Memorandum by Ms Karen Sanders
I am the elected Chair of the Royal College
of Nursing Ethics Forum Steering Committee and a member of the
Royal College of Nursing Ethics Advisory Panel; however I am submitting
the following paper in a personal capacity.
I have been a registered nurse in the UK for
21 years. I continue to practice clinically as an agency nurse.
My area of clinical expertise is Intensive Care and Neurosciences
nursing, which I teach along with Healthcare Ethics at the London
South Bank University, London. I have previously been called to
give evidence to the Council of Europe and have lectured extensively
on this subject.
I would like to confirm that I have been a member
of the RCN for 10 years and in this time I have never publicly
criticised a formal RCN Parliamentary submission. As this is a
conscience issue and because I believe the submissions received
during the RCN's formal consultation process were overwhelmingly
in favour of changing the law, it is with a heavy heart that I
write expressing a contrary view to the RCN's submission.
In the interests of nursing and their patients,
I feel that it would be helpful to provide some background information
on why the majority of UK nurses support a change in the law.
The arguments are as follows:
1. UK nurses support a change in the Law.
2. Nurses in the UK and abroad already help
their patients to die.
3. The current law makes matters worse not
better.
4. Legislation would help the nurse and help
the patient alike.
5. Palliative care does not negate requests
for assistance to die.
6. Assisted dying legislation can help to
improve end of life care.
7. End of life treatment options are ethically
complex and not necessarily better or worse than assisted dying.
BACKGROUND
The Assisted dying for the Terminally Ill Bill
has been developed to enable a competent terminally ill patient
who is in unbearable suffering, the right to request assistance
to die. In order to have their request accepted, the patient must
meet stringent requirements and safeguards. Should their request
be accepted, be given help to die via the doctor prescribing medication
that the patient self-administers. If however the patient is unable
to self-administer medication (as would have been the case for
Diane Pretty), the doctor is allowed to do this for them.
The Bill also allows for terminally ill patients
to request and receive as much pain relief as they feel necessary.
This is an important aspect of the Bill because currently doctors
and nurses can be fearful of providing adequate pain relief due
to concerns about drug tolerance, addiction or fear of shortening
the patient's life.[166]
The remainder of this submission outlines key
reasons why the law needs to be changed.
1. UK NURSES
SUPPORT A
CHANGE IN
THE LAW
Nurses are the healthcare professionals who
spend most time with patients. We are the ones who day in and
day out, witness the severe and intolerable distress that can
accompany patients who are dying. Indeed for many patients, it
is not death they fear, but the disintegrating and often dehumanising
process of dying. It is perhaps safe to say that due to the time
nurses spend with patients they may feel most able to open up
to us about their fears and their needs at the end of life. In
the Netherlands, patients often first approach nurses about their
desire for an assisted death.[167]
It is therefore very important to take serious
note of the fact that in a recent Nursing Times Survey, one in
two nurses did not think it was unethical to administer a lethal
injection at a patient's request. Even more importantly, two thirds
of nurses supported a law on medically assisted dying. 83 per
cent of such nurses viewed this should be for terminally ill patients.
31 per cent believed they should be allowed to assist patients
to die.[168]
It is interesting to note that in Oregon, a
US state that has assisted dying legislation, 59 per cent of hospice
nurses and social workers working are supportive of the law. A
further 17 per cent remain neutral.[169]
2. NURSES
IN THE
UK AND ABROAD
ALREADY HELP
THEIR PATIENTS
TO DIE
In the aforementioned Nursing Times Survey,
one in four nurses had been asked by patients to help them die.
Forty-four per cent admitted to having administered prescribed
interventions that may have contributed to a patient's death.
Even when taking into account the principle of "double effect"
(which itself is ethically complex and unclear), we can safely
assume that on at least some occasions, the intention of these
actions would have been to actively bring about death. Elsewhere,
research has found that despite it being prohibited, nurses do
help their patients to die:
— Asch (1996)[170]
reported that 17 per cent of critical care nurses surveyed had
received patient or family requests to die. Sixteen per cent had
helped patients to die.
— Leiser et al (1998)[171]
reported on nurses working in HIV/AIDS. Thirty-seven per cent
had received a request to die and 15 per cent had helped a patient
to die.
— Ferrell et al (2000)[172]
found that over 20 per cent of oncology nurses had received a
patient request to die. Three per cent had helped a patient receive
a lethal prescription and 3 per cent had actually administered
a lethal injection.
— Volker (2001),[173]
Magnusson (2002)[174]
and Schwarz (2004)[175]
have all, via a more qualitative approach, found nurses to both
receive requests for assistance to die and actively help their
patients to achieve this.
3. THE CURRENT
LAW MAKES
MATTERS WORSE
NOT BETTER
Due to assisted dying being prohibited, nurses
who are faced with patient requests to die have no ethical codes
of practice or protocols (such as those in the Bill) to help guide
nurses in responding to such requests. There are also other far-reaching
concerns that result from prohibition of this practice. These
include:
1. Nurses who actually help terminally ill
patients to die, do so with no guidelines, safeguards or support.
2. Nurses who do help patients to die are
open to prosecution.
3. Without legislation and resulting safeguards,
vulnerable patients are at risk from abuse. This can perhaps best
be highlighted by studies that have found rates of non-voluntary
assisted deaths to be higher in countries that have no assisted
dying legislation (eg Australia[176]
and Belgium[177]
before legislation) than in the Netherlands.[178]
Academics have cited high rates of non-voluntary assisted dying
as a core reason for Belgium's 2002 assisted dying legislation.[179]
4. Patients may be assisted to die when alternatives
such as palliative care or pain relief, may have met their needs.
This concern has been highlighted by Magnusson's (2002) research.
He observed that:
"Prohibition drives assisted death underground.
At present, healthcare workers who perform euthanasia determine
the conditions for their own involvement. Secret euthanasia, without
appropriate regulation, raises many disturbing issues. "[180]
These disturbing issues include botched attempts
(20 per cent of cases Magnusson studied), patients being ambivalent
about going through with the process, and/or being given assistance
to die when patients are not near the end of their life.
5. Due to assisted dying being prohibited,
patients may be driven to seek assistance to die from their loved
ones. This can have disastrous consequences (eg see Sanderson,
2002).[181]
Some patients may even go abroad to places like Dignitas in Switzerland
to die. Dignitas do not appear to have any clear safeguards and
as a result, can help patients to die that would not meet the
requirements set up in the proposed UK Bill.
Legislation that incorporates strict safeguards
as found in the Assisted Dying for the Terminally Ill Bill, is
the only way to ensure these highly concerning issues do not continue
to occur.
4. LEGISLATION
WOULD HELP
THE NURSE
AND HELP
PATIENT ALIKE
A transparent legal system with regards to assisted
dying would ensure a far safer process than is currently in place.
Despite this fact, those opposed to assisted dying cite fears
that legislation would destroy patient and healthcare professional
communication and trust. All evidence actually shows the opposite
to be the case. For example, surveys find that in Europe, the
Dutch respect and trust their doctors most![182]
Further, a recent in-depth European wide study supports the fact
that openness and transparency of practice within end of life
care enables better communication between healthcare professionals
and their patients. When compared to doctors in other countries,
doctors in the Netherlands (followed by Belgium and Switzerland
where assisted dying is allowed) consistently communicated more
with patients and their families about end of life medical decisions.[183]
Doctors in Denmark, Sweden and Italy—countries that are
essentially closed to open discussion about, and practice of,
assisted dying—consistently communicated with dying patients
and their families least.
Belgium is the only country to include nurses
within their assisted dying legislation. It is interesting to
note that in this European study, Belgian doctors communicated
with nurses about end of life decisions more often than doctors
in any other country (this was followed by the Netherlands and
then Switzerland).
The current lack of guidelines for nurses on
how to deal with requests from patients to die combined with the
fact assisted dying is prohibited, serves to prevent nurses from
openly communicating and exploring the needs and fears of dying
patients. This is problematic, particularly when considering evidence
from Oregon. Work undertaken in Oregon has highlighted that when
terminally ill patients ask about receiving assistance to die,
the healthcare professional openly explores the reasons behind
their request. This usually results in the patient's needs being
met in other ways.[184]
Thus, regardless of whether a patient actually received assistance
to die, patients being able to openly communicate with healthcare
professionals about their needs and fears at the end of life may
actually be the most important aspect of legislation. Ann Harvath,
a nurse and Associate Professor and Co-Director of the Best Practice
Initiative at Oregon Health Science University, exemplifies this
point. With regards to Oregon assisted dying legislation (the
ODDA), she comments:
"One of the benefits that I believe has
come with the ODDA is that a number of hospice nurses report it
provides them with an opportunity to discuss the patient's fears
related to death. Nurses get so many questions from patients about
using a lethal prescription who have no serious interest in taking
a lethal prescription. It opens conversations to such questions
as `what are you afraid of'? Before assisted suicide, patients'
fears didn't always surface so readily. "[185]
5. PALLIATIVE
CARE DOES
NOT NEGATE
REQUESTS FOR
ASSISTANCE TO
DIE
Many professional organisations such as Macmillan[186]
and the National Hospice Council[187]
recognise that palliative care cannot meet the needs of all patients.
In this way, even if the best available palliative care was in
place across the whole of the UK, some patients will still want
assistance to die. This is particularly as reasons terminally
ill patients seek assistance to die are multiple and complex and
cannot be simplified into singular "treatable" issues
such as "pain" or "depression". For example,
issues concerning loss of control, dignity and being less able
to engage in activities making life enjoyable are the most commonly
cited reasons for Oregonians who receive assistance to die.[188]
Ganzini and Back (2003)[189]
recently wrote an article for Palliative Medicine outlining the
experience of Oregon. In this article they clarified that Oregonians
who receive assistance to die are not depressed. They further
commented how research has identified that there seems to be a
certain "type" of person who receives assistance to
die whereby:
"The value they place on control and
independence appears lifelong . . . When exposed to the exigencies
of the dying process, they face dreaded dependency and loss of
control not easily addressed by advanced directives and symptom
management. Responding with more palliative care is a double edged-sword:
Although data from Oregon support that palliative interventions
can lead some patients to change their mind about assisted suicide,
for other patients more care fuels fears of more dependence on
others."
6. ASSISTED DYING
LEGISLATION CAN
HELP TO
IMPROVE END
OF LIFE
CARE
Another argument against legislating for assisted
dying concerns fears that this will take away from the provision
of good quality end of life care. However all available evidence
from Oregon and the Netherlands suggests the opposite. Palliative
care in the Netherlands continues to improve and is of a high
quality.[190]
It has been reported that when assisted dying legislation came
into force in Oregon, it served as a "wake up" call
to medicine and fuelled progress in improving the quality of end
of life care.[191]
Oregon is a leading state in palliative care
and this care has improved since legislation.[192]
In Oregon, all patients who receive assistance to die are in receipt
of hospice/palliative care or have rejected or left this care.[193]
The UK Bill also ensures that any patient who requests assistance
to die receives access to palliative care.
7. END OF
LIFE TREATMENT
OPTIONS ARE
ETHICALLY COMPLEX
AND NOT
NECESSARILY BETTER
OR WORSE
THAN ASSISTED
DYING
Many healthcare professionals who oppose assisted
dying view end of life care options such as "double effect",
withholding and withdrawing of treatment and "terminal sedation"
as ethically superior and acceptable practice. Yet, as we know,
the reality of the situation is often far more complex and unclear.
The complexity of end of life decision making was recently highlighted
in a European study that explored end of life medical practices
in ICUs. The authors concluded that:
"The distinction between therapies intended
to relieve pain and suffering and those intended to shorten the
dying process or hasten death may not be so clear or easily determined.
Differentiation may be difficult as intentions are subjective
and private. "[194]
The palliative care option of terminal sedation
is increasingly being championed as an effective alternative to
assisted dying when faced with a patient who has intractable symptoms
and intolerable suffering.[195]
However not all patients want to be sedated until death.[196]
Terminal sedation is also an ethically complex practice, particularly
when accompanied with the active withdrawal of artificial nutrition
and hydration.[197]
Further and in complete contrast to assisted dying legislation,
within the practice of terminal sedation, the patient does not
need to be either competent or the decision maker. The practice
of terminal sedation also occurs with no national protocols or
guidelines and thus, little is known about its actual practice.[198]
As a result, it is much more likely that abuse of vulnerable patients
will occur as a result of terminal sedation than because of assisted
dying legislation.[199]
CONCLUSION
The vast majority of UK nurses support assisted
dying for the terminally ill. Assisted dying legislation, as highlighted
by evidence from Oregon and the Netherlands, works well. Where
assisted dying is prohibited, it still occurs—often with
no regard for safeguards, guidelines or support for nurses who
feel compelled to help their patients. Legislation improves communication
and trust within healthcare and helps ensure end of life care
continues to improve. The safeguards provided in the UK Bill are
extremely stringent and serve to protect vulnerable populations
far more than under the current legal framework. The pain relief
and palliative care filter guarantee that all patients who request
assistance to die have access to care options and treatments that
may mean patients' needs can be met in alternative ways.
For some terminally ill patients, alleviation
of their suffering and a dignified end will best be met via an
assisted death. Legislation combined with safeguards such as those
found in the UK Assisted Dying for the Terminally Ill Bill enables
such patients to receive their dignified end. It is essential
that as the healthcare group that spends the most time with our
patients, we have the humanity, the compassion, and the courage
to help ensure that dying people can have this final, dignified,
choice.
2 September 2004
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