Raymond Tallis
Planning for the End of Life for People with Dementia Alzheimer s Australia Professor Colleen Cartwright March 2011.
Advanced Care Planning: Planning future care to ensure that your wishes are known when you can no longer make decisions for yourself of legally complete documents Advance Directive: A written, legally binding, document, which allows you to record your wishes for general or specific treatment you consent to or refuse under certain conditions Enduring Guardianship: Authority you invest in a trusted person to make health care decisions for you when you can no longer make those decisions for yourself.
Every competent adult in Australia has the legal right..to accept or refuse any health care or treatment. Unfortunately, for someone with dementia the time will almost certainly come when they will not longer be able to communicate their wishes Cartwright ibid
Their legal status Their scope: what they can/cannot prescribe The practicalities of their implementation The ethical rationale of living wills The ethical/philosophical problems with living wills
The legal status of living wills Their scope: what they can/cannot prescribe The practicalities of implementation
The legal status of living wills Their scope: what they can/cannot prescribe The practicalities of implementation
Advance decisions to refuse treatment People can make decisions to refuse treatment if they should lose capacity in future No application to any treatment which the doctor considers necessary to sustain life unless strict formalities have been observed Swan Lecture
The legal status of living wills Their scope: what they can/cannot prescribe The practicalities of implementation
Refusal of treatment including antibiotics Refusal of food or fluids Pain control CPR Terminal sedation Home versus institution
Say which treatments would not wish to have Cannot (generally) requisition treatments that go beyond those normally judged to be appropriate So, largely negative rather than positive though some aspects positive (home versus hospital) Human rights versus medical treatments: the ambiguous nature of medically assisted nutrition and hydration
A man with a progressive neurological problem Anticipating the time when he is terminally ill Took the General Medical Council UK to High Court Won the case for artificial feeding and nutrition to the very end Overturned on appeal
Doctors not obliged to give treatment the believe to be futile Artificial hydration and feeding is treatment There is a limit to what you can positively requisition in an AD
The legal status of living wills Their scope: what they can/cannot prescribe The practicalities of implementation
Getting round to drawing one up Scope and interpretation Ambiguities Knowledge of the advanced directive Emergency situation: playing safe Uncertainty about the mental state of the patient Convictions of the clinical team
Human rights Ethical principles sovereignty of autonomy Broader impact on society (harm principle) How these are played out in the debate about assisted suicide, euthanasia
Distinguish: assisted dying; assisted suicide; voluntary euthanasia; involuntary euthanasia
The right to decide The fear of impact on others The slippery slope Clinical uncertainties Hence the wish to confine legalisation to a narrow and precisely defined group of individuals: crampons rather than skis Terminally ill, symptoms resistant to best care, safeguards
Autonomy Inconsistent application Harm principle (JS Mill) Applicable where individual is mentally incompetent
It is important to remember that, despite changes in mood, cognition and behaviour, the person with dementia remains the same person that they were before their diagnosis Cartwright 2011 ibid
Making plans for a future self Enslaving a future self The planner is competent, the planned for is not. Experiential versus critical interests (Dworkin) Predicting one s own future interests
The Happy Mathematician
If I become demented: Am I the same person as the one who made the advanced directive? Am I a person at all? Can I enslave a future different person or non-person? How do we weigh present interests (as interpreted by others) against past wishes as enshrined in the AD? Swan Lecture
Exemplifies the clear application of one particular ethical principle that everyone subscribes to Is consistent with all the other fundamental principles of biomedical ethics and/or Is fireproof against criticism from individuals with strong beliefs about the sovereignty of one principle over the others
In your dreams..
It leaves you feeling uncomfortable until you forget about it because You have become shallow enough Or you are worrying over another ethical decision
Potentially judgmental Utilitarianism by stealth Limits of empathy as a guide Metaphysical limits Swan Lecture
Over to you!