Chapter 7
Models of service delivery
Introduction
7.1
Funding regimes are not the only aspect of palliative care that vary
from state to state, as well as locally. There are different ways that
palliative care service delivery can be organised, and different kinds of
organisations that are involved. Some care is delivered publicly, some
privately. Some is delivered in hospitals, some in residential facilities, some
in aged care, and some at home. A range of different professionals can be
involved, and the way they are paid can vary too.
7.2
During its inquiry, the committee heard regularly about some particular
service models that were highly regarded or were involved in important
innovations. It also heard that such innovations could be placed under pressure
or cut because of pilot funding or non-ongoing funding being all that was
available. This chapter focusses on a small number of service delivery models,
to consider what was regarded as positive about these, and what issues arise in
implementing them. All of them focus on community-based care, but in each case
the setting varies.
Models of service delivery
7.3
Throughout the inquiry, submitters and witnesses repeatedly referred to
the model of care provided by Western Australian based Silver Chain[1]
as being very effective in providing community based palliative care. In its
submission to the committee, Silver Chain outlined and explained what it has
identified as a 'best practice model of specialist community palliative care
provision', [2] the model
which it has implemented in Western Australia and is starting to extend to both
South Australia and Queensland.
7.4
The best practice model through which Silver Chain operates integrates
specialist community provision of palliative care with primary health care
infrastructure. The model involves three specific service offerings – a
metropolitan community palliative care service; a palliative nurse consultancy
service; and a palliative rural telephone advisory service, all guided by the
principles of building capacity within families to care for their own;
integrated and coordinated services; interdisciplinary/multidisciplinary care
planning; and evidence-based, client-centred care:
1. Metropolitan Community Palliative Care Service: Provision
of in-home specialist palliative care to clients within the metropolitan area
and to all metropolitan care facilities that do not have a registered nurse
managing care 24 hours a day.
2. Palliative Nurse Consultancy Service: Provision of a
palliative nurse consultancy service to metropolitan public/private hospitals
and residential facilities where client care is managed by a registered nurse
24 hours each day. The service provides specialist nursing advice, assessment,
procedures, specific staff education and telephone follow up to meet the care
needs of a specific client. Referrals are accepted from medical practitioners,
registered nurses and allied health staff that are providing care within the
facility. Involvement is limited to a period of five days following which the
client is separated from the service. The client can be re-referred and there
is no charge to the facility or the client.
3. Palliative Rural Telephone Advisory Service: Clinical
Nurse Consultants who have specialist skills and knowledge provide telephone
advice to rural service providers regarding managing the palliative care needs
of a specified client. This service is available via a free call telephone
number 24 hours per day, seven days per week.[3]
7.5
Silver Chain explained that its services are delivered through an interdisciplinary
team consisting of specialist nurses, medical consultants, registrars, general
practitioners, allied health professionals, care aides, and volunteers.[4]
This model enables Silver Chain to provide a whole of metropolitan service, 24
hours a day seven days a week, engaging general practitioners and providing
personal and respite care.[5]
7.6
Silver Chain identified that their service:
...admits approximately 3,000 people annually, with more than
660 people receiving care on any given day, and an average length of stay of 84
days. Sixty per cent of admitted clients are supported to die at home (compared
to national average of 25-30%). Recent analysis of Silver Chain data over the
last two years demonstrates that the majority of those who died at home had no
hospital admissions during their episode of care with the service.[6]
7.7
The services provided by HammondCare in New South Wales were also
identified as a very successful and effective model:
HammondCare, a not‐for‐profit, aged‐care provider of good
reputation entered the palliative care service provision field in 2009... they
opened a palliative care suite ('Bond House') within their own RACF at
Hammondville (a suburb of Sydney). This is at HammondCare's own expense and is
currently not receiving any extra external funding.[7]
7.8
Dr Yvonne McMaster, a retired palliative care physician, spoke of the
palliative care suite provided by HammondCare. Dr McMaster explained that the
services provided through HammondCare's suite differ from the usual aged care
situation as it provides:
1. Assessment by Specialist Palliative Care Team prior to
referral, whether this assessment occurs at home/residential care or in
hospital.
2. Support from the specialist palliative care team;
including specialist consultation in the palliative care suite, 24 hour
telephone advisory service, GP support, pharmacy access, multidisciplinary
input and weekly meetings, bereavement support for families and education for
nursing staff.
3. GPs with a special interest in palliative care are
provided with a specific mentorship and capacity‐building
programme to support them.
4. In-‐house
pharmacy licence which provides access to emergency palliative medications.
5. Designated Palliative Care Suite nursing staff.
6. All residents and their families will work with staff to
plan for future care, in accordance with wishes (regularly reviewed and updated
as circumstances change).
7. Tailor made palliative care education plan including the
Program of Experience in the Palliative Approach (PEPA), buddy shifts and
mentoring. PEPA is available to all disciplines including GPs.
8. Comprehensive education program for all staff.
9. Close links with the in-‐patient
unit.
10. Access to HammondCare’s specialist palliative care
medical, nursing, allied health, pastoral care and project manager consultative
services across Sydney.
11. Refurbished private rooms with ensuites.[8]
7.9
HammondCare further detailed the services they provide through the
palliative care suite model and how this model is addressing gaps it has
identified in the provision of palliative care:
The difference is firstly and foremost in the training and
skill level of the staff. The staffing levels are greater within the palliative
care suite. Access to specialist nursing and specialist medical support is there
because of our link with Braeside Hospital and the palliative care team. We
have set up a partnership where there is a 24-hour on-call telephone advice
line which provides the nursing staff immediate advice about what is happening
rather than waiting, which is the norm in aged care. It is really about time
and expertise, the gaps that we face. Time is not just that nurses in aged care
are time poor; we all know that. It is more the turnaround time for a person
who is deteriorating. As Dr McVey will say, the identification of that is
critical in and of itself. A person is deteriorating and then the nursing staff
need to call the GP, who may not be available on that particular day and it may
take 24 hours before the GP arrives. The GP may write an order for symptom
control of some form of medication. That needs to then go to a pharmacy, which
is often off-site. That needs to then come back to the aged-care facility and
it is not unrealistic to expect that 48 hours have passed from the initial
determination that the person is deteriorating.
The facility has two options: either do our best to be kind
and caring to a person, which we all know is not enough, or send the person
through to the acute system via the accident and emergency department, and we
all know that is not ideal either. So what we have tried to develop is a
process and expertise level that circumvent that time issue. We have acquired a
drug licence for that unit, which means we are able to hold stock within the
residential aged care facility of medications that is not the norm. I have to
say it was quite an interesting process getting that drug licence because I do
not think there are that many requests of that nature anymore. So there was
surprise coming from the pharmaceutical branch of 'Do people still do that,
actually get drug licences?' That meant we could have medication on site.
Specialist support and a dedicated GP that has been working with the
specialists to make sure the GP is actually aligned with the treatment plans.[9]
7.10
HammondCare advised the committee that its costing of the program indicated
an additional cost of $50 000 per bed per annum:
At the moment it is being cross-subsidised because we are
able to put that in the larger facility, so we have put that into a 124-bed
facility and we dedicated nine beds, so there is cross-subsidisation. We do get
Commonwealth funding for people, but the additional cost is approximately
$50,000 per bed per annum.[10]
7.11
When asked about their model and the inspiration for its establishment,
HammondCare representatives explained to the committee:
We have known for a long time that the care of older people,
particularly in nursing homes, during the dying phase is not done universally
well. A lot of aged care providers will say that they do palliative care really
well. That really is based on a lot of good people who care but it is not
necessarily technically competent. As I said, being an organisation that had
the benefit of schedule 3 hospitals, palliative care hospitals, it was an
opportunity to say that the purpose of acquiring those hospitals was to be able
to say, 'We want to provide older people with the right care throughout the
various stages of their life and we need to make sure we can cross over those
areas of expertise. So our aged care services were fabulously expert in
dementia care and we had hospitals that were expert in palliative care. So how
do we bring the two together?...It was only about creative thinking; it was a
good idea.[11]
7.12
HammondCare further explained to the committee that although their
applications for funding were declined they decided to 'do it anyway' and have
commissioned the unit for the coming year to demonstrate 'not just the
cost-effectiveness but the better outcome for the people and families.'[12]
7.13
HammondCare informed the committee that although they had again
approached the Commonwealth seeking funding to expand their model, the
complexities of providing aged and palliative care prove to be barriers to
further future investment:
...it [palliative care] is an area that we do not think can be
ignored. I think we need to be looking at innovative models, and there are
opportunities through flexible funds programs and whatnot to get these things
up and running and off the ground. We just started that before that was
actually open—the flexible funds round last year.
...The response [from government] is that absolutely there is a
need, but like any response the government is saying, 'We think we are putting
enough into aged care so there is not really an option for a lot more top-up'.
It costs more than aged care but it costs less than subacute care, and so it is
that in-between land. In the state health system there is that very real truth
that, even if a person is out of that subacute bed or acute bed and in an
aged-care bed, another person very quickly fills that, so there is not a real
dollar saving. It is just that the cost of care for this person is less than
what it would have been there. So it is hard to actually get people to come on
board.[13]
7.14
Another example of a service model delivering effective palliative care was
Eastern Palliative Care Association Incorporated. Eastern Palliative Care is
the largest community based palliative care service in Victoria. In the 2010-11
year Eastern Palliative Care 'supported over 1260 new clients... 83 per cent of
whom has malignant disease and 36 per cent who were under the age of 69.'[14]
7.15
Eastern Palliative Care do not have access to hospital beds but rather
work with hospices and inpatient palliative care units to support clients to
'die in their place of choice with symptoms well managed'.[15]
Representatives of Eastern Palliative Care explained how its services are
effectively targeted and delivered:
Every client in the region who gets referred for specialist
palliative care comes into our intake team, and our intake team go through an
assessment process where we look at whether they have generalist needs or
specialist needs.[16]
7.16
EPC explained that in the case of generalist needs, where the patient is
'relatively stable and has no particular issues; the family is all on board
and the aged care facility is on board,' they would not provide ongoing
support, rather:
[EPC] would provide advice on the phone to the aged-care
facility. They may be referred off for RDNS, the Royal District Nursing
Service, in case they need extra support, but we would not keep going with
those.[17]
7.17
To determine the care that will be provided, Eastern Palliative Care's
intake team perform an assessment. Those who have symptom issues that are not
being managed are then provided with care services.[18]
7.18
Eastern Palliative Care explained that referrals to their service are
generally made by doctors although families can make referrals and aged-care
facilities are increasingly referring patients for assessment.[19]
EPC informed the committee that they do not have a waiting list, rather they
have a process in place which enables their intake team to assess the patient's
need and see urgent clients within four hours:
Ms Hogan: We do not have a waiting list...our intake team, they
triage and so the people who are very urgent get seen within four hours and the
people whose needs are not so urgent might have to wait 10 days, but they are
still on the books and we are still making contact with them and so there is
still that ongoing contact. So that whole concept of the waiting list is
something that we do not have at all.
Ms Moody: My board have given directions, if for some reason
we cannot see that person within 10 days, that we are to put on extra staff and
meet the community's needs. It is the board's responsibility to find funding
for that.[20]
Common issues faced by these models of service provision
7.19
It is clear from the examples provided that levels of funding, and
availability of workforce, are hurdles that face service providers in providing
effective and efficient care. However, there are also other important factors.
7.20
Palliative Care Australia attributed the success of the Silver Chain
model to its nurse-led coordinated multidisciplinary workforce:
At the moment where it is working well in terms of coordination
of care, such as the Silver Chain model that I mentioned before, it is usually
a nurse-led model in terms of case coordination. But it really does include an
entire multidisciplinary team that sits down and meets. So there is all that
back-end work that goes into ensuring somebody receives the best possible care.[21]
7.21
Similarly, Palliative Care Queensland suggested that the success of the
Victorian model, as demonstrated by Eastern Palliative Care's service, could be
attributed to their governance arrangements where a consortium within a region
coordinates service provision:
The Victorian model of having a consortium within a region
where you try to pull together the paediatric, adult, disability or whatever
other services and get them talking to each other and sorting out the problems...
is absolutely vital. If you sat in Brisbane on a hotline you would have no idea
what Roma offered or what Cairns had, even though you might have a list of
services.[22]
7.22
The Victorian Healthcare Association echoed this view and explained that
the 'devolved model of governance' in place in Victoria enables innovation in
service delivery and the allocation of funds:
...through the devolved model of governance there has been a
capacity for local solutions to be put in place. Our funding model here in
Victoria is reasonably complex. It has been based loosely on an activity based
funding system for 18 or 19 years now, so we are well established in the
playground. Activity based funding to hospitals in Victoria still counts for
only about 65 per cent of hospital funding. There is a range of other different
funding mechanisms as well that come into play. Then each of those hospitals
have their own board of governors. Therefore they have their own chief
executive and the creation of strategy, while it needs to be consistent with
state government policy directions, can still be intuitive to the way in which
that policy direction is interpreted at the local level. That creates
opportunity for innovation.[23]
7.23
Silver Chain in Western Australia informed the committee that it
received approximately 95 per cent of its funding from the Western Australian
state government:
...It would probably be 95 per cent or a little bit above.
There are donations and bequests we receive, but the majority of funding is
through the state government with a small amount of DVA funding.[24]
7.24
Through Palliative Care Queensland's description of the fragmented
provision of services in that state, the barriers that have been overcome by
Silver Chain, Eastern Palliative Care and HammondCare become clear:
Obviously, under the new health arrangements—we have talked
before about the divide between the Commonwealth and the states—there are also
the issues around what happens about out-of-hospital care. Within a state, you
get caught up with the systems manager, the 17 health and hospital services and
a statewide paediatric service that goes across the state, so it will be
interesting to see how that develops and that will hopefully help with some of
these issues, but what happens about the other 17?
We come from an area where the services are already really
fragmented and vary hugely, even within a metro area, let alone the rest of the
state. We are worried that we will have 17 totally different services
developing with different priorities on palliative care. People may have to
travel from one district to another if they want to have certain services, even
in end-of-life care. Firstly, we asked for improved coordination of services
across Queensland and the development and implementation of a state-wide
service plan. We note the South Australian plan and the strategy in Victoria,
and hope that with the new state government—who have, wonderfully, called an
inquiry into the whole state of affairs there—we might start getting some
traction. We are very hopeful that we can work with the new government on
reversing some of the issues.[25]
7.25
In addition to interdisciplinary teams and effective governance, some
inquiry participants were concerned that Australia has a medical model of care,
resulting in the use of relatively high-cost, hospital based care, with less
use of holistic and home-based care than might be desirable:
The community hospice model of care which is still very
prominent in the UK, USA, Canada, New Zealand, Europe and parts of Asia, has in
Australia been superseded by very sophisticated Palliative Care based on a
strong medical model. While quality Palliative Care is undeniably important, it
is of some concern that the hospice model of care, which can support and
underpin home care has virtually been abandoned in Australia. With the strong
“medicalisation” of palliative care in Australia, the concept of holistic and
person centred end-of-life care has at times been compromised and people’s
right to choice in place of care and type of care thereby discounted. This fact
I would suggest, is in part represented in the low statistics of home deaths in
Australia.[26]
7.26
The Victorian Healthcare Association raised a similar issue:
International research suggests that up to 90 per cent of
people with a life-threatening illness would prefer to die at home, or in a
home-like environment. The capacity to meet a person’s wish to die at home is
important as it allows them to spend time with their families and friends and
maintain their own routines and preferences in a safe and familiar environment.
Despite this preference however, only 26.5 per cent of Victorians die at home,
while 56 per cent died in hospital.[27]
7.27
Silver Chain (noted above) provide a contrast with this Victorian result:
sixty per cent of their clients were able to die at home.
Committee view
7.28
The committee concludes that for service delivery to be both
cost-effective and achieve positive outcomes for the dying, their carers and
families, there must be a focus on 'dying in place'. The committee is not
indicating that dying at home is better than in hospital, and it recognises
that choices around the place where palliative care occurs must also depend on
carers' availability and capacity (see chapter 5).
7.29
The committee is concerned that people's preferences are not being met. Furthermore,
the cost of care in a hospital-centred system is higher than that based around
'dying in place', where appropriate. Thus Australia effectively risks running a
system that is relatively expensive, and does not meet people's needs or
preferences around death.
7.30
The committee concluded that regardless of where care is delivered, multi-disciplinary
teams and good coordination were critical to effectiveness. Regional service
delivery organisations were often praised for their work, and it was clear that
effectiveness 'on the ground' and at the local level was important. However,
what was not clear was the extent to which governance should be devolved to
achieve good community service delivery. The committee heard that there was a
strong sense that devolved organisation is a feature of success in Victorian
palliative care. In contrast however, Silver Chain, one of the most highly
regarded services in the field, is a very large organisation that does not
appear to operate with a particularly devolved or decentralised organisational
structure.
7.31
The committee takes the view that the most important consideration in
service delivery reform at present is to increase the capacity to support
palliative care in the home (including residential aged care), or specialised
hospice facilities where that is the preference, and reduce unnecessary (and
often unwanted) transfer into the hospital system. This is likely to have the
effect of saving money. Most important however, is that it will provide a
better experience to patients and those around them.
Recommendation 11
7.32
The committee recommends that service delivery models include a greater
emphasis on community-based care, 'dying in place', and a reduction in
unnecessary hospital admissions.
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