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'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
• 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, non-maleficence, 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 self-determination• Consent• Confidentiality
Autonomy: for and against
•Sets the boundary to permissible intervention•Consent•Individual rights and freedoms
•Implies a view of the ‘isolated’ individual•Under emphasises relatedness•Can seem selfish and superficial
(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
Don’t tell my family I am dying
Sedate me
Send me home to die
I want euthanasia
Feed me until the end
Resuscitate me
?
I don’t want morphine ??
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 VersionAnne 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’
