Advance Care Directives in
Tasmania
Part of the Healthy Dying Initiative
A slide presentation for community use.
Modern trends at the end of life
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Demographic – people living longer
Technical – medicine can do so much more
Professionalism – specialists needed for ‘care’, & attention
to people’s wishes
Religious/spiritual – less connection to traditional churchbased supports
Social – individualism, social mobility, changing nature of
community, multiculturalism
Pathways to death are changing
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Living longer, but taking longer to die
Up to 2 years at the end of life with:
– Physical deterioration & disability
– Increasing symptom burden
– Dependence
More with dementia
More decision points for care
Changes in our attitudes are occurring
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More & more people have experience of a ‘bad death’
Greater interest in end-of-life decision-making & discussion
of ‘living wills’
Questions about euthanasia and greater control at the end
of life
A trend across the Western world
Attitudinal barriers to dealing with
death
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Cannot initiate talk of death as patients and families do not
want this and you run the risk of precipitating it if you do
(“don’t talk about death, it will kill him”).
You have to do everything to maintain and prolong life
otherwise you are causing death (“you can never give up on
a patient”).
Belief that use of opioids and sedatives in palliative care can
contribute to the cause of death
Terminology
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Advance Care Planning (ACP) - a process of discussion
between a patient, the patient's family, and health care
professionals about the goals and desired direction of the
patient's end-of-life care.
Advance Care Directive (ACD) – a document that conveys
a person’s directions for their end-of-life care, for a time
when they can no longer make decisions for themselves.
Substitute Decision Maker (SDM)
Person Responsible & Enduring Guardian(Tasmania)
Person Concerned
Advance Care Directives – the
common law basics
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Every person with the capacity to decide for themselves has
the right to refuse treatment (to not give consent)
If they can understand what they are told, make an
informed choice, and communicate this to others, they
must be asked to decide for themselves.
An ACD will only become active if the Person Concerned
can’t understand or communicate (has ‘lost capacity’).
Every effort must be made to use the capacity they still
have, or any relevant information such as a valid ACD.
Advance Care Directive - general
‘Valid’ ACD – completed while person had capacity, not coerced
or influenced, witnessed, & applicable to the current situation.
Focus on
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Values, wishes & beliefs
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Acceptable outcomes rather than specific medical
treatments
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End-of-life decisions
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Can include broader care issues (location etc)
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May name a substitute decision maker
Advance Care Directive – what it
won’t do
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Is NOT concerned with financial matters (see Enduring
Power of Attorney)
Is NOT like a will (because it operates before you die)
Will not necessarily prevent emergency treatment by
paramedics (because they have little choice, if called)
Doesn’t mean that the expert opinion of doctors is
irrelevant (because the process of advance care planning
blends their judgement with the patient’s wishes)
ACDs are part of Healthy Dying (1)
In the community:
• More opportunities for discussion with GP, family & friends
about death, and about particular deaths: yours and mine
• Documenting of wishes and values for end-of-life in a standard
Advance Care Directive form (ACD)
• Appointment of ‘substitute decision maker’ (= Enduring
Guardian, or ‘Person Responsible’)
ACDs are part of Healthy Dying (2)
In the Residential Aged Care Facility:
• Increasingly, people will arrive with an ACD
• New arrivals to fill one in
• Clear wishes may prevent unnecessary transfers to hospital
for dying residents
• Importance of having SDM nominated and AVAILABLE
ACDs are part of Healthy Dying (3)
In the hospital:
• Assessment of Goals of Care for this patient depending on
their history & condition
• Increasingly, patients will have an ACD that must be taken
into consideration
• Goals of Care plan can be endorsed for use in the
community; eg, assists paramedics, Residential Aged Care
Facility, GP.
ACDs in Tasmania
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ACDs have common law status in Tasmania. There is now
Australian case law confirming that they should be
respected
The underlying right is the right of every competent adult
to make decisions for themselves
So, every competent adult can refuse medical treatment
This is not regarded as suicide (the disease is regarded as
the cause of death)
Similarly, the doctor who agrees to withdraw treatment is
not assisting a suicide
ACDs in Tasmania now
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An ACD can be written in any form, or may be verbal.
Many different versions exist, but this can be a problem for
interpretation
A standard Tasmanian ACD now exists. It replaces the
‘Statement of Wishes’ made available through the
Respecting Patient Choices (RPC) pilot program at RHH
More information, & the ACD form, from DHHS palliative
care site: http://www.dhhs.tas.gov.au/palliative_care
RPC has now ended in Tasmania
Hospital (& Nursing Home): Goals of
Care Plan
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Tool for discussing option of treatment limitations with
patients and families
Replaces NFR (Not For Resuscitation) order, which was
too simplistic & widely misunderstood
Clear documentation for decision-making
Improve reach outside of hospital for Palliative and
Terminal care
Goals of Care in Community Settings
• Palliative Goals
• helps plan ahead for any foreseeable emergencies (eg
fracture, UTI, pain and symptom management)
• Terminal Goals
• Ensures that appropriate medications available when
needed, and that family and staff understand death is
imminent and hospital transfer undesirable
Person Responsible (1)
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Substitute Decision Maker nominated by the Person
Concerned OR
May be an approved person under Guardianship &
Administration Act 1995, either (order of priority)
– EG
– Spouse
– Unpaid carer
– Other person with best interests at heart.
NB – officially no ‘next-of-kin’ any more
Person Responsible (2)
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Health care professionals may follow GA Act to determine
who is right person to make decisions on behalf of patient
who lacks capacity and who has not nominated someone
themselves
Person Responsible can be encouraged to complete an
ACD for the person concerned if necessary/wished.
The last resort, in the event of unresolvable conflict, is to
ask the Public Guardian to appoint a temporary Guardian.
Enduring Guardian
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Legally appointed using GAB form
Lodged with GAB
Only used if/when Person Concerned lacks capacity
ONLY for health and lifestyle decisions
Has NO role in financial management of person’s affairs