogers, MS, and Todd CJ, "The `right
kind' of pain: talking about symptoms in outpatient oncology consultations",
Palliative Medicine 2000; 14: 299-307
Larue, F, Colleau, SM, Brasseur, L, and Cleeland,
CS, "Multicentre study of cancer pain and its treatment in
France", British Medical Journal 1995; 307: 1034-37
Mercadante, S, Armata, M, and Salvaggio, L, "Pain
characteristics of advanced lung cancer patients referred to a
palliative care service", Pain 1994; 59: 141-5.
Sykes, J, Johnson, R and Hanks, GW, "ABC of
palliative care: Difficult pain problems", BMJ 1997;
315: 867-869
http://www.euro.who.int/HEN/Syntheses/palliative/20040723—1
56 CancerBACUP, Freedom from Pain: Pain Management
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57 Rogers and Todd, ibid
Larue et al, ibid
Chan, A and Woodruff, RK, "Communicating with
patients with advanced cancer", Journal of Palliative
Care 1997; 13 (3): 29-33
Ford, S, Fallowfield, L and Lewis, S, "Can oncologists
detect distress in their out-patients and how satisfied are they
with their performance during bad news consultations?", British
Journal of Cancer 1994; 70: 767-770.
58 Dame Janet Smith, Third Shipman Inquiry Report—Death
Certification and The Investigation of Deaths by Coroners, 14th
July 2003, http://www.the-shipman-inquiry.org.uk/thirdreport.asp
59 Medix Poll Qr564, August 2004.
60 Kass, L, "`I will give no deadly in drug':
Why doctors must not kill" in Foley K and Hendin H, eds.,
The case against assisted suicide (John Hopkins University Press:
Baltimore, 2002) p17-40.
61 See for example:
Oregon Department of Human Services (ODHS), 2004,
ibid
Onwuteaka-Philipsen, BD, van der Heide, A, Koper,
D et al, "Euthanasia and other end-of-life decisions
in the Netherlands in 1990, 1995 and 2001", The Lancet
2003; 362: 395-399
Haverkate, I, Onwuteaka-Philipsen, BD, van der Heide,
A, Kostense, PJ, van der Wal, G, van der Maas, PJ, "Refused
and granted requests for euthanasia and assisted suicide in the
Netherlands: interview study with structured questionnaire",
BMJ 2000; 321: 865-6
Muller, MT, Kimsma, GK, and van der Wal, G, "Euthanasia
and assisted suicide: facts, figures and fancies with special
regard to old age", Drugs and Aging 1998; 13 (3):
185-191
Wineberg, H, and Werth, JL, "Physician-assisted
suicide in Oregon: What are the key factors?", Death Studies
2003; 27: 501-519
62 Emanuel et al ibid
Brock, DW, "Misconceived sources of opposition
to physician-assisted suicide", Psychology, Public Policy
and Law 2000; 6 (2): 305-313
Lee, DE, "Physician assisted suicide: a conservative
critique of intervention", The Hastings Center Report
2003; 33 (1): 17
63 ODHS 2004, ibid
Onwuteaka-Philipsen et al 2003, ibid.
64 ODHS 2004, ibid
Ganzini, L, Dobscha, SK, Heintz, RT, Press, N, "Oregon
physicians' perceptions of patients who request patient assisted
suicide and their families", Journal of Palliative Medicine
2003(c); 6 (3): 381-390
Ganzini, L, Harvath, TA, Jackson, Goy, ER, Miller,
LL, and Delorit, MA, "Experiences of Oregon nurses and social
workers with hospice patients who requested assistance with suicide",
NEJM 2002(b); 347: 582-88
Ganzini, L, Silveira, MJ and Johnston, WS, "Predictors
and correlates of interest in assisted suicide in the final month
of life among ALS patients in Oregon and Washington", Journal
of Pain and Sympt. Management 2002(a); 24: 312-317
Ganzini, L, and Back, AL, "From the USA: Understanding
requests for physician-assisted death", Palliative Medicine
2003(a); 17: 113-4.
65 See above references.
66 ODHS, 2004, ibid.
Ganzini et al 2002a, ibid
67 Ganzini, L, Dobscha, SK, Heintz, RT, Press,
N, "Oregon physicians' perceptions of patients who request
patient assisted suicide and their families", Journal
of Palliative Medicine 2003(c); 6 (3): 381-390.
68 See: Brief Amicus Curiae Coalition of Mental
Health Professionals, Oregon versus Ashcroft: http://www.compassionindying.org/ashcroft—ruling/mentalhealth—brief.pdf
69 Fenn, D and Ganzini, L, "Attitudes of
Oregon psychologists towards physician-assisted suicide and the
Oregon Death with Dignity Act", Professional Psychology
1999; 30: 235-44
Werth, J and Cobia, D, "Empirically based criteria
for rational suicide: A survey of psychotherapists", Suicide
and Life-threatening Behaviour 1995; 25 (2): 231-40
Rogers, Guellette, Abbey-Hines, Carney and Werth
2001. "Rational Suicide: An empirical investigation of counsellor
attitudes", Journal of Counselling and Development,
79: 365
Kleespies, PM, Hughes, DH and Gallacher, FP, "Suicide
in the medically and terminally ill: Psychological and ethical
considerations", Journal of Clinical Psychology 2000;
59 (9): 1153-1171
70 Ganzini, L & Dobscha, SK, "If it
isn't depression. . .", Journal of Palliative Medicine
2003(b); 6 (6): 927-930.
71 Ganzini, L, Harvath, TA, Jackson, Goy, ER,
Miller, LL, and Delorit, MA, "Experiences of Oregon nurses
and social workers with hospice patients who requested assistance
with suicide", NEJM 2002(b); 347: 582-88
Oregon Center for Disease Prevention and Epidemiology,
Oregon's Death with Dignity Act: Three years of legalized physician-assisted
suicide, (Oregon Health Division: Oregon, 2001).
72 Dobscha, SK, Heintz, RT, Press, N, and Ganzini,
L, "Oregon physicians' responses to requests for assisted
suicide: a qualitative study", Journal of Palliative Medicine
2004; 7 (3): 451-461
Goy, ER, Jackson, A, Harvath, TA, Miller, LL, Delorit,
MA, and Ganzini, L, "Oregon hospice nurses and social workers'
assessment of physician progress in palliative care over the past
5 years", Palliative and Supportive Care 2003; 1:
215-219
Ganzini, L, Nelson, HD, Lee, MA, Kraemer, DF, Schmidt,
TA, Delorit, MA, "Oregon physicians' attitudes about and
experiences with end-of-life care since passage of the Oregon
Death with Dignity Act". JAMA 2001; 285 (18): 2363-2369.
73 Back, AL, Starks, HM, Hsu, C, Gordon, JR,
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about requests for PAS: A patient and family view", Archives
of Intern Med 2002; 16 (2): 1257-1265
Bascom and Tolle, ibid
Back, AL, and Pearlman, RA, "Desire for physician-assisted
suicide: requests for a better death", The Lancet 2001; 358
(9279): 344-345.
74 van der Heide, A, Deliens, L, Faisst, K, Nilstun,
T, Norup, M, Paci, E, van der Wal, G, van der Maas, PJ, "End-of-life
decision-making in six European countries: descriptive study",
The Lancet 2003; 362: 345-350.
75 Kmietovicz, Z, "R.E.S.P.E.C.T.—why
doctors are still getting enough of it", BMJ 2002;
324 (7328): 11-14.
76 Graber, MA, Levy, BI, Weir, RF, Opplinger,
RA, "Patients' views about physician participation in assisted
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77 Davis, Hibbitts, & Midghall Inc—August
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78 NIPO (Dutch Marketing Research Institute),
2001.
79 "Briefing notes on voluntary euthanasia
and assisted dying": http://www.spuc.org.uk/euthanasia/joffe/briefing.pdf
p6
80 Onwuteaka-Philipsen et al 2003, ibid.
81 van der Maas, PJ, van Deldon, JJM, Pijnenborg,
L, and Looman, CWN, "Euthanasia and other medical decisions
concerning the end of life", The Lancet 1991; 338:
669-674.
82 Deliens L & Bernheim JL 2003. Palliative
care and euthanasia in countries with a law on euthanasia. Palliat
Med 17 (5), 393-4.
Deliens, L, Mortier, F, Bilson, J, et al,
"End-of-life decisions in medical practice in Flanders, Belgium:
A nationwide survey", The Lancet 2000; 356: 1806-1811
Ryan, CJ, "Pulling up the runaway: the effect
of new evidence on euthanasia's slippery slope", Journal
of Medical Ethics 1998; 24: 341-344.
83 Deliens et al 2000, ibid
Kuhse, H, Singer P, Baume P, Clark, P, and Rickard,
M, "End-of-life decisions in Australian medical practice",
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84 See references in 82 and 29.
85 Onwuteaka-Philipsen et al 2003, ibid.
86 See `Notes and References' provided.
87 Sheldon, T, "New penalties proposed for
Dutch doctors who flout euthanasia law", BMJ 2004;
329: 131.
88 http://www.publications.parliament.uk/pa/jt200304/jtselect/jtrights/93/9307.htm
89 Mayo, DJ and Gunderson, M, "Vitalism
Revitalized", Hastings Center Report 2002; July-August:
14-21
Brock 2000, ibid
90 http://www.drc-gb.org/newsroom/newsdetails.asp?id=700§ion=1
91 NOP Survey 420936, "Choices", 23rd
July 2004.
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