Memorandum by The National Group of Palliative
Care Nurse Consultants
1. COLLECTIVE
STATEMENT
The National Group of Nurse Consultants in Palliative
Care brings together all the palliative care nurse consultants
in England to promote excellence in the field of palliative care
nursing. We are a reference group of expert nurses able to comment
on and influence the development of policy and advise on its implementation
in the field of palliative care.
We firmly believe that the law needs no change
to allow for euthanasia or any form of therapeutic killing to
meet the needs of people approaching the end of their natural
life. It is our view that no suffering is unamenable to relief
when a patient and family and expert practitioners work together
to tackle its complexities. It is our opinion, based on many years
of clinical and personal experience that this Bill is fundamentally
flawed and sets a dangerous precedent.
We believe that the participation of nurses
in helping patients to die fundamentally undermines the purpose
of nursing in its duty of care and erodes trust between nurse
and patient. Such a loss of trust could potentially increase suffering.
Nursing is defined by the Royal College of Nursing
(2003) as:
"The use of clinical judgement in the
provision of care to enable people to improve, maintain, or recover
health, to cope with health problems, and to achieve the best
quality of life, whatever their disease or disability, until death."
A key characteristic of nursing is its concern
with the whole person and the identification of "human responses
to actual or potential health problems" (International Council
of Nurses 1987). This means that the public expect a nurse to
have the ability and the duty to engage an individual in a relationship
of mutual trust, as well as providing for physical comfort. Thus,
the relief of suffering, whether physical, social, emotional or
spiritual is of central importance to the nurse-patient relationship.
The relationship of trust that exists between nurses and the public
is based on a dear understanding of the nature and quality of
the service provided by nurses.
This brings us to a critical issue in this debate,
and that is the motivation and values that nurses have in caring.
Our training emphasises care and encourages intuition and emotional
intelligence. This is of immense value in walking the path with
a patient. However, when the burden of witness is great and a
suffering is sustained or the skills to engage and manage it are
absent, the natural role that a nurse adopts is to identify with
and voice that "pain" rather than to step back and evaluate
it. This, however, does not translate into the commonly held myth
that 80 per cent of nurses support euthanasia. What it does imply
is that 80 per cent of nurses carry emotions accrued from entering
into an important, laudable, but unresolved psychological relationship
with the dying. Sadly, professional development and supervision
only addresses these matters of professional grief and burnout
if senior nurses have the skill to recognise and address them.
For example, we find repeatedly in the classroom that nurses,
regardless of their experience, over the years are deeply uncomfortable
with the thought that they may at one time or another have administered
an injection that, because it was the last, it must also have
been fatal.
Nurses are not good at analytical reasoning
because they are not trained to stand back from the burden of
witness to reflect on the strategy of care or issues in hand.
Rather they will respond to and act upon the raw emotion that
flows from the imperative to serve and care, which leads many
to consider euthanasia as a necessity because they do not know
how to manage suffering.
We now turn to our principle objections.
2. POINTS OF
PRINCIPLE
Unbearable suffering
The Bill states that it will allow:
. . . for a competent adult who has suffering
unbearably as a result of a terminal illness to receive medical
assistance to die at his own considered and persistent request;
and to make provision for a person suffering from such a condition
to receive pain relief medication."
1. We are gravely concerned as to how the
degree of suffering is to be measured. Unbearable is a subjective
term, open to interpretation. Patients, families and professionals
often have divergent views. Despite a growing body of literature
there is no reliable and valid way of measuring degrees of suffering.
We re-emphasise that there is no suffering that cannot be relieved
or removed if patients have the opportunity for expert clinical
support and care by suitably trained staff. We challenge the assumption
that the attending physician is able to determine that a level
of unbearability has been reached. In our experience suffering
is temporal and fluctuates.
2. The Bill's definition of suffering is
narrow, somewhat simplified, and in several places is confined
to the relief of pain. In contrast there is a growing literature
and our clinical experience which point to its complexity. Psychological,
spiritual, ontological or existential crises can all come under
the rubric of this experience (Dewar and Morse, 1995; George and
Martin 2004).
3. We argue that an appropriate response
to suffering, which is core to the human experience, is care,
commitment and presence. That by being present and accompanying
individuals on a difficult journey we can help them explore meaning
in their experience. Nurses affirming life dignify the individual.
In our experience the number of people for whom this has not been
possible, and have persistently asked to be killed is very small[148]and
despite their continued suffering they have welcomed and embraced
skilled and committed care from both generalist and specialist
staff, and most, if not all, changed their mind as their illness
progressed.
4. This Bill is a fundamental challenge
to values and purpose of nursing. Caring for the dying is core
and quintessential to nursing. In the minds of many, suffering
is analogous to dying. The notion that one is able to remove suffering
from dying is fanciful, and the idea that therapeutic killing
further helps this process has the potential to drive out nursing
from the care of the dying. Other times of human crisis at the
end of life where a nursing response is essential will also be
irrevocably compromised.
5. Another deep-seated fallacy in the Bill
is that the eradication of unbearable suffering through euthanasia
will lead to improved care for people who choose this option.
According to the Bill a patient need not inform his/her next of
kin. We recognise that this takes account of patients' rights
to confidentiality, but we are astonished that the Bill's drafters
and clinical advisers fail in any measure to register that suffering
is both an individual and collective experience. By removing the
burden of witness for families and by using euthanasia as a tool
to diminish suffering we absolve ourselves from responsibility,
devalue human life and dumb down nursing's duty to care for the
dying.
6. The Bill makes the assumption that end
of life care is physician led. This is an antiquated anachronism.
7. The conscientious objection clause is
wholly inadequate and fails to take account for the pivotal role
that nurses have in initiating discussions around end of life
care.
8. The Bill is incompatible with the principles
and practices of Palliative Care, which affirms life and intends
neither to hasten nor postpone death (World Health Organisation
2003). This perspective of palliative care has been informed by
many years' experience in clinical practice and only recently
embraced in national policy.
9. The Bill is incompatible with the current
policy direction (the availability of good palliative care for
all); we have yet to attain the sentiment of this policy in practice.
The intention that palliative care should be a robust alternative
to therapeutic killing is laudable but not attainable until tenets
of the modernisation agenda (accessibility; equitability, and
timeliness) are achieved. We have not achieved these policy objectives
by a long way. It would be wrong, therefore to allow this bill
to become law.
We now turn our attention to the implications
for nursing practice.
3. POINTS OF
PRACTICE
The Bill raises four major implications for
nursing practice.
3.1 Qualifying conditions
From experience we know that the qualifying
conditions required by the Bill are extremely difficult to fulfil.
In order for a patient to make a request for assisted dying they
need to be aware that they are dying. Outside the field of palliative
care very few patients are given this information explicitly[149].
A particular need for an improvement in communication skills amongst
health care professionals has been identified by the Department
of Health and training programmes are currently being rolled out
nationally. The knowledge and skills required to discuss the choices
available at the end of life, however, lie far in advance of those
covered by these training programmes. There are times, even in
specialist practice, where we fall short.[150]
In short, a workforce who already has major difficulties in discussing
simple questions about end of life care (eg preferred place of
care) would struggle to include the option of therapeutic killing.
We are offended that as a speciality the option of euthanasia
might be discussed with dying patients by colleagues who do not
have the advanced skills necessary to talk about other end of
life issues.
3.2 Issues of informed consent
Recent policy developments have reinforced the
importance of informed consent. Our professional code of conduct
demands that all patients have a right to receive information
about their condition in order that they might make informed choices
about available care and treatments (Nursing and Midwifery Council
2002). If euthanasia became lawful, nurses caring for the terminally
ill would be duty bound to ensure that patients were made aware
of assisted dying, whether they had requested it or not.
The implications of this fact on the nurse-patient relationship
are highly significant. If euthanasia were made a "moral
good" nurses' ethical responsibility would be turned on its
head. The potential for causing psychological, emotional or spiritual
distress and suffering to those who do not want to discuss assisted
dying is considerable. At a time when individuals are at their
most frightened and vulnerable, nurses would be required to discuss
death as a "care and treatment" option. As clinical
leaders we find this repugnant.
3.3 Implications for the practice of palliative
care
The Bill states that it is a requirement for
people seeking assisted death to be seen by a specialist in palliative
care. This requirement produces an ambiguous effect. On the one
hand it ensures that patients will be made aware of the palliative
care expertise available, but on the other hand it marries palliative
care with assisted dying. We take issue with the consequences
of this ambiguity.
First, the association between assisted dying
and palliative care will confuse people's perception of palliative
care. The work that has been done to develop an understanding
that palliative care is applicable throughout an illness will
be undone. The association with death will be re-established.
This will be to the detriment of our speciality and the work that
has gone in to establishing it at the very time that it is staring
to bear fruit. We have to recognise that palliative care is far
from the standard and quality it should be.
Second, for any practitioners who are motivated
enough to train in palliative care, the internal conflict and
discord between the values espoused in the Bill and those in authentic
specialist palliative care practice are unsustainable. This discordance
undermines inter-team working. The positive model of collaborative
and complementary working developed by many palliative care services
will be threatened and undermined. In addition we can anticipate
that the requirement for a consultation with a palliative care
specialist may have a very detrimental effect on Palliative Care
Teams with issues of conscientious objection and personal values
and views on this issue undermining teamwork and common team values.
Third, the conflicting agendas within the proposed
consultation with a palliative care specialist in the Bill will
lead to confusion with respect to the intent of the consultation—is
it to complete a requirement for the process of attaining assisted
dying or to assess how a person's suffering may be supported and
if possible relieved through palliative care provision. If it
is the former, it is not a palliative care assessment. If it is
the latter, then assessment takes at the very least a week, and
in proportion of the severity of the suffering, may take months.
The impression we are left with from the Bill
is at best lip service and at worst a parody. We are most disappointed
that the Lord Joffe and the VES who drafted the Bill clearly have
no understanding of the nature, purpose and complexity of authentic
palliative care nursing. Assisted dying has no place in palliative
care.
3.4 Preparing Acts
It is well known in the caring professions that
nurses, not doctors are the clinicians who look after patients
as they die. There is absolutely no recognition of this in the
Bill. If the Bill were to progress to the statute book then nurses
would undoubtedly be intimately involved at every stage: sensitive
listening and responding to patient's requests by alerting medical
colleagues to a request for assisted dying; supporting the patient
through the decision making process and acting as the patient's
advocate when required; it is also custom and practice that doctors
prescribe and nurses prepare and administer medication. This is
yet another example of an ill-considered piece of proposed legislation
as there is every likelihood that doctors will assume that nurses
will also prepare injections for therapeutic killing or administer
oral medications for assisted dying. It is nurses who attend to
the deceased, support the family through the process and through
to bereavement, and not infrequently who are left to field the
raw emotions of relatives and friends who may have been unaware
of the patient's death.
In Holland the lack of recognition of the breadth
and depth of these roles has caused significant confusion over
the legal status of the nurse's role in what are called "preparing
acts" (Hermsen and Kuunders 2004). There is a tendency to
view such acts as technical ones associated with the killing itself.
The wider counselling, supporting and comforting roles of the
nurse are far more significant. The nurse's role in the provision
of and contributing to decision making as equal partners with
our medical colleagues must be recognised and legally acknowledged
within the framework of the bill. Nurses are personally accountable
for their practice, answerable for their actions and omissions,
regardless of advice or directions from another professional (Nursing
and Midwifery Council 2002). This autonomy must be enshrined within
this legislation in order to prevent coercion and erosion of the
nurse's integrity. This has been the experience in Holland and
will become the experience in the UK.
4. CONCLUDING
COMMENTS
We would suggest that what is required to meet
the needs of those with unbearable suffering is a collective response
on behalf of health and social care providers, policy makers and
society in general to close the gaps in service provision and
to reduce inequities wherever they exist. These are widespread
and wholly unacceptable.
By allowing this Bill to pass an inevitable
societal pressure would ensue. As nurses we have a duty to protect
the most vulnerable in our society who as a result of such pressure
may be made to feel their lives of no value. We believe this can
clearly be seen in the Dutch experience where patients who have
not volunteered their consent or sought assisted dying have been
killed by doctors against their wishes for economic reasons such
as bed pressures (Hendin 2002). The potential for therapeutic
killing to be used as an economic health care option in an ageing
population and limited economic resources is of the greatest concern.
The legacy that a "bad death" leaves
in society is a destructive one and yet evidence exists to demonstrate
that skilful nursing care makes a significant difference to patients.
Skilled nurses can deliver care in a "friendly" manner
that encourages patients to talk intimately about their concerns
(Hunt 1992, May 1995). This is particularly important in the cultural
context of death and dying. Patients attach importance to such
relationships, value them and feel supported by them. Our efforts
should be focused on raising the levels of skill amongst the healthcare
team to relieve suffering not eliminating the problem by eliminating
the patient.
It is consensus view of this expert body of
Nurse Consultants in England that if the latter became an option,
we would have no choice but to leave nursing.
REFERENCES
1. Dewar A L and Morse J M (1995) Unbearable suffering:
failure to endure the experience of illness. Journal of Advanced
Nursing 22 (5), 957-964.
2. George R, Martin J (2004) Non-physical pain:
suffering in action. In: Royal College of Physicians. The effective
prevention and control of symptoms in cancer. RCP, London
(in press).
3. Hendin H (2002) The Dutch Experience. Issues
Law Med 17 (3): 223-46.
4. Hermsen and Kunders (2004) Nurses' role in
euthanasia in the Netherlands. International Journal of Palliative
Nursing Vol 10 (5): 249-250.
5. Hunt M (1992) "Scripts" for dying
at home-displayed in nurses', patients' and relatives' talk. Journal
of Advanced Nursing 17, 1297-1302.
6. International Council of Nurses (1987) Position
Statement. Geneva: ICN.
7. May C (1995) To call it work somehow demeans
it: the social construction of talk in the care of terminally
ill patients. Journal of Advanced Nursing 22 (3): 556-561.
8. Nursing and Midwifery Council (2002) Code
of Professional Conduct. London UK.
9. Royal College of Nursing (2003) www.rcn.org.uk/downloads/definingnursing/definingnursing-a5.pdf-199.8KB
10. World Health Organisation (2003) www.who.int/cancer/palliative/definition/en
3 September 2004
148 We can quantify this for the Committee at a later
date if required. Back
149
This point can be expanded for the Committee if required. Back
150
This point can be expanded for the Committee if required. Back
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