Chapter 4
State palliative care services
Introduction
4.1
As noted in chapter one, the majority of palliative care funding is
provided by states and territories, with services often delivered by
organisations that operate in a single state or region. Despite the
significance of state funding arrangements, the committee received submissions
from only three state or territory governments: Tasmania, New South Wales and
South Australia. The committee also found that there was relatively little
discussion in other submissions of state funding arrangements. The committee
did not receive submissions from the governments of those states that witnesses
often regarded as having strong service delivery models: Victoria and Western
Australia.
4.2
This chapter examines the funding of palliative care services in the
states and territories and whether funding arrangements contribute to
variations in the standard of care.
4.3
In describing these arrangements it is noted that as a result of
decisions through the Council of Australian Governments, (COAG), the
Commonwealth assumed responsibility for the provision of aged care health
services for all non-indigenous people aged 65 and over and all Aboriginal and
Torres Strait islanders aged 50 and over from 1 July 2011.[1]
As a result of that COAG agreement, government funded services provided through
the Home and Community Care program (HACC) to older people, and younger people
with a disability, will transition to a 'Basic Community Services for Older
People' program, with service providers being paid by the
Commonwealth from 1 July 2012.[2]
The provision of HACC equivalent services for younger people with a disability
will remain a responsibility of the states and territories.[3]
Services and funding provided by the states and territories
4.4
As identified earlier, (in chapter 3) at present there is no consistent
reporting or data collection available that accurately sets out how the states
and territories allocate the subacute funds they received from the federal
government. The committee however received evidence which suggests that
although services are provided in each jurisdiction, the complexity of funding
arrangements results in variations in the standard of care provided.
Victoria
4.5
Professor Rohan Vora, President of Palliative Care Australia and
President-elect of the Australasian Chapter of Palliative Medicine considered
that Victoria's model overall was the 'gold standard'.[4]
Palliative Care Victoria representatives spoke on the system of palliative care
that is provided in that state. Like Professor Vora, they suggested it is
'perhaps one of the most comprehensive in the country':
[t]he Victorian specialist palliative care system is well
supported by the Victorian State Government...In 2011-12 expenditure by the
Victorian State Government on specialist palliative care services [was] around
$108 million.[5]
4.6
Palliative Care Victoria suggested that the approach used in that state,
the Palliative Care Resource Allocation Model (PCRAM), which is based on a
model developed by Palliative Care Australia, could be applied nationally to
overcome the current disparities:
The PCRAM provides a formula for more equitable allocation of
new funding based on the needs of the population within defined geographical
catchment areas. PCRAM takes account of changes in the population, age
structure, rurality and socio-economic status and can be used to address
historical funding anomalies and facilitate greater equity in funding
allocation and access to services over time. Victoria is also progressing the
implementation of a service capability framework for palliative care services,
which, amongst other things, articulates the roles and responsibilities of each
service capability level (for inpatient, community and consultancy services
respectively) to support patient care, service linkages, education and research
within and across regions.[6]
4.7
Professor Vora nevertheless indicated that the excellent general model
can belie significant service variations:
Even within Victoria it is very patchy. Once you then move to
Queensland or other states it gets even more patchy. Metro South is very
different from Metro North. As soon as you move out of Metro-anything you
suddenly start thinking that maybe you have got to a rural area. It all
depends.[7]
4.8
Professor Vora explained that the application of Victoria's model in
other jurisdictions should be considered, as it would be one way of
guaranteeing that 'wherever you are in Australia... you will get a high quality
of palliative care.'[8]
4.9
Victorian Healthcare Association confirmed that a key reason for the
strength of Victoria's system is not merely the quantum of funding but the
delivery model:
The enablers for an efficient use of health resources arise
from good governance. Victoria’s devolved governance model has enabled local
boards of governance to bring a community perspective to strategic decisions
about health service structure and how to meet local demands with limited
resources. These decisions should be based on the broad understanding of the
social determinants of health and the wide range of health and community
services available to address identified community needs. This has been a major
strength of the Victorian health system.[9]
Western Australia
4.10
Like Victoria, palliative care services in Western Australia are well
supported by government funding. Silver Chain, a Western Australian community
based service provider, explained that 'probably 95 per cent or a little bit
above' of its funding is provided by the Western Australian (WA) state
government.[10]
4.11
Aged and Community Services WA described the Western Australian system,
agreeing that services were of a high standard, but that the system did limit
the availability of some:
Community palliative care services are provided in WA by
visiting specialist teams, including Silver Chain Palliative Care and
Palliative Ambulatory Services. The Ambulatory Service, funded by the WA
Department of Health, can provide consultancy advisory support, on-site patient
reviews and consultations regarding complex palliative care needs, and staff
education services to support clinical staff in various settings including
residential aged care. It is however only accessible from Monday to Friday
during normal working hours.
Silver Chain in WA also receives state government and
Department of Veterans Affairs funding (with additional bequests and
donations), for home palliative care, and is widely acknowledged as the
benchmark for quality community palliative care services.[11]
4.12
Silver Chain, which now has operations in South Australia and
Queensland, explained the differential they have observed between the level and
standard of care in the different states in which they operate. In respect of
its operations in Queensland they identified that at present community based
palliative care is quite limited and the majority of services are provided
through HACC:
The resources in Queensland in terms of specific community
based palliative care are very limited. It is probably a differential of about
1000 per cent ...in comparison to what is provided in Western Australia. The majority
of services for people in terms of the care that they are receiving is
supported predominantly through HACC funding. That provides a level of nursing
care and support, but probably not the level that people require at the end of
life.[12]
Queensland
4.13
Silver Chain's observations of the Queensland system were echoed by
Palliative Care Queensland (PCQ) which stated in its submission to the
committee that:
The current situation in relation to palliative care service
provision in Queensland is dire and requires immediate review and attention.
Overall, the system lacks coordination at all levels:
- There is no state-wide plan for palliative care service delivery;
- Access to palliative care is inequitable;
- Services are poorly funded and inadequately resourced;
- There are severe shortages of specialist doctors, nurses and allied
health staff;
- There are significant gaps in education and research at local level, and
-
No Queensland specific awareness raising/community education initiatives
exist.[13]
4.14
The committee acknowledges that the provision of palliative care in
Queensland is currently the subject of a Queensland Parliamentary Committee
inquiry. Although the committee did not receive evidence from the Queensland
Government to its inquiry, the Queensland Government's submission to that
current state inquiry into palliative care services and home and community care
services, detailed the palliative care services the state government provides
in Queensland:
Palliative care in Queensland is provided in hospital
(private and public) and nonhospital environments (including residential
facilities, hospices or in a person’s home) via a complex service network of
providers with multiple funding sources (including the State Government,
Australian Government and private contributions) and diverse governance
structures. It is an intrinsic component of health and human service care
delivery.[14]
4.15
The Minister explained that palliative care is provided both in the
community and in the hospital (in-patient) setting and that in addition to community
palliative care, specialist in-patient palliative care services were provided:
...in designated units which are located at the following
hospitals: Bundaberg, Caloundra, Gold Coast, Gympie, Ipswich, Logan, Mt Isa,
Redcliffe, Rockhampton, The Prince Charles Hospital in Chermside, Toowoomba and
Townsville.[15]
4.16
The Minister also identified that in addition to the statewide
paediatric palliative care service operating from the Royal Children's
Hospital, palliative care is also delivered in 'non-designated areas of
hospitals':
...data for 2010/11 shows that a further 18 hospitals ...also
delivered services under what is termed a designated palliative care program...
[a]ll remaining Queensland public hospitals provided some type of palliative
care subacute service where palliative care type was the principal clinical
intent [and that] Queensland Health has increased the number of admitted
patient episodes for palliative care in Public Acute Hospitals by 66% since
2004/05 and non-admitted occasions of service for palliative care nearly
four-fold since 2006/07.[16]
4.17
PCQ explained their view that remoteness and distance impact on the
allocation of funding and suggested that the current bundling of funding for
subacute care meant that the area was not getting sufficient money. PCQ
explained that ring-fencing of palliative care is necessary to ensure adequate
funding, and to prevent patients who require palliative care from ending up in
the acute care setting:
When the first lot of the equivalent of NPA subacute care
funds came out we knew that 99 per cent of it was spent in rehab. The next time
it came out we gained probably around 10 per cent. Geriatrics, geriatric
evaluation and management, and psychogeriatrics also do badly. What tends to
happen is the idea is that it goes to rehab because everybody wants to get
everybody better—which is fine. The problem is that not everybody does get
better. So what happens to those people who do not get better? They end up
taking up acute care beds. That is where they end up: in emergency and acute
care beds.[17]
4.18
PCQ reiterated that implementation of the Victorian approach, PCRAM,
should be considered:
To go back to Victoria again, look at the Victorian
palliative care resource allocation methodology. They look at population size.
They look at the socioeconomic profile, the age profile and the remoteness
factor. Queensland remoteness factor is a whole different ballgame again.
Those are the things you need to look at. When you block
grant someone you say, 'What is your population' and all that. If that money
goes to the health and hospital service, it will be spent on something. It may
be spent in subacute care, but whether or not it gets spent in palliative care
is going to be an issue of the transparent service agreement between the service
manager and the hospital service. That is why I am saying we need to have some
ring fencing or idea about how much needs to be allocated for palliative care.[18]
4.19
They suggested that of the current funding allocated to subacute care,
25 per cent should be dedicated to palliative care:
The last payment of subacute funding was $327 million for
Queensland... We believe that we need 25 per cent of the $327 million... We did not
get any in the last round and all we have got in this round is less than 10 per
cent. It is impossible for services to keep being funded if we do not get any
money federally.[19]
4.20
In addition to the need for ring fencing of palliative care from
subacute care, PCQ also explained that the money provided under the NPCP to
support community based care needs to increase as populations in service areas
grow:
...there is this thing called palliative care program funding
in Queensland, and that is an amount of money that is given from the
Commonwealth to the states each year. We are unsure how much Queensland gets,
but that money is given to all of the health service districts and used for
home based palliative care. In talking to the services in each region, we can
see that that money has never been increased—or at least no-one has ever seen
an increase in that money. That means that you have populations that are
growing by as much as 25 per cent a year and the money not growing to look
after them... Their referral rate is growing significantly, and the money has
just not kept pace.[20]
4.21
Blue Care is one of Australia's largest not-for-profit providers of
residential aged and community care, which supports community based clients,
residents of aged-care facilities and families throughout Queensland and
northern New South Wales. It was also of the view that Queensland's current
system of funding palliative care, which involves secondary funding through
hospitals, requires reform. Blue Care explained that in Queensland:
[t]here is no specific funding available for early
intervention, after hours on-call services or grief recovery programs. End of
life services are funded by Queensland Health and managed by the local health
service districts. Community care providers, which include not-for-profit
providers such as Blue Care, apply to the hospitals for funding when they
determine that the person may be entering the terminal stage of their illness
and within the last three months of their life. As it is difficult to determine
when someone will die, people with life-limiting illnesses often receive
significantly less than the allocated three months available; or, occasionally,
they just run out of funding at the very end stage of their lives.
The average Blue Care hospital funded palliative admission
for 2011 covered only 20 visits, which represented less than three weeks of
seven days a week service. At the other end of the scale, where time until
death is unpredicted, the client lives longer than the three-month time frame
and funding may be ceased. Funding can often be limited to one hour of care per
day. However, one nursing visit for an unstable, deteriorating or terminally
palliative client can take up to three hours. Personal care, domestic
assistance and allied health services and respite support are often not funded.[21]
South Australia
4.22
The South Australian government funds palliative care using a casemix
approach:
All inpatient activity is funded as sub-acute on the casemix
funding model using the diagnostic related group codes. All out of hospital
(community) and outpatient activity is currently funded through weighted
outpatient occasion of service.
As a result of implementing the [South Australian
Palliative Care Services Plan 2009-2016], sub-acute funding is now being
directed to expand the community based component of palliative care services
and is enabling increased numbers of people, if they choose, to remain at home
at the end of their life.[22]
4.23
At the committee's hearing in Adelaide, The South Australian Department
of Health provided an overview of their palliative care program:
SA Health has fostered a very solid framework for palliative
care on two fronts. One was the launch of the statewide Palliative Care
Services Plan, which runs from 2009 to 2016.
Also, the development and endorsement of the clinical network
for palliative care came into effect in February 2010 to support the plan,
which provided a whole lot of strategies around how we can move palliative care
forward, taking into account the ageing population and the factors that we are
going to have to deal with as we move forward.
...[W]e have had to rework the way in which business is done,
moving away from local palliative care services towards regional palliative
care services, with greater requirements to partner with country services in
particular. This is so that the choice of people who want to die at home can be
realised, so that they have services that are equipped and able to provide the
care that they need.
The structure of the palliative care plan looked at
palliative care services in terms of their levels of expertise and what they
offer. They were designated as level 6, level 4 and level 2, which kind of
correlate with Palliative Care Australia's level 3, 2 and 1 services. So you
just multiply those levels by two and you get the equivalent. Level 6 services
are full tertiary palliative care services, regionalised with requirements to
be engaged in providing research evidence and input into the education programs
across the undergraduate and postgraduate curriculums as well as primary health
care. They support level 4 services, which are largely based in the peri-urban
parts of Adelaide but are now also in four of the major country
hospitals—Whyalla, Port Lincoln, Riverland at Berri and Mount Gambier.
They would then have a responsibility, as their capacity
builds, to invest in services to support the smaller services that exist out
there, like in Kangaroo Island or out on the Eyre Peninsula, where the distance
and remoteness is quite a factor. There has been a clinical network to support
the rollout of this plan. The clinical network, until very recently, was
largely the palliative care clinicians... We have broadened that out to include
our community partners so that district nursing, domiciliary care and
Indigenous health will be represented at the steering committee level. It will
be broadened out so it really works with partners' right across the whole
healthcare arena.[23]
4.24
Unlike the 'dire' situation in Queensland,[24]
the committee heard from stakeholders that the palliative care services being
provided in that state were effective.
4.25
Silver Chain was complimentary in the observations it made of the South
Australian system in which they now operate:
Community based care is predominantly a nursing led service,
with support from the in-patient environment and consultancy services that feed
back into the community ... the difference with that model is that it has a very
clear focus on beds and consultancy services and outreach then into the
community. So the expertise sits in those environments in trying to outreach
back into the community, rather than being based in the community itself, and
giving true community based solutions to the problems that arise for people at
home.[25]
4.26
Professor Vora considered that elements of South Australia's system based
on their palliative care plan are admirable.[26]
Similarly, Resthaven, which employs approximately 4,000 staff, has 1,000
residential beds and supports 'around 7,000 people a year and around 3,000
people at any given time',[27]
explained that in South Australia, the expert and specialist care and
intervention that is required for palliative patients 'is not directly funded
into the aged-care system' but relies instead on 'good relationships with the
public health system' which is a responsibility of the state government. [28]
4.27
Resthaven went on to explain this situation to the committee suggesting
that it was this systemic issue that needed to be recognised – the fact that
there are no 'natural linkages' between aged care and specialist palliative
care as aged care is 'predominantly outsourced by governments to the non-government
sector, whereas predominantly the funding for any form of specialist palliative
care service is retained within the public system.' In South Australia this
care is provided through community palliative care teams, staffed by public
sector employees:
The natural connections in the system are with the health
system, not with the aged-care system. We have very good relationships with
some general medical practitioners who have taken a special interest in
palliative care, but there are not a lot of general medical practitioners who
are in that space. That definitely makes a difference to how easy it is for
aged-care staff to effectively manage an individual who has high palliative
care needs.[29]
New South Wales
4.28
NSW Health explained that at present in that state palliative care
services 'are provided at primary, specialist, and paediatric care levels,
within both metropolitan and rural service models:'[30]
Primary palliative care services cover the continuum of care
for all people who are experiencing a life limiting illness with little or no
prospect of cure. This service incorporates general practitioners, community
nurses, allied health staff, and other specialist services such as oncology and
aged care professionals, working in the community, residential aged care or
acute care facilities. These professionals may have existing relationships with
the patient, or be providing interventional care in conjunction with more
palliative approaches.
Specialist palliative care services include clinicians with
recognised skills, knowledge and experience in palliative care. This level of
service is appropriate for patients with a life limiting illness whose
conditions have progressed beyond curative treatment, or patients who choose
not to pursue curative treatment. Specialist teams include Directors of
Palliative Care, medical practitioners with qualifications in palliative
medicine, clinical nurse consultants with qualifications in palliative care
nursing, palliative care nurse practitioners and social workers with experience
in palliative care. Formalised bereavement support and pastoral care is also
provided within the specialist team.
Palliative care services in metropolitan NSW Local Health
Districts typically include patient beds in acute or sub-acute public hospitals
or in a third schedule hospital, inpatient consultations, and community medical
and/or nursing services. In rural Local Health Districts palliative care
services comprise nursing services, fly in/out doctors are funded through the
Medical Specialist Outreach Assistance Program. Inpatient beds are provided on
a clinical needs basis. There are particular challenges for rural and regional
palliative care services where there is no locally based specialist medical
palliative care service. To attempt to address this shortfall medical
specialists from metropolitan Local Health Districts make regular visits to
some regional/rural areas.
Specialist paediatric palliative care is provided by
metropolitan Children’s Hospitals, each offering an integrated palliative care
service in the home, hospital and respite/hospice care through the NSW
statewide children’s hospice.[31]
4.29
In its submission to the inquiry New South Wales Health (NSW Health)
informed the committee that it is in the process of mapping 'palliative care
services against population needs and investigat[ing] appropriate palliative
care population planning tools used in other jurisdictions to assist in future
service planning' to ensure that adequate services are provided across the
state.[32]
4.30
Despite NSW Health's statement that palliative care is currently being
delivered at all levels to all parts of the state, palliative care service
providers operating in the state suggested to the committee that funding from
the state government was lacking.
4.31
HammondCare is a service provider specialising in dementia care,
palliative care, rehabilitation, older persons' mental health and other health
and aged services. It explained that, although demand for services had
increased, funding from the NSW state government had not:
Sub-acute funding from the NSW Government for inpatient
palliative care services has not kept up with demand. Activity targets for
sub-acute hospitals have remained unchanged for too long, despite an increase
in the number and acuity of palliative care patients as the population ages,
and there is no mechanism for adjusting ongoing funding to meet these
challenges.[33]
4.32
HammondCare told the committee that over the past three years they had
increased the number of palliative care beds at their facility by '47 per cent'
yet had not received any additional funding to support the extra services. They
also suggested that there is a need for government funding to be provided for
capital works in addition to operational expenses:
...the funding that is available only covers operational costs,
with no provisions for construction work or building depreciation. An
additional source of funding in this area is crucial, given that the National
Health and Hospitals Reform Commission (NHHRC) identified sub-acute services as
the ‘missing link’ in the health system and called for a “major capital boost”
for these facilities.[34]
4.33
HammondCare suggested that the bundling of COAG funds for palliative
care into the subacute care category was resulting in less funds being
allocated to palliative care:
In NSW, COAG funding intended for sub-acute services is
distributed varyingly through local health districts (LHDs), limiting the scope
of services that specialist affiliated health organisations (AHOs) are able to
deliver to people living in their own homes or in residential aged care.[35]
4.34
Like HammondCare, the Bega Valley Community Health Service (BVCHS),
located in the Bega Valley Shire with a population of 30,060 and covering 6,052
square kilometres,[36]
were also concerned that state government funding for palliative care was
inadequate. They explained that primary level palliative care funding is
provided through a mixture of general funding mechanisms including general
practice rebates, public hospital and community health budgets, residential
care subsidies and community services funding. They were concerned that funding
received for enhanced primary palliative care services under the Commonwealth's
NPCP:
...is inadequate and is unable to meet the present and future
palliative care demand. Currently, this funding is used locally to fund the
part time Palliative Care Registered Nurse position and provide a weekend
generalist community nursing service for people requiring palliative care.[37]
4.35
The BVCHS explained that it provides services through two general
district hospitals as well as through a variety of nursing and allied health
professionals.[38]
As the majority of its staff are employed on a part time basis, including the
specialist palliative care registered nurse, the BVCHS informed the committee
that any future additional funding would:
... best be directed towards service support aimed at meeting
the often complex psychosocial needs of people requiring palliative care [and
a] suitably qualified professional such as a Social Worker, Counsellor or
Psychologist could be employed to fulfil this role.[39]
4.36
The Hunter New England Local Health District Palliative Care Clinical
Stream informed the committee in its submission that due to the fragmented
approach to data collection and inconsistencies in reporting palliative care
services, it is difficult for service providers to make a case for additional
palliative care funding.[40]
Tasmania
4.37
The Tasmanian Department of Health and Human Services (TDHHS) in their
submission to the inquiry informed the committee that following a 2004 state
government commissioned review of the provision of palliative care, they had
been working on implementing the recommendations which the review made. The
Model for Palliative Care service delivery was developed as a result of the review
and is now in use in the three Tasmanian Area Health Services.[41]
The TDHHS explained that although the three Area Health Services operate
independent palliative care services they have a consistent approach and meet
monthly to 'facilitate good networking and problem solving between services.'[42]
4.38
In its submission to the inquiry, the Tasmanian Association for Hospice
and Palliative Care Inc. informed the committee that of the areas requiring
additional funding identified in the 2004 Review, although progress has been
made, more needs to be done in terms of 'designated palliative care beds across
the State' and the palliative care workforce which is still experiencing a
shortfall.[43]
Committee comment
4.39
The evidence received by the committee on state and territory funding
was limited. However, there were recurring themes in the evidence. First and
foremost was concern about the lack of data about palliative care service
provision and expenditure, particularly as a component of sub-acute care in
hospitals. This makes it difficult to determine whether services are being
appropriately provided.
4.40
Other themes included whether funding was for services at the
appropriate level and for round-the-clock care; whether funding growth was
matching service demand; and the consistent message, noted in other chapters of
this report, that the funding and delivery of palliative care as part of
sub-acute health care was not efficient, whether considered from a funding or a
service delivery perspective.
4.41
The committee is concerned by the level of variation in the standard of
care being provided. Given the differences in service models and demographics
between jurisdictions, a one-size fits all approach to funding and the
provision of care may not be appropriate. Nevertheless, the current variability
appears undesirable. The committee acknowledges the work going on at COAG, and
in individual states such as Western Australia (which took a new approach in
2008), in South Australia, and the current review in Queensland. These are
positive signs that palliative care funding and delivery is getting attention
from policy-makers. The challenge will be to translate this attention into
adequate resourcing, effective team-based care, and sufficient support outside
hospital care, both to ensure efficient use of funds, and effective support of
people's wishes to 'die well' and, often, to die at home or in an appropriate
non-hospital setting.
4.42
In later chapters, the committee looks at some of the problems – and
solutions – that will help address these issues, such as workforce planning,
service delivery models and case management. However, the committee first
considers the role of the largest workforce in palliative care: carers.
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