Advance Care Directives
(part of the Healthy Dying Initiative,
and Goals of Care Project at RHH)
Prof Michael Ashby
Jenny Fuller
Why ‘Healthy’ Dying?
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The idea arises from the discipline of palliative care
Best practice in palliative care is to be ‘health
promoting’ – the same kinds of things support a good
death as support a good life
Promoting health is about respecting the autonomy of
the patient, maximising their comfort, minimising their
suffering, and making an effort to enhance their
dignity.
Goals of Health-Promoting Palliative Care
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Provide education & information for health, death &
dying
Provide both personal & social supports
Encourage interpersonal reorientation towards a
‘natural’ death
Encourage reorientation of palliative care services
towards public health ideas of prevention, harm
reduction & community participation
Combat death-denying health policies & attitudes
(See Kellehear A. Health Promoting Palliative Care
Melbourne: OUP, 1999)
Palliative Care in Tasmania
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Tasmania has well established palliative care
services in each of its three area health
services
Approximately 4,000 people die each year in
the state, and about 40% of these are referred
to the palliative care services
These patients have a better chance of dying
at home and are less likely to die in a hospital
Barriers to preferred care
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People’s preferences are often unknown
Only around one third of the general public
had discussed death and dying with anyone
(UK)
Many patients don’t receive excellent care.
54% of complaints in acute hospitals relate to
care of the dying/bereavement (UK data)
Death & Dying Myths
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You cannot initiate talk of death as patients &
families do not want this & 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 & prolong
life otherwise you are causing death (“you can
never give up on a patient”).
Use of opioids & sedatives can contribute to the
cause of death
Modern trends
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Demographic: people living longer
Technical: medicine can do so much more.
Professionalism: specialists needed for ‘care’
Religious/spiritual: less connection to traditional
church-based supports
• Social: individualism, social mobility, changing
nature of community, multiculturalism.
Pathways to death
• Living longer, but taking longer to die
• Up to two years at the end of life with:
 Physical deterioration and disability
 Increasing symptom burden
 Dependence
• More with dementia
• More decision points for care
Changes
• Greater interest in end of life decision making &
discussion of ‘living wills’
• This trend is occurring across the Western World
• Questions about euthanasia & control at end of life
Healthy Dying Initiative
•Both RHH and STAHS elements
•Advance Care Directive mostly a community focus
•Hope to become a State-wide application
•RHH implementing Goals of Care Plan which can
be endorsed for continued use in community
settings
Terminology
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Advance Care Planning
Advance Care Directive
Person Concerned
Substitute Decision Maker
Person Responsible
Enduring Guardian
ACD history in Tasmania
• 1995 - Guardianship and Administration Act
• 2006 - Respecting Patient Choices Project
• 2006 - Clinical Ethics Committee of RHH
• 2009 - Clinical Network Working Party
Tas EG Study Preliminary results
• EG forms lodged with GAB in 2009 approx 10,000
(2% Tas population)
• Forms sampled: 502 (1:20)
• 238/502 (47%) made a request for palliative care
• 56 made requests for long term care
• 23 made specific requests for personal care
Advance Care Directive
Focus on:
• Values, wishes & beliefs
• Acceptable outcomes rather than specific medical treatments
• End of life decisions
- Can include broader care issues
- May name a substitute decision maker
An Advance Care Directive
• Is NOT concerned with financial matters
• Will not necessarily prevent emergency
treatment by ambulance crews
• Doesn’t mean that the expert opinion of
doctors is irrelevant
Advance Care Directive
• Will only be used if you can’t understand or
communicate for yourself
• If you can understand what you are told,
make an informed choice and understand the
consequences, and communicate with others,
you will be asked to decide for yourself.
Person Responsible
Substitute Decision Maker nominated by the Person
Concerned OR
May be an “approved” person under GA Act
– either:
• an Enduring Guardian,
• Spouse,
• Unpaid carer,
• Other person with best interests at heart
Enduring Guardian
• Legally appointed using GAB form
• Lodged with GAB
• Only used if/when Person Concerned lacks
capacity
• ONLY for health and life-style decisions
• Has NO role in financial management of
person’s affairs
People without capacity
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Person responsible can be encouraged
to complete an ACD for the person
concerned if necessary/wished
Same form for both direct and ‘on
behalf’ directives
Capacity
To have capacity patients must be able
to understand the treatment options
presented, to make an informed decision
and to understand the consequences of
that decision
Capacity
• Fluctuating condition
• People should always be consulted so far as
they are able to understand
• May be a temporary state (eg following stroke
or head injury, or psychosis)
• Is not an ‘all or nothing’ – may have capacity
to make some decisions, but not others
Witnessing
An ACD should be witnessed by an independent
adult who:
• has no relationship to Person Concerned or
Person Responsible
• has nothing to gain from process
• believes person writing ACD knows what it is,
what it means, and that person is not under
duress to write ACD
Why make an ACD?
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An ACD is a way of maintaining control of
your life, at a time when you are vulnerable,
and may be least able to have control
An ACD will help your family/friends know
what you would want if you couldn’t tell them
An ACD is about your choices
Who should have an ACD?
• All of us, but especially:
• People who have conflicted or estranged
family, or very different values
• People at risk of loss of capacity (eg early
stage dementia)
• People entering Residential Aged Care
• People with chronic health problems
• People with no family
Benefits of an ACD
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More likely to receive care in place of
choice
Greater sense of control over treatment
Less stress for families making decisions
Better bereavement outcomes for families
when they act in support of person’s wishes
Questions to ask
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What is most important to me?
What do I think about death and dying?
What do I fear about death and dying?
What wouldn’t I want to happen to me?
What does quality of life mean to me?
Do I have any particular fears about sickness or
medical procedures?
Choosing a SDM
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Doesn’t have to be family – sometimes better not
Someone who knows and understands your wishes
Would act in accord with YOUR wishes, not their
own
Can be calm and assertive in difficult situation
Will be available if needed
Ethical obligation with ACDs
• ACD’s have common law status in Australia (see
Hunter and New England AHS v A [2009] NSWSC
761)
• Doctors should respect their contents
• It can be argued that there is an ethical obligation
to do so, regardless of the legal status in a given
state or territory jurisdiction
Role of GP, Nurse etc
• Can help explain what possible events might
happen
• Can listen and advise on decisions
• Can provide reassurance regarding fears
• Can witness your ACD
• Can support families and others in
understanding ACD process and outcome
Aged Care & ACDs
• All residents should have detailed ACD and
a Substitute Decision Maker
• Clear wishes may prevent unnecessary
transfers to hospital for dying residents
• Importance of having SDM nominated and
AVAILABLE
Changing an ACD
• Can be changed at any time.
• Each version should be clearly dated, and
preferably, the old one crossed out, or thrown away
• If Substitute Decision Maker is changed, be sure to
tell both old and new appointee
• Make sure copies go to same people who had old
version
Emergencies and ACDs
• Ambulance officers have duty to respond by
CPR etc in emergency situations
• Hospital staff response to ACD – withdraw or
withhold treatment as indicated in ACD and by
EG/PR
• Importance of keeping ACD up to date
Your choices – what to do
1. MOST IMPORTANT – talk to family and others
about your wishes
2. Complete an ACD, give copy to important
people, (incl GP, hospital, family)
3. Name a “Person Responsible”
(or appoint an Enduring Guardian and lodge
forms with Guardianship Administration Board)
Further information
Type “healthy dying initiative” into your
search engine
Tas Assoc for Hospice & Palliative Care Inc
www.tas.palliativecare.org.au
jenny.fuller@dhhs.tas.gov.au
Discussion questions
• Do you have an ACD, (or thought about it)?
• What would you want your family or friends to
know about your wishes?
• Do you have an idea about a SDM?