Memorandum by Dr Colleen Cartwright and
Associate Professor Malcolm Parker
1(a) The authors
1. Dr Colleen Cartwright
Senior Research Fellow
Academic Unit in Geriatric Medicine
School of Medicine, The University of Queensland
Princess Alexandra Hospital
Brisbane Qld 4072
2. Associate Professor Malcolm Parker
Associate Professor of Medical Ethics
School of Medicine, The University of Queensland
Mayne Medical School
Herston Qld 4006
1(b) Background and experience
We are members of a research team which has
been investigating end-of-life issues for over 12 years, in Queensland
and the Northern Territory (Australia) and in an on-going study
with researchers in six European countries.
At the beginning of our work, the team gave
a commitment to stay professionally neutral on the issue of assisted
dying. All questionnaires and other study material have had to
pass the scrutiny of a multi-disciplinary advisory committee whose
members were known to hold strong viewpoints both in favour of
and against assisted dying. This has given our work credibility
in the field.
1(c) Reason for this submission
The research has convinced the authors of this
submission that legislation is necessary to legitimise and regulate
practices which occur reasonably frequently, currently in a clandestine
and sometimes inexpert manner. We stress that this submission
represents our personal views and not necessarily those of other
members of the research team, nor of the institution in which
If legislation is to be enacted to allow assisted
dying for terminally ill patients, we believe that it should be
as well-constructed as possible. Therefore, Part 2 of this submission
addresses matters of content and structure in the Bill which we
believe require amendment.
In Part 3 we present additional information
which we respectfully request the Select Committee to consider.
2(a) Purpose of the Bill
We contend that it is unnecessary and potentially
counter-productive for the issue of pain relief to be included
in a Bill concerning assisted dying. There is general agreement
in most developed countries, and in all mainstream religions,
that adequate pain relief should be provided to patients, including
those who are terminally ill. Indeed, some countries have legislated
a "right to palliative care" (Peretti-Watel et al,
2003), which of course includes provision of pain relief medication.
Other countries, including Australia, have legislated for the
protection of health care staff who provide palliative care, including
pain relief, to terminally ill patients if there is concern that
such care may hasten the death of the patient.
Inclusion of the issue of pain relief in the
purpose suggests that there is serious concern in the UK about
inadequate relief of pain in terminal illness. If this is so,
it requires urgent attention, both in professional education and
in alerting the community to their right to receive adequate pain
medication. Indeed, from a legal perspective, failure to provide
adequate pain relief may be regarded as abuse or cruelty. However,
we do not believe it belongs in this Bill; if it remains it may
reinforce the notion that adequate pain relief is some form of
euthanasia, which it clearly is not. In Australia and other parts
of the world, this erroneous belief results in patients being
left in pain at the end of their lives.
However, if the issue of pain relief remains
in the Bill, then the word "adequate" should be inserted
before "pain relief medication" in the first paragraph,
and Section 15 should be amended, as follows:
Rather than a terminally ill patient
being "entitled to request and receive such medication .
. .", it should be mandatory that such medication be provided,
unless the patient refuses it.
This section should also make it
clear that the pain medication is to be given even if there is
some risk that the patient's death will be hastened as a result.
2(b) Section 1 Authorisation of dying
Section 1(2) Definitions:
Assisted dying: While the words "providing
the patient with the means to end the patient's life" is
a clear definition of physician-assisted suicide, "ending
the patient's life" (ie euthanasia) requires elaboration.
For example, what practices are intended to be included in this
definition? Is it only meant to cover lethal injections? Does
it also include terminal sedation? Practices such as withholding
or withdrawing life-sustaining futile medical treatment, or providing
increased levels of needed pain relief medication, should be stated
as being clearly excluded in this definition.
In addition, the words "if the patient
is physically unable to do so" should be deleted from this
section. Some patients, while physically capable, may not wish
to take the action themselves, either because they fear that they
will not do it correctly or because they regard the final relief
of their suffering as part of their medical care, and wish that
to be provided by a doctor. To restrict this service only to those
who are not physically capable of committing suicide may increase
the distress and suffering of other terminally ill patients who
Terminal illness: The included definition
of "terminal illness" as ". . . likely to result
in the patient's death within a few months at most" is too
vague. What does "a few months" mean? We acknowledge
that accurate prognosis of time to death is often extremely difficult,
but contend that legislation requires specificity. In the Oregon
legislation relating to physician-assisted suicide, terminal illness
includes that the patient is expected to live for less than six
months (Roscoe et al, 2001).
The Queensland Powers of Attorney Act (1998),
which sets out the conditions under which life-sustaining treatment
may be withheld or withdrawn, defines "terminal" as:
"resulting in deaththe patient can reasonably be expected
to die within the next 12 months".
We recommend stipulating a period of six months.
2(c) Section 2 Qualifying conditions
Sections 2(d) and 3(d)
As the patient must decide that his suffering
is unbearable, rather than the physician concluding this, clarity
could be added by inserting additional words such as "from
statements made by the patient" after the word "concluded".
However, the definition of "unbearable suffering" in
Section 1, which includes the words "which the patient finds
so severe as to be unacceptable", may be sufficient.
2(d) Section 4 Declaration made in
There is usually a cost involved in having a
practising solicitor witness documents, which may prove prohibitive
for some patients. In Australia, a JP or Commissioner for Declarations
(whose services are free) may witness advance directives (although
obviously these are for future health care provision and not for
Section 4.3(a) and Section 4.4(a)
Why should the patient have to "prove [?]
his identity to the solicitor" (or other witness)? If the
patient says who he is, and the attending physician knows the
patient by that name, that should be adequate. After all, no one
else is going to be assisted to die but the person making the
Although Section 4 pertains to a Declaration
made in advance, and Section 4.8 states that the declaration shall
remain in force for six months, there is no statement as to whether
or not the declaration survives the patient's loss of competence,
if that occurs within the six month period. This should be made
2(e) Duties of physicians, and conscientious
Sections 7(2) and 7(3).
This Section appears to be more "active"
than would usually be required for a matter of conscience. Some
physicians would find even referring the patient to someone who
would assist him to die to be against their conscience. A better
option would be that anyone who has a conscientious objection
should not be obliged to participate but must not actively impede
a patient accessing such assistance (once it is legally available).
An official information service may be needed for people who want
Also, while the physician may or may not know
who "does not have such a conscientious objection",
to make such referral obligatory (ie "he shall . . .")
may put unfair pressure on the physician and may affect his future
2(f) Section 8 Psychiatric referral
We commend the drafters of this Bill for not
making a psychiatric referral compulsory for everyone requesting
assistance to die. It is generally accepted (albeit not universally)
that such requests can be entirely rational, given the patient's
condition, quality of life and belief system. In addition, since
psychiatric referral is not required for other, currently legal,
actions which can result in the patient's death (eg withholding
or withdrawing life-sustaining medical treatment), to make it
mandatory for assisted dying would be discriminatory.
2(g) Section 14 Monitoring commission
and reporting requirements
The requirement that the lay member of the commission
shall have "first hand knowledge or experience in caring
for a person with a terminal illness" is problematic and
may introduce bias, or at least an additional degree of complexity
into the process. For example, if the person witnessed a distressing
death of a loved one and, as a consequence, believes that assisted
dying should be readily available to everyone who requests it,
it may reduce the person's objectivity in assessing reported cases.
Conversely, if a person cared for someone under distressing conditions
for some time, and considers the patient to have been "very
brave", the member's assessment may be that assisted dying
was provided too easily. We accept that there should be a lay
member on the commission but suggest dispensing with the qualifying
We commend the requirement that the commission
"shall confirm to the attending physician concerned whether
the qualifying conditions have been met as soon as reasonably
possible ...". One of the authors of this submission (CC)
spent some time in the Netherlands and interviewed physicians
who had assisted patients to die, reported it as required and
then waited more than 12 months before being told that they had
met all requirements. This was a distinct disincentive to reporting.
Declaration (by patient)
Statement number six requires one of two parts
to be deleted. It would be better written as:
Please delete one of the following two statements:
I have decided to inform my family
of my decision.
I have decided not to inform my family
of my decision.
Signing the declaration
There is no provision for someone else to sign
on behalf of a competent patient who may be physically unable
to sign on his own behalf (eg because of a paralysing stroke which
may have affected his body while leaving his mind clear). This
should be added.
We respectfully submit the following matters
for the Committee's consideration:
1. Terminal sedation
A recent controversial addition to the assisted
dying debate is the issue of terminal sedation and its relationship
to euthanasia. Terminal sedation refers to the use of sedative
drugs to induce unconsciousness in terminally ill patients in
order to relieve suffering, when other attempts at relief have
failed. Usually this includes cessation of nutrition and hydration.
The practice has been described as "slow euthanasia"
(Billings & Block, 1996), with claims that it is ethically
worse than assisting the patient to die, because it requires patients
to linger for a few more days before they die (Singer, 2002),
with the potential for further suffering. Gauthier (2001:48) argues
that "with terminal sedation we are already legally permitting
and practicing something closer to active euthanasia than is commonly
We acknowledge that some skilled palliative
care physicians (eg Ashby, 2001) reject the contention that terminal
sedation causes death because in such situations it is not usually
possible to ascertain the relative causal contributions of disease,
physiological and pharmacological factors to the timing of death.
However, it appears that some health care professionals provide
terminal sedation as a substitute for euthanasia, while others
do not because they regard it as euthanasia, to which they are
opposed, with the result that treatment for intractable terminal
suffering may be underprescribed (Yanow, 2000).
2. The need for openness, honesty and accountability
The practice already occurs: There is
widespread acknowledgement that assisted dying already occurs
(Magnusson, 2002; Hoffenberg, 2000). Providing their responses
are confidential, doctors and nurses acknowledge that they assist
patients to die, including where it is not legal to do so (Douglas
et al, 2001; Clarke et al, 2001).
Need for legal protection: Legalisation
would protect doctors or nurses who already assist patients to
die and who do so as professionally as possible, from criminal
sanctions they now potentially face.
Need for open discussion/grieving: If
assisted dying were legalised it could be discussed openly, allowing
relatives and friends to also grieve openly. Because of the illegality,
there can be traumatic psychological consequences for family members
and others involved in assisting patients to die, including feelings
of guilt and fear of detection. Singer (1994:148), describing
a case of openly-conducted, active voluntary euthanasia in the
Netherlands, notes that the patient
had the best possible medical attention, right
up to the moment of death. Her family could be with her, and even
her priest. Nothing had to be furtive. There was no need to fear
failure. No-one had to lie awake afterwards wondering if the police
Development of better procedures: Currently,
assisted dying practices are totally unregulated. Decriminalisation
would allow the development of better practices, including doctors
working with pharmacists to develop a documented regimen of drug
use producing least side-effects. When euthanasia is practised
in secret, problems can, and do, occur, eg patients do not die
after being given all available medication, leading in some cases
to a family member having to "finish the job" by holding
a pillow or some other object over the person's face. The resulting
trauma is obvious and long-lasting (Magnusson, 2002).
Loss of respect for the law: Few cases
of assisted dying come before the courts and those that do are
treated leniently (Browne, 1990). If the law is not enforced,
the public loses respect for it.
3. Community's responsibility to terminally
The success of science and medicine in dramatically
reducing the number of deaths which occur from infectious diseases
and from cardiovascular diseases have, in turn, created a situation
where the majority of people will die from chronic illnesses.
In many cases this will be via a long, drawn-out dying process
that has the potential to produce great suffering, rob people
of their independence, control and dignity and place great burdens
on family and community resources.
We contend that the benefits conferred by medical
progress bring with them a concomitant responsibility to provide
an opportunity, through the medical profession and to agreed community
standards, for people to manage their own dying in a manner which
is consistent with their beliefs and values. This would include
provision for assisted dying.
4. Social justice
Proponents of assisted dying argue that certain
classes of people, eg those who are well-educated and in higher
socio-economic groups, who know who to ask and how to ask, have
access to assisted dying while the rest of the community does
not (Fraser & Walters, 2000). Others claim that it is discriminatory
that patients whose diseases make them dependent on technology
can control their time of dying by requesting treatment be withheld
or withdrawn, while patients who are not technology-dependent
do not have this option and should therefore be assisted to die
A related group of arguments include that there
is no moral difference between withholding or withdrawing life
support and providing assistance to die (Doyal & Doyal, 2001;
Parker, 2001), or that there is no intrinsic moral difference
between killing and letting die because both intention and outcome
are the same (Hoffenberg, 2000). Young and Yeo (1989) argue that
it is morally worse to prolong someone's suffering rather than
Some terminally ill patients are physically
unable to commit suicide (despite that not being illegal) and
are unable to have someone else assist them to die (because that
is illegal), which means that they are effectively denied private
options available to others (Fraser & Walters, 2000).
Vaux (1989:32) extends the social justice argument
to patients whose deaths have been protracted by a range of interventions
but who are then refused assistance at the end.
Logically and emotionally, we cannot intervene
at one phase and then be inactive at another, more painful phase.
We cannot modify nature and then plead that nature must be allowed
to run its unhindered course.
For the reasons given, we believe that passage
of the Bill would alleviate a small but significant area of social
5. We live in a democracy and the majority
Many studies and opinion polls demonstrate that
the majority of the community support the legalisation or practice
of assisting terminally ill patients to die if that is what they
want (Cartwright et al, 2002; Dickenson et al, 2002;
Cohen, 2001). Perron (1995) argues that the minority may choose
not to participate but should not deny the option to those who
6. If patients know assistance is available,
they may delay taking action or not take up the option at all
There are claims that some terminally ill people
kill themselves before they really want to, for fear of losing
control through hospitalisation or disability (Roy, 2002) and
that legalising assisted dying would give patients peace of mind
(Perron, 1995). Data from Oregon support the idea that some patients
gain comfort just from having a lethal prescription available
(Ganzini & Johnston, 1999).
In Summary: We submit that legislation
is required to regulate and remove the secrecy from practices
which already occur, to bring social justice to these practices
and to meet society's obligations to terminally ill patients,
Such legislation would almost certainly have wide community support.
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28 August 2004