November 2011, the Senate resolved to refer the matter of the provision of
palliative care in Australia to the Senate Community Affairs References
Committee for inquiry and report by 12 September 2012.
The Senate subsequently extended the time for reporting to 19 September 2012
and then again to 10 October 2012.
the matter for inquiry, the Senate agreed to the following terms of reference:
The provision of palliative care in Australia, including:
factors influencing access to and choice of appropriate palliative care that
meets the needs of the population, including:
people living in rural and regional areas,
people from culturally and linguistically diverse backgrounds,
people with disabilities, and
children and adolescents;
funding arrangements for palliative care provision, including the manner in
which sub-acute funding is provided and spent;
efficient use of palliative, health and aged care resources;
effectiveness of a range of palliative care arrangements, including hospital
care, residential or community care and aged care facilities;
composition of the palliative care workforce, including:
its ability to meet the needs of the ageing population, and
the adequacy of workforce education and training arrangements;
adequacy of standards that apply to the provision of palliative care and the
application of the Standards for Providing Quality Care to All Australians;
advance care planning, including:
avenues for individuals and carers to communicate with health care
professionals about end-of-life care,
national consistency in law and policy supporting advance care plans, and
scope for including advance care plans in personal electronic health records;
availability and funding of research, information and data about palliative
care needs in Australia.
Conduct of the inquiry
about the committee's terms of reference was advertised in the national press
and on the committee's website. The committee also wrote to a large number of
stakeholders to notify them of the inquiry and invite submissions. Submissions
were called for by 23 March 2012. However, submissions have been accepted by
the committee throughout the term of the inquiry. The committee received 138
submissions. In referring the matter of palliative care to the committee for
inquiry and report the Senate did not ask the committee to consider the complex
matter of euthanasia. The committee agreed that material received in relation
to euthanasia would be returned to its author. A list of the individuals and
organisations that made submissions is provided at Appendix 1.
hearings were held in Canberra on 24 April and 13 August, Sydney on 2 July,
Melbourne on 4 July, Adelaide on 5 July and Alice Springs on 25 July. A list of
stakeholders who gave evidence to the committee at these public hearings is
provided at Appendix 2.
wishes to express its sincere gratitude and acknowledge the courage of the many
witnesses and submitters who shared their experiences with the committee
throughout its inquiry. The committee thanks all submitters and witnesses who
participated in the inquiry process. The evidence provided was extremely
valuable and has informed the committee's report and recommendations.
The committee notes that Queensland Parliamentary Health and
Community Services Committee is currently conducting an inquiry into palliative
care in that state.
What is palliative care?
Health Organisation (WHO) has defined palliative care as:
approach that improves the quality of life of patients and their families
facing the problems associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual. Palliative care:
- provides relief from
pain and other distressing symptoms;
- affirms life and
regards dying as a normal process;
- intends neither to
hasten or postpone death;
psychological and spiritual aspects of patient care;
- offers a support
system to help patients live as actively as possible until death;
- offers a support
system to help the family cope during the patients illness and in their own
- uses a team approach
to address the needs of patients and their families, including bereavement
counselling, if indicated;
- will enhance quality
of life, and may also positively influence the course of illness;
- is applicable early
in the course of illness, in conjunction with other therapies that are intended
to prolong life, such as chemotherapy or radiation therapy, and includes those
investigations needed to better understand and manage distressing clinical
Australian government and most organisations, including the Palliative Care
Working Group (PCWG), the body responsible for the implementation of the
national strategy on palliative care recognise this definition as being
palliative care has been associated with caring for cancer patients, however as
the population ages and life expectancy increases, so too do life limiting
illness such as dementia, cardiovascular, and respiratory diseases.
These chronic, and generally incurable, illnesses often have a longer disease
trajectory than cancer yet similarly require the provision of palliative care
services. In recent years the broadening of patient groups accessing palliative
care has begun to be recognised and in the future will increase the demand for
quality and effective palliative care services. The committee also heard that
the majority of people would prefer to die at home rather than in a hospital
witnesses spoke of the desire of people to die at home, surrounded by their
family and friends in a familiar environment. Ms Kim McCartney, who has a brain
tumour, appeared before the committee and explained the reasons for her
preference to die at home:
We were talking about this one day and a nurse said to me,
'If you had a choice, would you prefer to die at home or would you prefer to
die in hospital?' I said, 'If I had a choice, I would prefer to die at home.'
She said, 'Why is that?' I said that my mother ended up in Gandarra. I said, 'I
would love to know that I could still just get wheeled outside and sat at the
back door if I wanted to get some fresh air.' Or I could have a cup of coffee
at four o'clock in the morning if that is what I wanted to do. I remember
visiting my mum and her saying, 'Just open up a window,' and telling her, 'I
can't, Mum.' She would say, 'I'm so hot. It's so stuffy in here.' I could not
stand that. That is when they said, 'If we know that's what you want, we can do
our best to make sure that's what you get. We will keep you at home for as long
as we possibly can.' That gave me great comfort. I said, 'That would be lovely.
Even if I have to sleep in the kitchen because it's closer to the door, I don't
care. At least I can be at home, where my family are and my friends know where
I am. I know where I am and I'm not reliant on the buzzer.'
Kim poignantly explained to the committee the resistance she and her
partner Gary had faced getting practitioners to accept her incurable status and
provide her with the palliative care she wants and needs:
Gary and I are so grateful for the palliative care in
Ballarat because it gives you options that normally you would not even be told
about. Like I said, on the second time around at the Royal Melbourne they were
sending us home and I said to the surgeon, 'This is incurable, isn't it?' He
said, 'Yes.' I said, 'All right. So why am I going home to have treatment?' He
looked at me and said, 'What do you mean?' I said, 'You're not going to cure
me, are you?' He said, 'We can't cure you.' I said, 'I know that, so why am I
going home to go through all these loops? Get me in touch with palliative
care.' He said, 'Oh, you don't have to be macabre! There's no need for that. Go
home. Have the treatment. Don't mention that 'p' word here. We haven't given up
As I said to another oncologist in Ballarat, 'The problem is
that what I've got in my head is your enemy. The tumour in my head is your
enemy and that is what you're trying to fight; it just happens to be in my
body. I'm the battlefield and your enemy is living in here.' That is scary. I
know it is their job to try to cure people. That is what they are there for.
Sometimes they are very, very good at it and sometimes they are not—they are
shithouse at it. In the meantime, do not forget where this battle is taking
Ms Cherie Waight explained the resistance and lack of cultural
understanding she encountered when she fought to take her husband home to die:
My late husband used to always say to me, 'The last thing I
want to do is to be put into somewhere where I am just going to die.' So I
would often say to them, 'No, I need to bring him home.' The choice was taken
out of my hands. I would say, 'No, as Aboriginal people we take care of our
own.' That is all I know. We did that with my grandfather when I did not even
know what a palliative approach was... There were cultural differences. I went
home to the in-laws and explained to them I want him to come home. What you
call palliative care was called hospice care at the time. I challenged the
situation and they said, 'He must stay here. You cannot take care of him.' I
said, 'How do you know I cannot take care of him? I have been washing and
cleaning him, feeding him, dressing him and getting him to his parents, who
were also totally incapacitated and unable to assist in things because they had
no transport and were a low-income family. The father had very serious chronic
illnesses too. I wanted to talk to them about some cultural issues, which went
in one ear and out the other. They did not want to know about it.
The committee consistently heard of a need for greater awareness of the
palliative care needs of groups other than the ageing and those with malignant
diseases (cancer). In fact, BlueCare Queensland informed the committee that
approximately one in four deaths that require palliative care services in aged
care facilities are associated with non-cancerous diseases.
its inquiry the committee heard from many submitters and witnesses that the
concept of palliative care is often misunderstood and is generally seen as
[palliative care] is for older people, it is for those with cancer, it is for
the end of life, it is giving up and it is handholding—all those sorts of
things—without necessarily understanding it as a rigorous evidence based active
approach to achieving a good life in the face of a difficult [disease].
Care Australia (PCA) explained to the committee that palliative care is really
about life and that it needs to be an integral part of the health system:
whatever way we perceive palliative care to be, the bottom line is that it is
about life ‐ about the proper care of someone
who is alive, someone who still has days, months or years remaining to their
life. It is about maintaining and improving on a quality of life that you and I
would deem reasonable for ourselves and others that ensures comfort, dignity
and freedom from preventable pain. This is not an impossible ask. In fact it is
imperative that we, as a civilised nation, ensure our end days are filled with
good experiences and memories of meaningful and worthwhile relationships.
Professor Jane Phillips explained that palliative care does not always
have to be at the end of life and that in some circumstances a patient may move
in and out of palliative care following treatment for symptom management.
Professor Phillips explained the key to properly understanding the WHO
definition is noting that palliative care is an 'approach' to care:
There are a few key words in the WHO definition which I am
sure others will have pointed out to you. The key one is that it says that
palliative care is an approach; it is not necessarily saying that it is just
for specialist services but rather saying that it is an approach to care. There
is probably the definition of palliative care and there is a definition about
what constitutes specialist palliative care and a better understanding of what
a palliative approach is.
Although the committee heard that the WHO definition is widely accepted,
some submitters and witnesses consider that it is not broad enough and is still
being misunderstood in the community. The Royal Australasian College of
Physicians (RACP) explained their thoughts on changing the term to ensure
palliative care is disassociated with end-of-life care:
strongly recommend that...palliative care is not terminal, end-of-life care, and
convincing people that it is not end-of-life care and that we are not assigning
them to the exit strategy. Can we change? We have looked at it for years to
change the term 'palliative care' to a better term so that people understand.
It was suggested however that this misunderstanding could be the result
of a cultural reluctance to consider the issue of mortality and that regardless
if how palliative care is defined or referred to, people will eventually
associate it with death:
five years ago we talked about whether we should change our name, but I
thought, 'What are we going to call ourselves? Orange Care or Rhinoceros Care,
or something like that.' Eventually people associate whatever the word is with
end of life, dying. That is just a reflection on us as a society, where we are
at with their comfort zone about our inevitable mortality. It is not something
that we entertain on a daily basis and we seek not to entertain it unless we
really have to do.
Despite discussion around the appropriateness of the definition,
Palliative Care New South Wales (PCNSW) explained that the evidence shows that
'good, specialist palliative care processes improve the quality of life for
people even early in their treatment regime.'
Inc. nurse practitioner candidate Mr Peter Jenkin explained the importance of
disassociating palliative care with end of life care given the benefits of
early diagnosis, intervention and treatment:
...the first and most important thing is we need to be clear
about what palliative care is. If we ask the first person out in the street
what palliative care is, they would generally give you a definition that talks
about the last days and hours of life. That is a problem, because if we only
focus on that then we do not put the plans in place to provide the care at that
Fundamentally however, the committee was advised that palliative care
...in its truest sense...just good care...it is holistic care, it
is meeting all the needs of someone, which is what we should always be doing
anyway. That differs from specialist palliative care. I guess that is why we
call that a palliative approach. We try and distinguish it because palliative
care to many health professionals is the specialist care—the people like myself
or someone from a specialist palliative care service coming in to deal with
symptoms that are burdensome or out of control or significant, psychosocial
sort of distress, whereas a palliative approach, or palliative care, if you
want to call it that, is something that every healthcare provider, from a care
worker to a family member up to a physician, needs to be able to do and do
Current government policy framework
The Australian government commenced development of its palliative care
strategy in 1998 which was endorsed by all of the state and territory health
ministers in 2000 through the Australian Health Ministers Conference (AHMC).
That strategy was updated in 2010 and the updated National Palliative Care
Strategy 2010: Supporting Australians to Live Well at the End of Life (the
strategy) was released in 2011.
Although the strategy identifies goals for palliative care, it also
articulates that responsibility for the provision of these services ultimately
rests with the states and territories:
there is a National Palliative Care Program that supports national approaches,
most palliative care service provision occurs within the remit of the State and
Territory health systems. Each State and Territory has an articulated approach
to palliative care in their jurisdiction. This Strategy aims then to enhance
and build on the work occurring at the jurisdictional level, not duplicate or
The Australian government supports the states and territories through
the provision of funding.
Structure of the report
This report is comprised of 13 chapters:
- Chapter 2 of
the report discusses the current guidelines and standards that guide the
provision of palliative care services.
- Chapter 3
examines the current federal funding arrangement for palliative care.
- Chapter 4
examines state and territory arrangements for palliative care. The chapter identifies
the demarcations between state/territory and federal responsibilities for the
provision of care and considers aspects of how states and territories are
delivering palliative care services.
- Chapter 5
discusses the important role of carers in the provision of palliative care.
- Chapter 6
examines the composition of the palliative care workforce, including its
ability to meet the needs of the ageing population and the adequacy of
education and training programs.
- Chapter 7
identifies some models of service delivery and examines how those models
overcome systemic problems to provide coordinated and quality palliative care.
- Chapter 8
investigates the role of case management in the provision of palliative care.
identifies the role of research and data in the provision of quality palliative
care and looks at what is being done to ensure sufficient resources are being
dedicated to this area.
- Chapter 10
considers the important role of medical equipment and aids in assisting
palliative care recipients to remain in the community for longer. It examines
the different programs in place that support the provision of equipment.
- Chapter 11
examines the unique challenges to ensuring quality and appropriate palliative
care is provided to Aboriginal and Torres Strait Islander Australians, children
and adolescents, culturally and linguistically diverse (CALD) communities, and
people identifying as gay, lesbian, bisexual, transgender or intersex (GLBTI).
- Chapter 12
seeks to address a number of specific other matters which were raised with the
committee throughout its inquiry.
- Chapter 13
examines and discusses advance care planning and the role e‑health may
play in supporting national consistency.
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