Advance Care Planning:
The Legal Framework
Professor Colleen Cartwright, Director
Aged Services Learning & Research Collaboration*
Southern Cross University
Adjunct Professor, UNSW Medical Faculty,
Rural Clinical School
colleen.cartwright@scu.edu.au
* Proudly Sponsored by Banana Coast Community Credit Union
History
• Concept & term “Advance health directives” first proposed by
Kutner,1967
• US Patient Self Determination Act 1990 (Advance Directives
given by giving Durable Power of Attorney or writing a Living
Will)
• UK, 1993 High Court decision (Re C -Adult: Refusal of
Medical Treatment) supports AHDs; House of Lords decision
to withdraw tube feeding from a patient in PVS (Re: Bland) set
precedent; 2005 - legislation confirms status of AHDs
• Canada and Netherlands have provision for Advance Directives
and proxy decision-making
Australian Legislation - 1
State/
Territory
ACT
AHCD EG/
Legislation/Comments
Or =
Proxy
Medical Treatment Act 1994 allows advance
Yes
Yes
NSW
No
Yes
No specific legislation for AHCD – presumption
that common law applies. Guardianship Act
1987 allows appointment of Enduring Guardian
whose functions can include consent to medical
treatment.
NT
Yes
No
Natural Death Act 1988 allows AHCD to refuse
extraordinary treatment in the event of a terminal
illness
QLD
Yes
Yes
Powers of Attorney Act 1998 allows AHCD
refusing treatment, + appointment of medical
EPA. Guardianship & Admin Act 2000 allows
proxy to refuse life-sustaining treatment.
refusal of treatment/appointment of agent.
Guardianship & Management of Property Act
1991 allows appointment of medical EPA
Australian Legislation - 2
State/
AHCD EG/
Legislation/Comments
Territory Or =
Proxy
Consent to Medical Treatment & Palliative Care
SA
Yes
Yes
Act 1995 allows anticipatory refusal of treatment
but only for terminal illness. Guardianship &
Admin. Act 1993 allows for medical EPA
TAS
No
Yes
Directions for Medical Treatment Bill 2005 (not
yet enacted) allows AHCD for current condition
but only for terminal illness or PVS. G & A Act
1986 allows appointment of Enduring Guardian
for medical decisions
VIC
Yes
Yes
Medical Treatment Act 1988 allows completion
of “refusal of Treatment” certificate; only applies
to current illness (does not have to be terminal).
G & A Act 1986 allows appointment of Enduring
Guardian for medical decisions
WA
No
No
Act Amendment (Advance Health Care Planning)
Bill 2006 (not yet enacted) allows anticipatory
refusal of treatment.
NSW Legislation Relating to Advance Care
Planning
• Powers of Attorney Act 2003 allows appointment of Enduring
Power of Attorney for financial and property matters – EPA does
not give authority to make medical decisions
• Guardianship Act 1987 allows for appointment of Enduring
Guardian, who can be empowered (by the appointor) to exercise
some or all of the following functions, once the appointor loses
capacity:
(a) decide where appointor shall live (e.g. RACF);
(b) decide health care appointor shall receive
(c) decide what other personal services appointor shall receive
(d) give consent for medical and dental treatment
(e) other functions as specified by appointor in EG document
NSW Legislation Re: Advance Care Planning: 2
• If no AHCD which meets current situation, authority
to give consent to, or refuse treatment passes to the
“person responsible” who is the first readily available
and culturally appropriate in the following hierarchy:
– Guardian (appointed by Tribunal)
– Enduring Guardian (appointed by person themselves)
– spouse, provided the relationship is close and continuing
– carer: person who provides domestic services and support
or arranges for such provision (but not professional carer)
– close friend or relative of the person (e.g. someone who
maintains both a close personal relationship with the person
and a personal interest in their welfare).
Legal Status in NSW of AHCDs
• No specific legislation in NSW that codifies use of
AHCDs (there is in 5 other states/territories)
• General agreement that they are covered by the
common law right, which every competent person has,
to refuse treatment (even life-saving treatment) - but no
test case yet
• NSW Health – Using Advance Care Directives –
advises health-care professionals to respect AHCDs
unless there is a very strong reason to do otherwise, or
they may find themselves in court (supports common
law presumption)
Priority for Health Decisions in NSW
• Advance Health Directive
• State-Appointed Guardian
• Patient-Appointed Enduring Guardian
• Person Responsible
• Public Guardian
Need for Specific AHD Legislation? YES
• To protect gains already made and to provide certainty to
patients and health care providers. This is under attack:
• ACHSE NSW Law Bulletin Article: To Declare Or To Direct?
End Of Life Issues, April 2005, claimed:
– the legality of AHDs is unclear:
Response: this is arguable where there is no specific
legislation but legislation would clarify the issue
– patient may have been suicidal when they made the AHD:
Response: which is why it should be witnessed by a doctor
who testifies to patient’s capacity. Also, time since
completion?
– patient may not have been competent: Response as above
Incompetence is Not:
• Ignorance (e.g. because patient has not been given
adequate information)
• Eccentricity, cultural diversity or having different
ethical views
• Communication failure
• Bad decisions
• Disagreeing with health care provider
ACHSE NSW Law Bulletin Article (cont)
– wishes may not be clear:
Response: requires a well-drafted document
– patient may have changed his/her mind:
Response: research shows patients’ wishes generally remain
stable or change to wanting less – not more - treatment – but
regular review is recommended. In the absence of evidence
that the patient had changed his/her mind, previouslyexpressed wishes should be paramount.
– Some medical practitioners may use AHDs instead of good
communication:
Response possibly, but if so, unlikely that their
communication on end-of-life issues would be of a high
standard with or without AHD - recognised deficit in many
medical practitioners and an issue that is now being
addressed in Australian medical schools.
ACHSE NSW Law Bulletin Article (cont)
– In the presence of AHD, doctors are not able to provide what
they feel is in the patient’s best interests at that particular time:
Response: a properly executed AHD expresses what the patient
feels would be in his/her best interests at that particular time –
should have more weight
– Might not be what the family wants:
Response: as above – what the patient wants is more important
– Enduring Guardianship should be “advisory only”
Response: seeks to return to medical paternalism instead of
patient autonomy and doctor-patient partnership.
Recent discussion document from Aust
Catholic Bishops’ Committee
– Statements by patients about their future care are by nature
hypothetical:
Response: true to some extent but often based on experience
with loved ones and/or personal experience of illness
– It is likely that some Australian jurisdictions may make these
statements statutorily enforceable:
Response: some already have and it is probable common law
prevails in others
– This would be a mistake … Health professionals, patient
representatives and families should treat (such) statements as
guides rather than directives:
Response: this would remove one of the main benefits of
completing an AHD, i.e. the certainty that wishes will be
respected – vis insurance policy.
Other Statements from Bishops
– Healthcare professionals cannot be obliged to implement an
unethical or unreasonable refusal of … care:
Response: in whose opinion is it unethical or unreasonable?
This is also contrary to the common law right of any
competent patient to refuse any treatment, even life-saving
treatment. If patient autonomy is respected for competent
patients, it is discriminatory to refuse it to those no longer
competent and if treatment is given against wishes of patient,
may constitute assault.
– If (above) legally enforceable, healthcare professional may
need to withdraw from the situation.
Response: if a healthcare professional cannot abide by a
patient’s decision, s/he should withdraw from the patient’s
care
Other Statements from Bishops
– Ordinary life-sustaining measures such as tube feeding
should be continued, provided they are beneficial and
not overly burdensome to the patient or others(?):
Response: who decides if they are beneficial or overly
burdensome if the patient has lost capacity? Such
treatment often is not sustaining life but is prolonging
dying; may also deprive person of a peaceful death.
– Other statements re: proxies not in accord with current
law. (Mostly incorrect)
Current Issues in NCAHS - 1
• No provision on hospital admission forms for recording
existence of AHCD.
– GP who sent AHCD to hospital where one his older patients
is regularly admitted had form returned and was told, “Tell
the patient to bring it with them when they are next admitted”
• No provision on hospital admission forms for
recording existence of Enduring Guardian - forms do
not comply with legislation – still ask for Next-of-Kin
– Next-of-Kin has no legal status in relation to making medical
decisions
– Patients being admitted to hospital who present Enduring
Guardian form are being told “Oh we don’t use those. Who
is your Next-of-Kin?”
Current Issues in NCAHS - 2
• Current situation puts hospital – and potentially
health care staff - at legal risk (confirmed by
discussion with A/Prof Cameron Stewart, Law
School, Macquarie Uni).
• Office of Public Guardian also confirmed that,
under the legislation, it is the responsibility of the
treating medical practitioner to ascertain if the
person has appointed an Enduring Guardian and, if
not, who is the correct “person responsible”.
Current Issues in NCAHS - 3
– Scenario: patient presents for admission, has EG form, told
“Not required, who is your Next-of-Kin?”
– Patient tells EG, “They would not accept the form.”
– Patient loses capacity, doctor asks N-o-K for decision
– N-o-K gives consent for treatment that EG knows the
patient absolutely did not want
– Patient ends up in PVS, coma, other negative QoL situation
– EG takes hospital to court; doctor may have some defence
(unless patient told her/him before losing capacity that s/he
had EG), hospital would have none – admission staff may
also be at risk
Current Issues in NCAHS - 2
• What do we need to do?
– Change admission forms
– Change computer programs to reflect changes
– Ensure AHCD & EG forms go into patients’ medical
records and alert is put on record and in computer
– Educate staff – admissions; medical records; medical
and nursing; allied health (other? – advice from
participants?)
What do we need to do (cont.)
– Continue educating community members and
empower them to ensure that their forms are
recorded and wishes respected
– Make completion of AHCD & EG forms a
routine part of general practice (EG forms can
be witnessed by Clerk of the Courts – does not
require cost of solicitor, e.g. for pensioner;
AHCD forms can be witnessed by JP)
Advance Care Planning in Residential
Aged Care Facilities -1
• Ensure Admission forms ask if resident has:
– given Enduring Power of Attorney to someone (most already
do) and ensure that staff know that EPA does not give the
person appointed the authority to make health care decisions.
If financial problems arise (e.g. non-payment of facility
fees), do not wait for many weeks or months before taking
action – contact OPG as soon as a problem arises;
– appointed an Enduring Guardian. If so, check form to
ensure EG has authority to make health care decisions
– if no EG, establish who is “Person Responsible”, i.e.
(spouse; carer; close friend or relative)
ACP in RACF -2
• Ask if resident has completed an Advance Health Care
Directive.
– if yes, ask for copy;
– if not, and resident is competent, offer support to resident to
complete AHCD
– if resident is not competent, invite EG or Person Responsible
to complete Preferred Treatment Statement
– use AHCD or PTS, in consultation with resident’s GP, to
develop care plan for possible future end-of-life or crisis care
– check with competent resident, or EG/PR of non-competent
patient that the plan is acceptable
– RACF staff say residents often admitted to hospital because,
“we cant get the GP to come” – if planning is undertaken
well, probably don’t need the GP to come