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Advance Care Directives. (part of the Healthy Dying Initiative, and Goals of Care Project at RHH) Prof Michael Ashby Jenny Fuller. Why ‘Healthy’ Dying?. The idea arises from the discipline of palliative care

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advance care directives

Advance Care Directives

(part of the Healthy Dying Initiative, and Goals of Care Project at RHH)

Prof Michael Ashby

Jenny Fuller

why healthy dying

Why ‘Healthy’ Dying?

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

Goals of Health-Promoting Palliative Care

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

Palliative Care in Tasmania

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

Barriers to preferred care

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

Death & Dying Myths

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

Modern trends

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

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


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

healthy dying initiative

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



Advance Care Planning

Advance Care Directive

Person Concerned

Substitute Decision Maker

Person Responsible

Enduring Guardian

acd history in tasmania

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

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

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

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 directive1

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

Person Responsible

Substitute Decision Maker nominated by the Person Concerned OR

May be an “approved” person under GA Act

– either:

an Enduring Guardian,


Unpaid carer,

Other person with best interests at heart

enduring guardian

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

People without capacity

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

that decision



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



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

Why make an 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

who should have an acd

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

Benefits of an ACD

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

Questions to ask

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

Choosing a SDM

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

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

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

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

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

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

Your choices – what to do

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)

further information

Further information

Type “healthy dying initiative” into your search engine

TasAssoc for Hospice & Palliative Care Inc

discussion questions

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?