APPENDIX 21
Memorandum by Voluntary Euthanasia Society
(PC 25)
(1) The necessity that all patients have
adequate pain relief at the end of their life. We are concerned
that this is currently not the case. We urge for a review and
resolution of this serious issue.
(2) The need for all healthcare professionals
to have "good enough" knowledge, awareness and understanding
about end of life issues and care. We are concerned that this
is currently not the case. To begin to rectify this situation,
we urge for better education on end of life issues for both undergraduate
and post-graduate healthcare professionals.
(3) The importance of pro-choice Living
Wills for dying patients to help ensure that professional-to-professional
and professional-to-patient communication is optimum, and that
patient's needs are met.
(4) The need for better palliative care
to continue to provide physical, social, emotional and spiritual
care at the end of life. We highlight our concern that palliative
care, particularly specialist palliative care is perhaps too focused
on medical/physical care at the expense of social, emotional/psychological
and spiritual care of a dying individual. We recommend a review
to clarify whether this is really the case, and if so, take measures
to rectify this accordingly.
(5) The need for palliative care to recognise
and work with the fact that despite the best quality palliative
care—this sadly, does not meet the needs of all dying people.
(6) The importance for patients in being
able to choose where they wish to die. We highlight our concern
that despite the fact that many patients wish to die at home,
not enough people are able to manage this.
1. All dying patients have the right to full
pain relief
1.1 The way we treat our dying says much
about the way we treat our living.
1.2 In the 21st century there are still
reports of many people dying in pain. For example, research finds
that 50% of all patients who died during hospitalisation "experienced
severe pain at least half of the time during their last three
days of life" (1). Cancer Bacup have also found that 70-80%
of cancer patients experience pain as a result of their cancer
or treatment (2).
1.3 This is a serious issue that needs to
be addressed.
1.4 We recommend that all healthcare professionals
who work with dying patients at some point in their careers (ie
every healthcare professional) need to be properly educated on
pain relief at the end of life.
1.5 We also recommend the development of
pain relief guidelines for all healthcare professionals, along
with suitable discussion and education of these guidelines. This
will help ensure that all patients have access to adequate pain
relief during their dying process.
2. All healthcare professionals need to have
good enough knowledge of basic (ie generic) palliative care. In
line with this, all patients need to receive adequate palliative
care throughout their dying process
2.1 The quality of our dying is as important
as the quality of our living.
2.2 We are concerned that there is a lack
of healthcare professional knowledge and understanding of the
dying process and the needs of the dying. For example, recent
research found medical students, junior hospital doctors and GPs
to lack training and understanding of, end of life care and their
role in this care (3).
2.3 Another study has found that patients
with lung cancer did not receive adequate palliative care. Heart
failure patients were given little information on their disease
or how long they had to live and there was also no co-ordinated
approach to their care for most (4).
2.4 It is clear that there needs to be a
serious re-think as to how services can be improved for all dying
patients.
2.5 As a first step, we recommend that all
healthcare professionals are trained to have basic knowledge of
end of life care (ie generic palliative care) and a basic understanding
as to how to provide this care.
3. Pro-Choice Living Wills are a positive
way to increase professional and patient communication, awareness
and understanding about needs and wishes at the end of life
3.1 A Living Will (otherwise known as an
Advance Directive) enables patients to state their medical treatment
wishes in the event that they should become seriously ill and
unable to communicate. Case law makes it clear that Living Wills
which set out clear terms regarding refusal of treatment are legally
binding documents. Thus for example, a patient can make an advanced
refusal of treatment when competent that remains valid and applicable
should they later become incompetent to make their own decisions
about medical treatment.
3.2 As the current case of Leslie Burke
who is challenging the GMC guidelines on withholding and withdrawal
of treatment highlights, people also need to be able to make a
legally enforceable request to have life-sustaining treatment.
This is why we strongly advocate pro choice Living wills that
enable the patient to be in control of medical decisions at the
end of life. The VES pro-choice Living Will was prepared by top
doctors and barristers and has been especially welcomed by the
disabled community, because it gives people the option of choosing
life-prolonging treatment. In line with this, dying individuals
need to have optimum choice in their care pathway and Living Wills
can help ensure that this occurs.
3.3 Living Will documents can help ensure
that there is increased communication and understanding about
patients' needs and wishes, both between professionals involved
in the care of a dying patient, and between professionals and
the patient themselves. This is with regards to for example, treatment
decisions throughout an individual's illness and DNR orders at
the very end of life.
3.4 We strongly recommend that professionals
and the public become increasingly educated and aware of pro-choice
Living Wills and their potential usefulness within end of life
care. We would also recommend that all healthcare facilities develop
clear policies on Living Wills. In line with this, it would be
of ultimate importance that once these policies are in place,
all health care staff have awareness and understanding of, and
respect for, these policies. In line with this, we strongly recommend
that the choice of life-prolonging treatment should become legally
binding on healthcare professions
4. Specialist palliative care provides wonderful
physical/medical care for dying patients, but there is also a
need to ensure that this is provided in balance with spiritual,
emotional and social care of dying individuals
4.1 We strongly endorse the palliative care
philosophy of physical, emotional, spiritual and social care of
a dying person. However, through our discussions with healthcare
professionals and patients alike, we are concerned that particularly
within specialist palliative care, there may sometimes be too
much of a focus on the "physical/medical" care of dying
patients.
4.2 It is crucial that all palliative care
is delivered as a "team" approach, and that all professionals
involved in a patient's care at the end of life (eg doctors, nurses,
psychologists etc) are included, and their views listened to and
respected. It is only if this is achieved that true holistic care
can be delivered.
4.3 We recommend a large-scale pluralistic
(ie multi-professional) study with professionals who work in palliative
care to clarify the validity (or otherwise) of our concerns regarding
the delivery of palliative care. If our concerns are validated,
we strongly recommend that this issue be addressed accordingly.
5. Despite the best palliative care in the
world, for some people this will not meet their needs. Palliative
care needs to be open to exploring and developing new ways to
respond to such people
5.1 The National Hospice Council (1) and the
BMA (2) both recognise that despite optimum palliative care, for
some people, this is sadly not enough.
5.2 Recent research by Linda Ganzini (3) in
the USA has found that despite optimum palliative care some people
will still opt for the ending of their life (ie patient assisted
suicide). For such people, the need for control over one's life
and the lack of dignity they can feel at the end of their life
cannot be over-estimated. Unfortunately for such people, the provision
of more palliative care can actually be a double edge sword (3,
4) that can lead them to feel an increased sense of frustration,
dependency and loss of control.
5.3 We believe that palliative care needs to
be open to exploring and understanding the reasons `why' this
is the case, and through this, develop and provide palliative
care services that can meet the needs of all people.
6. Individuals need to be able to live and
die in the place of their choice
6.1 Increasingly in our modern society, more
and more people are dying in hospital. This is despite the fact
that most people would prefer a home death.
6.2 Studies have found that approximately only
a quarter of patients with cancer die at home (9, 10). This is
despite evidence that a considerably higher proportion would choose
to die there (11, 12)
6.3 We strongly highlight the need for services
to focus not only on providing optimum end of life care for patients,
but also on enabling patients to die in their place of choice.
This will ensure that an individual's dying is of a high quality
and help relieve not only the suffering of the patient throughout
their dying process, but also the bereaved family who are left
behind.
February 2004
REFERENCES
1. Rich, B. 2000. A prescription for the
pain: The emerging standard of care for pain management, 26 Wm
Mitchell L. Rev. 1. Also Tucker, K. 2003. A piece of the
Puzzle: Bringing accountability to failure to treat pain adequately.
Journal of Palliative Medicine, 6 (4), 615-617
2. Cancer Bacup.
3. Barclay S., Wyatt P., Finlay I. &
Todd C. 2003. Caring for the dying: How well prepared are general
practitioners? A questionnaire survey in Wales. Palliative
Medicine, 17, 27-39
4. Murray et al. 2002. Dying of lung cancer
or cardiac failure: prospective qualitative interview study of
patients and their carers in the community. BMJ, 325, 929.
5. http://www.hospice-spc-council.org.uk
6. Medical Ethics Today: The BMA's handbook
of ethics and law. 2nd Ed. 2004. BMA Publishing Group
7. Ganzini L., Dobscha SK., Heintz MD. &
Press N. 2003. Oregon physicians' perceptions of patients who
request assisted suicide and their families. Journal of Palliative
Medicine, 6 (3), 381-390
8. Ganzini, L. 2003. From the USA: Understanding
requests for physician-assisted death. Palliative Medicine,
17, 113-4
9. Seale C. & Cartwright A. The year
before death. Avebury, Aldershot, 1994
10. Higginson IJ., Astin P. & Dolan
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11. Dunlop RJ., Davies RJ. & Hockley
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