'Let me make my own decisions' :
Ethical issues around autonomy
at the end of life
Simon Woods (PhD)
Policy Ethics and Life Sciences
Research Centre
Outline
•
•
•
•
•
Is there a
problem?
History of palliative
care and ethics
Understanding
autonomy?
Palliative care
values
Respect for
persons
Is there a problem
• ‘Dying’ is as old
as humanity – so
why is there a
problem?
• In the past the
dying person
knew the right
thing to do.
• Ars Moriendi
Is there a problem?
The contemporary
world:
• None of the
certainties of a
shared faith
• Many new
uncertainties
• Changed
expectations
• The cult of the ‘self’
• Underpinned by
‘legal rights’
mentality ‘It’s my
right’
• The promises of
medical
biotechnologies
• What money can
buy
History of palliative care/
history of ethics
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•
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•
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1959 Cicely Saunders writes Nursing Times article
1967 St Christopher’s Hospice opens
1969 Hastings Centre Established
1975 Balfour Mount coins ‘palliative care’
1979 The Principles of Biomedical Ethics by
Beauchamp and Childress first edition “unleashed”
the four principles of respect for autonomy, nonmaleficence, beneficence, and justice into the field
1987 Palliative Medicine becomes a medical
specialty in UK
1st Danish Hospice Sankt Lukas Hospice1992
History of palliative care/
history ethics
Hospice/ palliative care
•Recognition that medicine
was failing the dying
•Response to the ‘bad
death’
•Nurses as pioneers in
hospice care
•Cicely Saunders: Care of
the Dying: Nursing Times
Supplement 1959
Medical Ethics
• Recognised that medicine
was failing the patient
• Right to self-determination
• Autonomy
• Patients rights rather than
Doctor knows best.
Paternalism
Don’t worry
just leave it
all to me
Paternalism
Tender, loving, care!
‘You will have a bath
Mr Jensen, it will
make you feel much
better’
From: Every Woman's Encyclopaedia.
Autonomy
• Ancient Greek politics auto (self)
nomos (governing)
• Kant the autonomous self is capable
of thinking and reasoning
• Anglo-American/ Western Liberal –
principle of respect for autonomy
Autonomy
•The individual
•Sovereign self with
positive and
negative rights
•free from
interference
•Right to determine
one’s own life
Autonomy
• Underpins many
practices in
contemporary
health care
• Legal practices
premised upon
the right to selfdetermination
•
•
Consent
Confidentiality
Autonomy: for and against
•Implies a view of
the ‘isolated’
•Sets the boundary
individual
to permissible
•Under emphasises
intervention
relatedness
•Consent
•Can seem selfish
•Individual rights and and superficial
freedoms
(Consumer rights
and the free market)
Just let me make
my own
decisions
Mrs Andersen know her
own mind.
Let me make my own decisions
?
Sedate
me
Send me
home to
die
Resuscitate
me
?
I want
euthanasia
I don’t want
morphine
Don’t tell
my family
I am dying
Feed me
until the
end
?
Changes in palliative care
From care at the end of life to:
• Active management of progressive
chronic disease (not just malignancy)
• From palliative care to palliative medicine
– a greater willingness to actively
manage disease using medical
methodologies
• Up-streaming palliative medicine to
earliest point in the diagnosis of
progressive disease
Palliative Care Philosophy
Palliative care can promise a high
standard of professional clinical care
from specialists with expertise in
symptom management.
It cannot (and should not)
promise spiritual and psycho-social
care, treatment of the whole family, a
peaceful and reconciled death.
Randall and Downie (2006)
So palliative care is reduced to a form of
contractual medicine?
A common dilemma
‘Don’t tell him he is dying’!
Sitting on the arm of his chair she observed
my every move, anticipated every question
in the fear that I might let something slip.
And all the time in her eyes was written ‘I
know you are dying but we must never talk
about it’ and all the time written into his face
was the thought ‘I know I am dying but she
must never know’…
Values at the end of life
Autonomy
•Too much emphasis on the
individual in isolation
•Atomistic
•Legalistic
Palliative care ethics
•Dying is important
•Individuals are situated in a
network of relationships
•Respect for persons rather
than respect for individual
autonomy
•Care is a relationship and
not a contractual
arrangement
Autonomy and truth
Truth is not merely a matter of
words and we are likely to find the
particular truth that is fitted to our
patient’s need only in some kind of
relationship with him. (Saunders
1984:4)
Palliative care ethics
Our choices do not take place in a
purely individual setting... Guided by
the principle that life is of value until
its ‘natural’ end, with space for
mending relationships, and
honouring important values, by
competent ever-improving care... I
believe we should constantly
reiterate that this is the way to
respect patient’s and families’ true
needs. Their autonomy must be
seen in the context of society as a
whole.
Cicely Saunders
(1995)
The Good Hospice
Original Preface to the Danish Version
Anne Nissen, Chairperson of the steering group
Taking leave of life requires the best conditions
for the dying person as well as for the relatives.
The hospice is exactly the philosophy and care
which ‘re-thinks’ values and [the] framework for
the end of life in our time.
'No Man is an Island‘
No man is an island entire of itself;
every man
is a piece of the continent, a part of the
main;
if a clod be washed away by the sea, Europe
is the less, as well as if a promontory were, as
well as any manner of thy friends or of thine
own were; any man's death diminishes me,
because I am involved in mankind.
And therefore never send to know for whom
the bell tolls; it tolls for thee.
MEDITATION XVII Devotions upon Emergent Occasions
John Donne
Final plea
• Be brave enough to keep values to
the front of palliative care
• Accept that we are in the grip of the
concept of autonomy but let’s give it
its proper place within a richer
concept of respect for persons
• Let’s reclaim some values that have
been down-graded like ‘care’ and
‘respect’ and ‘dignity’
Thank you for listening
Tak fordi I lyttede
Simon Woods (PhD)
simon.woods@ncl.ac.uk