Throughout the committee's inquiry many stakeholders labelled
Australia's palliative care system as fragmented. One recurring theme in
responses to this fragmentation has been that a method of case management be
introduced to assist families and carers navigate the system at what is a very
The perceived fragmentation of palliative care is consistent with what
this committee is often told about fragmentation and coordination problems with
the wider health system. In palliative care it results at least in part from
the fact that the provision of palliative care services, although jointly
funded by the federal government and the state and territory governments,
remains the responsibility of the individual state and territory governments.
These governments both have and require the flexibility to allocate those funds
to meet the needs of their different population and demographic
characteristics, meaning there are varying delivery models and organisations.
The service providers are generally those providing aged care services, but the
service itself is not aged care. Service provision differs radically between
rural and urban settings, and despite the fact that life-limiting illnesses do
not discriminate based on age, many palliative care services and settings
relate in some way to aged care.
The fragmented approach to palliative care provision
Throughout the committee's inquiry it became clear that there is much
variation in the standard of care being delivered. In addition to the
variation, the committee consistently heard of difficulty being experienced by
carers and families as they sought to access palliative care services through
the health care system and spoke of its fragmented nature. SARRAH explained
their concern that the provision of palliative care and therefore access to
palliative care is currently fragmented:
We are of the view that Australia should be justly proud of
its health system, which offers a range of palliative care services. However,
these services across the nation are fragmented and not coordinated.
Catholic Health Australia suggested that the current fragmented nature
is the result of the fact that palliative care in Australia is still relatively
In some respects, specialist palliative care is still in its
infancy. Services have grown up very much in an ad hoc fashion across
Australia. There is no consistency. What does a specialist palliative care
service look like? It varies from location to location and from state to state.
The Medical Oncology Group of Australia (MOGA) explained that
the disparity between service provision in rural and regional areas and
services provided in metropolitan areas is concerning:
...in that area of traditional end-of-life care there is a
great lack of conformity around the country in terms of access to specialised
palliative care services, and the heart-wrenching comments that have come to us
from our members who work in regional and rural Australia really reflect that
devastation of the oncologist trying to manage these patients right to the end,
often as the only oncologist in town without the back-up of hospice facilities
and community nursing and sometimes even access to basic drugs in local
pharmacies that you would need for end-of-life care. So that is one problem. In
the city, it is not so bad for that traditional pointy end of palliative care,
but in the country it is a big problem.
Professor Jane Phillips suggested that the effectiveness of palliative
care service delivery could be improved through a more coordinated and focused
approach at the federal level:
...we need to enhance the delivery of palliative care,
strategically, at the Commonwealth level, either through a lead agency or
through an enhanced palliative care division. That is really looking at the
ways in which the Commonwealth needs to be able to work across operational
boundaries, to focus on improving palliative care. If we look at the many
reform documents that have been published, palliative care gets a mention in
many of them, but it actually requires reform in primary care, aged care, acute
care services and community based programs.
A solution proffered by many witnesses to the current fragmented
approach to palliative care was the introduction of a case manager to assist
families and carers through what is an extremely difficult period.
The case management response
Mrs Fiona Engwirda spoke of the difficulties she encountered when trying
to navigate the system to access services and equipment necessary to deliver
palliative care to her daughter:
I am an educated and articulate member of the community and I
cannot stress enough how difficult this process has been for me. I am concerned
that other members of the community who may be isolated, may not speak English
as a first language or may be marginalised with various reasons may be lost in
the system when they should be supported. I acknowledge the difference that
exists between disability and palliative care but also the crossover that is
intrinsically linked for many children with complex medical conditions.
When the views of stakeholders were sought on the idea of a case manager
in the palliative care system, there was general support for case management as
a key feature in the provision of palliative care given the level of
fragmentation and the complexity of navigating the system.
Dr Jenny Hynson of the Australia and New Zealand Paediatric Palliative
Care Reference Group spoke of the pain parents encounter when trying to
navigate the system and how this could be assisted through the implementation
of a case manager:
Dr Hynson: She certainly would not be the first parent to
make a comment like that. I had a father say to me that there were two
nightmares: one was the illness and the fact that my child was dying, while the
other was trying to navigate the system. There is layer upon layer—
Senator MOORE: And every state is different. There seems to
be commonality in the fact that it is tough.
Dr Hynson: Yes. I was on the edge of my seat while listening
very intently to the occupational therapist, because I am so familiar with the
issue of families not being able to get the basic equipment they need and the
respite. Parents very willingly take on the task of looking after their child.
Home is the centre of care. All they are asking is that they have the information,
the support and the infrastructure to do it, and that they can have a bit of a
rest from time to time. Most of their requests are very modest. They are not
asking for somebody to come and do this. They do not want to be in hospital,
which is where they end up because the system is not great.
So, case management is a huge piece of it. In our experience
it is patchy. If you get a good case manager everything works superbly. If you
get a case manager at all, the experience and knowledge is variable.
Senator MOORE: Where would you get a case manager from?
Dr Hynson: A lot of families with children with conditions
like this have packages of care. Some of them are able to—
Senator BOYCE: Through disability funding?
Dr Hynson: Yes, and a case manager may or may not come with
that. If one does come, they may or may not have the expertise to know where to
access other support for the family. We have a case manager with my team, and a
lot of equivalent teams throughout Australia—
Senator MOORE: Based at the children's hospital?
Dr Hynson: Based at the children's hospital. So we would make
sure families are linked into all the things that we are aware of and our case
manager would work with others in the community to pull that all together. But,
of course, not every family gets to us, or they get to us late when the
clinical staff decide that the child is in a palliative phase. Because it is
often not acknowledged that that is where it is going, the referrals often do
come late, which means families miss out on supports further upstream. I think
that trying to put this into the control of families as much as we can would be
a great thing, and trying to pull together some sort of one-stop shop that
could be internet based is on our list of things to do. I think this is where
the reference group could potentially be, because it already exists. I am happy
to talk about how we could take it to a better place, but there is already—
The Australian Nursing Federation informed the committee of their
support for case management stating:
...it is absolutely imperative, particularly when there is
distance involved, that there is someone who can really pull that together. I
am sure you have heard lots of times about the different agencies involved and
what a nightmare it is. Often, again, it is about who is in the community. I
know that in some instances it might be the allied health person. It is about
who has a good, permanent—and I underline the word 'permanent'—relationship
with the individual in the community. We go on about fly-in fly-out, but that
is another issue.
Dr Yvonne McMaster, a retired palliative care physician explained how
she considers case management could operate to ensure the provision of adequate
What is needed now is a palliative care project manager in
every Medicare Local, to ensure that palliative care has the right priority for
the community. There are many things that that project manager could be doing.
The rural nurses are overworked and overstretched, and many are approaching
retirement age. They are holding on by their fingernails, doing a magnificent
job—trying to teach the GPs, having to do battle with them; most have no office
back-up and no relief; the conditions are almost Third World.
We need more social workers throughout rural New South Wales
to ensure that the psychological, social and clinical needs are met. There is a
big role for case coordinators, and social workers are filling in some of that,
but they need Medicare items for end-of-life and palliative care consultations.
That may be something the committee can carry forward.
What I am suggesting for rural palliative care is that 11
major towns in New South Wales be strengthened as palliative care hubs. Each
should have funding for a palliative care specialist as soon as one can be
found. We should be recruiting for palliative care specialists for these towns
from the UK and New Zealand. I am told, however, that services are required to
have six failed attempts at recruiting within Australia before they are allowed
to recruit overseas. It seems to me a good way to put off having to spend any
money. Can you put a stop to this?
The ACT branch of the Health Consumers’ Association of Australia were
also complimentary of the suggestion raised of having a case manager to assist
carers navigate the system when trying to access palliative care services:
CHAIR: In the very short time we have got left I would like
to ask about one of the issues that came up this morning, that it would be good
to have case managers. We had an example of where Ms Jackman was telling us
about her experience with her husband and trying to organise care and
coordinate the care herself. She has experience in health care and herself did
not know where to access particular services. We have subsequently discussed
that with a number of witnesses. What are your thoughts? Would that be
something useful if a case manager could be identified that can help the
consumer access care, identify information and work out what they need when.
Ms Snell: Absolutely. I think that that model is incredibly
valuable. We have often heard our members talk about having a navigator, which
is a similar kind of model, within the hospital system, particularly for the
elderly. It just gets beyond their ability to cope. Those people who have got
family able to take time off work continually get by, but I think of those who
do not have them, who are not that well-resourced. They are lost in the system.
Dr Stevens: I do think sometimes that the palliative care
nurse practitioners in some ways function in that role.
National Disability Services explained that case management could be
particularly helpful in situations where a patient's needs are complex:
Case management is appropriate where the person's needs are
complex and there are a number of parties that need to work together well. So
in many cases that would be appropriate, I think, when a person reached the end
stage of their life. The example we gave in our submission in relation to the
NPY Women's Council and the way in which they managed to pull together a lot of
relevant parties, some of which may not have been otherwise thought of, was, I
think, a good indication of how a case management approach is quite important.
The case manager
There was widespread support for the idea of a case management approach.
The committee considered which professionals were well placed to be case
managers, and how case management can operate without adding additional layers
of bureaucracy or complexity.
Services for Australian Rural and Remote Allied Health (SARRAH)
suggested that although general practitioners (GP) were often suggested, in
some rural and remote areas that was not practical and an allied health
provider would be more appropriate:
Mr Wellington: The issue was raised about who should lead
that case management team. We have a view that it does not necessarily need to
be the GP. In some rural and remote settings there may not be a GP, it may be
an allied health professional.
Mr Bishop: We have an amazing member from Western Australia
who is a dietician who has worked in that community for many years and has a
really strong rapport with the Aboriginal people in that community. That
person, who has the trust and rapport of those people community, would seem to
me to be the most appropriate person to be a case coordinator.
Mr Wellington: Another example, just leading on from that,
relation to Aboriginal health workers in remote communities, where there are no
GPs. Why shouldn't they be deemed as appropriate case coordinators,
particularly given that there are a range of cultural issues that need to be
Alternatively, Palliative Care Australia suggested that the new Medicare
Locals be used as a vehicle for delivering better palliative care to the
...we will have dialogue continuing as these Medicare Locals
develop and evolve. Because palliative care is not that high profile, if you
like, in the healthcare sector, there is a considerable amount of advocacy that
needs to be done in this area, through Medicare Locals and through the boards
being advised that palliative care is an important issue and that end-of-life
care must be considered. It comes down to advising those boards about
palliative care, and hopefully the process we are going through now is one
measure to do that.
...when you talk about palliative care, it is like: 'No, we
haven't really thought about that because we have a list of hundreds of other
things that we see as priorities locally.' But, when you start to discuss
palliative care in the sense that it is a public health issue and that it is an
issue that really needs to be taken on board from a primary healthcare
perspective, then they start to think, 'Yes, this is something we need to
consider.' This comes back to the notion of Medicare Locals and local hospital
networks becoming a bit more involved in it...
Catholic Health Australia however expressed some reticence at placing
too many expectations and responsibilities on Medicare Locals:
We are in the process of rolling out Medicare Locals that are
to be the hubs meant to oversee this coordination of services. I do not want to
overburden the Medicare Locals because they have modest operational budgets and
[there are] many aspirations for them. It would make sense that the Medicare
Locals become the place in which aged-care providers, as the illustration,
relate to ensure that there is access to the specialist palliative services
within their aged-care facilities. That then triggers the discussion that the
aged-care facility is not currently funded via the aged-care funding instrument
for a specialist palliative care function. It is one thing to have access
through the Medicare Locals to the coordination of it; it then needs to
determine that the aged-care funding instrument would need to be expanded to
have a specific palliative care capability within it.
Palliative Care Nurses Australia (PCNA) suggested that GPs may reluctant
to take on the workload that would be required of a case manager, and that
nurses could effectively fill the role:
Some nurse practitioners are already working with GPs. They
are in the GPs' surgeries seeing people and going out to visit them as well.
They can take a lot of the load off the GP for the more run-of-the-mill issues
that might arise. If somebody's pain management needs changing but nothing is
really new apart from a slight increase in pain, then the nurse practitioner is
able to just increase the current medication.
The PCNA went on to explain how palliative care nurse practitioners
would be effective case managers:
The care of somebody in that situation [community palliative
care] is complex, and it can change very quickly. So a big part of the role of
the palliative care nurse is being able to anticipate what might happen and
talking to the family and saying, 'All right, if your relative deteriorates
then these are some of the things we might have to look at—for example, putting
the person into respite.' So it is helping the family come to terms with the
fact that they may have to do that in the very near future...
...communication skills ... [are] fundamental to what we do in
the area of palliative and end-of-life care. A lot of the problems that arise,
particularly in the acute hospital setting, are because many health
professionals, particularly medical specialists, are just not comfortable
having those conversations about end of life and their communication skills are
not necessarily excellent, shall we say.
PCNA consider that palliative care nurse practitioners would be a
natural fit for the case manager role:
...Having worked as a clinical palliative care nurse in the
community, that is very much part of our role: going out, seeing how the
patient and the family are managing and organising extra services for the
family. Often they struggle with the amount of care that is required for the
person with an end-of-life-stage illness at home... So it is a big ask for
families, and as health professionals we recognise that and are very alert to
the signs that they need more help.
Professor Jane Phillips, a Professor of Palliative Nursing at the
University of Notre Dame and St Vincent's Sacred Heart, echoed the views of
PCNA explaining to the committee that nurse practitioners, in conjunction with
Medicare Locals, could ensure effective delivery of palliative care services:
...nurse practitioners are an exciting and evolving role, but
it is a role in which we really want to make sure that nurses are working in
partnership with other members of the interdisciplinary team. It is not
necessarily about being an independent practitioner. There is great scope to be
thinking about nurse practitioners integrated into Medicare Locals.
In making this point however, Professor Phillips highlighted the
importance of ensuring consistency in the nurse practitioner role regardless of
Despite hearing general support for the concept of a national case
management system, Mrs Julianne Whyte of Amaranth Foundation expressed some
reservations identifying the importance of first establishing how case
management would actually work:
...in a lot of the Hansard reports and a lot of other
submissions people talk about a 'case management' approach. I have really
struggled in our research to look at what 'case management' meant and what it
was. Even when I was working in care respite as a case manager there were issues
around whether it was a professional case management or referral brokerage
model—how people interpreted their role of case manager. Our research showed
that it really needs a very professional social work type approach to a case
management model, similar to what they are doing in mental health—recognising
that it needs this comprehensive skill set that perhaps is not being provided
at the moment.
...we found from our research that social work perhaps should
be and could be the better profession to deliver a lot of the care coordination
or supportive care that is not being provided to people in palliative and
end-of-life care. Some of the research that we did, especially with the
division of general practice, that looked at how we worked with practice nurses,
the linked nurses and the supportive care networks to get GPs to do case
conferences, family meetings was a really good project with some fantastic
outcomes but probably needs to be seated outside of the GP domain rather than
within it, because I think it gets swallowed up by the processes within GP
services rather than looking at what are the needs of families and caregivers.
South Australia Health noted the advantages that could be gained through
Absolutely. Yes, in an ideal world, a case management model
at the diagnosis of a life-limiting illness would actively support people to
navigate what is a very frightening and difficult area of health care, often
because of all the factors that you have raised, and especially if you have a
medical practitioner that does not believe in palliative care for a start,
which is actually a difficulty that we encounter at a service level.
Although supportive of the concept of case management, South Australia
Health identified that the key to ensuring access to and delivery of effective
palliative care relies on the identification and establishment of appropriate
clinical pathways, including diagnosis and referral:
It is certainly a challenging area. The work that we have
looked at through the clinical network is to try and get pathways nailed that
are clear and easy to use for the primary care providers specifically. We have
a working party at the moment looking at referral criteria into palliative
care, because I think that is the first area where it actually falls apart. We
went through a stage many decades ago where palliative care accepted every
comer, and now the demand has outstripped the resource and we have got
specialist teams. So where is specialist palliative care different from general
end-of-life care and how do we actually articulate that? The onus is on
specialist palliative care services to make clear statements about what the
referral criteria are, to make it clear and simple so that it is well
understood and then support that with education.
South Australia Health further explained that they are currently working
on establishing and identifying these pathways and hope that it will ensure
people do not fall through the gaps:
We have key clinicians and also the primary healthcare
sector, oncology, all our chief referrers sitting around the table nutting out,
right down to the language, what is going to make it clear and simple so that
they will actually know whether this is a referral that will get into
palliative care or whether they need to be going somewhere else. And if they
are going somewhere else, palliative care also need to be clear in helping to
guide them so that it does not become too hard and the gap opens and people
fall through it.
The next phase of that work is looking at the patient
pathway...We have got to look at that patient journey. That is something that the
clinical network has been asked to review and, again, to look at it through the
eyes of the consumer and not the eyes of the services. So there have been some
directions about moving forward that we hope will start to address some of
those concerns about consumers not getting services, or not knowing when to get
them or how to get them, or what criteria are required for a referral to go
through and be realised...
...of course it comes back to whose responsibility it is and
whether specialist palliative care should take leadership, at least in being
able to say, 'The referral's come through and we're going to coordinate other
services to take care of the end-of-life non-specialist population.' That is
going to need a lot of work to nut that out...
Throughout the course of its inquiry the committee has received much
evidence suggesting that many people requiring palliative care are unable to
access that care given the complexities of the health care system and its
fragmented nature. The committee is concerned that the fragmentation of the
palliative care system acts as yet another barrier at a time when families are
most at need of the support that can be gained through the provision of
palliative care services.
The committee considers that the role of case managers is important. It
acknowledges the point made by Amaranth Foundation, that there are different
case management models, and there needs to be clarity around what works best in
Case management requires both a person to take on the role, and the
allocation of responsibilities to that person. Patients and carers also need to
be able to identify who the person is, and where they should go to obtain case
management services. All of these things indicate that program funding of some
sort would be required: if there is no recognition of the role and no money to
pay for it, then it is unlikely to be done, and certainly unlikely to be done
consistently, reliably or equitably.
For this reason a case management model will need recognition at a
federal level with the agreement of all of the states and territories. As well
as ensuring both funding and consistency, agreement is desirable to ensure that
the implementation of such a model did not result in an additional layer of
The committee acknowledges the work being undertaken in South Australia
to map the palliative pathway in order to understand where general
'end-of-life-care' and specialist palliative care intersect and ensure that the
health care providers, whether they be aged care, primary care or palliative
care specialists deliver a consistent and complete standard of palliative care
for the patient's palliative journey.
The committee recommends that the Council of Australian Governments
consider developing and implementing a case management model.
The committee recommends that the Council of Australian Governments
develop and implement a uniform national palliative care pathway that clarifies
when general palliative care moves into specialist palliative care, and maps
the diagnosis and referral process to ensure that a palliative patient's
journey involves coordinated access to all necessary services.
The committee recommends that the Council of Australian Governments
review the Medicare Locals structure to consider how the provision of
palliative care services, both general and specialist, is integrated into
primary health care at the local level.
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