What’s an ACD?
An advance care directive
(also known as a living will)
is a document indicating which
healthcare steps should be taken
in certain circumstances if a person
is incapacitated and can’t make
the decisions themselves. The
document can also designate a
representative – usually a family
member or close friend – to make
decisions when you cannot.
But ACDs are not just about
whether or not to pull the plug
– and they serve the same purpose
for comparatively young victims of
disease or accident as they do for
the elderly. Dr Annette Street, an
adjunct professor of palliative care
at La Trobe University and lead
author of a government-funded
study on ACDs, told CHOICE
the documents “are not just
a vehicle for people to leave
instructions that would lead to their
death. Instead, they are directed at
quality of life near the end so that
undesired and unwarranted
treatments are not initiated and
values and religious or cultural
preferences are respected”. Street
says about one in four people loses
the ability to make decisions about
healthcare at the end of their lives.
Enduring guardianships are
an alternative to ACDs. While not
specifically outlining treatment
preferences, they nominate a
decision-maker to act on a patient’s
behalf should the patient become
incapacitated, and are generally
recognised between states
and territories.
State of confusion
To get a fix on the current state
of affairs regarding ACDs, CHOICE
talked to a number of key stakeholders,
including the Australian Medical Association (AMA), the Australian Law Council (ALC), prominent health
academics and consumers. While the
issue remains bogged down in a legal
and ethical grey area, there are some
steps consumers can take to make
sure these critical documents do what
they’re supposed to.
Only WA, Queensland, SA and
Victoria have specific legislation
concerning ACDs, and it only applies within the respective state. “In other
states and territories it will be a matter of
interpreting common law to determine
whether or not a document meets the
criteria of being an ACD,” the ALC
told us.
There is no legally enforceable
nationwide definition of an ACD.
The legal question is just part of the
confusion. Common law may allow
you to establish an ACD in your state
that will be legally binding if it was
done properly, and it may
be transferable across state lines, but
regardless of state statutes, medical
professionals have the power to dismiss
the document if they disagree with the
directive. A position statement on ACDs
provided to us by the AMA in October
says the peak body is
“concerned that legally
enforceable ADs [as
the AMA calls
them] may lead
the doctor into a
situation that he
or she believes
does not reflect
good clinical
care”. The AMA
maintains doctors are
“under no obligation
to follow an AD to
which they hold a
conscientious
objection”.
Paper jam
Given the lack of
uniformity within and
between states, there’s
understandable confusion about
the legal validity of these documents.
There is currently a vast array of ACD forms with different names and
protocols, and it’s unclear which ones
will or won’t be honoured across state
lines. And from the AMA’s point of view,
the medical instructions could be out
of date by the time the ACD comes into
play. “When preparing an AD, a patient
cannot predict or account for every
relevant future health care scenario,” the
AMA says. “Therefore, a patient’s AD
may not be directly applicable to the
actual circumstances at the time of
losing decision-making capacity. The patient’s view of what constitutes
extraordinary treatment may be quite
different to that of their family
members, surrogate decision makers
and the health
care team.”
One expert agrees ACDs
may be of limited value. “I
work in intensive care and
have never seen a patient
with an advance directive,”
says Ken Hillman, a professor
of intensive care at the
University of NSW
and director of The Simpson Centre for Health Services Research. “However,
we almost always
comply with the
patient’s wishes or
their closest relative’s
wishes with regard to
limiting treatment.”
The problem with ACDs, Hillman
says, is the inherent lack of specificity. “Where do you draw the line for each
disease with different prognoses and
treatment options? At best they probably
only encapsulate the general wishes of the
patient with regard to futile treatment.
In my own specialty, a patient’s wishes
expressed in an advance directive or
verbally or by trusted surrogates would
almost always be respected.”
Staying in touch
In their 2006 La Trobe University study,
authors Professor Annette Street and
Dr Goetz Ottmann recommended
that doctors and other healthcare
professionals make the review of ACDs
part of their regular workload and that
a single nationwide policy be put in
place, including standardised and legally
binding documents. The AMA made
similar recommendations in their
position paper released that year.
The La Trobe study found lack of
communication between healthcare
professionals and patients regarding
healthcare preferences is widespread
and, in order for ACDs to remain up
to date, the issue should be discussed
continually with patients as well as
family members, especially in light
of the patient’s changing health status.
If doctors and patients communicate
regularly about ACDs, there is a
better chance they will be carried
out, the report suggests.
While little has changed since the
AMA paper and La Trobe study were
released, the issue seems to be making
its way onto the national health agenda.
A 70-page report on ACDs released in
September last year by the Australian
Health Ministers’ Advisory Council,
A National Framework for Advance
Care Directives, lays out a plan to realise
the recommendations in the AMA and
La Trobe reports and draws attention
to the importance of ACDs in a world
where people are living longer and
dying more slowly.
Among other things, the report
points out that if we die of natural causes,
“most of us can now expect to face an
extended period of progressive disease
burden, increasing dependence, pain
and unpleasant symptoms”, adding that
many people these days “fear the process
of dying more than death itself”. In
October, the Australian Institute ofHealth and Welfare reported that
there were about 56,000 palliative
care admissions to public and private
hospitals in 2009-10, with the number
of admissions increasing by more than
50% between 2001 and 2010.
Making it stick
If you feel an ACD is appropriate to your
circumstances, there is a legal checklist
that generally applies to all states despite
the lack of standardised documents and
legislation. Wherever you live, check
with a solicitor to make sure you
establish an ACD that is consistent
with state requirements.
An ACD is likely to stand up to legal
scrutiny if the following criteria are met:
- The subject of the ACD was of sound
decision-making capacity when it
was written.
- The document includes specific details
about treatments the subject would
accept or refuse.
- The ACD is current and relates to the
current medical problem.
- The subject was not influenced by
anyone when the directive was written
A healthcare professional may be
more likely to honour the terms of
an ACD if:
- They are aware of its existence well
in advance of its use.
- Patients, guardians and designated
decision-makers keep up ongoing
communication with healthcare
professionals about the contents
of an ACD and the values and
convictions behind it.
- The healthcare professional
makes an effort to include discussion
of advance care and treatment
preferences as part of their routine.
- Nurses and allied health professionals
stay attuned to any discrepancy
between the wishes of the patient
and the doctor’s stance on ACDs.
Your say
Most of the consumers who answered CHOICE’s
Facebook call-out on the issue of advance care
directives came down on the side of strict observance rather
than allowing doctors to exercise their own discretion. Here's a small selection of their views.
- “A person’s right to decline palliative
care should be respected.”
Margaret A
- “Do we not have the right of
self-determination? Doctors should
not impose their morals on their
patients. They are there to assist
their patients, not to determine fate.”
The Tolvays
- “The right to life surely implies a right
to death.”
Neil G
- “Doctors should have the right to
override someone’s choice to die if
there is even a slight chance of recovery.
Doctors do not like killing people, I hope.”
Andrew M