Advance Care Directives. (part of the Healthy Dying Initiative, and Goals of Care Project at RHH) Prof Michael Ashby Jenny Fuller. Why â€˜Healthyâ€™ Dying?. The idea arises from the discipline of palliative care
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(part of the Healthy Dying Initiative, and Goals of Care Project at RHH)
Prof Michael Ashby
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.
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)
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
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)
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
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.
Living longer, but taking longer to die
Up to two years at the end of life with:
Physical deterioration and disability
Increasing symptom burden
More with dementia
More decision points for care
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
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
Advance Care Planning
Advance Care Directive
Substitute Decision Maker
1995 - Guardianship and Administration Act
2006 - Respecting Patient Choices Project
2006 - Clinical Ethics Committee of RHH
2009 - Clinical Network Working Party
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
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
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
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.
Substitute Decision Maker nominated by the Person Concerned OR
May be an “approved” person under GA Act
an Enduring Guardian,
Other person with best interests at heart
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
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
To have capacity patients must be able
to understand the treatment options
presented, to make an informed decision
and to understand the consequences of
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
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
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
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
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
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?
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
ACD’s have common law status in Australia (see Hunter and New England AHS v A  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
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
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
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
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
MOST IMPORTANT – talk to family and others about your wishes
Complete an ACD, give copy to important people, (incl GP, hospital, family)
Name a “Person Responsible”
(or appoint an Enduring Guardian and lodge forms with Guardianship Administration Board)
Type “healthy dying initiative” into your search engine
TasAssoc for Hospice & Palliative Care Inc
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?