Advance Care Planning
Advance care planning enables individuals to make plans for their future
care. Putting in place such a plan requires discussion with family members,
significant others and health care providers about your wishes. It was pointed
out to the committee that one of the barriers to making such a plan is the
reluctance of some people to discuss death and dying. The chapter considers
this reluctance and details suggestions made to address it. It then turns to
explaining what advanced care planning is, what is involved, and the issues
raised with the committee. It also covers the difference between advance care
planning and advance care directives and the national work undertaken on the
latter. It considers the potential for electronic records to assist advance care
Cultural reluctance to discuss death and dying
Talking to family, significant others and health care providers is
central to the process of putting in place an advanced care plan. However, witnesses
highlighted the reluctance of people to have conversations around death and
dying. Professor David Currow explained how this unease has developed:
...we have a very limited view of death and dying, and that is
compounded greatly by the increase in life expectancy of the last generation,
unprecedented in human history. I have looked after people in my working life
who are attending their first funeral of someone close to them that they love,
and they are in their fifth or sixth decade. Their grandparents died when they
were very young; their parents are still alive and well; their siblings are
alive and well; and here they are burying their spouse—and it is the first
funeral they have been to of someone that they really love. That for us is a
huge challenge. We have lost many of the traditions—and those traditions came
about for lots of good reasons—around death and dying. We have lost the
language. We have lost the ability, often, to reach out.
Palliative Care Australia also reflected on the tendency to avoid
discussions about death and dying on a personal level:
It is often argued that death has become a taboo subject,
detrimentally affecting the level to which death is discussed, including
discussion by health professionals who are also situated within the prevailing
culture. Details of gruesome traumatic deaths, and those of celebrities are
splashed across the media as both news and entertainment. Yet there is
apparently little discussion of death on a personal level. It has been argued
that this reflects the secularisation of society, the movement of illness and
death from the home to the hospital, a simple fear of dying, and the Aussie
attitude of hiding or disguising one's true feelings. Whatever the explanation,
we need to ensure greater levels of death literacy. We need to raise awareness
of end of life care, and concurrently encourage Australians to complete advance
care plans and appoint substitute decision makers in case they lose capacity.
The use of language and its effects on conversations about death and
dying was highlighted by Palliative Care Victoria:
...The fact that we live in a death-denying society compounds
the issue for palliative care, because there is still this sense that you must
not give up, you failed treatment instead of treatment failing you. There is a
language associated with palliative care that we hear all the time—people lose
'battles' with cancer. There is this very combative language around that you
have somehow failed if you die.
Professor Currow emphasised the need for families to engage in such
conversations and highlighted the positive response to organ donation, a
subject on which conversations can be similarly difficult to have.
Increase public awareness
Witnesses emphasised that to facilitate conversations around death and
dying there needs to be greater public awareness of the need for and benefits
of them. Ms Kim McCartney, a witness who courageously shared her experiences as
a brain tumour palliative care recipient, expressed her view of the need to
remove the taboo of death and spoke of a public awareness campaign:
Ms McCartney: One of the things when I was diagnosed was that
so many people were like: 'Oh, you poor thing.' It occurred to me one day that
if someday had walked up to me before I was diagnosed with this and said, 'Hey!
Do you reckon you might die one day?' My answer would have to have been: 'I
reckon; I'm a good chance, yes.' The only difference between the Kim of then
and the Kim of now is that I have had confirmation of what I already knew. I
have not changed; I am still no different to anybody else. Don't ask me when; I
don't know. I might know how—perhaps. That is the only difference between me
and any of you sitting here. I am exactly the same as everybody else. Like I
said, it is just that I have had confirmation of what we all know.
CHAIR: You know when you were talking about that awareness
campaign? We have a star recruit, I reckon.
Mrs Waanders: Absolutely!
Ms McCartney: I think that if people could understand that,
it would take that whole taboo thing about: 'Oh, tumour—poor thing.' I am the
same person. In the beginning, when people said, 'Oh,' I used to pat them back
and say, 'It's okay; you've got a ticket too. You're on a winner just the same
as me.' It is the truth! People look at me as if to say, 'Oh.' You can tell
that they have never actually looked at it like that. It is like: 'You're on a
winner; it's all good.' But, yes, I think that there does need to be some sort
of campaign so that people actually do realise that death is universal—no-one
is exempt. If people could get there head around that they might be able to
start coping with the thought of palliative care. I remember saying to the
hospice one day—they had come around and we were having a chat—'I'm putting
something out.' They said, 'What's that?' I said, 'I'm on a train; I can't get
off. I know where the destination is and until the train stops there I can't
get off. But I do have a choice. I can choose to travel third class, on a
splintery wooden bench with no back on it and my feet just not quite touching
the floor, or I can opt to go first class, with the Jason recliner, a nice
cuppa and a magazine—I'll choose first class.' I said to the girl: 'And that's
why you're here.' I meant it. I do have a choice on how I can exit this world,
and I am going to choose the most comfortable. That is my best explanation of
palliative care: choosing to exit first class, not fourth class.
Palliative Care Victoria also noted the lack of public awareness of
palliative care and advocated for a national campaign:
I would reinforce Kim's statement that the awareness of
palliative care is very low in the community and that we do need a consistent,
large-scale national campaign. You do not bring about education and community
awareness through a once-a-year week campaign on a thin budget and have the
cut-through, awareness and the understanding that is needed; you need a
campaign like beyondblue that really takes it seriously—that says: 'This is a
whole of society issue and we are going to address it well. We are going to
make sure there is equity of access, which means great awareness for everyone,
and clear pathways about where to go. And also a recognition that at a single
government level there should be responsibility for a single point of access.'
The way they are talking about for aged-care now that needs to happen to ensure
that people are not left, as Richard has just explained, trying to navigate a
very complex system. It is hard enough for us who are in the system navigating
it let alone people who do not know the system.
Palliative Care Australia emphasised that engaging in such discussions
is not the sole responsibility of the health system but is also the
responsibility of the community and the individual
and also recommended:
That ongoing national campaigns be funded, developed and
implemented to increase community awareness of end of life planning options and
community capacity to discuss and plan for death and dying.
Similarly, witnesses also highlighted the need for education. However,
there are challenges involved in educating around a sensitive or unpopular
topic. LifeCircle highlighted their experience of approach raising awareness
and overcoming barriers to such conversations with education:
LifeCircle has telephone counsellors, mentors and inaugurated
the Life Matters educational event. That was started about two years ago,
primarily because we found that people were phoning us pretty late in the game.
It meant that a mentor was able to be matched with a carer, but it was in the last
few weeks. The Life Matters educational event essentially addresses that issue
of death and dying being taboo topics—no-one wants to go there, so no-one wants
to think about advanced care planning, because, if you talk about death and
dying, you might die. The concept of introducing this was to provide the
information so that we could shift the attitudes. It is very interesting. We
had a difficult time getting lots of people to the event. You will get between
60 and 80, and at tops 100, for an event that is very well publicised. I think
it is precisely because of the topic of death and dying, so we are looking to
encourage. It is hard to get the topic going.
Ms Brynnie Goodwill, Chief Executive Officer, LifeCircle Australia Ltd
explained the need for death to be discussed from an early age and the need to
include medical professionals:
We need education right through from kids going into all
levels of schooling, bringing this conversation into schools, but certainly
into universities and medical professions so that it is demystified for
doctors. Doctors are trained to see death as a failure and that it means that
they got it wrong, so they do not like to talk about death and dying instead of
seeing it as a natural part of life and asking, 'How can we help you plan for
it and live well right to the end and have the best end you possibly can?'
The view that doctors are trained to see death as failure means there is
a need to include health professionals in awareness and education campaigns.
The Victorian Healthcare Association reported that there is a tendency for
health professionals to avoid the subject of future care needs at the end of
life, particularly when end of life care is complicated by communication and
cognitive problems related to old age and combined with the emotions of family
members. Recognising there can be a difference in the views of family members
and the patient, the Victorian Healthcare Association emphasised there is a
need to initiate and promote discussion about end of life care for all people.
Ms Goodwill, LifeCircle, emphasised the need to engage GPs in awareness
We found that, if you could get GPs engaged early enough, GPs
can recommend that their patients and their patients' families to go to a
seminar like our Life Matters seminar where they will learn about advanced care
planning, tissue and organ donation, enduring guardianship, and the legal
issues that you have to face when you are just planning ahead. Typically, you
are looking for people in their forties or fifties who bring their parents or
come to be informed themselves, as well as people in their sixties, seventies
and eighties. The issue is quite complex. It is first about engaging the
medical community to feel comfortable about recommending this conversation to
their patients and their patients' families and it is about reaching out to
people directly within the community.
Palliative Care Victoria gave anecdotal evidence to the committee of
what can happen in situations where there is a failure to discuss end of life
wishes in the Australian medical system where not all health professionals who
may be involved in the care of a patient have sufficient capacity around death
I think in our submission I gave a couple of examples of
phone calls from members of the public—quite disturbing examples. One
particular example was on Saturday morning when I had gone to the office
because we had forgotten to switch the fridge back on. So it was just by
chance. I had a very disturbing call from a woman who had discharged her parent
from a hospital the day before to die at home and things had gone badly
pear-shaped. The patient was in not just pain but other things going on that
this person could not manage with the care of that person. That was an example of
the failure to communicate around preferences for end-of-life care, to get on
the same wavelength about where that end-of-life care should occur. So there
was a self discharge without support and then all the problems of getting back
into the system again; not able to access the GP on a Saturday morning; being
told they could not get readmitted back to the ward—they would have to go in
through emergency—and the patient was in such a state that that could not
occur. There are other examples like that, and not just members of the public.
We have had calls from staff in aged-care facilities disclosing that they are
very concerned that certain patients are not getting the pain management that
they need are too fearful to speak up.
So I think what is happening is that there is failure within
the system, with people not knowing and just enduring suffering and not having
the support and experiencing a bad death because they do not know where to go
and because the system is not geared to provide the levels of support and the
communication. There are big gaps. Half the time we do not know who those
people are falling through the gaps. I think that is the point and that is the
concern, particularly for people from non-English-speaking backgrounds and with
low levels of health literacy. It is hard enough, as you have just said, when
you have good command of English, are an assertive person and have high health
literacy and you know that palliative care exist. If you do not have any of
those things you really are pretty lost. This is where we need a system that
ensures that all health professionals have a capacity around dying and death.
It is a 100 per cent certainty that all of us are going to
die. Why is it we have a health system with health professionals who get the inciest
amount of training around that and who for the first time might experience a
death when they are on placement on a hospice ward and do not know how to deal
Dr Ron Sinclair, Consumer, Alzheimer's Australia spoke about the
experience of his wife:
Despite there being an advanced directive in place at the
time which specified no intervention other than for pain management, staff,
including RNs in the facility, ignored the directive and continually tried to
treat her, either by calling locums when she developed sickness or whatever,
and towards the end of her life they tried to force-feed her and to force her
to take fluids. On the other hand, in the last few weeks of her life, we had to
fight to get pain management managed well because the staff there did not use
any pain management scales. I provided the staff with published literature on
end-of-life issues, including pain management issues about the provision of
artificial nutrition and hydration, use of antibiotics and so on, and they told
me that they had never seen or been told about this sort of information. Some
of them accepted it with thanks; others would not even read it. The reasons for
trying to keep my wife alive centred primarily on what they called 'their duty
of care', although there were religious and philosophical views as well. They
were also not given a choice by their management on whether they could opt out
of looking after my wife and complying with the 'no interventions' in the
The Medical Oncology Group of Australia spoke about the communication
skills necessary to have such conversations with patients:
Like many awkward conversations in life, raising with a
cancer patient—who you might have known for some years—that this might be a
good time to think about making advanced care directives will upset them if
they have been still hoping for an extension of life. There comes that day when
you start talking about palliative care and talking about advanced directives:
'Not for resuscitation' orders, et cetera. We know that busy oncologists avoid
those conversations because it is just easier to give another round of
chemotherapy than it is to sit back and say, 'Today's the day we need to think
about these things.' Kay helps to manage a lot of training with our trainees in
medical oncology about the communication skills that are needed to bridge that
very difficult conversation. We know that junior doctors get almost no training
and they are sometimes faced with a patient who lobs into hospital unwell,
unexpectedly, and their skills are often lacking. It is a very upsetting and
We did some research recently to prove that you can train
people to do that and I have brought copies of that paper for you. It has just
been published. But it is a resourcing issue. Yes, we know how to train people.
Show us the money and we can do it!
Palliative Care Australia noted evidence from clinical research studies
which found that advance care planning discussion between patients and their
care team is generally poor and there is a substantial gap between what the
patient wants to discuss and what is actually discussed.
Palliative Care Australia recommended:
That a national training program on how to engage in end of
life discussions and advance care planning be supported, and that it is
incorporated into end of life care education for primary and specialist health
The committee recognises the value in encouraging people to have
conversations around death and dying to ensure that those around them are aware
of their wishes. The recognition of individual preferences allows people to
have control over the level of health care they receive at the end of life. Not
only can this give an individual peace of mind but it can remove the burden of
treatment decisions from the family and assist care givers. Advance care
planning is a vehicle for everyone to consider issues around end of life, and
not something to be contemplated when confronted by a terminal illness.
The 'DonateLife' campaign
is an example of raising awareness around the issue of organ and tissue
donation. It highlights the importance of having discussions with family and
others. The committee believes that a national campaign run along similar lines
covering advance care planning and advance care directives could address the
reluctance to engage in conversations about death and dying, promote the
benefits of advance care planning and explain the process which may contribute
to a greater uptake. While processes currently differ across jurisdictions, and
this is discussed in greater detail below, the committee considers that a
national campaign to raise awareness and encourage conversations around future
care would be of benefit. This would need to be followed up by campaigns in
each jurisdiction to ensure clarity around processes in each jurisdiction of
how to put plans and directives in place.
Advance Care Planning
Being able to engage in conversations about future health care that
include death and dying is an important aspect of putting in place advance care
What is it?
Advance Care Planning (ACP) enables a patient to express wishes about
their future health care in the event that they become incapable of
participating in treatment decisions.
As noted by the Australian General Practice Network:
Advance care plans detail ideas and processes developed by a
patient and their informal and formal care team about how care will be provided
in likely future circumstances.
An advance care plan may include:
- an Advanced (Health or Care) Directive (or other similar
- an Enduring Power of Attorney (EPA) (or similar instrument);
- a letter to the person who will be responsible for this
- an entry in the patient medical record;
- a spoken instruction or other communication which clearly
enunciates a patient's view; or
- any combination of the above.
How does it occur?
Dr Leslie Bolitho, President, Royal Australasian College of Physicians
explained how advance care planning occurs:
Advanced care planning allows patients with a terminal
illness to set out their preferences regarding their end of life care and other
affairs. The process is led by the patient, ideally in consultation with the
family and their treating health professionals. Advanced care plans record the
medical treatment the patient wishes to receive, the location of that treatment
as well as the legal and spiritual wishes. An advanced care plan applied with
the right advice in the right circumstances can significantly improve the
patient's experience in the last phase of their life as well as assisting in
the grieving process for family and loved ones...However, it must be recognised
that a patient's preferences may change, which can be complicated further if
the patient has significant cognitive impairment...
Advantages of ACP include:
- It supports people to take control over the circumstances in
which they live the last stages of their life, and in which they die;
- it takes the burden of decision making from third parties, most
of whom find it very stressful to make decisions that reflect the person's
- family members are often unable to agree on decisions;
increasing numbers of people have no family to make decisions as
in the absence of a clear statement of the wishes of a patient,
doctors usually initiate aggressive treatment that the patient may not want.
ACP can assist in addressing patient's loss of capacity, and ensure
their dignity. Medical successes mean that many more people die having lost
Advance care planning addresses people's fear of being unable to make their
preferences known when crucial health decisions are required after they have
lost decision making capacity.
It also helps address the concern that 'many Australians are kept alive under
circumstances that are not dignified and this causes unnecessary suffering'.
As patient care preferences and future scenarios can change over time,
organisations such a Palliative Care Australia stressed the need for advance
care planning to be a continuing process that:
begins as early as possible in a patient's illness
trajectory; is embedded in clinical routines and professional practice; and is
preceded by a screening process that assesses the capacity of people.
To address the fact that a plan can be a static document and a patient's
needs may change, Professor Frances Boyle, Medical Oncology Group of Australia
...if they are written carefully they can allow a certain
amount of clinical judgment. Most sensibly written plans will say: 'If I have a
life-limiting illness like cancer and there comes a time when specific
anti-cancer therapy is no longer useful to me and measures to extend life...'
rather than saying something like, 'If I get cancer, just let me die.'
What is an advance care directive?
There is a difference between advance care plans and advance care
directives. An advance care directive (ACD) has a legal status. It is a formal
recording of an advance care plan recognised by common law or authorised by
While the Australian Medical Association supported advance care planning
through the use of advance care directives,
Palliative Care Australia believed that advance care planning should not be
reduced to a singular focus on ACDs.
However, Palliative Care Australia recognised that:
Formalised ACDs can form an integral part of the advance care
planning process for those who wish to develop one, serving as a vehicle for
decisions about the type and level of medical intervention people wish to have.
The need for national consistency
The lack of consistency between jurisdictions was raised with the
committee as a key issue requiring attention. State and territory legislation
governs advance care planning and directives.
Currently there are jurisdictional differences governing advance care
directives (ACD) which results in it having different meanings across
The level of variability makes it difficult for one jurisdiction to legally
recognise an ACD from another jurisdiction.
Palliative Care Australia also pointed out that the legal differences between
jurisdictions governing advance care planning affects the uptake of advance
Mr Glenn Rees, Chief Executive Officer, Alzheimer's Australia drew attention
to this lack of consistency and its effects:
I suppose we would like the unachievable, which is universal
national laws that use the same terminology that consumers can understand and
where they do not find a barrier to moving from one state to another. We
understood that there was some mutual harmonisation going on. I honestly do not
know how extensive that has been. I do not think the issue is just legal; the
issue is obviously cultural and attitudinal, because people do not actually do
those things early enough. I suppose one of the things that we would really
want to face up to in developing guidelines is truth telling and starting the
journey at the appropriate time, because that is really what we should be doing
more of when we are counselling people about their diagnosis and what their
journey will involve. There are some quite good documents around about truth
telling and how you approach people in terms of facing up to the realities
without being cruel. I think we need to look a lot more at those cultural and
attitudinal things as well as the legal things, but the legal things certainly
do not help.
Officers from Alzheimer's Australia expressed the view that a
standardised approach across Australia would be very helpful. Mr Glenn Rees,
Chief Executive Officer added:
We have been advocating for that for probably six or seven
years and based very much on consumer views. They just did not know what the
terminology was and, in some cases, moving from state to state was becoming
very difficult in terms of barriers.
Professor David Currow echoed the call for national consistent process
for advance care directives:
We are asking people to redo whole documents as they shift
between states, because we say that they do not carry through. We have hospitals
that say that they cannot take a decision made in one admission and assume that
it would be the same in this admission. If that is underpinned by an
independent advanced care directive that was not made during that admission, I
worry that we are unreasonably burdening people in the community—and patients
particularly—with those process. We need a simple and nationally consistent
process that allows people to make these decisions and talk about to their
families and loved ones.
Ms Robyn Coulthard, member, Australian Nursing Federation added that
although there has been a lot of training for nursing and care staff at all
levels about advanced care directives the jurisdictional differences commonly
The setting in which nurses work makes a huge difference to
the way that they manage advanced care directives. In aged care there has been
a lot of training for nursing and care staff at all levels about advanced care
directives. The problem is that advanced care directives have no legal standing
in many states and are often contrary to the wishes of the enduring guardian or
the enduring power of attorney for medical treatment, so issues erupt daily,
not every day, but they are common...
They commonly erupt and there are issues then culturally and I
do not mean in Aboriginal culture I mean in other cultures with head of family
and who makes the decisions...
It can be in aged care it can be quite a treacherous path for
the staff and for the nurse. In the end it is often managed by negotiation and
mediation rather than a legal document. The biggest issue in residential aged
care is the advanced nature of dementia. People are often not able to say what
they want themselves.
Ms Brynnie Goodwill, Chief Executive Officer, LifeCircle Australia Ltd
also spoke about the lack of a national standard and spoke about the situation
in the UK:
The lack of having a national advanced care directive that
would be recognised is a problem. The fact that state to state—I know that New
South Wales health now has one up on its website—there are myriad forms. We
just had Dr Julian Abel out from the UK, who is involved with the National End
of Life Care strategy. The UK has an advanced care directive, and it is
registered in the hospitals. So if an ambulance gets called, the ambulance
driver will first check into the hospital and see what the wishes are. They
will still go to someone's house but they will actually know what the wishes
are and if they say 'no resus', they will just stay there and will not
resuscitate. So it is about that clarity—
Senator MOORE: And to feel the strength to do that.
Ms Goodwill: and that interface from having one simple
document. I heard the people who were testifying before mention a three-page
document, as well as nursing homes having their own document, which are 18-page
forms, and then there are 34-page forms. So there is a great deal of confusion.
Imagine what it is like for a simple person who is looking to figure out what
The first thing to do is to have the difficult conversation,
because no-one likes to talk about these issues. Some people do like to talk
about these issues, and that is why we are here today. There are traditions
whereby people absolutely feel that death is a natural part of life and that if
you remove that fear of death you have a lot more space for life. That is
exactly why we are here. We are looking to present that message so that this
whole area can be opened up and we can get onto documentation like advanced
care directives. One simple, straightforward standard that is respected in all
the jurisdictions and then uniformly applied throughout aged-care centres,
nursing homes and hospitals and then through legal representation would be a
Ms Jo Root, National Policy Manager, COTA spoke about the difficulties
people face in putting in place an advance care directive. She noted that while
they begin with problems of language and national consistency, they do not end
The fact that we use different language in different
jurisdictions is just a starting point. I think the distinction between advance
care planning, which you might do in residential care and which is done jointly
with the facility about what you are going to do, and consumer directed advance
health directives is part of the problem. People raise with us the difficulties
of putting in place an advance care directive and how you go about it. As we
put in our submission, we get a number of calls each week asking, 'How do I do
it in the ACT?' In the ACT we are lucky; we can refer people to the Respecting
Patient Choices facilitator. We have had feedback that that has been a
People need more assistance in taking out advance care
directives, but their big fear is they are not respected, that clinicians know
best and overrule what people have said or try to talk them through it. I think
that is changing, but many people's understanding of what happens is perhaps
not what actually happens. There is a bit of a distance. They know one person
whose advance care directive was not followed—
Ms Root added that their main concern is that residential aged care
needs to have advance care directives built into the accreditation standards to
ensure these discussions are undertaken. In addition there should be active
promotion of advance care directives by residential care facilities.
The issues of community awareness and national consistency were
similarly identified by Ms Julianne Bryce, Senior Federal Professional Officer,
Australian Nursing Federation:
There is quite a variance in what is available and it varies
considerably from state to state. There are some programs that are quite well
understood and taken up in certain states—Respecting Patients Choices obviously
has quite a large profile nationally but particularly in Victoria. There are a
range of advanced care directives. It is not a nationally coordinated process.
It is a really important conversation that needs to happen. What we are
emphasising in our submission is the importance of the coordination of that
with the legal issues around guardianship and power of attorney so that you
have a really good understanding of what that person would actually like to
happen in their care. It is important to have that conversation as early as
possible so that you know what is going to happen into the future and can deal
with things before you get to that stage where it is incredibly difficult to
make those kinds of decisions on someone else's behalf even where they are able
to contribute to that discussion. It is quite varied and it is important to
have national consistency and a better understanding. More and more we are
seeing it incorporated into undergraduate curricula. It is part and parcel of
postgraduate curricula...it is a varied model across the states and territories.
It is not well coordinated nationally.
Ms Bryce noted the importance of the palliative care workforce in
ensuring that effective conversations take place around future care:
What is really important about advanced care directives is
that the person makes the decision about who they want to talk to. To some
extent we need to have a workforce that is prepared to have that conversation
so to be able to direct people where it is not the scope of practice or to be
competent in that area of practice. It is a broad education that we all need to
have around being able to work with people to set up an advanced care directive
and then to build on that with some specialist expertise for people who are
quite wholly and solely devoted to that role in helping people to have those
A national framework for advance care
In 2008, the Australian Health Minister's Conference (AHMC) commissioned
work to progress the development of nationally consistent guidelines for
advance care directives and related issues. This framework consists of a code
for ethical practice and best practice standards for advance care directives
which are underpinned by nationally agreed terminology. The National Framework
for Advance Care Directives was published in September 2011.
An objective was the mutual recognition of ACD across jurisdictions to be
facilitated through harmonisation of formats and terminology.
This work was supported by the Australian Medical Association (AMA)
which added that it should guide development of nationally consistent
legislation. In order to facilitate greater acceptance the AMA stated that
medical practitioners and other health care providers need to have: quick
access to legal certainty; and protection from criminal and civil liability and
from disciplinary proceedings.
However, the committee heard that the work to date does not yet go far
enough. Dr Yvonne Luxford, Chief Executive Officer, Palliative Care Australia
I think it is fantastic that there has been the group which
has looked at harmonisation of the legislation. It does not go far enough. We
absolutely need single legislation across the country. Even though this is
something that sits within the states and territories, in thinking about it,
there is not really any reason why we cannot use the same model that we use for
achieving national registration and accreditation of health professionals,
where we had model legislation that was adopted in each of the states and
territories with only minor variation. We have ended up with basically national
legislation. I cannot see any reason why we cannot do that with advance care
planning as well.
While the work on a national framework outlined above is a welcome start
it is currently up to the states to progress it further in legislation. Mr
David Butt, Deputy Secretary, Department of Health and Ageing explained:
In fact, it was considered by the Australian health ministers
and a national framework was endorsed by health ministers late last year and so
has been released. That sets out a range of principles that should be followed.
Legislation is very much a state and territory issue so this was about trying
to get standardisation across the country. I notice today that South Australian
health minister John Hill has announced that they are reviewing their
legislation to simplify it, which I understand is in accordance with what the
Minister Hill also said in his announcement that once the
legislation is through they will embarking on a publicity campaign with GPs,
senior citizens groups and residential aged-care facilities to get them to
understand the new arrangements and how they will apply in those services.
Ms Alice Creelman, First Assistant Secretary, Department of Health and
Ageing added that the national framework has been referred to the Standing
Committee of Attorneys-General for consideration.
Respecting Patient Choices and other support programs
The Respecting Patient Choices project aims to set a national standard
for advance care planning. It is currently trialling approaches to advanced
care planning for people with dementia and other special needs groups.
The program is funded jointly by the Department of Health and Ageing and
by the Victorian Department of Health, and it is based at the Austin Hospital
The committee spoke with Associate Professor William Silvester, Director,
Respecting Patient Choices, Austin Health:
We have successfully demonstrated that we could pilot this
program in every jurisdiction in Australia without requiring legislated
documents. We have developed an advanced care plan which is two pages long and
which works under common law. The legal advice we have had is that the two-page
advance care plan we have developed has evidentiary weight under common law
and, because it is recognised by doctors as a document that is witnessed by the
patient or witnessed by the family of behalf of a non-competent patient and
also witnessed by a doctor, it holds sufficient weight that they would be
ill-advised to ignore it. We always get questions about the legalities in the
documents but I have to emphasise that the most important thing is the
discussion. When find that a patient has had a chance to reflect, discuss with
their family and say what they do and do not want, you can almost tear up the
paper that has been used as a tool to generate that discussion. What actually
happens at the coalface, and I am talking about in the emergency department, up
on the ward or in the ICU, what do the doctors do? They always turn to the
family. They always say, 'Look, this is what has happened with your mum. This
is what we think is going on. This is what we recommend. What are your
Health Consumers Association of Australia supported the Respecting
Patient Choices program:
The Respecting Patient Choices program started off in the
Austen Hospital in Melbourne. We would like to see a system nationally.
Particularly in the ACT we care about this because [of] being a small jurisdiction...
We would really support that, but I must say it has not been easy to implement
in the ACT. It was started at least five years ago. Calvary and the public
hospital system started together. It was agreed that it would operate no matter
which hospital you would go to. Since then, Calvary have kind of dropped out of
it. What happens in the ACT if you do a Respecting Patient Choices directive is
that it goes on your electronic health record in the ACT government system.
Then if you come in, say, to the emergency department at the Canberra Hospital,
an alert comes up at the top saying that you have a Respecting Patient Choices
order. That informs the emergency staff. That is really helpful.
Professor David Currow also spoke of the Respecting Patient Choices program.
Professor Currow highlighted the importance of the 'values' conversation in the
advance care planning process:
Prof. Currow: I think that the Commonwealth has invested in
Respecting Patient Choices as a national program. The thing that I would draw
to the committee's attention from that is the values conversation, so what are
the values that underpin this advanced care directive and hence the advanced
care planning? I have been faced clinically with people coming in with
incredibly long and complex advanced care directives and I could challenge them
in about 30 seconds, unfortunately, with a scenario that either does not cover
it or has an unexpected consequence for what they have put down there in very
Senator MOORE: Professor, could you give us an example of
Prof. Currow: It is very easy to give an example.
Senator MOORE: It would be just to make that clear.
Prof. Currow: Yes. I was asked by a urologist colleague to
see a patient of his who was very keen to do the right thing and have an
advanced care directive so that the family was in no doubt as to what was
happening. He had early-stage metastatic prostate cancer, so his life
expectancy was measured in years at that time. He was in good health. He had a
level of function equal to any of us in this room. So he put together an
advanced care directive which said, 'If at any time I am unconscious I want
nothing done, including intravenous fluids, intravenous antibiotics or blood
transfusion.' It was very clear. It was quite explicit. I said, 'So this
afternoon you go out of here and you are knocked over by a bus.' He said, 'Oh,
that's not what I intended. This is only if I am unwell.' 'Okay, so how unwell
would you need to be?' Then you have got a huge issue which is well documented
and is well outside palliative care in lots of other areas of health care where
people shift the goalposts even then: 'If ever I become paraplegic I will shoot
myself.' The person becomes paraplegic and, in fact, a year later they rate
their quality of life as better than it has ever been. So that is why
Respecting Patient Choices is so powerful, because it has been about the
values: what are the values that underpin the sorts of decisions so that we can
reflect those if we are called on to do so? That is rather than a long list of
highly codified directives. You may want antibiotics to relieve the symptoms of
a urinary tract infection without it in any way affecting your prognosis. That
can make you comfortable almost instantly in a way that almost no other therapy
can. So to say, 'I never want antibiotics again,' may not actually reflect that
person's genuine underlying values. Let us look at values. Let us have that
broader community conversation. Let us make sure that we tell the people around
us who are likely to be asked 'What would David want in this circumstance?'
what our values are so that they can articulate those values that would be the
foundation of the decisions that I would make were I able to do so.
Published research about the program shows that its use results in
improved end of life care and patient and family satisfaction, as well as
reducing the stress, anxiety or depression experienced by surviving relatives.
Catholic Health Australia, while supportive of the objectives of
Respecting Patient Choices, had some reservations about what it perceived as a
limited role for a representative of the person. It also commented on the
respecting patient choices program and the need to incorporate changing needs:
We are very much in favour of having the very practical
discussions, which are had with individuals and families, with palliative care
specialists about what their options are. We take a slightly different approach
to that which the Commonwealth has taken. We see that the planning discussions should
give the individuals the opportunity to appoint a person to be part of the
decision making for them in the event of changed circumstances. Respecting
patient choices, a tool promoted by the Commonwealth, places an emphasis on a
contractual-type obligation, a signature by the individual which states 'these
are my wishes'. We respect that way or that framework.
We think a more suitable alternative is where the individual
expresses their intentions, health professionals are aware of and are
respectful of those intentions, but there is also an individual appointed by
the person to act on their behalf. It is that person to act on their behalf,
who is perhaps not central to respecting patient choices, that we say is an
important part of how care planning should be undertaken. Involve a family
member or a trusted person in addition to the expression of your own intentions
to ensure that healthcare professionals are able to deal with some of those
challenges that very often present themselves during these times in a person's
Carers are involved under the Respecting Patient Choices program: for
example, 'Choosing someone to speak for you' is one of the key steps in their
advance care planning process,
and in this regard there appears no difference between Respecting Patient
Choices and Catholic Health Australia's view. It is important to ensure that
discussions take place and that patient wishes are clear, because it is well
known that patient wishes and those of their families often diverge.
Amaranth Foundation is a not-for-profit organisation 'to provide support
and assistance to people living in rural communities, who are living with
serious and advanced life limiting diseases'.
It works with social workers to deliver care and support, including for people
with mental health care needs. The Foundation has a partnership with the
Respecting Patient Choices program for delivering advance care planning
information. Mrs Julianne Whyte, Chief Executive Officer, Amaranth explained
how their advance care planning program works:
With this protocol the advance care directive is done very,
very early in the piece. I can explain later how we do that. I think we have
got a really good model. I do not think our model is expensive at all. We can
do the advance care plan and the ambulance protocol really early with the
person, while they still have competence and capacity, in a family meeting
environment with the GP, signed off by the GP. It is actually an agreement
between the patient and the GP with the ambulance working as collaborators with
us to facilitate it. Yes, they sight it. But it is actually on their electronic
care planning database as well. So the ambulance will get a call from, say,
Greg Santamaria to say that I need an ambulance. It will come up on this screen:
'Greg Santamaria, terminal care, cancer of the lung' or whatever. 'These are
his medications, these are his treatments and this is his treating doctor.' It
comes on the computer screen before they have left the station.
Then when they arrive, we organise a little folder for
them—something like that—which they can put on the fridge, which is their
advance care plan, documentation, who their care workers are and the medication
and protocols that have already been signed off and agreed to by the GP. Then
the ambulance can come. They are advance care paramedics. They actually come to
the patient's house and sit there with them. They are funded for an hour, so
they can stay with that family for an hour.
One paramedic said to me last month, when we did another one
for a lady with dementia, that the hardest thing for him was to do nothing but
he knew the greatest thing he was doing was saying to the family, 'What you are
doing is good palliative care; this is beautiful.' The woman died at five or
six o'clock in the morning and they were called at two o'clock, because they
thought, 'We should be doing something; she sounds as though she's dying.' They
came and said, 'What she is doing is dying. This is okay.' They sat there for
an hour with this family. When I came later and said to the family, 'How was
that experience?' they said, 'It was just amazing to have these competent, big,
tall guys in the ambulance who would sit there with them, have a cup of tea and
say, 'This is really cool—no, we don't need to do hydration and, yes, the pain
relief is okay. Let's check—everything is fine,' and actually sit with the
family for an hour.
Amaranth explained how they had trained with Associate Professor Bill
Silvester of the Respecting Patient Choices Program at Austin Hospital and the
success of the program when they had run it:
Mrs Whyte: There would have been a 70 to 80 per cent take-up
of advance care plans, and of those more than 50 per cent were done in family
conferences. The outcomes of that research were phenomenal. I have the final
report of that research, which was presented to DoHA. It is now on KeySearch.
We have that report with us here...
Senator MOORE: Does it say why the other 20 did not?
Mrs Whyte: Lack of time. Either I did not get to them in time
or they lost competence.
Senator MOORE: So there was no-one who had a philosophical
objection to it?
Mrs Whyte: Nobody. I am not exaggerating here. It was
something that we kept taking back to our board, the steering committee. What
surprised us was that no-one had an objection to it. They knew why we were
coming. They knew why we were having the conversations. Often I would go with
the nurse. They would be joint visits. This is the model that I always try to
use: joint visits with the nurse. The nurse can worry about the clinical
symptoms and I or one of the social workers that we employ can sit there and
listen to the stories that underpin it. Take the carer away, if there is a
carer; but if there is no carer then we work with the community group around that
person, or, because of the social nature of our work, we create a care
environment for them.
At one stage we were trying to look at bringing the Home
Hospice program down to the region but there were some issues with the area
health service in doing that. But I think if we had that it would be a
wonderful thing. It would help people who are self-carers.
The committee heard that not having their wishes respected or being
overruled by others is a great fear for patients and the committee is disturbed
to hear of instances where this has occurred. While it appears this situation
is changing gradually, it is clear that the jurisdictional differences and
complexities which remain around advance care planning, and particularly
advance care directives, work against greater take-up. The committee is pleased
to hear of the work undertaken to develop a national framework. While this work
is seen as a useful start, jurisdictions need to follow up with changes to
legislation. Putting in place a form of nationally consistent legislation to
provide certainly and remove the potential for additional stress at a difficult
time should be a matter of urgency for jurisdictions.
While the committee can understand why legal certainly is an important
issue for physicians and others and agrees it needs to be pursued on a national
basis as outlined above, the committee also recognises that there should not be
an exclusive focus on legal processes. Facilitating communication on death and
dying through advance care planning has an important role to play. The
committee heard that disputes over care and treatment are often resolved not by
legal means but by negotiation and mediation. If all parties have had a
discussion and are clear about a patient's wishes then legal avenues become a
last resort. The committee acknowledges programs such as Respecting Patient
Choices which aims to set a national standard for advance care planning.
Generating discussion is important to assist people to form or reflect
on their views and feelings about their care. It is also the key to patients
feeling secure that their wishes will be respected, for family to be able to
carry out their wishes if necessary, and to assist those providing care.
Discussion should start early but will often need to be ongoing as the
committee acknowledges that advance care plans and directives may need to
change as unanticipated circumstances arise.
A national public awareness campaign as recommended above should not
only encourage conversations but jurisdictions should take the next step of promoting
appropriate jurisdictional information so that individuals can easily take the
next step of putting in place an advance care plan or directive. This
recognises that work is underway to standardise processes around advance care
directives but that it will take some time. The committee recognises that
jurisdictional information on advance care planning and directives is already
available on the Respecting Patient Choices website.
The committee noted the strong track record, documented clinical
outcomes, and stakeholder support for the Respecting Patient Choices program.
It is being implemented across many Victorian health services, as well as in
other states, and in aged care facilities.
Work is also being undertaken with Aboriginal and Torres Strait Islander communities
in the Northern Territory, Queensland and South Australia.
The Victorian Government is a funding partner in Respecting Patient
Choices, and has clearly committed to its adoption in Victorian area health
services. The Commonwealth is supporting its implementation in aged care
settings. Given its strong track record and demonstrated outcomes, the
committee believes more widespread adoption would contribute to greater
capacity for people to ensure a high quality of their lives at end of life,
including ensuring appropriate palliative care. More extensive adoption
nationally does not need to await consistent national legislation.
The committee understands that an important limiting factor is the
funding available to 'train the trainer'. Respecting Patient Choices program
leader Associate Professor Bill Silvester noted that what is needed is 'to fund
the staff who are trained and required to provide the education. The model we
have recommended is that training organisations dealing with nursing staff,
particularly from aged care, be identified and contracted to provide this'.
The committee recommends that in the next review of aged care
accreditations standards, the Australian government consider requiring some
form of advanced care training as a component of the standards.
The committee recommends the Australian government increase the level of
funding for the Respecting Patient Choices program, to support development of
training providers in several jurisdictions, significantly expanding the reach
of the program in the aged care sector.
The committee recommends that national model legislation for advanced
care planning be developed, and that all governments pursue harmonisation of
legislation as a high priority.
The committee recommends that the Australian government fund a national
public awareness campaign around advance care planning and directives, starting
immediately, and expanding once a process of national harmonisation of advance
care planning regulation has been undertaken.
Potential for the PCEHR and technology in the provision of healthcare
The committee explored whether the Personally Controlled Electronic
Health Record (PCEHR) system could be a vehicle to address the issues raised
about jurisdictional differences. PCEHR is a secure, electronic record of a
patient's medical history, stored and shared in a network of connected systems.
Information will be able to be accessed by the patient and their authorised
healthcare providers. Over time patients will be able to contribute to their own
information and add to the recorded information stored in their PCEHR.
The establishment of PCEHR was examined by the Community Affairs Legislation
Committee which tabled a report on the relevant provisions in March 2012.
Currently, there are significant issues with the accessibility of
advance care plans or documents. The Medical Oncology Group of Australia
explained the difficulties associated with accessing records by the right
people at the right time:
...[F]rom the point of view of the practicalities, different
states have different approaches to this. If you say to a patient—if you want
an advanced care directive, different hospitals have different approaches.
Then, when you have gone to the trouble of writing your directive and it sits
in the oncologist's file, in the rooms, but you are admitted to the local
emergency department there is no way of carrying that piece of information. The
intern or resident faced with giving that patient antibiotics, resuscitating
them or putting them on a drip or ventilator does not have access, even in the
best-laid plans. This factors into the whole idea of patient-held record.
E-health issues will need to include a section on advanced care plans.
We have also done some research looking at, once again,
education of patients and carers, to try to encourage them to take up doing
those things. But even if they have gone to that trouble, not all the necessary
people need to find those documents at a time when the rubber hits the road.
Participants in this inquiry, while recognising that there are issues
that will need to be addressed, were positive about the capacity of the PCEHR
to assist with advance care planning. The Victorian Healthcare Association
spoke of the potential role of the PCEHR in the provision of palliative care:
I want to touch quickly on the electronic health record. It
does have some capacity to and is an example of a development in the provision
of palliative care that could provide a benefit. The electronic health record
is best suited to those who have multiple chronic care conditions or to those
who are in constant care. Somebody who is in receipt of palliative care who is
able to understand the access and the way in which the electronic health record
works could receive a benefit, in our view. We acknowledge that that is a step
forward and to the extent possible some guidelines and some information sheets,
however they are created, should be created specifically for people in
palliative care to demonstrate to them what benefit could be drawn from
participation in the Personally Controlled Electronic Health Records system.
Dr Alan Rouse of the Tasmanian Health Organisation expressed his
organisation's hope in the potential of e-health records:
Basically, this process then has been tied to an e-health
initiative and a shared medical record, so the process we have is one where we
use this cultural change to do person-centred care but we have this fantastic
computerised system that works very well with this culture change. The GPs have
access to this in their surgeries.
When you come into the hospitals, we are hoping that the
hospital has access to the resident's wishes, access to what the GP thinks
these wishes are, and to these clinical action plans so that, instead of
admitting them to intensive care or admitting them to the hospital, we might be
able to get on top of their symptoms so that they may be able to go back to
their place of care.
The committee discussed the inclusion of advance care directives in
PCEHRs with DoHA. Ms Sharon McCarter, Assistant Secretary, eHealth Division
It is actively being considered in the context of the fact
that we have now had a pilot with Cradle Coast and the learnings coming out of
that will allow us to be able to create specifications and make policy
decisions around how the advance care plan can work in the PCEHR. At the
moment, as you know, in the personal health summary section for our consumer in
the PCEHR, you can put the location of your advance care directive and the
custodian. That is the first step. Obviously, the work we have done in Cradle
Coast allowed us to be able to progress that and enabled us to incorporate the
advance care record over time in the PCEHR.
Ms McCarter added that pilot evaluation results will be available in
December. Mr Nathan Smyth, First Assistant Secretary, Population Health
Division advised that the Respecting Patient Choices Program is working with
National E-Health Transition Authority (NEHTA) and looking at the requirements
for the PCEHR and how to include an advanced care directive. He added that
there is a separate program underway in Tasmania also working with NEHTA to
find the optimal model. Mr Smyth advised that they are investigating different
models as each advance care directive will differ and need to be tailored to
the circumstances of the individual and their care providers so there does not
have to be a one-size-fits-all solution. However, he stressed that the overall
aim is for anyone who has a PCEHR to be able to put their advance care plan on
it if they wish.
The committee can see the potential and benefits of using technology to
facilitate access to advance care plans. The committee is pleased to hear that
work is underway for anyone who has a PCEHR to be able to include advance care
plans on it if they wish.
The committee recommends that the Australian government ensure
that personally controlled electronic health records have the capacity to
include palliative care information, including advanced care plans.
Senator Rachel Siewert
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