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May 2009
Palliative Care
Services Plan
2009-2016
Acknowledgements
We offer sincere thanks to the many contributors whose commitment and knowledge have informed
the development of the Palliative Care Services Plan 2009-2016.
The Palliative Care Plan Steering Committee, the Palliative Care Plan Reference Group
and Plan Development Project Team
National Library of Australia Cataloguing-in-Publication entry
ISBN: 9780730899617 (pbk.)
Title: Palliative Care Services Plan 2009-2016
Subjects: Hospice care - South Australia.
Terminally ill - Services for South Australia.
Palliative treatment - South Australia.
Other Authors/Contributors
South Australia. Dept. of Health. Statewide Service Strategy Division
Dewey Number: 616.029
This publication may be reproduced in whole or in part for work, study or training purposes,
subject to the inclusion of an acknowledgement of the source.
Any enquiries about or comments on this publication should be directed to:
SA Health
Statewide Service Strategy Division
PO Box 287, Rundle Mall, 5000
South Australia, Australia.
Phone: (08) 8226 6000
Government of South Australia
Palliative Care Services Plan 2009-2016
Table of Contents
Minister s Foreword (ii)
Introduction 1
Profiling death and its causes 4
Planning end of life care 5
Expanding and reshaping
palliative care services 7
Service delineation 7
Statewide access to specialist expertise
and support 9
Moving from institutional to integrated
regionalised service models 10
The right balance between in-hospital
and out-of-hospital care 11
Model of palliative care in SA 12
Palliative care services out of the
hospital setting 13
Palliative care services in the
hospital setting 15
Palliative care services in the
residential aged care setting 17
Supporting end of life
care providers 20
Improving access and equity 21
Enhancing quality 23
Implementation 24
Expanding the vision 24
Directions at a glance 27
Next steps 28
Timeframe for action 28
page (i)
Table of Contents
Appendix 1: Definition of terms 31
Appendix 2: End of life
trajectories 33
Appendix 3: Expanding and
reshaping palliative care services 36
Appendix 4: Service delineation 37
Appendix 5: Equipping teams
for change 47
Appendix 6: Supporting end
of life care providers 51
Appendix 7: Improving access
and equity 55
Appendix 8: Enhancing quality
and measuring performance 61
Appendix 9: The workforce
profile 63
Appendix 10: Glossary of terms 65
Appendix 11: Acknowledgements 67
References 68
Palliative Care Services Plan 2009-2016
Minister s Foreword
South Australia s Health Care Plan 2007-2016 included a commitment from the South Australian
Government to develop a new statewide palliative care plan. The State Government wants to see
a heightened awareness that not only will there be more people requiring end of life care in the
years ahead, but that the provision of this care is as much a responsibility of the whole health care
system as it is for palliative care services.
The first report of the National Health and Hospitals Reform Commission also recognised
end of life care as a priority area for health system reform.
SA Health s Palliative Care Services Plan 2009-2016 outlines the South Australian Government s
plan to expand and reshape services, in light of increasing demand for end of life care across
the health system.
The Palliative Care Plan:
sets out a new structure for palliative care services within SA Health >
outlines the steps that will be taken to reorganise existing palliative care services through a mixture of >
consolidation and expansion to ensure they continue to play their crucial part in the care of those people
at end of life with the most complex needs
describes the initiatives that will be taken to ensure that wherever possible, people who want to receive >
their end of life care at home can do so, even when they have complex or emergent care needs
details the work ahead to build the capacity of all end of life care providers to ensure high quality end of life >
care to all South Australians who need it, regardless of age, disease or location
seeks to draw families, communities, neighbourhoods and workplaces together in caring for people >
at end of life, and after death, to better support those who experience grief and loss
promotes the widespread uptake of advance care planning through an Informed Choices Program . >
The Palliative Care Plan builds on the vision set out in South Australia s Health Care Plan and links with a series of
other statewide plans that focus on the health needs of country South Australians, older people and those living with,
or at risk of developing chronic illnesses.
The Plan has been developed in consultation with key partners and the implementation of the plan will be undertaken
by regional Health Services.
Hon John Hill MP
Minister for Health
page (ii)
Minister s Foreword
Palliative Care Services Plan 2009-2016 page 1
Introduction
Introduction
South Australia s Health Care Plan 2007-2016 identified an increasing demand for
palliative care services in the coming years.1 Planning to meet this increase in demand
presents a series of challenges which include the community s expectations of access to
quality end of life care services, particularly for the growing population of older people
who increasingly are living alone and with fewer available family members able to
provide support. Compounding this challenge, is a workforce that is itself ageing and
retiring, and cannot be readily replaced.
South Australia has a well established and well regarded palliative care sector. Palliative care services for many years have
championed holistic approaches to care and delivering integrated services across in-hospital and out-of-hospital settings.
In developing this new plan for palliative care, emerging knowledge about caring for the dying has been merged with the
strengths of SA current palliative care service delivery program.
The Plan positions the work of palliative care services within the broader context of all the end of life care needed and
provided across the state. It recognises and responds to both the growing demand for end of life care and a noticeable trend
toward an increasing proportion of all end of life care being directed toward palliative care services.
Further, it promotes a shift in the level of reliance on palliative care services and directs palliative care services towards those
people with the most complex end of life care needs. It expands the focus on building the capacity of generalist providers to
ensure continuity and their active participation in care through to the end of life.
The Plan itself is structured in two sections. The main body of the plan sets out the strategies, key enablers and initiatives
that SA Health will put in place over the next eight years to shape the future role and impact of palliative care services.
Background and contextual detail to explain the decisions and steps planned have been incorporated in a series of
Appendices.
Terminology
The terms palliative care and end of life care require definition and their use within this Plan needs careful
clarification.
The term palliative care is used to refer to specialty clinical practice and service delivery.
End of life care is used to describe care that is planned for, negotiated with, or provided to a person at the end of their life.
It is used without specific reference to timeframes and hinges instead on the orientation toward providing care
appropriate for a natural life event and the ordinary place of death within a person s lifespan.
The use of the terms in this way is not intended to value one over the other but to assist in differentiating the roles of
specialist and generalist providers of end of life care in ways that clarify the contributions of each, while allowing for
consistent use of terms. Appendix 1 sets out the use of these terms in more detail, and a more general glossary of
terms has also been provided in Appendix 10.
Care at end of life
Whenever a person dies in South Australia, a range of effects can be felt across families, communities and workplaces.
Dying is a normal part of the life cycle and affects people of all ages. The impact of a death can also have a profound effect
on the health and wellbeing of close family members, friends and co-workers. The experience of caring for someone at
end of life can be made more difficult when needs go unmet, symptom control is inadequate or care is fragmented or lacks
coordination. Just as poor quality care can have a profound and lasting impact on those left behind, the effect of high quality
end of life care can ripple across generations. In this respect, the quality of care provided to every South Australian at the end
of their life is everyone s business. Death should not be hidden away; nor should care of the dying be completely handed over
to professionals.
page 2 Palliative Care Services Plan 2009-2016
Caring for those who are dying can serve to:
deepen the bonds within families >
build communities across neighbourhoods; strengthen friendships and collegial networks >
foster compassion and resilience >
enhance respect for health and life >
reduce community anxiety about death. > 2,3,4
Responding to people s concerns
End of life care ends in death, but begins at a point that varies according to a range of factors. In some instances people make
the transition to end of life care when diagnosed with an incurable illness. For others, end of life care is triggered by subtle
clinical changes, an event, a revision of prognosis, or a simple recognition that death is coming. In some circumstances end of
life care can last for years, and in others only days, or even hours, as can sometimes be the case in an Intensive Care Unit with
the withdrawal of life-support.
Listening to people s concerns about the care and services they need at end of life brings into sharp focus the themes that
must be central in planning service delivery.
Their expectations include that:
> a range of care options will be available
the workforce delivering care will be skilled >
there will be continuity of caregiver and resultant capacity to form a therapeutic relationship with the care team >
there will be around the clock access to support and advice >
social supports are as important as symptom management >
grief and bereavement support will continue beyond the immediate post death period. >
People in South Australia expect access to comparable levels of care and support regardless of their location in the state.
Services need to be positioned in ways that spare people the need to move between multiple sites for the services they need.
They need to be able to have timely conversations that walk them through their likely end of life pathway. Most people want
to be actively engaged as a key decision maker about the type and extent of care they receive, where they receive that care
and when the time comes, where they would prefer to die. For families, understanding the physical nature of the dying process
provides important contextual information that helps avoid crisis-induced decisions at critical moments, particularly during the
last days of life. Emotional, social and spiritual symptoms are acknowledged as being of as much importance as the physical
symptoms in achieving quality living at the end of life.
The Palliative Care Council of South Australia has played a key role in promoting community awareness of the palliative
care philosophy and has contributed to the increasing awareness of the needs of people who are dying and those who care
for them. Their continuing work in advocacy, community representation and health promotion align with and support the
directions of this Plan.
End of life care challenges
South Australia s Health Care Plan 2007-20165 identified an increasing demand for end of life care in the coming years.
The challenges of the future that shape the Plan involve the need to manage a substantial increase in demand for and
community expectations of quality end of life care services;
to a growing population of people that will be both older, increasingly living alone, with fewer available >
family caregivers
by an ageing workforce, many of whom are soon due to retire, and will not easily be replaced. >
Ageing population
Australia has an ageing population and South Australia has the highest proportion of older people in the nation with regional
South Australia recording a higher percentage of older residents than metropolitan areas.
Over the next 15 years, the number of South Australians aged over 65 is expected to almost double from its current figure of
one in six as the baby boomer generation moves into older age. In the next 10 years it is also expected that the percentage of
the population living beyond the age of 65 will rise from the current figure of 15% to 22%.
Introduction
Palliative Care Services Plan 2009-2016 page 3
Ageing workforce
Like the rest of the nation, South Australia is facing a health care workforce crisis as its workforce ages. Many of today s health
workers will be retiring in the foreseeable future and the health care sector is competing against many other industries for the
small pool of young people and migrants entering the workforce.
There is no immediate or quick fix solution to this major workforce planning challenge. SA Health modelling of future
workforce supply indicates a complete inability to maintain workforce groups at current numbers into the future. For example,
it is predicted that the number of Registered Nurses in SA will drop from approximately 16,000 to around 12,000 by 2020.
The crisis in the country workforce is of even greater concern:
Nurses in the country are on average older than the state mean, and the nursing workforce in country SA is anticipated to >
shrink by up to 30% in the next 20 years.
Increased turn over of General Practitioners in country South Australia will continue to be a problem; currently 40% of >
General Practitioners have less than five years experience working in rural SA and over the next five years international
medical graduates are expected to constitute around 40% of the rural medical workforce.
Introduction
page 4 Palliative Care Services Plan 2009-2016
Profiling death and its causes
This Plan anticipates an overall increase in the amount of end of life care that will need to be provided in South Australia
over the years to come. Some trends are also evident in the changing prevalence of diseases that cause death. The major
causes of death by disease currently seen across Australia are listed in the table below.
The top 10 causes of death account for 53.2% of all deaths registered in 2006. Cardiovascular diseases remain the leading
cause of death in South Australia, accounting for 37.5% of all deaths in 2002-2003.6
Table 1
Major causes of death in Australia by disease7
Rank Cause of death and ICD code Number %
1 Ischaemic heart diseases - (I20-I25) 22 983 17.2
2 Strokes (I60-I69) 11 465 8.6
3 Trachea and lung cancer (C33-C34) 7 348 5.5
4 Dementia and Alzheimer's disease (F01-F03, G30) 6 542 4.9
5 Chronic lower respiratory diseases (J40-J47) 5 443 4.1
6 Colon and rectum cancer (C18-C21) 3 858 2.8
7 Blood and lymph cancer (including leukaemia) (C81-C96) 3 693 2.7
8 Diabetes (E10-E14) 3 662 2.7
9 Diseases of the kidney and urinary system (N00-N39) 3 192 2.4
10 Prostate cancer (C61) 2 952 2.2
Source: South Australian Cancer Registry, Epidemiology Branch, SA Health 2008
In 2005, South Australian age-adjusted cancer mortality rate was 228.7 deaths per 100,000 for males and 135.9 for females,
comparable to national averages.8 Taking into account the current age/sex patterns of cancer and projected population
growth over the years ahead, the overall cancer patterns show a slight, but not significant, decline in incidence and
mortality rates in both males and females. However the effect of ageing will see a projected rise in the overall number
of both new cases of cancer as well as in the number of cancer deaths in South Australia in the years ahead. Table 2 sets
out these projections.
Table 2
Summary of projected number of new cases of cancer and mortality in SA
Year 2008 2011 2016
Projected number of new cancer cases 8,816 9,326 10,265
Projected cancer deaths 3,609 3,759 4,062
Estimating the size of the total population of people for whom end of life care could be required and the proportion of those
who require the input of a palliative care service is not straightforward. Methodologies differ widely and have evolved out of
varying presumptions and proxy measures.9,10,11,12,13,14 The approach and rationale taken in the Plan is set out in the following
section.
Profiling death and its causes
Palliative Care Services Plan 2009-2016 page 5
Planning end of life care
Historically the focus of the palliative care sector has been weighted towards those people with a diagnosis of cancer.
An appreciation of the features of a person s end of life trajectory as a significant determinant of need has emerged from
current palliative care literature. This is helpful in planning service responses at a whole-of-system level and across all age
groups, including for infants, children, adolescents and young adults. Consideration of end of life trajectories helps broaden
the scope of planning beyond a focus on the relatively small proportion of people who die with involvement from a palliative
care service.15
This palliative care plan recognises three typical or characteristic end of life trajectories (excluding sudden death) and seeks
to appropriately position palliative care services across these trajectories to ensure the input and resources of services are
most effectively utilised. It should be noted that they are not intended for use as a fixed template to be applied to individual
people.16
Figure 1
Typical end of life trajectories.
Along these trajectories, a series of key points or triggers representing interventional opportunities that can change the nature,
direction and outcomes of care can be anticipated. Triggers come in many forms and may include a new diagnosis or revision
of prognosis, the advent of a frightening or overwhelming symptom, an escalation of symptoms or an indication of increasing
distress or despair. Across these end of life trajectories, a number of triggers can be predicted. The following figure indicates
examples of where triggers may occur along the typical trajectories.
Figure 2
Triggers and trajectories
Clarifying the scope of palliative care also requires a determination of the most appropriate distribution of work along the
specialist-generalist service provider continuum. This lays the foundation for understanding the roles and responsibilities
required of the broader health sector in supporting the end of life care needs of their clients and their intersection with the
specialty of palliative care. A more detailed explanation of end of life trajectories and triggers is provided in Appendix 2.
Taken from Lynn & Adamson (2003)
A: Short period of evident decline
B: Long-term limitations with intermittent
serious episodes
C: Prolonged decline
High
Low
Fu
nc
tio
n
Time Death
High
Low
Fu
nc
tio
n
Time Death
Trajectory A:
Short period of evident decline
Mostly cancer
Time Death
High
Low
Fu
nc
tio
n
Trajectory B:
Long-term limitations with
intermittent serious episodes
Mostly heart & lung failure
Time Death
High
Low
Fu
nc
tio
n
Trajectory C:
Prolonged decline
Mostly frailty & dementia
Planning end of life care
page 6 Palliative Care Services Plan 2009-2016
Figure 3
Relationship between the specialist-generalist continuum and trajectories
End of life care provided by generalist providers without assistance from
specialist providers of palliative care.
End of life care led by generalist providers with some level of continuing or
occasional direct input from specialist providers of palliative care.
End of life care led by generalist providers with some level of continuing or
occasional direct input from specialist providers of palliative care.
High
Low
Fu
nc
tio
n
Time Death
Trajectory A: Short period of evident decline
Mostly cancer
Time Death
High
Low
Fu
nc
tio
n
Trajectory B: Long-term limitations with intermittent serious episodes
Mostly heart and lung failure
Time Death
High
Low
Fu
nc
tio
n
Trajectory C:: Prolonged decline
Mostly frailty & dementia
Planning end of life care
Palliative Care Services Plan 2009-2016 page 7
Expanding and reshaping palliative care services
To expand and reshape palliative care services to meet the demand and workforce challenges ahead the following directions
have been identified:
Consolidation of palliative care services into regionalised teams for enhanced integration and sustainability >
Formalising links and partnerships between metropolitan and country services >
Recasting the balance of end of life care that takes place in the in-hospital and out-of-hospital settings to give increased >
opportunity for people who want to receive end of life care at home
Building the capacity of generalist providers to effectively contribute to high quality end of life care >
Developing a palliative care quality agenda which supports understanding, planning for, and reporting on the >
needs and the outcomes of care for all those at end of life across each service catchment and across the state
The regionalised palliative care services will provide an integrated service for people and their families across >
in-hospital and out-of-hospital sites.
Appendix 3 provides more detail of directions to expand South Australian palliative care services.
Service delineation
The delineation of services identifies the scope of practice and the services provided within these levels and
provides important planning, resource allocation and accountability functions. The development of the service
delineation profile for palliative care services in SA reflects a local adaptation of the national palliative care service
delineation framework.17 While this national framework describes palliative care services using a three tiered
framework, the Clinical Service Delineation for SA Health Facilities18 uses a 6 tiered model to describe patient
complexity and the minimum level of support required to resource these needs. To integrate these two frameworks,
and thus preserve the capacity for service comparison at a national level, this Plan positions the palliative care services
of SA Health at three of the local levels of delineation (Levels 6, 4 and 2). These levels correlate with Level III, II and I
services respectively within the national service delineation framework. An expanded description of delineated service
profiles is contained in Appendix 4.
Expanding and reshaping palliative care services
page 8 Palliative Care Services Plan 2009-2016
Table 3
South Australian service delineation, resource and capability matrixa
Level Capability Typical resource profile
Acute,
chronic,
aged and
community
providers
of end of life
care.
Quality end of life care including assessment, triage,
care coordination and clinical management, bereavement
risk assessment and bereavement care for patients with
uncomplicated needs associated with end of life care.
Has formal links with a palliative care services for
purposes of referral, consultation and access to specialist care
as necessary.
General medical
practitioner, nurse
practitioner, practice nurse,
generalist community
nurse, Aboriginal health
worker, allied health staff.
Health care providers from
a range of community
and acute specialties
and disciplines would be
included at this level.
Level 2
palliative
care service
(PCA Level I)
Provide palliative care for patients, primary caregivers
and families whose needs exceed the capability of primary care
providers.
Provides assessment, & community & clinical education.
Care consistent with needs and provides consultative support,
information and advice to primary care providers.
Has formal links with primary care providers and a formal
partnering relationship with a Level 6 service as well as with a
local Level 4 service (through clustering arrangements if present)
to meet the needs of patients, caregivers and families with
complex problems.
Has quality and audit programs.
A rural palliative care
nurse coordinator with
local support from general
medical practitioner, allied
health staff, pastoral care
and volunteers.
A designated staff member
if available coordinates a
volunteer service.
Level 4
palliative
care service
(PCA Level II)
As for Level 2, able to support higher resource level (due to
population base or the presence of a Country General Hospital
that brings with it additional responsibility to a cluster of smaller
services), or the presence of a hospice associated with an
adjacent Level 6 service.
Provides inpatient care; within satellite hospice unit beds (in
periurban centres) or a small cluster of (non-dedicated) palliative
care beds within each Country General Hospital.
Has formal links to primary care providers and a formal
partnering relationship with a Level 6 service as well as with
Level 2 services (within a cluster if present) to meet the needs of
patients, caregivers and families with complex problems.
A rural palliative care
nurse coordinator with
addition of dedicated GP
with a special interest, NP
position and or advanced
practice nurse with relevant
specialist qualifications.
Includes designated allied
health and pastoral care
staff.
Level 6
palliative care
service
(PCA Level III)
Provides comprehensive care for the needs of patients with
complex need, and support for their caregivers and families.
Provides inpatient care: Mostly in hospice units with some
capacity within acute care beds of metropolitan hospitals based
on need.
Has formal links with primary care providers and formal
partnering agreements with a number of Level 4 and Level
2 services across the state to meet the needs of patients,
caregivers and families with complex problems.
Contributes to high quality specialist research, advanced clinical
training and graduate education programs and has integrated
links to relevant academic units including professorial chairs
where available.
Interdisciplinary team
including a service director,
palliative medicine
specialists,
a clinical nurse leader,
advanced practice nurses,
nurse practitioners and an
expanded range of clinical
and allied health staff with
specialist qualifications and
dedicated consultant roles
in palliative care.
Expanding and reshaping palliative care services
a Adapted for the South Australian context from the Palliative Care Australia service delineation matrix (2005)
Palliative Care Services Plan 2009-2016 page 9
Palliative care services in metropolitan Adelaide
Metropolitan Adelaide will be served by three public adult Level 6 palliative care services. Consistent with the health
system architecture underpinning the SA Health Care Plan, these Level 6 services will be based at the metropolitan General
Hospitals: The Queen Elizabeth Hospital, the Repatriation General Hospital and the Modbury Hospital. Existing palliative care
services will be consolidated within these services to ensure the long-term viability and sustainability of the palliative care
sector in the state. This will mean that the four separate palliative care services in the Central Northern Adelaide Health Service
will be consolidated into two integrated services. Level 6 palliative care services will provide services across spine and other
hospitals/health care facilities within their catchment area.
The three Level 6 services will each serve as a tertiary level resource to a designated number of Level 4 and Level 2 services
based in country South Australia to ensure equitable access and consistent specialist coverage across the whole state.
The paediatric palliative care service based at the Women s and Children s Hospital will maintain and develop its focus as a
Paediatric Level 6 service providing quality end of life care of infants, children and adolescents across the state. This requires
partnering with all adult services across metropolitan, periurban and rural South Australia. The partnering relationships
between delineated palliative care services are outlined below and are described in more detail in the following section.
Palliative care services in country South Australia
The service architecture of the SA Health Plan provides for expanded clinical services at four Country General Hospitals and
with this comes an enhanced capacity to develop end of life care services at these sites. Palliative care services based in the
four population centres of Mt Gambier, Pt Lincoln, Berri, and Whyalla will be developed to become Level 4 palliative care
services by 2016. Over time, and with analysis of trends in demand and flow, this may include expanded inpatient capacity
and incorporate a cluster of specialist inpatient medical and nurse-led care options in these four hospitals.
A statewide centre for Aboriginal and Torres Strait Islander Health will be established in Pt Augusta. Leadership in the
provision of culturally safe end of life care for Aboriginal people will be an important function of this centre. This will be
particularly valuable to address the needs of Aboriginal people wanting to return to country to die.
Periurban areas of the northern Adelaide plains, the Adelaide hills and the Fleurieu Peninsula are all facing rapid and
extensive population growth. The Strategy for Planning Country Health Services in SA recognises that service planning and
service delivery in these areas will increasingly integrate with that of the metropolitan area. Over time this will facilitate the
coordinated distribution of resources to the growth areas of greater Adelaide. Consistent with the trends in urban growth and
consolidation, these periurban services will move toward Level 4 palliative care service delineation by 2016.
The development of small hospices at Mt Barker and at Gawler Hospitals are in recognition of population size and demand
flowing from outer metropolitan and periurban areas. This will include expanded inpatient care capacity, and may include a
cluster of nurse-led beds within the compliment of dedicated palliative care beds.
The development of a similar unit for the Southern Fleurieu remains an option for the future and will be reviewed in the light
of population demand and inpatient flow data in 2012.
Consistent with cluster arrangements developed by Country Health SA, each Level 4 service will serve as an area resource to
Level 2 services in those parts of the state in which they are located. Like Level 4 services, Level 2 services are characteristically
small (in terms of team size) and operate across very large catchments containing scattered rural and remote population
centres.
Statewide access to specialist expertise and support
The considerable resources invested in palliative care services are utilised to maximum effect through a system of
relationships called service partnering . With varying degrees of formality, these partnerships ensure that every primary care
provider involved in the care of a person at end of life can access a local palliative care provider if required. If the local
specialist service is resourced at Level 2 or Level 4, then that service can access support from their Level 6 partner, if required.
By such means, the expertise and clinical knowledge of specialists concentrated in the metropolitan Level 6 services can
be made (directly and indirectly) available to all on the basis of need. The development of a statewide clinical network for
palliative care has been identified as the most appropriate mechanism to enable this and other outcomes.
The initial partnering arrangements that cover all palliative care services funded by SA Health are outlined in table 4.
These partnering relationships may be revised in the years ahead as the clinical service profiles of some services change
in line with the planning directions of Country Health SA.
Expanding and reshaping palliative care services
page 10 Palliative Care Services Plan 2009-2016
Table 4
SA palliative care service partnerships
L6 partner
(and service base)
Rural and peri-urban Level 4 and Level 2 service partners
(and service base)
Northern Adelaide
Palliative Services
(based at
Modbury Hospital)
Gawler & Districts (Gawler)
Barossa & Districts (to be determined)
Pt Pirie Regional (Pt Pirie)
Yorke Peninsula (Wallaroo)
Lower North (Clare)
Riverland (Berri)
Central Adelaide
Palliative Services
(based at TQEH)
Adelaide Hills (Mt Barker)
Mallee Coorong (Murray Bridge)
Whyalla (Whyalla)
West Coast (Ceduna)
Pt Augusta & Far North (Pt Augusta)
Eyre Peninsula (Pt Lincoln)
Southern Adelaide
Palliative Services
(based at RGH)
Southern Fleurieu (Victor Harbor)
Kangaroo Island (Kingscote)
South East (Mt Gambier)
Naracoorte (Naracoorte)
SA Paediatric
Palliative Care
(based at WCH)
Whole of state (all adult level 6, 4 and 2 services)
Moving from institutional to integrated regionalised service models
The history of palliative care service development in Australia and elsewhere records that many services were established out
of an impetus to improve end of life care for cancer patients in the interventional acute care setting. The size of the hospital
(traditionally measured in terms of total number of inpatient beds), the presence and size of a tertiary cancer treatment service,
along with the generation of referral-based demand shaped the way resources were allocated to palliative care services.
The design and focus of palliative care services has increasingly moved toward more seamless operation and influence across
settings and sites of care. Increasingly it has come to be recognised that:
a considerable number of remediable factors that contribute to the level of demand for inpatient care are located >
in the community settings
unmet needs exist in the community setting that are independent of institution orientated service performance >
or reform.
In response to these and other system-level changes, specialist services are becoming increasingly deinstitutionalised and
regionalised in both their focus and in their corporate identity. This trend has and will continue to see a shift in planning
focus toward the population within the service catchment in an effort to better understand and respond appropriately
to people s needs.
Expanding and reshaping palliative care services
Palliative Care Services Plan 2009-2016 page 11
The right balance between in-hospital and out-of-hospital care
In 2004 a representative sample of South Australians were asked about their preferred place of death if they were dying of
a terminal illness such as cancer or emphysema .19 Seventy percent indicated a preference to die at home.b This contrasts
sharply with the actual incidence of death at home for people with cancer of 14% in 2000-2002. This difference is consistent
with the experiences of other comparable countries and a range of systemic barriers to achieving higher rates of death at
home have been identified.20
Palliative care services actively work to support the choices of people at end of life and their caregivers to receive the care
and support they need in the place of their shared preference. However, more can and needs to be done to support care at
home, not just for the last days of life, but over the whole end of life period. For many people and their families, anxieties
about their capacity to manage dying at home and the extent and responsiveness of services often shape attitudes about
whether home is a safe and appropriate place to be as death approaches.21,22,2324,c It is important to note that for the growing
proportion of people with advanced disease who live alone, the option of continuing care at home until death
may be unrealistic.
Despite predicted increases in demand for end of life care over the next decade, the community will be able to rely on
responsive clinical teams capable of anticipating and/or responding effectively to emergent and complex care needs of
people dying at home. As a result more people will feel confident in the choice of care at home. A whole-of-system effort
will be required to meet community expectations about support for end of life care at home.
The palliative care plan has been informed by the outcomes achieved through system-wide redesign of palliative care services
across a number of Canadian provinces. These jurisdictions report using a single regionalised integrated service model of
service delivery to achieve substantial and sustained shifts in the amount and quality of end of life care provided in the
community setting.25,26,27,28,29,30,31
Elements of these Canadian strategies, along with features of the Marie Curie Delivering Choice Programme in the UK 32,33,34
and others from Sweden35, have been incorporated into this palliative care plan to enhance community-based end of
life care in South Australia. Collectively these changes will assist in achieving a doubling in the rate of death at home of
palliative care service referred patients by 2012. Reports from the international experience suggest that the rate of death
at home in South Australia can be further increased by 2016.
b When this figure is adjusted to take into account the distribution of cancer deaths by age and gender, the preferred incidence of
death at home for people who might be expected to die of cancer was 58%.
c For a comparable UK example see Patients wanting home death fear they won t get the help they need . Retrieved 1 June 2008
from: deliveringchoice.mariecurie.org.uk/news_and_events/press_releases/delivering-choice-programme.htm
Expanding and reshaping palliative care services
page 12 Palliative Care Services Plan 2009-2016
Model of palliative care in SA
Palliative care will be provided through a service model that operates across a geographical catchment area, integrates the
provision of care across in-hospital and out of hospital settings, involves collaborative links with other primary care providers
and includes partnering arrangements between Level 6, 4 and 2 services across the state. Within this model, palliative care
retains its integral relationship with the acute care sector in recognition of the complex care needs of its patient base and the
importance of its role it in assisting those patients transitioning from curative care streams.
The model is structured to facilitate the person on an end of life care pathway to access the range of services
available. Complexity of need should not be the primary factor in determining the setting of care at end of life.
Most people who have complex needs can be cared for in a community setting if they so wish, provided they have
around the clock access to expert advice and support.
While the bulk of care at end of life occurs in peoples own homes, hospice care plays a crucial role by providing short
episodes of inpatient care for symptom control, rehabilitation, terminal care, respite, and continuing care in instances where
care at home cannot be sustained.
An important challenge in this Plan has been to strike the right balance between resource allocation that adequately supports
inpatient care and also ensures optimisation of care in out-of-hospital settings.
A regionalised service model and a consistent approach to palliative care will be adopted across the state.
This will be supported by:
A single palliative care Unique Record Number to support once only referral. >
The statewide development and uniform use of common tools, medical history & clinical record, standardised >
instruments, protocols and admission, discharge and referral criteria to increase efficiency and uniformity of care.
Increased use of evidence-based guidelines and the tailored use of standardised and optimised clinical pathways. >
A consultation-liaison service construct with active partnerships with direct care providers. >
The provision of the bulk of inpatient palliative care in dedicated hospice units. >
the incorporation of Advanced Practice roles across disciplines contributing to the palliative core team >
enhanced capacity for the regional team to work across multiple sites, providing an in-reach service to other health facilities >
in the catchment area
improved performance measurement through shared use of quality indicators and a shared quality framework for service >
outcome measurement and reporting
consolidated coordinated training and support to volunteers and paid staff across services >
shared education and research programs. >
Streamlining access and referral
A number of steps will be required to consolidate and streamline access to palliative care services and enhance their profile
amongst service users and referrers.
They include:
Development of a centralised point of contact process, to ensure once only referral >
Ready access to after-hours phone support and advice >
The promotion of the new and established online service directories, including the Palliative Care Austral > ia services
directory, the Palliative Care Council of SA directory of services, the Divisions of General Practice, the Directory of
Cancer Services in South Australia, and the Health Provider Registry, to enhance community awareness of and access
to relevant information about providers and services for those at end of life
Direct promotion of new regionalised services to all referrers and via webpage and other existing forums or media. >
The Plan also incorporates the development of a self-sustaining SA Palliative Care Community Pharmacy Network
to facilitate a quality use of palliative medicines approach across community, aged care settings, ensure the optimal
prescription and dispensing of palliative care medications around the clock to those who need them, and the safe
disposal of those drugs when no longer required. Accessibility to medications after hours in the community setting
remains a continuing challenge that undermines successful care at home for people with complex or fluctuant
symptoms.
Model of palliative care in SA
Palliative Care Services Plan 2009-2016 page 13
Palliative care services in the out-of-hospital setting
From international experience and with the benefit of the GP Plus Health Care Strategy, it is anticipated that South Australia
can achieve a much higher rate of supported death at home. By 2012, between 30-40% of those people referred to a
palliative care service should be supported to die at home. A key element of a 2012 mid-point review will be the refinement
of service-level strategies and initiatives that can increase this rate further and support dying at home for between 45 and
55% of people referred to a palliative care service.
The extent to which services are able to achieve these rates of care and death at home will depend on a range of factors.
The principle enabler of success will be the optimal use of the expanded palliative care teams through the consistent
application of the model of care set out in this plan. The numbers of palliative care patients cared for in the community
will be expected to rise over time, and modelling of projected activity in the community suggests the following levels of
home or community-based activity.
Table 5
Projected numbers of people supported at home by a palliative care service and deaths at home. d
Number of people receiving support at home
(Deaths at home)
2008-09 2011-12 2016-17
Northern Adelaide Palliative Service 900 (135) 940 (330) 970 (480)
Central Adelaide Palliative Service 1200 (180) 1220 (425) 1240 (620)
Southern Adelaide Palliative Service 925 (140) 955 (335) 980 (490)
Total 3025 (455) 3115 (1090) 3190 (1590)
Whole-of-service responses will be required to achieve a number of ambitious but realistic performance indicators that
support this shift from hospital to community care. Within and across health regions, appropriate service-level reporting and
performance evaluation mechanisms will be required to support a shared reporting and review cycle through which service
leaders will be able to identify enablers, refine strategies and overcome barriers to achieve these outcomes. A number of
key initiatives will support this redesign.
The community palliative care team
To support the shift to increased numbers of people supported to die at home, more will be asked of palliative care community
teams and more resources will be provided to support them. Palliative care services provide a range of clinical services and
programs across their respective service catchments. They are provided:
to people requiring care at end of life and their caregivers and families when the level of nursing, medical and psychosocial >
care needed exceeds the capacity of primary care teams and community-based chronic care and aged care services
based on need and informed by a comprehensive palliative care assessment >
in homes and in residential aged care, transition care and community disability support facilities >
at an agreed and consistent level across the > state, as delineated by the resources and capabilities of each level of
specialist service (Level 2, 4 and 6).
In the community setting, palliative care services will provide:
palliative care assessment, care planning, advice and support for people and their families/kinship groups >
around the clock, consultative advice to providers of primary and community-based chronic end of life care services to >
support them in their work and systematically build and extend their skills, confidence and clinical capacity in the care of
people at end of life
around the clock advice and support to palliative care patients and their caregivers, either remotely or at >
the point of care, based on need
d Modeling in Table 3 uses current SAPS referrals and rate of death at home and projects this data across each new palliative care service
catchments. The SAPS catchment has been used as the reference point because it will remain unaffected by the new service configuration.
Model of palliative care in SA
page 14 Palliative Care Services Plan 2009-2016
ongoing assessment of risk from complicated grief from time of referral, earl > y therapeutic intervention
to positively alter grief trajectory and timely referral to primary and specialist loss and grief services,
wherever possible
a range of high quality and regularly evaluated programs of clinical teaching and capacity building to > all providers of
community-based end of life care, across health and disabilities sector.
Palliative care services often share the care of people with complex needs with community agencies such as Royal District
Nursing Service who also employ palliative care nurse consultants to provide advice and support in the home. To avoid
duplication of services, providers will work together to ensure a quality, coordinated, sustainable approach to care.
As demand increases, opportunities will arise for existing and new services to enter the services provider market.
Careful mapping of care needs and service roles will clarify agencies roles and contributions and avoid duplication.
Palliative care packages
One of the new components of service arising from statewide reforms in health will be a targeted suite of palliative
care packages to support community based care of people at end of life, their caregivers and their families. The
scoping and development of these packages for use across South Australia will be undertaken as a priority and
funding for these packages will be identified through a number of state and federal health reform initiatives.
This suite of packages may include:
a final days package, designed for use in the terminal phase of care >
a stabilisation package, used > as a short term strategy in response to a rapid escalation of symptoms or shift in the
burden of disease or in response to a family psychosocial crisis
a caregiver respite package, for short periods of both planned and unplanned caregiver respite >
a co > mplex continuing care package, for the continuing care of a person at end of life at home who
would otherwise require overnight admitted care in a hospice
a package specific to meeting needs of Aboriginal people. >
On the basis of need, these packages will also be accessible to support home-based care at end of life provided by
generalist providers. A critical enabler will be the availability of the right mix of Registered Nurses and personal care
workers required to perform this work, particularly at short notice, after hours and over night. The development of
this personal care worker role for use in palliative care packages will require planning and a comprehensive workforce
strategy.
Day hospice
The Plan makes provision for the piloting and evaluation of a variety of day support options, for use by clients of
Level 6 and 4 services. The day hospice setting may prove a suitable venue for a range of planned activities such as the
performance of therapeutic procedures and interventions, assessment and rehabilitative activities, carer education, carer
respite and support and to mitigate social isolation.36,37,38 This reflects the need to organise services in response to
demographic and social trends that see an increasing proportion of older people living alone, and/or without a primary
caregiver39.
Rapid response teams
In recognition of the impact of managing increasing numbers of people with complex care needs in the community, Level 6
palliative care services will develop and pilot the use of rapid response teams. These teams will bring expanded emergency
and out of hours multidisciplinary response to the home or site of care at short notice and may comprise, nursing, palliative
medicine and allied health staff depending on need. These teams will respond to situations that would otherwise result in
presentation and management in the Emergency Department, or admission to an acute care bed or hospice.
Out-of-hours interventions performed by rapid response teams are likely to include:
a comprehensive clinical reassessment >
revision of the plan of care and changes to the therapeutic regimen >
communication of changes and the initiation of follow up in hours by routine care providers. >
They may also include the activation of a short-term palliative care stabilisation package, and if required, hospital or hospice
admission. An evaluation of the efficacy and effectiveness of rapid response team initiatives will be required and will inform
the midpoint review of the Plan.
Model of palliative care in SA
Palliative Care Services Plan 2009-2016 page 15
Ambulatory care services
Across the GP-Plus Health Care Centres and in the outpatient settings of public hospitals within their service catchments,
palliative care services will provide a range of ambulatory care services including:
multidisciplinary palliative care outpatient consultation and review clinics >
contribution to multi-specialty cli > nics (eg multidisciplinary cancer and Motor Neurone Disease clinics)
psychosocial assessment and individual, family and group counselling services >
bereavement support and counselling services. >
A number of innovative clinics may also be piloted and evaluated including:
symptom specific clinics (eg dyspnoea, anxiety/depression and cachexia/asthenia) >
discipline-specific clinics (eg physiotherapy, occupational therapy, pharmacy, nursing). >
Palliative care services in the hospital setting
The place of hospices in integrated service delivery
Dedicated hospice units play a critical role in meeting the needs of people at end of life who require periods of intensive
inpatient care. The bulk of inpatient care provided by palliative care services will take place in hospices. Admission to all
publicly funded hospice beds is based on need as determined by a palliative care assessment.
Admission to palliative care beds will assist people who require:
optimal control over complex or difficult symptoms >
therapeutic investigations, interventions or care focused on rehabilitation and restoration of functional independence >
terminal care in instances where this cannot be provided elsewhere. >
The beds of a hospice are quarantined for this purpose and service the needs of people across the service catchment and the
state, rather than the immediate catchment of the host hospital in which they are located. Hospices require a minimum cluster
of 16 beds to ensure a critical mass of patients and skilled staff with qualifications and expertise. Where possible these units
should be located on a ground floor environment with easy access to outdoor areas and easy on-site access to investigatory
and treatment technologies.
Dedicated hospice units will be located in each of the Level 6 palliative care services. To meet the needs of South Australians
requiring overnight admitted care in a hospice setting through to 2016, a reconfiguration and expansion of hospices beds
is needed.
The changes outlined below represent a general configuration and timeframe, the final details of which will be determined at
regional health level through the development of integrated health plans.
The establishment of the Level 6 palliative care services will require a transitioning period where the elements of the model
are expanded. This transitioning period will involve both the sites where the Level 6 services will be based and those services
where palliative care is currently being provided.
The following section makes provision for increasing the number of palliative care beds across metropolitan and
greater Adelaide areas to 104 by 2016.e Palliative care bed numbers in country areas are more difficult to quantify
but this Plan identifies the need for 8-16 beds spread across the country General hospitals, at least two beds in
the centre for Aboriginal health in Pt Augusta, supported by further beds in smaller country hospitals based on
population size and need.
e Made possible only by using a combination of differentially resourced and costed nurse-led hospice beds and medical-led hospice
beds. The uptake of supported care in community-based shared housing options will also impact on the total number of beds
needed across greater Adelaide for the life of this plan. The 2012 midpoint review will result in adjustments to these projections.
Model of palliative care in SA
page 16 Palliative Care Services Plan 2009-2016
For the greater northern Adelaide area
Based in the Modbury Hospi > tal, this unit will serve as the main centre of inpatient care in the Northern suburbs of Adelaide.
The current hospice at Modbury Hospital will need to increase from its current 14 to 22 beds over the next few years.
A second hospice will soon need to be established at Gawler Hospital, configured initially as a small satellite unit of the >
Modbury hospice with a cluster of 4-6 palliative care beds. The size and the capacity of this unit will then need to be
expanded to reach a sustainable unit of 10 beds by 2016.f
The development of the hospice in Modbury Hospital will involve transitioning of some inpatient care from Lyell McEwin >
Hospital.
For the western, inner and eastern Adelaide areas and the Mt Lofty Ranges
The development of a hospice unit at The Queen Elizabeth Hospital is a priority. This unit will be part of the Level 6 palliative >
care service based at QEH and will need to have the capacity to provide 24 palliative care beds within the next 4 years.
This hospice will serve as the main centre of inpatient palliative care in the western, central and eastern suburbs of Adelaide.
Some hospice care for public patients will continue to be accessed from Mary Potter Hospice in North Adelaide. >
A small satellite hospice unit will need to be established at Mt Barker Hospital in the immediate future with an initial >
cluster of 4-6 palliative care beds. The size and the capacity of this unit will be expanded to reach a fully sustainable
unit of 10 beds by 2016.
The development of the hospice at The Queen Elizabeth Hospital will include transitioning some of inpatient palliative >
care provided at the Royal Adelaide Hospital and the Phillip Kennedy Centre Hospice. The nature of palliative care services
provided at RAH will change to better reflect its role as a Major Metropolitan Hospital. Similarly the role of Philip Kennedy
Centre will also change. While it will continue in its role as a provider of end of life care the planned expansion of services
across the continuum of end of life care will ensure additional community based options are also available. The nature of
service provision at Phillip Kennedy Centre will need to be considered within this expanded context.
For the southern Adelaide areas
Hospice facilities at Repatriation General Hospital will need to expand to a 22 bed unit. This unit will continue to serve as >
the main centre of hospice care in the southern suburbs of Adelaide.
Additional planned bed capacity will also be required at Repatriation General Hospital to absorb demand until >
the 22 bed unit is established.
The development of a hospice at Noarlunga Hospital with a base capacity of 10 beds by 2016, configured initially as >
a small satellite unit with a cluster of 4-6 palliative care beds.
Within the catchment of the paediatric palliative care service
Paediatric palliative care service has a commitment to supporting children and younger adolescents with palliative care >
needs to remain at home.
The need for paediatric palliative care in SA is too small to warrant a dedicated paediatric hospice unit. Paediatric inpatient >
palliative care will continue to be provided at Women s and Children s Hospital in hospital wards relevant to the child s
underlying diagnosis or in adult hospices.
Within the catchments of Country General Hospitals
The volume of inpatient palliative care needed across country areas varies according to population demographics. >
Each Country General Hospital will be developed to have a 2-4 bed capacity in purpose-designed single palliative care >
rooms.
The Palliative Care Coordinator will lead each rural and peri-urban palliative care service. T > hese positions will serve to
ensure:
the provision and coordination of high quality care for palliative care patients in each service catchment -
the continuing provision of education and capacity building to primary and acute care providers of end of life care within -
the service catchment
a close and ongoing relationship with the Level 6 service partner. -
Model of palliative care in SA
f Subject to the assessment of sustainability, workforce, palliative care bed demand as set out in the findings of the 2012 midpoint
evaluation of the Plan.
Strategy for Planning Country Health Services in SA >
Palliative Care Services Plan 2009-2016 page 17
Model of palliative care in SA
Drawing on the role of Country General Hospitals as outlined in the Strategy for Planning Country Health Services in SA, >
Level 4 services will have greater capacity to support one or more neighbouring Level 2 services that operate within their
cluster arrangement.
The Nurse Practitioner role will be a key element in the provision of expert palliative care by Level 4 services across the state. >
Within the framework set out by the Nurses Board of South Australia, Nurse Practitioners working in Level 4 palliative care
services would be banded as rural and remote with either a palliative care-specific scope of practice, a dual specialty scope
of practice (that includes palliative care and for example an aged care or chronic disease scope of practice). These Nurse
Practitioners will need access to palliative medicine specialists and to regular periods of clinical time in a Level 6 service
through their candidature and on an ongoing basis.
To me > et the end of life care needs of people who will increasingly be receiving care for advanced disease at local
Country General Hospitals, the plan anticipates the need for designated medical roles within rural Level 4 services.
In the absence of staff medical officers employed at Country General Hospitals, the role of the General Practitioners
with a Special Interest in palliative care will be explored .
To work as a General Practitioner with a Special Interest in palliative care will require > a Clinical Diploma of Palliative
Medicine. Along with Nurse Practitioners and other members of the Level 4 service, they will be supported to locally
manage the care of people at end of life with complex needs though a partnering arrangement with a Level 6 service that
includes a program of regular visiting and the use of telemedicine as outlined below.
Within the catchment of country hospitals/health care centres
Inpatient end of life care will continue to be available in other country hospitals, in particular those hospitals that already >
have developed purpose-designed palliative care rooms .
As Pt Augusta develops as a centre for Aboriginal Health, the inpatient care requirements at Pt Augusta will need to be >
identified. Palliative care in- patient facilities will need to have capacity to support cultural and spiritual end of life care
needs of Aboriginal peoples.
Palliative care services in the residential aged care setting
Palliative care services currently provide a consultancy service to residents in aged care facilities. This service will continue and
be expanded as the community palliative care teams are increased. The development of community packages of care will
further assist aged care providers in meeting the care needs of their residents.
As part of the older peoples health reform agenda in SA, the new Health Service Framework for Older People includes a
range of initiatives that will further support aged care providers in meeting the health care needs of their residents. One
element of this wide-ranging reform will be the advent of Regional Older People s Health teams working across aged care
services and settings.
Through close partnerships, the Regional Older People s Health teams and Palliative Care services will work together to
optimise their respective contributions to the care and support needs of older people at end of life. This will include round the
clock access to advice and support from a local palliative care service, and access to overnight admitted care in a hospice on
the basis of need. Consistent with sector standards and community expectations residential aged care facilities across South
Australian will continue to provide quality end of life care to residents so that they may live in place and die in place .
page 18 Palliative Care Services Plan 2009-2016
Working within the new care model
Types of palliative care beds
The Plan also develops the concept of differentiated types of palliative care bed. Nurse-led care options will be
explored and developed to enhance the flexibility of services as they strive to be more responsive to the needs and
preferences of people who require admitted overnight care or supported community residential care.
The co-location of a cluster of nurse-led beds within each public hospice will depend on a number of factors
including:
the piloting, evaluation and costing of this option >
the availability of advanced practice nurses and Nurse Practitioners to facilitate the care. >
A mid-point review will be undertaken in 2012 to examine the overall demand for overnight admitted care in hospices, taking
into account trends in demand, length of stay, inpatient activity profiles and the outcomes of investment in community-based
care. This will inform the further consolidation of hospices in the outer northern and southern suburbs and in the Adelaide
Hills. The impact of the expansion of private cancer services at Calvary Hospital on demand for palliative care services will be
monitored and will also inform planning for inpatient care.
Acute palliative medicine in hospitals
Through the provision of an Acute Palliative Medicine Service, Level 6 adult palliative care services will maintain a presence in
the all metropolitan hospitals within their respective catchments. The predominant component of this work will be consultancy
and liaison in character.
This includes the provision of:
Consultancy and liaison services to a range of specialty clinical teams to contribute to coordinated, seamless care for >
inpatients based on agreed referral criteria and referral mechanisms. This component of service is not an emergency service
or an adjunct discharge planning service
Timely and sensitive exploration and negotiation of transfer to community based care options or inpatient care at a hospice >
or other appropriate facilities (including other hospices across the greater Adelaide area, residential aged care facilities, and
community-based shared housing options if available)
Input to multidisciplinary case conferences and clinics where appropriate >
The first line referral point for triage and the initial elements of the palliative care assessment will be provided in most >
instances by a Level 3 or 4 specialist or advanced practice nurse.
A significant emphasis of the work of an Acute Palliative Medicine Service provided at metropolitan hospitals will take place
through the use of critical conversations with and between treating teams, inpatients and their caregivers and families at key
trigger points along the end of life illness trajectory. In anticipation or in response to these triggers, palliative care services will:
contribute to decision-making forums [through family and clinical case conferences] to enhance shared end of life care planning >
ensure that timely, appropriate and coordinated palliative care inpatient transfers between metropolitan hospitals and >
hospices across the greater Adelaide area are facilitated.
Given the changing emphasis and the differing target profiles for metropolitan general and major hospitals within the health
service architecture of SA Health, it will become increasingly important that people are admitted to the right hospital which
may not necessarily be the nearest hospital.
Optimising the influence of palliative medicine
The model of care supports palliative medicine specialists to achieve high levels of integration and influence in a range of
medical specialty services (including oncology, neurology, renal, thoracic and general medicine) to ensure that each acute
specialty service integrates quality end of life medical care into their clinical practice.
Palliative medicine specialists will work across clinical services and actively engage with the junior and resident medical staff
and with advanced trainees of those services to maximise their capacity to provide quality end of life care to inpatients in the
acute care setting.g
The team providing the Acute Palliative Medicine Service will include palliative medicine specialists, nurse practitioners, clinical
practice consultants and coordinators and where available, advanced trainees in palliative medicine, general practice trainees
and sessional general practitioners with a special interest in palliative care.
g Their target population is often referred to as those identified via the surprise-question :
Would you be surprised if this patient were to die in the next 6-12 months?
Model of palliative care in SA
Palliative Care Services Plan 2009-2016 page 19
These teams will help facilitate acuity-based care planning and timely responses to need in the Acute Medical Units of
Adelaide s three adult major metropolitan hospitals. They will collaborate with other contributing medical specialist services
and nursing and allied health staff working in this setting. The Paediatric Palliative Care service will provide this function at the
Women s and Children s Hospital.
On the basis of a comprehensive palliative care assessment, they will provide an appropriate level of consultation or continuing
clinical involvement using standardised protocols, individually tailored and negotiated to meet the needs of inpatients who
have been identified as transitioning from an acute care pathway focusing on cure or disease modification to a palliative care
pathway that focuses on quality of life and active symptom control.
In some instances the Acute Palliative Medicine Service may be the best team to assume managing care during an episode
of admitted overnight care in an adult major metropolitan hospital. To facilitate appropriate investigations or treatment the
Acute Palliative Medicine Service may arrange a planned admission to acute or sub acute beds of these hospitals for this
purpose. This will necessitate a daily presence and access to advice and support on an around the clock basis.
The acuity modelh will change many aspects of management and the flow of inpatients across the metropolitan hospitals of
Adelaide. Equally, the enhanced capacity of country general hospitals to meet the needs of people undergoing treatment for
advanced or end-stage disease will also impact on the palliative care inpatient profile of adult major metropolitan hospitals.
The quantity of palliative care service resources required to support quality end of life care in the major metropolitan hospitals
and the amount of direct care provided by the Acute Palliative Medicine Service teams will be need to be monitored and
refined as these changes take effect.
Equipping teams for change
A considerable emphasis of this plan hinges on the use of a single shared model of palliative care to support the quality
and consistency of service delivery across the state. Expanding the capacity and the disciplinary diversity of the specialist team
to enhance the sustainability of services over the long-term presents as both a challenge and an opportunity.
To achieve the vision of a dynamic modern palliative care service structured for long-term efficacy, flexibility and sustainability
requires an integrated strategy of team diversification and role design, within a team culture characterised by interdisciplinary
rather than multidisciplinary approaches and collaborative rather than cooperative work practices.40,41,42
The strategy rests firstly on matching the right skills and expertise to best meet the needs of people at end of life. Broadly
speaking this includes a range of biomedical, psychosocial, spiritual and cultural care expertise. It then requires that the right
configuration of fully optimised disciplinary roles be brought together to function as an integrated collaborative interdisciplinary
team. Exploring the impact of new and emerging roles will also be an important feature of the workforce strategy.
The three Level 6 adult palliative care services in metropolitan Adelaide will be expanded by the inclusion of a number of
new and emerging roles, each designed to add to the capacity of services to achieve enhanced community care outcomes
for people at end of life, their caregivers and families. A significant emphasis will also be placed on extending the concept of
advanced practice roles beyond nursing into other areas including social work, pharmacy, and a range of allied health and
other psychosocial support roles.
When the new adult Level 6 services are launched they, along with the SA Paediatric Palliative Care Service, will have expanded
clinical teams to assist their efforts to achieve the service and patient-level outcomes described in this plan. As a consequence
of the presence of new roles, and in response to the enhanced focus on community-based care, some of those working in
long-established roles within palliative care teams will be called on to work differently. Level 6 services will also be additionally
resourced commensurate with their respective out-of-region responsibilities to Level 4 and Level 2 partners across the state.
The healthy functioning and long term sustainability of these teams rests in part on the optimisation of shared learning
opportunities, a culture of adaptability and reflective practice, exemplary leadership, and structured access to both individual
and group clinical supervision. A number of contemporary challenges are also apparent.
They include:
the need to embed new and emerging roles within services and develop the methodologies to evaluate the impact and >
efficacy of each role, and by so doing contribute to the evidence that validates new team configuration and supports long-
term workforce planning
the implementation of the nursing career structure, and a lack of similar career path for social workers >
the need to generate and maintain a viable workforce of community-based careworkers with specific training in quality end >
of life care.
Additional information on new ways of working together is contained in Appendix 5.
h As outlined in the relevant SA Clinical Senate model of care documentation (2008)
Model of palliative care in SA
page 20 Palliative Care Services Plan 2009-2016
Supporting end of life care providers
To further improve the quality of this care, in the face of an overall increase in the demand for end of life care requires:
an informed community >
an informed health sector the right support for generalist providers of end of life care by the palliative care sector >
a particular focus on supporting living-in-place/dying-in-place in the residential aged care setting >
the whole of population evaluation of end of life care. >
Underpinning the directions for palliative care is an end of life health literacy program. Advance Care Planning and
Advance Directives play an important role in enhancing the health literacy of South Australians. The key strategy in
this area involves the roll out of an Informed Choices Program across primary, chronic and aged care services in each health
region. This program will train and equip key frontline workers positioned to respond to triggers along patient pathways to
optimise the timely initiation of advance care planning and the completion and utilisation of advance care plans.
The Palliative Care Council of SA has a significant role in advancing health literacy for people at the end of life. The Council
is recognised as an effective community representative peak-body advocating quality end of life care for all, supporting
caregivers, and promoting health and health literacy.
Appendix 6 sets out additional information on supporting end of life care providers.
Supporting end of life care providers
Palliative Care Services Plan 2009-2016 page 21
Improving access and equity
Like South Australia s Health Care Plan, this Plan recognises a social gradient where the needs of marginalised or
disadvantaged communities require particular attention to ensure equity of access and comparable care outcomes.
There are a range of planning issues and service delivery challenges associated with the end of life care needs of a number of
specific populations including:
people living in rural and remote areas of the state >
infants, children and adolescents >
Aboriginal people >
people from diverse cultural backgrounds or linguistic traditions >
older people and those in residential and community aged care settings >
younger people needing supported care in the community >
those experiencing grief and bereavement >
those receiving care in the private sector >
those with interventional pain m > anagement needs.
Additional information outlining key initiatives and enablers associated with improving access and equity has been provided
in Appendix 7.
Opportunities for collaboration
Health in grief and loss is an area that extends well beyond palliative care and will require a statewide and whole of
health approach. Equitable access to primary care bereavement support for all, based on need, can be achieved by
working with:
GP Plus Health Care Networks and other providers of primary care across the state to configure appropriate >
community-based primary care support and interventions strategies.
key stakeholders and champions within a range of health services (such as peri-natal, intensive care, mental >
health, and a range of chronic disease as well as trauma and emergency response teams) to explore and optimise
system-wide responses.
range of community agencies and educators to raise awareness of the need for and enablers of community-wide health >
in grief and loss.
A statewide Health in Grief and Loss Plan will be developed. The expected long-term outcomes from of this plan
will include:
enhanced equity of access to appropriate interventions for all people at risk of complicated grief regardless of the service >
pathway they take
a reduction in the incidence and severity of bereavement related mortality and morbidity across SA >
reduced reliance on palliative care services to meet the bereavement needs of people who would not otherwise need or >
benefit from referral to a palliative care service
the repositioning of palliative care servi > ce focus back onto consultative, educational and direct service for complex
bereavement in palliative care clients only.
The South Australian Paediatric Palliative Care Service will require expansion. To better meet the psychosocial support and
bereavement care needs of infants, children, adolescents and their parents, families and communities, an additional role will
need to be incorporated into the service. The nurse practitioner role will be further consolidated within the team complement,
as will investment in specialist paediatric palliative medical expertise. End of life pathways for older adolescents and young
adults with continuing care needs will need to reflect the transition into adult-oriented services.
Improving access and equity
page 22 Palliative Care Services Plan 2009-2016
Supporting regional older people s health services
Key members of each palliative care team will work with the new Regional Older People s Health Services to systematically
establish and refine referral pathways, clinical support protocols, shared learning opportunities, and quality and evaluation of
care at end of life in the aged care sector (both residential and community). Mechanisms will need to be in place to ensure
formal relationships and referral pathways between tertiary level aged care services and palliative care services are optimized
and lead to integration, coordination and continuity of contributions by these teams in both community and residential aged
care settings.
Working alongside pain teams
Palliative care and pain services will work with other key stakeholders to support population-based improvement in outcomes
related to prevention, intervention and control of acute, chronic and complex pain across South Australia. This suggests a need
for a close clinical working relationship between procedural pain teams and palliative care teams. Formal relationships between
Level 6 palliative care services and tertiary pain services will facilitate this.
Improving access and equity
Palliative Care Services Plan 2009-2016 page 23
Enhancing quality
A series of national standards governing the provision of palliative care services has been established through Palliative Care
Australia.43 These standards cover a range of service activities and practices and form the basis of a nationally consistent
framework for service evaluation and quality improvement.
The quality of care provided to South Australians at end of life is dependent on many factors not least of which is a
system-wide application and understanding of the common model of care, a degree of consistency in day-to-day use
of language, practice and treatment guidelines, outcome assessment and performance improvement strategies.44,45
It also hinges on a cultural commitment to teaching and learning and to continuous quality improvement.
Demonstrating performance and continuous improvement
There will be a number of elements that together form a comprehensive quality framework for all palliative care services
funded through SA Health.
These elements include:
the fostering of innovation and practice improvement, clinical and health service research, and a culture that seeks always >
to learn from mistakes, expand and share knowledge and improve the safety and quality of care
the performance of audit, quality feedback loops, > and plan-do-study-act cycles by individual practitioners, teams and
services
regular service self-assessment against the national standards using a suite of validated assessment tools, with an emphasis >
on the experience of people at end of life, their caregivers and family as they traverse the health system
the adoption of the Competency Standards for Specialist Palliative Care Nursing Practice > 46 as a shared statewide approach
in the recruitment, professional practice development and performance management of specialist palliative care nurses
service benchmarking and peer assessment each Level 2, 4 and 6 Service will undergo benchmarking with comparable >
benchmark partners identified locally or nationally and utilise peer assessment to critically review all aspects of service
delivery to ensure quality
national palliative care specific accreditation. All Level 6 services will undergo specialty-specific accreditation by 2012 and >
all Level 4 services by 2016.
To support service evaluation, planning and reform a statewide reporting cycle will be developed to yield a consistent
report of activities and outcomes across palliative care services. This Plan anticipates a continuing program of whole-
of-end-of-life-outcomes surveillance will be in place to:
evaluate population-level end of life care outcomes across services, health regions, and the state >
assist in the evaluation of service-level programs or pilots designed to enhance the care choices or improve the quality of end >
of life care provided across services, health regions and the state
assist in the revision and refinement of palliative care service planning, workforce and funding arrangements. >
Appendix 8 sets out in more detail key aspects of the data, reporting and surveillance agenda that will support enhanced
quality and care outcomes arising from the Plan.
Enchancing quality
page 24 Palliative Care Services Plan 2009-2016
Implementation
Strengthening partnerships
The integrated service delivery model described in this Plan draws on a whole of population approach and develops a sharper
focus on the outcomes of people receiving end of life care across a range of care settings. The partnering relationships
between palliative care services of varying levels across the state will be systematically consolidated over the life of the Plan.
Each service will report on the development and the status of their partnering relationships including:
regular report on the development and implementation of programs of visiting and support >
periodic audit and evaluation of the uptake and impact of remote telemedicine facilities. >
Managing the transition
The formation of the regional services will require a period of transition as components of the model are expanded and
reshaped. For the palliative care sector, this will include developing the Level 6 and Level 4 services at the General Hospitals,
the reconfiguration of beds within hospitals and the expansion of teams working in the community setting.
The changes inherent in the model of care will require supported renegotiation of the roles of generalist providers of end of
life care in the acute, residential and community setting. This will take place at a time when the effects of a range of other
significant reforms designed to improve the provision of health care are also impacting positively on the system.
The Regions have established processes and mechanisms to manage this complex implementation. Service providers are
actively participating in the design of the new service arrangements consistent with reform plans.
The transition is further supported by the new Aged Care Funding Instrument (ACFI) which has been implemented by the
Australian Government in recognition of the increasing level of care required to meet the needs of some aged care residents.
This instrument specifically recognises the increasing complexity of people s care needs at end of life and allows the aged care
sector to maximise the resources available to them to more adequately these needs.
Leadership and change
Further planning at the regional level will lead to the development of integrated service plans for each region and it will be
through this mechanism that the directions of this and other statewide services plans will be operationalised.
Underpinning this will be a framework of statewide quality improvement, reporting, information technology, workforce and
population-based surveillance programs. South Australia s Health Care Plan makes use of statewide clinical networks, eight of
which are currently in place. This approach represents the preferred clinical leadership mechanism for the palliative care sector
in South Australia.
A Statewide Palliative Care Clinical Network will support the development of a single model of care and a standardised
approach to service delivery across the state and also have oversight of a number of key statewide projects that will contribute
to the roll out of this Plan.
Expanding the vision
Health Promotion
The palliative care sector has an evolving interest in the promotion of health through the normalisation of death.
Through a range of targeted public health promotional approaches designed to shift the level of community anxiety
about death and dying palliative care services seek to redress the concerns of those that feel that assisted suicide is a
more dignified response to impending death than the path that lies through illness and dependence on others.47
Developing and supporting the workforce
A statewide palliative care workforce strategy will be developed. Using a systematic approach to recruitment,
retention and role innovation, a workforce strategy will be implemented to build the capacity and the sustainability of
palliative care teams, including the early incorporation of a range of specialist roles in each adult Level 6 service including
consultant physiotherapists, occupational therapists, pharmacists, clinical psychologists and the caregiver network facilitator.
A 2009-2010 palliative care workforce profile will be produced as a priority.
Additional detail about the workforce strategy has been included in Appendix 9.
Implementation
Palliative Care Services Plan 2009-2016 page 25
The Plan anticipates the need for a workforce of approximately 23 Nurse Practitioners by 2016. Consistent with the County
Health workforce strategy some of the nurse practitioners working in Level 4 palliative care services may have a scope of
practice that incorporates aged care or chronic disease care and work in roles that focus on a dual specialty population.
Growing this workforce will require the preparation of Nurse Practitioner candidates using a staggered cohort approach.
The first cohort will be drawn from the interested specialist nurses with experience and post-graduate qualification.
Nurse Practitioner role development positions will need to be incorporated within each Level 6 service in 2008/09 and the
appointment of the first cohort of 6 palliative care nurse practitioners within 18 months. A Nurse Practitioner workforce
development program will be put in place to facilitate coordinated training and clinical supervision opportunities across the
state. It will play a key role in extending the focus of Level 6 services as centres of advanced training for all those disciplines
that contribute to palliative care.
The cost effective incorporation of salaried sessional General Practitioners with a Special Interest in Palliative Care will be
explored. Based on service need and level of uptake by general practitioners the role will be incorporated into Level 4 and
Level 6 services across the state.
Other key role innovations include:
A > repositioning of palliative medicine roles within the acute sector and a workforce replenishment strategy to ensure
the supply of palliative medicine specialists.
The recruitment of accredited pharmacists for each adult Level 6 service in 2009 and the launch of a community pharmacy >
network in 2009.
The emergence of the palliative psychological medicine specialist role within the specialist medical complement of each >
adult Level 6 service.
The incorporation of a welfare officer in each integrated Level 6 service to provide information and assistance to families >
with welfare, legal, financial, housing, placement and transport issues.
The utilisation of a business manager in each adult Level 6 service to assist in the executive, financial and administrative >
functioning of each regionalised, integrated service.
Widening the concept of advanced training in Level 6 services
Each adult Level 6 service will meet the criteria for and maintain accreditation as a training site for advanced training
in palliative medicine and will also serve as training sites for the clinical diploma in palliative medicine and the
specialist skill attachment for general practice training.48 While the training of paediatric palliative medicine specialists is
not available in South Australia, opportunities for a combination of local and interstate advanced training will be explored and
developed.
Advanced training positions will be allocated by analysis of statewide need through the workforce strategy.
All Level 6 services will take up a principle role in support of the role transition and clinical supervision of Nurse Practitioner
candidates, and advanced training roles in social work, pharmacy and key allied health disciplines. Supporting the advanced
practice training of others will be a key distinguishing feature of all specialists working in Level 6 services.
Service level leadership and accountability
The expanded scope of the three adult Level 6 palliative care services as outlined in this Plan will require skilled
executive leadership oversight and capacity.
The challenges and transitions outlined in this Plan commend the use of service director positions in each adult Level
6 service with appropriate job and person specifications that reflect the need for high quality health service leadership
and executive administration.
An adequate level of business manager support for each Level 6 service will also be required. Health regions will
develop, through review and revision of all job and person specifications, a shared clinical governance structure for
each adult Level 6 service that accounts for a contemporary construction of medico-legal liability and accountability
within collaborative interdisciplinary practice models.
Implementation
page 26 Palliative Care Services Plan 2009-2016
Equipping and integrating clinical teams through information technology
To enable palliative care services to work effectively and efficiently across acute and primary care settings, significantly
enhanced information technology and data management support and is necessary.
To achieve the anticipated community-based care outcomes that have been outlined in this plan, team members will
need to be supported to:
simultaneously work across the breadth of their service catchments while maintaining the ability to communicate with other >
clinicians, and collaborating agencies
input and extract clinical patient information in real-time while away from the office, in homes, hospitals, residential aged >
care facilities, GP Plus Health Care Clinics and outpatient departments
dispense with profoundly inefficient and labour intensive paper-based documentation systems that rely on double or triple >
data entry to collect clinical and quality-related data.
Essential requirements to support interconnectivity, improve palliative care service and patient outcomes will rely on:
a single statewide web-based wireless information technology system for standards-compliant communication and clinical >
data entry/extraction at point of care, to facilitate efficient and effective service delivery across service catchments, and
between government and non-government agencies though careconnect.sa
a statewide dataset configured around a single unique record number for all people receiving palliative care services >
access to reliable, portable wireless computers >
the training of clinical teams >
ready access to skilled information technology an > d data support workers to assist with the extraction and utilisation of
data for quality, audit and reporting purposes.
Implementation
Palliative Care Services Plan 2009-2016 page 27
Directions at a glance
Table 6
Implementation
Statewide initiatives
1.1
Supporting the work of the Palliative Care
Council of SA
1.4
Establishing a statewide palliative care
community pharmacy network
1.2
Strengthening service partnering arrangements
across the state
1.5
Establishing a statewide palliative care clinical
network
1.3 Developing a suite of palliative care packages 1.6
Using a shared model of care and common
approach to service delivery across the state
Whole of system initiatives
2.1
Rolling out an Informed Choices Program
across the state
2.2
Developing a statewide health in grief and
loss plan
Service Redesign initiatives
3.1 Development of Level 6 services within CNAHS 3.6 Exploring day hospice options
3.2 Developing Level 4 services in country SA 3.7 Using rapid response teams
3.3
Development of an Aboriginal palliative care
service in Pt Augusta
3.8 Differentiating palliative care bed types
3.4
Extending and expanding community
based services
3.9 Undertaking capital works
3.5 Reconfiguring bed and hospice units
Collaborative enablers
4.1 Supporting new regional aged care teams 4.4 Working differently in the acute setting
4.2
Working with the Aged Care sector to develop
their capacity as end of life care providers
4.5 Working alongside pain management teams
4.3 Working alongside chronic disease services
Workforce initiatives and enablers
5.1
Developing a statewide palliative care
workforce strategy
5.5 Expanding the concept of advanced training
5.2 Growing the established workforce 5.6
Exploring and using the General Practitioner
with a Special Interest
5.3 Proliferating advanced practice roles 5.7
Establishing a trained community-based
personal care workforce
5.4 Growing a Nurse Practitioner workforce 5.8 Exploring and using new and emerging roles
Quality, data, reporting initiatives
6.1
Developing an end of life care outcomes
surveillance capacity
6.3 Establishing a statewide reporting cycle
6.2 Implementing a statewide quality program 6.4 Putting in place IT solutions & support
Research and education initiatives
7.1
Reinstating a statewide end of life research
collaborative
7.2
Using a statewide approach to education,
training support and practice development
page 28 Palliative Care Services Plan 2009-2016
Next steps
Responding to changes
The Plan anticipates many of the identifiable challenges that lie ahead. The dynamic nature of reform within a
changing health care environment requires systems to be in place to monitor and respond to unanticipated risk or
independent trends. This will require the Statewide Palliative Care Clinical Network to adopt a watching brief on
developments related to:
rates of death at home, proportion of time spent in the out-of-hospital setting, along with the additional identification of >
barriers and enablers
demand, usage and length of stay in the hospices of greater Adelaide >
the impact of the acuity-base > d model of care in the major metropolitan hospitals of Adelaide
the impact of new supported care options for younger people (under 65 years old) with step-down or slow stream needs >
the availability, recruitment and retention of palliative care clinicians > of all disciplines
barriers to role optimisation across advanced practice roles >
legislative obstacles to the handling or movement of the deceased in the home or community setting, including restrictions >
on those who can declare life extinct and the possible need to extend certification of death to nurse practitioners
forthcoming National Health & Hospital Reform Commission performance reporting requirements >
the impact of any forthcoming private insurance products that offer community-based end of lif > e care and support
options to the privately insured
changes in the amount of private practice palliative medicine >
changes in hospital flows and the role of GP Plus Health Care Centres >
the level of demand for complex end of life care in country General H > ospitals, and barriers to meeting this need
the ongoing monitoring of caregiver burden >
access (or barriers to access) to palliative care services by Aboriginal people and people from cultural and linguistically >
diverse communities
changes in the usage profile and uptake of volunteerism >
the presence and impact of accessible primary care bereavement services. >
Evaluating the outcomes of the Plan
Evaluation will be a core component of implementation and occur at key points across the life of the plan and include:
the ongoing piloting and adaptation of system and service-level reforms and innovations >
a 2012 midpoint report on the progress of the Plan >
a new statewide strategic plan for the period of 2017 and beyond. >
Timeframe for action
The following action timeframe will be implemented by regional health services and the statewide palliative care clinical
network over the life of the plan. There are some immediate next steps required to commence the implementation of the plan.
Priority first actions
There are some immediate next steps required to commence the implementation of the plan. The anticipated program
of work required in 2009 includes the following areas.
Statewide
The establishment of the statewide clinical leadership framework for palliative care (Statewide Palliative Care network). >
Develop and implement palliative care packages in both metropolitan and country areas. This work will be supported by a >
statewide project funded from a grant from the National Palliative Care Program.
Workforce initiatives to recruit and develop palliative care clinicians, commencing with the Palliative Care Nurse Practitioner >
Role Transition Program, and the development of pharmacist consultant positions and the associated SA Palliative Care
Community Pharmacy Network as well as a range of other advanced practice roles.
Next steps
Palliative Care Services Plan 2009-2016 page 29
Next Steps
Metropolitan specific
The formation of the 2 Level 6 services in CNAHS >
This will require bringing together the separate teams currently located in different hospitals to form regionalised services >
Develop processes needed to enable clinicians to work across multiple care facilities >
Establishment of the hospice at The Queen Elizabeth Hospital >
Extend the capacity of the hospice at Modbury Hospital >
Determine the resource impact on primary care services of supporting more people with palliative care needs to >
die at home.
Country specific
Development of services in country level 4 sites, with a particular focus on achievement of equity of access across >
country South Australia
Develop the Aboriginal palliative care service based in Pt Augusta. >
Table 7
Initiatives and timeframe
Financial Year
08/09 09/10 10/11 11/12 12/13 13/14 14/15 15/16
Transition Initiatives
- Integrated Service Plans by Health Regions
1.2 Statewide service partnering
1.3 A suite of palliative care packages
1.4 Community Pharmacy Network
- After hours emergency medications project
1.5 Statewide palliative care clinical network
- Next statewide palliative care services plan
1.6 Development of common tools, protocols, guidelines
and pathways
Whole of system initiatives
2.1 An Informed Choices Program
2.2 A statewide health in grief and loss plan
Service Redesign Initiatives
3.1 Services consolidation in CNAHS
- Promotion and launch of new Level 6 services
- Development of online profile and resources
3.2 Development of Level 4 services at Country
General Hospitals and in peri-urban services
3.3 Scoping of post-PEPA Aboriginal palliative care service
needs and roles
3.4 Rapid response teams (pilot & evaluation)
- Death at home rate of 30-40%
- Death at home rate of 45-55%
3.5 Bed and hospice unit reconfiguration
- Nurse-led care options (pilot & evaluation)
3.6 Day care options (pilot & evaluation)
3.9 Capital works - telemedicine units
- Team accommodation - TQEH & Modbury
- RGH Hospice Expansion
- Satellite unit refit Mt Barker and Gawler
page 30 Palliative Care Services Plan 2009-2016
Table 7
Initiatives and timeframe contd.
Financial Year
08/09 09/10 10/11 11/12 12/13 13/14 14/15 15/16
Workforce
5.1 Statewide workforce strategy group
- First three-year rolling workforce profile
5.2 Growth in the established workforce
- Recruit paediatric psychosocial worker
5.3 Recruitment of advanced practice specialists
5.4 First NP role development positions
5.7 A community-based personal care workforce
5.8 Recruit new role post-holders
Quality, Data, Surveillance and IT
6.1 Outcomes surveillance group
6.2 Statewide quality program and workgroup
- Complete accreditation of Level 6 services
- Complete accreditation of Level 4 services
6.3 Development of common data set, reporting template
and protocols
6.4 Piloting & development of integrated regionalised
service-level IT system
6.4 Once only entry into service and single record number
Research and Education
7.1 SA End of life care research collaborative
7.2 Statewide Continuing Professional Development
program, education and practice development
Next Steps
Palliative Care Services Plan 2009-2016 page 31
Appendix 1: Definition of terms
Terminology
The terms palliative care and end of life care require definition and their use within this Plan needs careful
clarification. The way the terms are used is not intended to value one over the other, but to assist in differentiating the
roles of specialist and generalist providers of end of life care in ways that clarify the contributions of each, while allowing for
consistent use of terms.
Across the international literature, the term end of life care is used inconsistently and without precise meaning It is sometimes
used interchangeably with the term palliative care and is also used specifically to refer to care in the terminal stage of illness (ie
the last few hours or days prior to death).
The term palliative care also has wide meaning and attribution and can refer to a philosophy, a reform movement and an area
of clinical specialty. In the context of this plan, the term palliative care is used to refer to specialty clinical practice and
service delivery. It generally refers to the specialty that grew out of the hospice movement .49,50
For the purposes of this plan, the term end of life care is used to describe care that is planned for, negotiated with, or
provided to a person at the end of their life. It is used without specific reference to timeframes and hinges instead on
the orientation toward providing care appropriate for a natural life event and the ordinary place of death within a
person s lifespan.
End of life care ends in death, but begins at a point that varies according to a range of factors:
Personal choice - for example when the person with advanced disease, or organ failure, makes a choice for comfort >
care only.
Professional judgment - when a health professional determines that physiological decline associated with advanced >
disease or system failure is irreversible, cannot be offset and where death is inevitable or expected. This may be informed
by use of the question: Would you be surprised if this person were to die in the next 12 months?
In some instances people make the transition to end of life care when diagnosed with an incurable illness.
For others, end of life care is triggered by subtle clinical changes, an event, a revision of prognosis, or a simple recognition
that death is coming. In some circumstances end of life care can last for years, and in others only days, or even hours, as can
sometimes be the case in an Intensive Care Unit with the withdrawal of life-support.
Providers of end of life care
All health professionals have a responsibility to advocate for and contribute to the care of people at the end of life. Fulfilling
this requirement requires a basic level of knowledge and skill in both the philosophy and the practice of palliative care.
End of life care is provided by health professionals who can be located along a generalist-specialist continuum from:
those that have occasional or regular involvement with people at end of life, to >
those that have occasional or regular involvement with people at end of life and incorporate this work in their diverse >
practice, to
those whose scope of practice is solely or substantively focused on the population of people at end of life, >
largely to the exclusion of other areas of practice, and who are therefore required to develop specialist skill,
knowledge and qualification in the field of palliative care.
Generalist providers (providers of end of life care)
Generalist providers refer to all those services and clinicians who have a primary or first contact relationship with the
person at end of life.
The use of the term end of life care provider in this context refers to general practitioners, community-based domiciliary
nurses, disability sector support workers, disease-specific chronic care coordinators, the clinical staff of residential aged care
facilities and GP Plus Health Care Centres.
It also includes other specialist services and clinical staff of emergency departments, acute care hospitals and services, including
for example gerontologists, oncologists, renal, cardiac or respiratory physicians, surgeons and other designated clinicians.
Appendix 1
page 32 Palliative Care Services Plan 2009-2016
These staff, while specialist in their own areas, may undertake an ongoing, occasional or lead role in the support of
people at end of life, depending on the circumstances, their capacity and the level of need. Generalists have in the past and
will continue to provide the majority of all end of life care in South Australia.
Specialist providers (providers of palliative care)
Palliative care providers have a sole focus on end of life care and are directly involved with people who have complex and
unmet physical, emotional, spiritual and social care needs that exceed the capacity of the generalist provider in either primary
or acute care sectors.51,52,53
Specialist providers are drawn from a range of biomedical and psychosocial science disciplines and have specialised knowledge
and qualifications in the field.
Palliative care services have a major role in building the capacity of the broader health care sector to provide quality care to all
people at end of life. Much of the Plan focuses on these services.
Appendix 1
Palliative Care Services Plan 2009-2016 page 33
Appendix 2: End of life trajectories
Historically the focus of the palliative care sector has been weighted towards those people with a diagnosis of cancer and
despite long-standing engagement with a range of non malignant diseases, the incidence of advanced cancer diagnoses cared
for by palliative care services remains largely static at around 80-85%.54,55,56,57,58 The level of prognostic uncertainty associated
with non-cancer disease courses is often cited as the major impediment to palliative care referral.59,60
Emerging from the recent research and thinking within palliative care, is an appreciation of the features of a person s end of
life trajectory as a significant determinant of need. This is seen as helpful in planning service responses at a whole-of-system
level.61,62,63,64,65 Consideration of end of life trajectories also helps broaden the scope of planning beyond a focus on the
relatively small proportion of people who die with involvement from a palliative care service.66,67
This plan recognises the three typical or characteristic end of life trajectories, excluding sudden death, and seeks to
appropriately position palliative care services across these three characteristic groups of people at end of life to ensure their
input and resources are most effectively utilised.
These trajectories are outlined in figure 1. It should be noted that they are not intended for use as a fixed template to be
applied to individual people.68 Rather, the care needs of people at end of life are assessed individually and negotiated on a
case-by-case basis using a best practice approach.69
Figure 1
Typical end of life trajectories.
Trajectory A: Short period of evident decline
This trajectory is most commonly seen in advanced metastatic cancer and is characterised by:
maintenance of relatively good function to a point >
a relatively short period of plummeting functional status and high symptom burden >
a short terminal phase. >
The pace and service-level responses to the needs associated with this trajectory ideally match the capacity and model of care
that has traditionally been associated with palliative care services.
People whose end of life pathway follows this trajectory will have needs that challenge the capacity of generalist providers of
end of life care and will benefit from timely referral to a palliative care service. For many people with advanced cancer, direct
and continuing palliative care service involvement will be necessary and appropriate.
Trajectory B: Long-term limitations with intermittent serious episodes
Often seen in end-stage organ failure (typically end stage heart failure, liver and lung diseases) and characterised by:
progressive decline in overall functional status over time >
periods of exacerbation or acute illness often necessitating hospitalisation, any of which could result in death >
most deaths are sudden but few are surprising >
high levels of prognostic uncertainty. >
Appendix 2
Taken from Lynn & Adamson (2003)
A: Short period of evident decline
B: Long-term limitations with intermittent
serious episodes
C: Prolonged decline
High
Low
Fu
nc
tio
n
Time Death
page 34 Palliative Care Services Plan 2009-2016
Both the pace and the types of care needed for people on this trajectory can be met through a shared care model between
community generalist care providers with support from the relevant chronic disease service. For example, specialist heart failure
nurses and nurse practitioners have been instrumental in anticipating and managing exacerbations of heart failure in the
community and in thereby reducing hospital by up to 50%.70,71,72
A proportion of these people will have needs that exceed the capacity of generalist providers and will benefit from timely
referral to a palliative care service, leading to a coordinated shared care approach between palliative care services, chronic care
managers and primary care providers. A smaller proportion of these people will have complex needs that will see the palliative
care service take a lead role in their care. For some people with organ failure or other non-malignant diseases, their clinical
course more closely approximates that of trajectory A or Trajectory C, prompting a different level of palliative care response or
engagement.
Trajectory C: Prolonged decline
Typically seen in frail elderly people and those with an established dementia, characterised by:
slow incremental decline from an already very low functional status >
minor or subtle clinical changes >
continuing high-level care needs throughout with transition into terminal phase difficult to identify. >
People whose end of life is characterised by this trajectory usually need continuing care in the community and supported care
settings such as residential aged care facilities and will have their needs met by aged care providers with support of the local
regional aged care team. Only a small proportion of these people need the input of a palliative care service.
The role of triggers in service delivery and service planning.
The focus on needs-based service planning brings the concept of triggers into sharper focus. The use of triggers does more
than assist in promoting timely referral to palliative care services. They help clarify opportunities for intervention, action and
review by a wider range of health care providers involved with the care of people at end of life.73
Triggers represent the real and potential opportunities that arise along a person s health journey that can change the nature,
direction and outcomes of their care. Across these end of life trajectories, a number of triggers can be predicted and are
illustrated in the following manner.
Figure 2
Triggers and Trajectories
High
Low
Fu
nc
tio
n
Time Death
Trajectory A:
Short period of evident decline
Mostly cancer
Time Death
High
Low
Fu
nc
tio
n
Trajectory B:
Long-term limitations with
intermittent serious episodes
Mostly heart & lung failure
Time Death
High
Low
Fu
nc
tio
n
Trajectory C:
Prolonged decline
Mostly frailty & dementia
Triggers come in many forms, and may include a new diagnosis or revision of prognosis, the advent of a frightening or
overwhelming symptom or escalation of symptoms, an indication of distress or despair, a very subtle change, or from a shift
in thinking by those involved (see Table 8 for examples).
Appendix 2
Palliative Care Services Plan 2009-2016 page 35
Table 8
Examples of thought triggers
Provision of quality end of life care for people rests in part on all health care providers being alert to and responding
appropriately when triggers occur. This requires an informed clinical sector with the capacity, the time and the preparedness
to respond to the evolving needs of people at end of life.
Across the health service continumn, clinicians should make use of triggers to:
listen to what at end of life, their caregivers, families/kinship groups for changes that lie ahead >
reflect on or people are saying and asking for >
review and adapt care plans ceasing ineffective or burdensome treatments >
prepare people at end of life, their caregivers, families/kinship groups for changes that lie ahead >
reflect on or review their own capacity to provide care, as well as their own personal and professional responses >
or feelings about death and dying
seek advice from palliative care providers, and where appropriate facilitate timely referral to specialist services. >
Rather than leaving it all to the last minute the timely and appropriate response to triggers that arise all along a person s
health journey or illness trajectory can:
improve people s health literacy >
help prepare people for death while at the same time improving their quality of living >
prompt individual tailoring of care to systemically improve the care received >
aid the transition of caregivers and family through grief and bereavement. >
Enhancing the system-wide focus and capacity to respond to the needs of people at end of life, will also yield enhanced clarity
about the respective roles and contribution of generalist and specialist sectors in the provision of quality end of life care for all.
Appendix 2
Source Trigger
Person at end of life
I think I m dying!
I don t want to have to go through [another visit to the ED] ever again!
I just want to go home!
Caregiver
I m exhausted I don t think I can give any more!
I won t go on without him!
Clinician
I m going to be out of my depth soon!
I don t know what to try next!
page 36 Palliative Care Services Plan 2009-2016
Appendix 3: Expanding and reshaping palliative care
services
Palliative care services in South Australia
The palliative care services of South Australia are becoming progressively more:
Patient-focused - where the person at end of life is the central concern of service planning and service delivery. >
Community-focused - supporting people, their caregivers, families and communities to achieve social, emotional and >
spiritual health at the end of life through a commitment to optimising home and community-base care options
Delineated - a nationally consistent framework for service types. A single set of national standards are applied in a >
graduated fashion to each level of service to reflect both the level of expectation placed on each level of service, and the
resource allocation necessary to achieve that level of service
Health promoting - with a focus on normalising death and dying as part of life and lifting the level of health literacy across >
all South Australian communities
Planned - using population-based planning principles to achieve equity of access, comparable quality of services and >
outcomes for patients and their families regardless of location
Delimited - with a focus on clinical engagement in the care of people with the most complex needs, while also actively >
engaged in a targeted and sustained consultative effort to support others who care for the dying and people at end of life
across all settings, sectors and institutions
Regionalised - to provide a spectrum of services, interventions and programs to the palliative care population within their >
designated service catchment
Focused on outcomes - with appropriate quality and governance structures in place >
Contributors - to the body of biomedical and social science evidence that shapes the practice of palliative care, through >
the facilitation, utilisation and generation of high quality research
Teaching and learning communities of practice, that seek always to learn from mistakes, expand and share knowledge >
and improve the safety and quality of care
Interdisciplinary in nature, drawing on a combination of individuals and disciplines to bring the best available blend of >
skill sets, experience and capacity to the services they provide
Responsive - to change and sustainable in design with a range of strategies in place to ensure that they can maintain and >
replace their workforce, manage their proportionate and evolving scope of practice and adjust their position in the health
system appropriately
Networked with each other through a series of formal service agreements to provide/receive support and to achieve a >
range of shared outcomes
Collaborative in their relationships with direct care providers such as GPs, RDNS, Domiciliary Care SA, Regional Aged Care >
Teams, as well as the care teams of GP Plus Health Care Centres and community and residential aged care services.
Appendix 3
Palliative Care Services Plan 2009-2016 page 37
Appendix 4: Service delineation
The delineation of services identifies the scope of practice and services provided within these levels and provides important
planning, resource allocation and accountability functions. The development of a service delineation profile for palliative care
services in SA incorporates two bodies of work:
The Clinical Service Delineation for SA Health Facilities. > 74
The national palliative care service delineation framework developed by Palliative Care Australia. > 75
While the national framework describes palliative care services using a three tiered framework, the Clinical Service Delineation
for SA Health Facilities uses a 6 tiered model to describe patient complexity and the minimum level of support required to
resource these needs. To give some capacity for national service comparisons, within this Plan, palliative care services are
positioned across only three of the SA delineation levels (levels 6, 4 and 2). This framework aims to:
ensure a shared understanding of the expectations of different sized services >
support parity of funding, benchmarking and comparison of outcomes between similar sized services >
organise partnering relationships between services across the state >
account for differing levels of local and statewide responsibilities. >
The capability and resource profile of each level of specialist service as well those services that provide end of life care in the
primary, acute, community, chronic and aged care settings are set out in Table 9.
Appendix 4
page 38 Palliative Care Services Plan 2009-2016
Table 9
Delineated services descriptions
Acute, chronic, aged and community providers of end of life care
Role
Provide quality end of life care to people, caregivers and families. -
Up to the level where specialist support or input is required to ensure quality end of life care -
Setting
Places of residence -
GP practices or GP Plus health care centre -
Hospital settings -
Residential aged care facility -
Anywhere in the state -
Staffing Primary and acute care teams -
Services
accessible
and
available
resources
Local palliative care service -
Local primary care community bereavement services -
HACC, aged care & respite care packages -
Local community health services -
Community pharmacies -
Other primary health care providers -
Interpreter services -
Aboriginal health services -
Office of the public guardian -
Diagnostic imaging and pathology services -
Education of
others
Patient, caregivers and family -
Nursing students, -
Aged care workers -
Disability workers -
Aboriginal health workers -
Students of all health care disciplines -
Research
involvement
Initiates own research and audit activities if indicated -
Quality
activities
Participates in quality activities -
Level 2 palliative care service
Role
The provision of palliative care expertise and services -
A mobile service to site of care -
The service provided may be either direct or via telephone consultation -
The service is available 24 hours a day, 7 days a week -
Setting
A regionalised rural service catchment, including homes, inpatient or outpatient hospital settings, GP -
Plus health care centres and residential aged care facilities
Leadership Rural palliative care nursing coordinator -
Staffing Registered nurses experienced in palliative care and/or with tertiary qualifications -
Partnering
Relationship
With local Level 4 palliative care service if available -
With a designated adult Level 6 service -
With SA paediatric palliative care service -
Formal
Service Links
General practitioners -
Domiciliary nursing services -
Local GP Plus health care centres -
Government-funded organisations -
Residential aged care facilities -
Allied health service providers -
Community and hospital pharmacy services -
Indigenous healthcare services -
Medical and surgical specialties -
Carer respite organisations -
Volunteer services -
Non-government organisations -
Appendix 4
Palliative Care Services Plan 2009-2016 page 39
Appendix 4
Level 2 palliative care service contd.
Services
Accessible
Local community bereavement services -
Diagnostic imaging and pathology -
Community pharmacies -
Education of
others
Patient/caregiver education -
In-service programs for primary care providers -
Clinical teaching to clinicians who provide end of life care including nurses, aged care workers, -
disability workers, Aboriginal health workers
Clinical teaching to nursing, medical, allied health, students and others engaged -
in undergraduate programs that prepare health professionals who will provide end
of life care
Research
Involvement
Collaborates with others to undertake research and incorporate research findings -
into practice
Contributes to policy development at a state-wide and national level -
Quality
activities
Leads quality and audit activities within the service -
Individual palliative care staff participate in their own ongoing professional development -
Fulfils reporting requirements as determined by Country Health SA and SA Health -
Level 4 palliative care service
Role
The provision of palliative care expertise and services -
A mobile service to site of care -
The service provided may be either direct or via telephone consultation -
The service is available 24 hours a day, 7 days a week -
Service as a clinical and professional resource to Level 2 services within cluster -
Setting A regionalised rural or peri-urban service catchment, including homes, inpatient or outpatient - hospital and hospice settings, GP Plus health care centres and residential aged care facilities
Leadership Rural palliative care coordinator -
Staffing
Registered nurses experienced in palliative care and/or with tertiary qualifications -
Nurse Practitioner(s) (as available) -
GP with a special interest (as available) -
Partnering
Relationship
With local Level 2 palliative care service (if relevant through clustering Country Health SA -
arrangement)
With a designated adult Level 6 service -
With SA paediatric palliative care service -
Formal
Service Links
General practitioners -
Domiciliary nursing services -
Local GP Plus health care centres -
Government-funded organisations -
Residential aged care facilities -
Allied health service providers -
Community and hospital pharmacy services -
Indigenous healthcare services -
Medical and surgical specialties -
Carer respite organisations -
Volunteer services -
Non-government organisations -
Services
Accessible
Local community bereavement services -
Diagnostic imaging and pathology -
Community pharmacies -
Outpatient clinics & GP Plus health care centres -
Clinical psychology -
Acute/chronic pain management services -
Volunteer program -
page 40 Palliative Care Services Plan 2009-2016
Level 4 palliative care service contd.
Education of
others
Patient/caregiver education -
In-service programs to primary and acute care providers/teams engaged in end of life care -
Clinical teaching to clinicians who provide end of life care including nurses, aged care workers, -
disability workers, Aboriginal health workers
Clinical teaching to nursing, medical, allied health, students and others engaged -
in undergraduate programs that prepare health professionals who will provide end
of life care
Training of volunteers -
Research
Involvement
Initiates own research activities and - collaborates with others to undertake research and incorporate
research findings into practice
Contributes to policy development local and state-wide level -
Quality
activities
Leads quality and audit activities within the service -
Individual palliative care staff participate in their own ongoing professional development -
Fulfils reporting requirements as determined by Country Health SA and SA Health -
Level 6 Specialist Adult Palliative Care Service
Role
The provision of palliative care expertise and services -
A mobile service to site of care -
The service provided may be either direct or via telephone consultation -
The service is available 24 hours a day, 7 days a week -
Serve as a clinical and professional resource to a number of Level 2 and Level 4 services across the -
state
Setting A regionalised metropolitan service catchment, including homes, inpatient and outpatient hospital - and hospice settings, GP Plus health care centres and residential aged care facilities
Leadership Service Director -
Staffing
Palliative medicine specialists -
Advanced trainees in palliative medicine (as available) -
Psychiatrist (where available) -
GP with a special interest (as available) -
Level 4 nurse clinical services coordinator/or director/or service functional director -
Nurse Practitioners -
Palliative care NP candidates (as available) -
Level 3 nurse clinical coordinators with tertiary qualifications -
Palliative care physiotherapist and OT consultants. -
Accredited palliative care pharmacist -
Social workers, clinical psychologist & other psychosocial support workers -
Community network facilitator -
Pastoral care staff -
Bereavement coordinator and managers -
Volunteer coordinators and managers -
Coordinator of education, research and practice development -
Welfare officer -
IT and data support manager -
Partnering
Relationship
With designate Level 2 and Level 4 palliative care services -
With SA paediatric palliative care service -
Table 9
Delineated services descriptions contd.
Appendix 4
Palliative Care Services Plan 2009-2016 page 41
Appendix 4
Level 6 Specialist Adult Palliative Care Service contd.
Formal
Service Links
Academic units and research centres of excellence -
Divisions of general practice -
General practitioners -
Domiciliary nursing services -
Local GP Plus health care centres -
Government- funded organisations -
Residential and community aged care services -
Allied health service providers -
Aboriginal health services -
Medical, surgical and radiation oncology services -
Gerontology services and regional aged care teams -
Rehabilitation services -
Chronic disease services -
Acute, chronic and complex pain services -
Carer respite organisations -
Non-government organisations -
Services
Accessible
Local community bereavement services -
Diagnostic imaging and pathology -
Community pharmacies -
Outpatient clinics & GP Plus health care centres -
On site telemedicine unit -
Volunteer program -
Education of
others
As with Level 4 -
Leadership role in broader educational activities -
Contribution to formalised medical, nursing and allied health programs, curriculum development, -
delivery and review
Provision and oversight of advanced training in palliative medicine and of NP candidates -
and graduates
Development and review of training of volunteers and volunteer coordinators. -
Demonstrated by faculty membership and joint appointments -
Research
Involvement
Initiates own research activities and collaborates with others to undertake research and incorporate -
research findings into practice
Fosters research capacity and research integration of others -
Contributes to policy development local and statewide level -
Collaborates with others in SA or Australia to build a national/international profile in one or more -
program areas of research
Quality
activities
Leads quality and audit activities within the service -
Individual palliative care staff participate in their own ongoing professional development -
Fulfils reporting requirements as determined by health region and SA Health -
Level 6 Specialist Paediatric Palliative Care Service
Role
The provision of palliative care expertise and services -
A mobile service to site of care -
The service provided may be either direct or via telephone consultation -
The service is available 24 hours a day, 7 days a week -
Serve as a clinical and professional resource all Level 2, 4 and 6 services -
Setting A statewide service catchment, including homes, inpatient or outpatient hospital and hospice - settings, GP Plus health care centres and other health care facilities
Leadership Paediatric Palliative Care Service Manager -
Staffing
Paediatric palliative medicine (provided by paediatrician with special interest in palliative care or a -
local adult palliative medicine specialist with special interest in paediatrics)
Paediatric palliative care NP(s) and or advanced nurse clinical specialist coordinator -
Social worker, bereavement counsellor or psychosocial support worker -
Partnering
Relationship
With all Level 2, 4 and 6 adult palliative care services across South Australia -
page 42 Palliative Care Services Plan 2009-2016
Level 6 Specialist Paediatric Palliative Care Service contd.
Formal
Service Links
Academic units and research centres of excellence -
Divisions of general practice -
General practitioners -
Domiciliary nursing services -
Local GP Plus health care centres -
Government-funded organisations -
Allied health service providers -
Indigenous healthcare providers -
Paediatric medicine, oncology and surgical services -
Carer respite organisations -
Non-government organisations -
Services
Accessible
Local community bereavement services -
Diagnostic imaging and pathology -
Community pharmacies -
Outpatient clinics and GP Plus health care centres -
Clinical psychology -
Acute/chronic pain services -
Education of
others
As with Level 4 -
Leadership role in broader educational activities -
Contribution to formalised medical, nursing and allied health programs, curriculum development, -
delivery and review
Provision and oversight of advanced training in palliative medicine and of NP candidates -
and graduates
Development and review of training of volunteers and volunteer coordinators -
Demonstrated by faculty membership and joint appointments -
Research
Involvement
Initiates own research activities and collaborates with others to undertake research and incorporate -
research findings into practice
Fosters research capacity and research integration of others -
Contributes to policy development local and statewide level -
Collaborates with others in South Australia or Australia to build a national/international profile in one -
or more program areas of research
Quality
activities
Leads quality and audit activities within the service -
Individual palliative care staff participate in their own ongoing professional development -
Fulfils reporting requirements as determined by CYWHS and SA Health -
Table 9
Delineated services descriptions contd.
Appendix 4
Palliative Care Services Plan 2009-2016 page 43
Appendix 4
Consistent with this delineation framework, the following table lists current palliative care services and those that will be
in place by 2016.
Table10
Service delineation table of SA Health s palliative care services current and 2016
The configuration of hospices by 2016
Planning the number and distribution of palliative care beds and units for South Australian has involved balancing the issues
raised in the planning principles. An interdisciplinary team of clinical experts with sufficient FTE and bed-throughput is required
to sustain advanced skills in inpatient palliative care.
Expert opinion across the Australian palliative care sector suggests that a minimum number of 16 beds are required to sustain this
expertise.76,77 Expert opinion also suggests that 16 beds or more are required to maintain and sustain units over the long term.
The continuing trend toward outer metropolitan and peri-urban population growth supports a rationale for positioning a
number of new hospices in key outer metropolitan suburbs or peri-urban population centres. This will reduce the travel time
for increasing numbers of people requiring inpatient palliative care and their families who would otherwise have to travel to
inner metropolitan hospices.
Set against this, is the need to establish only the number of hospices that can be reasonably sustained over the long-term
given the anticipated workforce pressures that are anticipated over the next 8 years and beyond.
Current 2016
Service Name Service Base Service Name Service Base
Metropolitan Services Metropolitan Level 6 Services
SA Paediatric North Adelaide SA Paediatric North Adelaide
Lyell McEwin Elizabeth Northern Adelaide Modbury
Modbury Modbury Central Adelaide Woodville
Central Adelaide Adelaide Southern Adelaide Daw Park
Western Adelaide Woodville Country Level 4 Services
Southern Adelaide Daw Park Mt Gambier & Districts Mt Gambier
Country Services Riverland Berri
Mt Gambier & Districts Mt Gambier Eyre Peninsula Pt Lincoln
Riverland Barmera Whyalla Whyalla
Pt Augusta Pt Augusta Pt Augusta & Far North Pt Augusta
Whyalla Whyalla Periurban Level 4 Services
Gawler & Districts Gawler Gawler & Districts Gawler
Barossa & Districts Angaston Adelaide Hills Mt Barker
Adelaide Hills Mt Barker Southern Fleurieu Victor Habor
South Coast Victor Habor Country Level 2 Services
Lower Eyre Peninsula Pt Lincoln Barossa & Districts Tanunda
Port Pirie Regional Pt Pirie Pt Pirie Regional Pt Pirie
Murray Mallee Murray Bridge Mallee Coorong Murray Bridge
Yorke Peninsula Wallaroo Yorke Peninsula Wallaroo
Lower North Clare Lower North Clare
Naracoorte Naracoorte Naracoorte Naracoorte
West Coast Ceduna West Coast Ceduna
Kangaroo Island Kingscote Kangaroo Island Kingscote
page 44 Palliative Care Services Plan 2009-2016
Table 11 records the difference in bed utilisation practice between the regionalised service in Southern Adelaide and the
way overnight admitted care has been managed in the acute hospitals associated with each of the palliative care services
of CNAHS. The four services of CNAHS have a bed utilisation pattern that reflects a one-hospital-one-service-catchment
configuration, which tends toward the fluctuating level of palliative medicine bed-card activity within an acute hospital that
meets the varying level of need for overnight admitted care arising from that hospital s catchment.
The Plan directs a shift in bed utilisation by 2016 the will see the hospice units of greater Adelaide being the places where
most of the overnight admitted care provided by each palliative care service will take place.
The plan also directs services towards supporting an optimal amount of care at end of life in the home and community setting.
To support these twin outcomes, palliative medicine resources will need to be invested in community-based care and primary
care capacity building, and the amount of palliative medicine bed-card activity that takes within the major metropolitan
hospital setting will reduce.
The plan relies on a consistently operationalised model of care, and a range of service-level and clinical-led initiatives to
support this system-level change.
Table 11
2008 publicly funded hospice beds and palliative medicine bed card activity across metropolitan hospitals.
Nurse-led care options
The palliative care plan allows for the piloting and evaluation of a nurse-led model of inpatient care. In instances when expert
nursing care is the primary therapeutic intervention preferred and required by an inpatient, the presence of appropriately
costed and differentiated beds types enables services to better match needs and preferences with resources.
This innovation represents a potential option for:
uncomplicated terminal care >
periods of step-down care for stable younger inpatients who live alone or cannot realistically be cared for at home >
planned and unplanned periods of respite care >
inpatients whose stated preference is for comfort care only . >
When evaluated and costed, the incorporation of a small cluster of nurse-led beds into the overall compliment of beds for
each Level 6 service safely allows for expanded choice and an increase in the overall number of beds.
The option of nurse led care may address a well-described and persistent gap in services for people under 65 years of age
with either continuing high care needs or requiring a step-down and slow stream care approach that is not satisfactorily or
appropriately provided in the residential aged care setting.
The option also accommodates the need for short periods of planned or unplanned overnight admitted respite care.
Health Region Metropolitan Hospitals
Dedicated
hospice
beds
Average bed
card activity
(usual range)
Central Northern
Adelaide Health
Service
Lyell McEwin Hospital 10 (10 12)
Modbury 14 2 (0 4)
Queen Elizabeth 8 (6 12)
(contracted at Philip Kennedy Centre Hospice) 12
Royal Adelaide Hospital 4 (2 12)
Calvary Hospice Mary Potter Hospice 6 -
Southern Adelaide
Health Services
Repatriation General Hospital 15 0
Flinders Medical Centre 0
Noarlunga Health Service 0
Total Average Palliative Medicine Bed Card Activity 47 24(18 40)
Appendix 4
Palliative Care Services Plan 2009-2016 page 45
Other nurse-led care options will also be explored in the community and transitional care settings, drawing on the
shared residential housing model that is used at Cheltenham House78 to meet supported care needs of people with
advanced HIV/AIDS.
Other components of palliative care service
The scope of palliative care services extends well beyond clinical service provision, and includes a number of domains and
activities that are summarised in the section below.
Research
The palliative care community is charged with the primary responsibility for asking and answering a range of questions related
to clinical, philosophical, technical and operational issues related to end-of-life care and the needs of the palliative care
population. This community bears the responsibility for building the knowledge- and evidence-base that frames future practice
and innovation.
Level 6 services have particular research responsibilities and are expected to develop a purposeful targeted program of research
which both achieves a best fit between the skills, interests and capacity of expert clinicians within that service and the
targeted areas of established need or knowledge deficit.
Establishing research priorities and program areas are negotiated via statewide and national research networks. A statewide
end of life care research collaborative is proposed.
Education and teaching
Undergraduate
Curriculum offered in health sciences courses that prepare the health workforce that will provide end of life care in the future
will, as a minimum, need to incorporate an introduction to the principle and philosophy of palliative care. National curriculum
initiatives are available to support this.
Palliative care services demonstrate their contribution to education through the development of relationships with
undergraduate faculty at University and TAFE to design, deliver, review and evaluate palliative care-related curriculum, and by
recognition of participation through membership of academic faculty.
Palliative Care services provide clinical placements opportunities for undergraduate students and have established agreements
that support the development of shared teaching and learning relationships and activities with faculty partners.
Postgraduate
A range of postgraduate topics and awards are already available to provide for the entry-in-specialty and advanced practice
needs of the specialist workforce.
The Department of Palliative and Supportive Studies at Flinders University and the Discipline of General Practice at Adelaide
University both offer different but well-established graduate programs.
Experienced expert clinicians working in Level 6 services contribute to the continuing design, delivery, review and evaluation
of both graduate-level palliative care-related curriculum and discipline-specific graduate curriculum. They also gain recognition
for their contributions by way of academic status and in some instances joint appointments. Their profile and their activities
within the teaching faculty of universities is indicative of the extent to which Level 6 services are recognised for their tertiary
level expertise.
All palliative care services provide clinical placements opportunities for post-graduate students and have established
agreements that support the development of shared teaching and learning relationships and activities with faculty partners.
Clinical teaching across settings
Opportunities to provide clinical teaching arise on an ad hoc and daily basis and represent the principle mechanism for capacity
building amongst primary care providers regardless of setting.
Beyond ad hoc and ongoing clinical teaching, Level 6 services provide a targeted range of clinical teaching opportunities and
take responsibility for the continuing teaching/learning needs of their own team members, as well as contributing to formal
teaching opportunities (such as grand-rounds, clinical teaching and tutorial calendars) within the acute care hospitals and
community agencies with which they have service agreements.
Appendix 4
page 46 Palliative Care Services Plan 2009-2016
A statewide approach to training support, continuing professional education and practice development across palliative care
services will assist in enhancing the quality and diversity of opportunities that can be provided to, and by the palliative care
community of practice.
Health promotion
The palliative care sector has an evolving interest in the promotion of health through the normalisation of death .
Through a range of targeted public health promotional approaches designed to shift the level of community anxiety about
death and dying, palliative care services seek to redress the concerns of those that feel that assisted suicide is a more dignified
response to impending death than the path that lies through illness and dependence on others.79
Appendix 4
Palliative Care Services Plan 2009-2016 page 47
Appendix 5: Equipping teams for change
The new and emerging roles within palliative care teams
A range of new and emerging roles will be incorporated into expanded palliative care teams.
The palliative psychological medicine specialist and the palliative care
clinical psychologist
This plan anticipates the need for Level 6 services to enhance their capacity to provide psychological and psychiatric support
to better assess and meet the needs of people with emergent or continuing mental health needs at end of life, those whose
mental health is at risk, and to caregivers and families experiencing anxiety, distress, psychological dysfunction or mental
health crises.
Palliative Psychological Medicine Specialists will be incorporated into the specialist medical complement of each adult Level 6
service to achieve this.
Each Level 6 service will also utilise a clinical psychologist specialising in psychological support and therapeutic counselling to
people, caregivers and families experiencing anxiety, existential distress and difficult adjusts that are common at end of life.
These two post-holders will augment both the psychosocial support and medical components of Level 6 teams and will take
up leadership roles in clinical teaching, curriculum development, undergraduate and post graduate education, and clinical
research within their respective disciplinary fields. They will serve as a key resource to all providers of mental health and
psychosocial therapy and support at end of life across the state.
The GP with a special interest
The use of the general practitioner with a special interest in palliative care have been identified as a potential source of medical
practitioners who can fortify the provision of palliative medical services, particularly across community settings.80,81,82
The varying distribution of general practitioner services and after hours locum service cover across the community setting,
leaves large structural gaps in primary medical care services.
This will limit the capacity of SA Health services to increase the amount of adequately supported end of life care in the outer
suburbs of Adelaide.
The use of the GP with a special interest in palliative care will be explored:
in the hospice setting and in GP Plus Centres >
when working alongside nurse practitioners in the community, and with a particular focus on supporting people at end of >
life with multi-system illness
as a key component of palliative care service provision in country general hospitals >
to extend specialist skills and expertise into the general practitioner workforce. >
GPs with a special interest will require clinically supervised training through the Clinical Diploma of Palliative Medicine.
Depending on need and availability, they could be employed on a sessional basis, with a pro-rata allocation of additional
sessions per month for continuing professional development.
The efficacy and effectiveness of the role of the GP with a special interest will be evaluated by the midpoint evaluation, and
will inform the ongoing workforce strategy for palliative care.
The caregiver network facilitator
This novel role utilises a health visiting approach to engage with caregivers to assist them to identify and mobilise their own
local network of friends, relatives, neighbours, work colleagues and acquaintances to assist with caregiver support.
A key aspect of the role involves addressing social barriers as well as knowledge deficits that inhibit the utilisation of a willing
and able network of people and local organisations to provide material and practical assistance to caregivers.
The facilitator maintains extensive knowledge and entree to the full spectrum of local community resources that exist
(including local government, community groups, sporting associations and the faith or cultural communities that are relevant
and significant to the caregiver).
Appendix 5
page 48 Palliative Care Services Plan 2009-2016
Harnessing appropriate and practical and emotional support from non-professional sources is not designed to substitute the
role of clinical professionals in caregiver support. It serves to strengthen community capacity and build social capital and lay
the foundations of effective support in bereavement.
A strong weight of published evidence also suggests that early social reintegration and support through existing networks
of social support may represent the most effective and therapeutic mechanism to reduce complicated grief reactions and
offset the increased risk of caregiver morbidity. In this context, the facilitator works to prime the caregiver support network
to recognise and respond usefully to the emotional (as well as the practical) needs of that caregiver as they experience grief
and loss after the death.
To ensure the optimal development and utilisation of this role it may benefit from being relocated to a more appropriate
service other than palliative care. On the basis of mid point evaluation (due in 2012) these roles may be sponsored by, or
transferred to, primary care services in GP Plus networks or Commonwealth carer respite service or even local councils, and
take up a wider role in community network facilitation to a broader range of target groups (possibly even those identified
through locally generated health improvement plans.
The personal care worker in community palliative care
This plan anticipates the need for a workforce of personal care workers with accredited skills and training in the provision of
end of life care.
Their role in personal care workers within community palliative care teams is described elsewhere.83
The palliative care sector will have a leadership role in the development of training, accreditation and supervision of practice of
this workforce.
The development of this personal care worker role for use in palliative care packages will require planning and a
comprehensive workforce strategy. This strategy will need to incorporate not just recruitment and role promotion, but will
also require a careful mapping of opportunities for workers to progress through a well-described career path involving role
consolidation and progression though an articulated program of training and credentialing opportunities.
By this means, those aspiring to a career in community-based end of life care work can move along a path from an entry point
characterised by casual employment and heavily supervised practice in an unregulated role through to a fully credentialed and
professional role.
Optimising contributions through advanced practice roles
Advanced practice roles:
have extended and expanded scopes of practice >
incorporate innovative, non-traditional tasks >
take responsibility for aspects of care previously undertaken by another health professionals. >
Advanced practice, however involves more than transferring tasks or functions from one member of a team to another. What
makes a practice role advanced , is the application of advanced knowledge required to safely perform those services or tasks.
The other requirement for these roles is the maintenance of high-level collaborative interdisciplinary model of teamwork and a
shared approach to clinical governance.
An advanced practice professional is a recognised expert in their field. They have special knowledge, skills, and years of
experience related to the care of a specific patient population and in the delivery of expert, specialised clinical services.
Their roles involve expanded practice, across multiple domains related to clinical practice, education, research, professional
development and leadership, and they have a pre-established minimum level of post-basic education, and an appropriate level
of clinical supervision required for safe practice at an advanced level.
A number of advanced practice roles have been planned for palliative care services in South Australia.
Appendix 5
Palliative Care Services Plan 2009-2016 page 49
The palliative care consultant physiotherapist and occupational therapist
Rather than seek additional allied health workers, the intent of this strategic plan is to utilise the contribution of therapists for
higher-level effect.
A physiotherapist and an occupational therapist will be employed by each Level 6 service with the expectation that these
clinicians will engage in graduate level palliative care education, develop advanced clinical expertise and serve as clinical
leaders within their respective disciplines.
These clinical leadership roles will serve as consultant clinicians. Through the development of their own roles, and engaging
a shared program of advanced practice and role development, they will fully explore and optimise the contribution that
physiotherapy and occupational therapist roles can make to:
the comprehensive functional assessment >
community-based support of palliative care patients (including in the GP Plus Health Care setting) >
maintenance of functional independence >
palliative rehabilitation from reversible decline in function >
the management of asthenia. > i
Consultant therapists will serve as statewide resources and lead their services in the capacity building of other therapists who
work in primary and acute care settings to support quality end of life care. They will be expected to contribute to curriculum
development, education and training within and beyond their own disciplines, and will bring new focus and capacities to the
research agenda.
The palliative care consultant pharmacist
Through the Pharmacy Reform Program, accredited consultant pharmacists will be positioned in each Level 6 service and in
Country Health SA to take up leadership roles in clinical practice, teaching/education curriculum development, and clinical
research within the field of palliative care pharmacotherapeutics.
A fully optimised advanced practice pharmacy role in palliative care would play a critical role in the ongoing management,
monitoring and titration of complex drug regimens, and serve as an expert resource for all prescribers providing end of life care.
These roles will facilitate a program of close engagement and capacity building between Level 6 services and community
and hospital pharmacies across the state, and through the development of a statewide community palliative care pharmacy
network. The pharmacist based in country will work across all country areas.
A self-sustaining SA Palliative Care Community Pharmacy Network will:
Facilitate a quality use of palliative medicines approach across community, aged care, disabilities and acute care settings. >
Expand the number and the capacity of community pharmacists across the state providing home medicine reviews for >
palliative care patients in the community
Ensure the optimal prescription and dispensing of palliative care medications around the clock to those who need them, and >
the safe disposal of those drugs when no longer required
Explore and overcome barriers that inhibit greater contribution to the planning and delivery of coordinated multidisciplinary >
palliative care by community pharmacists in the community setting
Bring together community pharmacists with an interest in palliative care to explore and develop opportunities for increased >
community pharmacy involvement in quality end of life care in the community.
The palliative care nurse practitioner
The number of nurse practitioners working in Level 4 and 6 palliative care services will need to rise from two to 20 or more by
2016 in order to meet the projected demand arising from:
substantially increased proportion of complex care at end of life provided in the community setting >
nurse-led care options in the hospice, transitional care facilities and community shared housing arrangements >
comprehensive after hours on call and rapid response initiatives, and >
increasing complex care in country general hospitals and periurban services. >
By 2016 Nurse Practitioners will be the most common senior specialist nursing role within palliative care services and will have
established a profile across the community, ambulatory and acute care settings.
Appendix 5
i Asthenia is a clinical term that refers to weakness, debility or lack or loss of bodily strength and energy.
page 50 Palliative Care Services Plan 2009-2016
When fully optimised, these advanced practice roles will enable comprehensive clinical assessment care coordination and
clinical management for people at end of life with complex needs.
They will:
work closely with general practitioners and other primary end of life care providers >
provide the first on call for after hours advice and support >
provide the bulk of triage and rapid response roles within each Level 6 and 4 service across SA >
serve as an exemplar clinical leader and teacher in nursing at end of life. >
The advanced practice social worker
The palliative care workforce strategy will need to overcome the underdeveloped social work career path to ensure a fuller
utilisation of the range of skills and contributions inherent in the social work role through the development of advanced
practice social worker roles.
This plan recognises that experienced social workers with additional qualifications, training and skills (beyond that of
entry level social work practice) can be more fully utilised within palliative care services in particular aspects of service delivery
such as:
therapeutic one-on-one and group counselling and interventions >
community capacity building, health promotion at end of life, and partnership development >
the coordination, education, training and support of volunteers, and bereavement programs >
a clinical leadership role to provide advocacy, policy development, academic and clinical teaching, and research to build the >
evidence, design curriculum and change practice in psychosocial care at end of life.
Appendix 5
Palliative Care Services Plan 2009-2016 page 51
Appendix 6: Supporting end of life care providers
To further improve the quality of this care, in the face of an overall increase in the demand for end of life care requires:
an informed community >
an informed health sector >
the right support for generalist providers of end of life care by the palliative care sector >
a particular focus on supporting living-in-place/dying-in-place in the residential aged care setting >
a whole of population evaluation of end of life care. >
An informed community
South Australia s health reform program is being underpinned by a range of strategies that systematically increase the level
of health literacy across all sectors of the community.
In general terms health literacy refers to the ability of an individual to make decisions and act in favour of their health
in daily life.
Health literate people have increased control over their health; they take responsibility and participate in activities such as
actively seeking out health information, navigating complex systems, changing behaviour that puts their health and wellbeing
at risk and negotiating health care options for themselves.
Health literacy at end of life has a particular focus on:
open honest communication around prognosis >
fully informed and realistic appraisal of treatment choices, their benefits and their burdens >
timely, sensitive and continuing engagement with people, their caregivers and families to elicit and explore their preferences >
facilitation of those choices through Advance Care Planning >
recognising that people can and do change their minds. >
To date uptake of advance care planning under the Consent to Medical Treatment and Palliative Care Act 199584 has been
relatively low. The development of an informed choices program as a statewide approach to achieve effective promotion
of Advance Care Planning across SA Health is an important feature of the health literacy agenda.
A statewide Informed Choices Program will support health workers facilitate timely conversations between people and their
family members, caregivers, friends and the health care teams working in both community and hospital settings to ensure
that people s choices about treatments are both known in advance and are respected.
This is particularly important in situations where a person is unable to speak for themselves.
Advance care planning gives people the opportunity to exert greater control over health related decision-making at the
end of life.
Written and signed advance care plans serve as a record of a person s choices ahead of time, and a consistent and coordinated
informed choices program will help to ensure health providers respect peoples choices at critical moments in the clinical
decision-making process. By exposure to an informed choices program, individuals and families increase their health literacy.
In South Australia, The Queen Elizabeth Hospital has championed the uptake of Advance Directives through the Respecting
Patient Choices program. Since 2004 the Respecting Patient Choices team at has built up considerable capacity and experience
in this area, and has demonstrated strong uptake of advance directives across western Adelaide.
Advance Care Planning has become routine practice in many residential and community aged care services, and a number of
hospitals are currently developing local advance care planning programs to ensure uptake of Advance Directives, suggesting
the need for coordination and consistency of approach.
The SA Government is currently engaged in a review of the laws, regulations and conventions that relate to Advance Care
Planning and Advance Directives to determine potential changes needed to ensure advance directives can be made and
respected. This review will result in legislative changes and new documentation to record Advance Directives in SA.
Appendix 6
page 52 Palliative Care Services Plan 2009-2016
An Informed Choices Program should be applied across South Australia using a well-coordinated and consistent approach
to lift the capacity and skills of targeted front-line health workers in facilitating timely conversations about care choices and
procuring advance care plans. This will require a staged program of training and support to a range of health care workers in
the community, in residential aged care facilities, in hospitals and health clinics across the state.
While the palliative care sector has been identified as having a lead role in the development of this health service innovation,
the community primary care setting has been suggested as the most appropriate clinical venue for the timely and sensitive
facilitation of conversations about care choices and the generation of Advance Care Plans. There are a range of key frontline
workers (practice nurses, GPs, community and hospital-based chronic disease care coordinators, lifestyle coordinators, etc)
who are positioned upstream where critical triggers that serve as timely and appropriate opportunities to initiate Advance
Care Planning occur. These workers will be key agents in the efficacy and success of the Informed Choices Program.
Statewide planning that seeks to meet the care needs of healthy older people and to best manage the care of people living
with chronic disease, both represent key opportunities to maximise the delivery and impact of an Informed Choices Program.
With this in mind, the operationalisation of an informed choices program will overlap a range of planning initiatives and draw
in a range of partner programs, agencies and services to achieve effective and sustainable results.
An informed health profession
To further lift the quality of care provided to South Australians at end of life requires:
service-level and clinician-level capacity to adapt to changes in practice informed by evidence and a best-practice approach >
the incorporation of the principles and philosophy of palliative care into foundation-level educational curriculum of all >
social and clinical health disciplines involved in the provision of end of life care.
Beyond foundation training, each discipline, and each specialty and advanced training program should address quality care
at end of life and ensure that specialist curricula and continuing profession development programs reflect contemporary
required knowledge and skills.
All clinicians involved in the care of people at end of life across public and private health sectors will need to:
maintain a contemporary understanding of the ethics and duties that underpin the change from curative to palliative >
strategies, including an appreciation of relevant legislative and professional standards of practice, the appropriateness of
and justifications for withholding or withdrawing treatments and respect for the informed choices of people at end of life,
their advance directives and the decision-making capacity of their legally appointed proxies
maintain skills in advanced care planning, breaking bad news, and in honest and open communication around prognosis, >
supporting informed consent through realistic interpretation of the benefits and burdens of treatment, and spend time
listening and understanding peoples concerns, preferences and aspirations at end of life
reflect on their own mortality and their feelings and responses to death, loss and grief >
understand the scope of palliative care services in meeting the needs of people at end of life maintain contemporary >
expectations about their own level of involvement in end of life care, and
understand the needs-based referral criteria and new mechanisms to achieve timely and appropriate referral to specialist >
services.
Support for generalist providers of end of life care
End of life care providers continue to benefit from an expanding body of high quality, evidence-based resources, guidelines
and clinical pathways to inform and support their clinical practice and decision-making. Though the National Palliative Care
Program and at a state level, these include but are not limited to:
Caresearch: Palliative Care Knowledge Network. > 85
APRAC > 86 and COMPRAC.87
The Rural Palliative Care Program. > 88
MAPCARE. > 89
As the terminal care phase approaches, end of life care pathways including the Liverpool Care Pathway90 and the Gold
Standards Framework91 have both been promoted internationally as a means of systematically improving the outcomes of end
of life care provided by generalist clinicians in acute and community settings.
Appendix 6
Palliative Care Services Plan 2009-2016 page 53
Local adaptation of these approaches will continue in a limited fashion until high level evidence confirms the efficacy and
sustainability of their perceived outcomes.
These initiatives underpin and support the capacity of all generalist providers to better meet the needs of people at end of life,
their caregiver and families/kinship groups.
Supporting end of life care across the aged care sector
The concept of ageing in place has driven the development of a range of services aimed at supporting people to remain in
their place of residence as they grow older.
Following on from this concept, dying in place has emerged as an important principle for the planning and delivering of
services to support people to not only live well at the end of their life, but to die where they have lived.
The concept of dying in place represents an important social response that serves to enhance choice and reinforce personal
and social continuity. In this respect, it reinforces death as a normal part of life.
For the majority of frail and disabled older people, their place of residence becomes a residential aged care facility. However:
The age of Australians living in residential aged care facilities is increasing with over 50% of all residents now over 85 years >
and more than a quarter over the age of 90 years (while only 4% are 65 years or younger)
Their level of acuity and care needs are increasing with the proportion of those assessed as requiring high level care has risen >
over the last decade from under 60% to approximately 70%
Length of time from admission to death is also increasing with an average completed length of stay for permanent residents >
rising from 131 to 146 weeks over the last decade.92
For providers of care in the residential aged care setting, this requires high level and ongoing commitment to the twin
concepts of living in place and dying in place .93,94 Providing end of life care for people living in a residential aged care facility
is an integral part of the work of the aged care sector.
A number of enablers and strategies have contributed to the enhanced capacity of all aged care services in South Australia to
provide high quality end of life care.
These include or are reflected in:
The recently implemented Aged Care Funding Instrument which now includes palliative care in its funding classification >
criteria.
The considerable investment of educational resources, training and support through the National Palliative Care Program > 95
and the Encouraging Best Practice in Residential Aged Care Program96 to systematically build up the capacity of residential
and community aged care services to provide quality end of life care.97,98,99,100
A number of initiatives rising from the older peoples health reform agenda, as outlined in the Health Service Framework >
for Older People. One element of this wide-ranging reform is the advent of Regional Aged Care teams working across aged
care services and settings. These interdisciplinary teams will have a continuing presence and impact on the quality of care for
older people both in their homes and in supported care settings. This initiative will lead to greater integration, an improved
capacity for timely intervention in the trajectory of at risk elderly, and greater continuity of care for older people at end of
life. Through close partnerships the regional aged care and palliative care teams will work together to identify triggers and
optimise their respective contributions to the care and support needs of older people at end of life.
The proven impact and efficacy of the link nurse model. > 101,102,103
Around the clock access to advice and support from a local palliative care service, and access to overnight admitted care in a >
hospice on the basis of need.
The introduction of new palliative care service reporting requirements that detail support activities >
A whole of population surveillance approach, that will capture key aspects of outcomes related to end of life care across >
residential and community aged care settings, and will need to include a shard quality and audit capacity across regionalised
aged care services and palliative care services.
Appendix 6
page 54 Palliative Care Services Plan 2009-2016
Evaluating end of life care
The reforms heralded by the National Health and Hospital Reform Commission align with the reform agenda underway
through South Australia s Health Care Plan.104
Performance targets and benchmarks as well as regular reciprocal public performance reporting of health performance across
all Australian jurisdictions will become a more prominent feature of future Australian Health Care Agreements.
Patient-level data that links family experiences, service utilisation and outcomes, along with number of emergency
department visits and hospital days in last 30 days of life per person have both been mooted as possible performance
benchmarks for incorporation in Australian Health Care Agreements by 2010-11.
End of life care surveillance is a coordinated and ongoing planning and quality activity designed to establish and analyse an
inventory of existing databases and additional and required data that helps answer key what , how and where questions
about the end of life care provided in South Australia.
More specifically surveillance of this kind seeks to describe, from a population-wide perspective, the places of end-of-life care,
care transitions, levels and types of caregiver involvement, the actual treatments and care provided to people at end of life. It
also seeks to identify and refine potential indicators or proxy measures of the quality of end-of-life care that are to be found
within available data.
Although the term implies a policing function, its purpose is to inform planning and resource allocation. It will result in a
greater capacity to plan and equitably deliver care across service catchments and areas of the state that vary considerably in
terms of demographics and the distribution of health determinants.
This focus on population-wide end of life care outcomes rather than just the outcomes of those referred to palliative care
services, is consistent with the reform agenda of both the National Health and Hospital Reform Commission and SA Health.
Palliative Care Australia has recently been involved in bringing together a national quality end of life care alliance to progress
this agenda.
Integral to this focus is the reliable capture of high quality relevant data from a range of sources that when combined, yield a
comprehensive picture of outcomes of care at end of life for the whole of population.105,106,107
Appendix 6
Palliative Care Services Plan 2009-2016 page 55
Appendix 7: Improving access and equity
People living in rural and remote settings
Currently 15 palliative care services operate across periurban, rural and remote South Australia. Based in larger population
centres across the state, they each provide support to primary care providers in smaller population centres and their
surrounding districts.
A Palliative Care Coordinator will lead each rural and peri-urban palliative care service. These positions serve to ensure:
the provision and coordination of high quality care for palliative care patients in each service catchment >
the continuing provision of education and capacity building to primary and acute care providers of end of life care in the >
primary care and acute care settings across the service catchment
a close and ongoing relationship with the Level 6 service partner. >
Drawing on the role of Country General Hospitals as outlined in the Strategy for Planning Country Health Services in SA,
Level 4 services will have greater capacity to support one or more neighbouring Level 2 services that operate within their
cluster arrangement.
The Nurse Practitioner role will be a key element in the provision of expert palliative care by Level 4 services across the state.
Within the framework set out by the Nurses Board of South Australia nurse practitioners working in Level 4 palliative care
services would be banded as rural and remote with either a palliative care-specific scope of practice, or a more general
community health scope of practice which includes chronic disease and end of life care as a combined specialty scope of
practice. These Nurse Practitioners will need access to palliative medicine specialists and to regular periods of clinical time in
a Level 6 service through their candidature and on an ongoing basis.
To meet the end of life care needs of people who will increasingly be receiving care for advanced disease at local Country
General Hospitals rather than travelling to the metropolitan hospitals, the plan anticipates the need for designated medical
roles within rural Level 4 services. In the absence of staff medical officers employed at Country General Hospitals, the role of
the General Practitioners with a Special Interest in palliative care will be explored.
The General Practitioner with a Special Interest in palliative care will undertake additional training through the Clinical Diploma
of Palliative Medicine. Along with nurse practitioners and other members of the Level 4 clinical team they will be supported to
locally manage the care of people at end of life with complex needs though the provision of a program of regular visitation as
outlined below.
The incorporation of hospices in key periurban centres in the outer north suburbs and the Mt Lofty Ranges will also
consolidate specialist capacity in the periurban areas and allow for specialist inpatient care for people from across the greater
Adelaide area and beyond, based on need.
A staged program of new hospice development will support the development of these two units and consolidation of local
specialist workforces to staff these units. The program of experience in the palliative approach will be also be used to augment
this local staff training and capacity building program.
The key features of the partnering relationship between Level 6 services and their respective Level 2 and 4 services partners is
the calendared program of visits and support.
The features of partnering include provision of 24-hour phone advice and support to Level 2 and Level 4 service providers, and
through them to primary and acute care service providers across the state requiring assistance with clinical care at site of care.
A year-round calendar of multidisciplinary visits to support ongoing face-to-face clinical teaching by key members of the
Level 6 team including:
palliative medicine specialists (funded though Medical Specialist Outreach Assistance Program in those rural areas targeted >
by this program)
palliative care nurse practitioners and nurse consultants >
service directors >
social workers, palliative care clinical psychologists, pharmacists, physiotherapists and occupational therapists >
palliative care volunteer and bereavement coordinators >
regular and ad hoc clinical and professional development support conferencing via Telemedicine, with telemedicine facilities >
available at each Level 6 service base
Appendix 7
page 56 Palliative Care Services Plan 2009-2016
funded release to participate in a structured program of periodic clinical training and professional development time in the >
Level 6 service for all rural coordinators and clinical staff working in Level 2 and Level 4 services
access to Level 6 continuing professional development program activities, and to an ongoing remote group clinical >
supervision program.
Infants, children and adolescents
There is a statewide paediatric palliative care service. This palliative care plan focuses on:
consolidating the service to ensure long-term sustainability >
addressing paediatric-specific workforce planning within the wider workforce strategy >
integrating paediatric palliative care capacity within partnering and clustering arrangements, and through community >
capacity building
ensuring the needs of the paediatric palliative care population are reflected in sector reporting, quality, surveillance, >
research and development programs
the need for expansion of paediatric palliative care-specific psychosocial support and bereavement counselling services >
the pathway of transition for older adolescents and young adults from child-centred to adult-orientated services >
The end of life care needs of infants, children and adolescents, their parents, siblings and families are unique, and so too is
the palliative care service designed to meet their needs.108,109
The key features of Paediatric Palliative Care Services include:
specialist respite, emergency, palliative and terminal care (that can be offered within the hospital, hospice or the >
family home)
bereavement counselling and support (offered as individual home support, in groups and with siblings) >
information, advice and practical assistance >
around the clock telephone support >
a volunteer support service (that ensures families are supported) >
collaborative working arrangements with other agencies and individuals to ensure a continuum of care and support is >
available to the children and families, and that the families have choices about care and the place of death
provision of information, expert help and guidance for others involved with the child and family. >
The five most significant differences between adult and paediatric palliative care services are:
The level of expertise and skill required for the clinical management of a diverse range of rare or uncommon conditions >
that led to death in infancy, childhood and adolescence. For this reason, the continuing central role of the child s
paediatrician is essential
The incidence of life limiting illness in children in developed countries is estimated to be 0.1% of children. > 110 The relatively
small numbers of referrals per year in South Australia supports only a small clinician team of expert specialists. The training
and replacement of specialist workers represents a continuing challenge, as is the need for high level coordination and
integration by the statewide paediatric and local adult services
Parents often serve as the key decision-makers and caregivers >
The level of psychosocial and emotional distress for parents, siblings, families, neighbourhoods (including school >
communities) are profound and lead to increased potential for complicated grief reactions, impaired long-term adjustment
and long-term measurable impacts on health and wellbeing
The referral criteria for paediatric palliative care service have traditionally been broader than those of adult services and >
include infants, children and adolescents with:
Conditions for which curative treatment has failed, such as cancer, or irreversible organ failure -
Conditions where long periods of intensive treatment may prolong the length and improve the quality of life, but where -
premature death is still probable or inevitable, such as Cystic Fibrosis and Duchenne muscular dystrophy
Progressive conditions for which treatment is exclusively palliative and may commonly extend over many years, such as -
Batten s disease, CJD, Mucopolysaccharidoses
Severe neurologically disabling diseases, which although not progressive, lead to vulnerability and increased susceptibility -
to complications and premature death, such as severe Cerebral Palsy.111,112,113
Appendix 7
Palliative Care Services Plan 2009-2016 page 57
With improvements in clinical science and practice some conditions that were once considered fatal have increasingly become
chronic in nature, to the extent that death can be forestalled well into early adulthood and beyond. For some adolescents and
young adults a transition pathway from child-centred to adult orientated health care systems is required.
This plan anticipates progress by the Australian Paediatric Palliative Care Reference Group in the development of a purposeful,
planned transition pathway that addresses the medical psychosocial and educational/vocational needs of adolescents and
young adults with chronic medical conditions and physical disabilities as they make the move from paediatric palliative care
services to appropriate adult services.j
Bereavement support surrounding the expected death of an infant, child or adolescent is currently provided on an ad hoc
basis. A skilled counsellor or social worker with expertise in loss and grief to serve as a statewide resource and leader has been
identified as a high priority recommendation arising from sector feedback, role demand and gap analysis.
A statewide paediatric palliative care psychosocial support and bereavement worker position based at Women s and Children s
Hospital will:
Provide paediatric palliative care bereavement services and counselling >
Utilise early intervention strategies targeted to parents, siblings, families and friends to therapeutically alter bereavement >
course and outcomes
Engage with key workers in schools, faith communities and other community groups to advance health in >
grief and loss
Provide expert advice consultancy, support and education related to children s grief and bereavement to metropolitan, peri- >
urban, regional and rural palliative care services
Build capacity of adult palliative care services and other end of life care providers to provide bereavement counselling to >
children and adolescents who have been affected by death of a family member.
The issue of workforce replacement within small teams of sub-specialty experts is a particularly challenging one. With
this in mind, the long-term sustainability of the paediatric service will be better served by replacing the nurse coordinator
position with a second Nurse Practitioner position and shifting the service management role to the psychosocial support and
bereavement worker.
The family General Practitioner, the child s Paediatrician and a local adult palliative medicine specialist each have a role in
providing medical input into the end of life care of infants, children and adolescents.
In each instance their contributions need to be clarified and coordinated with an emphasis on right balance of continuity,
accessibility and expertise to meet the assessed needs of each child and family.
The consolidation of the medical contribution to the paediatric service hinges on:
the continuity of the role of the GP and the primacy of the child s paediatrician >
the continuing ad hoc role played by local adult palliative medicine specialists >
the use of two sessions per week of clinical consultation at the Women s and Children s Hospital by an adult palliative >
medicine specialist from the Central Adelaide Palliative Service, in the absence of a paediatric palliative medicine specialist
or paediatrician with a special interest and training in palliative care.
Aboriginal people
Aboriginal people in South Australia are a diverse population group made up of different clan and language groups.
More than 50% of Aboriginal people in the state live in rural and remote areas.
Research confirms that as the terminal phase of the end of life journey approaches, getting home to country is the highest
priority for many Aboriginal Australians.
The palliative care plan supports improved access for Aboriginal people to their local palliative care service and directs all
mainstream services providing end of life care to do so in ways that respond to the cultural needs of Aboriginal people at end
of life, their families and extended kinship groups.
Within the SA Country Health Care Plan, Pt Augusta has been identified as the location for a centre of excellence of
Aboriginal Health for the state.
Appendix 7
page 58 Palliative Care Services Plan 2009-2016
Aboriginal and Torres Strait Islander peoples experience significantly more ill health than other Australians. They typically die
at much younger ages and have higher rates of diabetes, cardiovascular disease and cancer. They are more likely to experience
disability and reduced quality of life because of ill health.114 At both national and state level, closing the gap in health
outcomes between Aboriginal and other Australians has been identified as a high priority.
Several projects have been working to improve the end of life care journey for Aboriginal people:
A National Indigenous Palliative Care Needs Study > 115 undertaken by the Australian Government Department of Health and
Ageing in 2002, led to the development of practice principles and educational resources116,117 to support mainstream health
care workers to provide culturally appropriate end of life care to South Australian Aboriginal people
The Program of Experience in the Palliative Approach (PEPA) has an expanded brief to provide experiential learning >
opportunities for Aboriginal Health Workers to spend time in a palliative care service. Until 2010, an Aboriginal PEPA
Manager will be working to develop sustainable networks of collaboration and support between local palliative care
services and Aboriginal Health Services and Aboriginal Community Controlled Health Services. These networks will serve
to enhance access to and quality of, care provided in country to Aboriginal people at end of life. Evaluation of this
project will inform the needs for and scope of addition or ongoing support programs for end of life care to Aboriginal
people in South Australia.
Where necessary cultural safety training opportunities for palliative care practitioners will be provided.
In those hospitals where it is anticipated that Aboriginal people will require inpatient end of life care, the facilities need to be
designed to adequately account for the cultural needs and practices of Aboriginal people.
Design emphasis will be placed on:
Significantly increasing the size of rooms to encourage and accommodate extended family and kinship groups over long >
periods of time
Providing direct bed access to adjacent outdoor areas to enable care to be provided outside (day and night) over extended >
periods of time. These outdoor spaces need to be purposefully designed
Providing unencumbered capacity for ceremonial and cultural activities before and after death (with specific reference to >
smoking ceremonies and aspects of sorry business).
People from diverse cultural backgrounds or linguistic traditions
Health services and professionals that provide care at end of life require, at a minimum, the capacity to engage in culturally
safe practice, by recognising the extent to which culture and language influence and frame responses to:
beliefs and understandings about death and dying, the purpose of the human experience and the virtue, if any, of human >
suffering
the transaction of information, truth telling and consent >
the provision and receipt of services >
the negotiation of professional/therapeutic and interpersonal relationships >
Equally, the needs or preferences of individuals cannot be presumed on the basis of their membership of a community that is
identifiable on the basis of culture, language or skin colour.
Through migration, the diversity of cultural and linguistic groups present in the South Australian community is expanding, and
each palliative care service will need to identify the cultural and linguistic profile of the population living in their respective
service catchment.
Palliative care services will report on these profiles and the activities and programs undertaken to best meet the needs of
people at end of life within their service catchment who are marginalised or at risk of reduced access to services due to cultural
or linguistic difference.
Palliative care services will utilise the Cultural Competency in Health: A Guide for Policy, Partnerships and Participation118
to inform the care of individuals and service-level responses to cultural and linguistic communities.
Rather than reproducing palliative care services for every cultural and linguistic community, service responses will be
directed toward collaborative partnerships with community leaders and key workers within cultural and linguistic groups
across service catchments, and work with them to build the capacity of communities to provide their own culturally- and
linguistically-specific care at end of life.
j Based on the UK-based Association of Children s Palliative Care Transition Care Pathway
Appendix 7
Palliative Care Services Plan 2009-2016 page 59
Older people
South Australia has one of the fastest growing populations of older people in Australia. The exception to this marker of
progress is the Aboriginal and Torres Strait Islander population that has a significantly lower life expectancy.
Older people deserve access to quality, safe, complete and affordable health care.
The ageing of SA s population, and the relative growth in the number and proportion of older South Australians brings with it
significant challenges. Not least of which can be measured in terms of significant increase in demand for general health care
and a shift in orientation of many age-specific services and programs to support a healthy ageing approach to care.
The Health Service Framework for Older People 2009-2016 sets out how SA Health will respond to this challenge. These
predictable demographic changes will also test health service responses targeted at meeting the end of life care needs of an
expanding proportion of the population, many of whom also have ongoing complex or multiple health care needs, and fewer
available caregivers.
A key initiative of the Health Service Framework for Older People is the development of Regional Older People s Health
Services. These teams will provide a range of clinical services and take up a leadership role in collaboration within the wider
aged care sector to achieve improved care for all older South Australians. Regional Older People s Health Services and palliative
care services are committed to working in partnership to ensure older people and their families are supported through the end
of life journey with access to quality end of life care when required.
Younger people needing supported care in the community
Residential aged care facilities are not regarded as an appropriate setting to best meet the needs of people under 65 years
of age who:
have a slowly progressing or extended end of life care trajectory >
require continuing input by palliative care services >
require continuing supported care in a suitable medium term accommodation. >
This nationally acknowledged gap in service requires a structured, cost effective response to ensure equitable access to
sustainable high quality supported care options to meet their continuing care needs.
The plan proposes exploration and piloting of alternative options for these people and for a broader category of people
requiring step-down or slow-stream palliative care.
Palliative care in the private sector
Over recent years support for out-of-hospital end of life care by private health insurers in South Australia has declined to
a minimum.
Changes at national policy level or arising through industry reform are required to overcome the barriers that currently limit
privately insured South Australians options for home-based care and support at end of life. These changes would impact on
the demand for publicly-funded palliative care services.
Any opening up of support and care options for privately insured South Australians will also create market opportunities for
those private and not-for-profit providers of care to extend their services beyond acute inpatient care and oncology services
and allow them to offer more integrated inpatient and community-based end of life care programs.
In South Australia, Calvary Health Care, through Mary Potter Hospice is recognised as a specialist provider of inpatient
palliative care.
People with interventional pain management needs
Interventional pain management techniques (beyond continuous subcutaneous infusions) are indicated in instances where pain
or excessive side effects persist despite the optimisation of analgesia.
The proportion of palliative care patients who would require such intervention has been quantified with the international
literature suggesting that 8-10% of people with advanced cancer require or benefit from interventional approaches to pain
control.119,120
Appendix 7
page 60 Palliative Care Services Plan 2009-2016
Outcomes in people with pain management needs will be supported through:
The presence of a mechanism to formalise service agreements and referral pathways between palliative care services and >
tertiary level pain services through regional health services to ensure that people at end of life with acute, chronic and
complex pain syndromes receive timely and appropriate access to specialist pain services
A program of audit and evaluation to determine quantify and cost the optimal appropriate use of procedural pain control >
interventions within the palliative care population
The incorporation of workforce and resource requirements into future service planning. >
Health in grief and loss
Palliative care has had a traditional and philosophical commitment to after-death care and the provision of bereaved support.
This is not the case for many other clinical services that provide care to people who die. Consequently, many who experience
the loss of a relative, friend or colleague, do so without routine screening for bereavement risk, or offers of bereavement
support and follow up.
It is not surprising then to find that palliative care services, particularly those in rural settings, are frequently called upon to
provide bereavement support to people who are thought to be at risk through sudden death associated with sudden infant
death syndrome, miscarriage and other causes of unanticipated peri-natal death, as well as from acute illness and deaths
arising from sudden or traumatic causes.
A substantial and growing body of research evidence confirms that grief and loss are important and under-recognised
contributors to mortality and morbidity.121 Although the experience of grief and loss at the death of a relative, friend or
colleague are universal experiences that will touch everyone at some point in life, complicated grief is strongly associated
with poor outcomes. The effects can be wide-ranging and result in long-lasting health, social and economic costs.
As mentioned elsewhere, the greatest enabler to health in grief and loss is found along a path of reintegration back into life
with the thoughtful open support of existing social networks of family, friends, neighbours and colleagues.
Accumulative and compounded grief and loss impact on the health and welfare of Aboriginal South Australians and need
particular attention and culturally appropriate and integrated responses.
This plan recognises the established track-record of the palliative care sector in the areas of risk assessment and in the careful
and appropriate positioning of their role and contribution to care along the specialist and primary care provider continuum.
On this basis, the palliative care sector appears well positioned to take a leadership role in progressing a whole of population
health in grief and loss response.
A separate plan to scope and implement a statewide health in grief and loss agenda across the health and welfare sectors
is called for.
The key elements of a successful whole-of-population health in grief and loss agenda are:
The formation of a new community of practice built around a coalition of clinicians, advocates, researchers, academics and >
other stakeholders who will take up leadership responsibility and build clinical practice capacity in appropriately targeted
model of care and evidence-based bereavement care interventions and ensure their application across the health and
welfare system
A peak body to steer development of community services and provide advice to SA Health, Family and Community Services >
and (at a federal level, with others) to the Commonwealth Department of Health and Ageing in the area of health in grief
and loss
The development of the right mix of specialist and generalist community-based Loss and Grief Services to operate across the >
state in community health or welfare sector, GP Plus Networks and centres to address current gaps ie traumatic and sudden
deaths, children and adolescents, indigenous health and community services, and across cultural and linguistic communities.
The use of a health promotion community development framework and other public health approaches to build >
community capacity over a 10-year time frame
Consideration of the introduction of the role of a Chair of Health in Grief and Loss to aid the development of undergraduate >
and post-graduate educational curriculum, and progress a coordinated program of research that builds evidence to support
quality and efficacy in both direct therapeutic interventions and in the area of community capacity building
Development of strategies to build capacity of general practitioners and other primary health care workers to understand >
uncomplicated / complicated grief and access to appropriate referral sources.
Appendix 7
Palliative Care Services Plan 2009-2016 page 61
Appendix 8: Enhancing quality and measuring
performance
The palliative care assessment
A key feature of referral for palliative care is the Palliative Care Assessment, which starts with an initial triage by a designated
triage officer (usually an advanced practice nurse) to assess appropriateness of referral, complexity and urgency of response.
A comprehensive assessment process, using a standardised systematic multidisciplinary assessment tool is then initiated
to ensure early identification of physical, social, spiritual and emotional needs, develop and individualise care plans, and tailor
service responses to meet need.
The level of urgency dictates the time-frame for response to both triage and the initiation of the palliative care assessment
process.
Using a common process and agreed criteria, the levels of service responsiveness across all services can be benchmarked
against a best-practice standard.
Ongoing assessment and revision of care plans requires the continuing input of an expanded range of disciplinary perspectives
and contributions.
System integration in palliative care
System integration can be illustrated by the concept of single entry into palliative care. This ensures that once referred,
assessed and accepted into a palliative care service, a person and their caregivers will not be required to progress through
multiple repeated admissions to other palliative care services as they move around the acute care or community care services
and across private and public sectors.
Furthermore, single entry means that they will not be required to tell their story over again to different clinicians because their
relevant clinical history is accessible to any palliative care provider at point of care (in any hospital, at home, in the GP Plus
Health Care Centres or outpatient clinic).
With this level of connectivity and integration, a comprehensive palliative care assessment and plan can accumulate over
encounters within and across different teams.
Using shared processes, clinical assessment and screening tools and an agreed set of criteria for entry, clinical teams across
the state and across relevant government and non-government agencies will collect the same data in the same manner.
They will also require the necessary level of direct access rights to medical records of people referred to their service.
This also enables palliative care specialists to provide effective remote on call advice and support to clinicians at point of
service. Secure web-based data warehousing enables specialist clinicians to access and interpret securely held patient records
and effectively contribute to care planning and clinical decision-making.
This can be done remotely or at the point of care as dictated by circumstances.
Effective collaboration with others across clinical settings and services, across disciplines and across the public and private
sectors are hallmarks of system integration. Palliative care services will be increasingly orientated toward building and
sustaining the capacity of others to provide quality end of life care, rather than attempting to provide all end of life care to
all South Australians.
Reporting and evaluating outcomes
The National Hospitals and Health Reform Commission place significant emphasis on open transparent reporting and indicate
that regular reporting by governments to the Australian people will be a prominent feature of all future Australian Health Care
Agreements.
The commission suggests that:
state governments would be responsible for regular reporting against agreed performance indicators for public hospitals,
including at a whole of state level, at a geographic area level, at a the level of individual hospitals, and showing outcomes for
particular populations for whom the system has not been equitable (p.27).
Appendix 8
page 62 Palliative Care Services Plan 2009-2016
Palliative care services funded by SA Health will participate in regular and ad hoc reporting that encompasses both activities
and outcomes. Reporting will focus on a range of service level activity data elements including:
De-identified demographic data about those South Australians referred to palliative care services, and their needs and >
circumstances at time of referral
Data that describes the utilisation of hospice beds including purpose of admission, length of stay access and transfer issues >
Rate of death at home, rate of death at preferred site of care and proportion of time spent, by those referred to palliative >
care services in over-night admitted care
Clinical teaching, education, research, quality activities and advanced training activities >
Teleconferencing, out of region visiting and other activities in support of partnering arrangements >
Staffing and workforce data in support of the palliative care workforce agenda >
Consistent with the agenda set by the National Health and Hospital Reform Commission, SA Health will seek to evaluate
population-wide end of life care outcomes.
A palliative care clinical network will facilitate the coordination of service development and research including the shared
teaching, learning, training, resource development and research opportunities. Practice development, knowledge transfer and
the translation of evidence into practice across the sector will be facilitated where possible, on a statewide basis. A state-wide
end of life care research collaborative will be reinstated, with an expanded focus on collaborative cross-specialty research.122
Demonstrating performance and continuous improvement
National Standards Assessment Program123 funded by the Australian Government Department of Health and Ageing under
the National Palliative Care Program provides a national approach to continuous quality improvement in palliative care service
delivery.
This program will form a critical element in the SA palliative care quality framework. It is also a means by which palliative care
services in South Australia can contribute to the national quality agenda.
The plan sets out a timeframe for the national palliative care specific accreditation for Level 6 services (by 2012) and Level 4
services by 2016.
The Palliative Care Outcomes Collaborative124 also provides South Australian palliative care services with an opportunity
to participate in a national continuous quality improvement project by the standardised collection and analysis of routine
outcome measures which support a national benchmarking system designed to improved palliative care outcomes.
Research and development
The palliative care sector continues to benefit from a national program of research and development funded through the
National Palliative Care Program. The directions of this program will guide the research and development agenda for palliative
care services in South Australia.
Through the upcoming Australian Health Care Agreements, and through a range of intergovernmental forums, those elements
of the local end of life care reform agenda that benefit from a national approach will be addressed.
Appendix 8
Palliative Care Services Plan 2009-2016 page 63
Appendix 9: The workforce profile
Each year a three year rolling workforce profile will be generated to guide the palliative care workforce strategy through
to 2016.
The workforce strategy will also be informed by ongoing analysis of the impact and efficacy of new roles and the optimisation
of others (both those inside and those outside palliative care services).
The level of uptake of new roles and their impact on others within the team, along with the overall performance and
responsiveness of teams will also be monitored.
Additional work has been planned that will refine the 2009 three year workforce profile and ensure it accounts for the
differing levels of out-of region activity that each service participates in to meet their respective partnering obligations.
With specific reference to the planned incorporation of 20 or more nurse practitioners with palliative care services by 2016,
a coordinated program of preparation and role transition involving three cohorts of six Nurse Practitioner candidates is
proposed.
The key elements of this program include set funding allocations to:
Each of the Level 6 services that will providing clinical training support for candidates >
Those services where Nurse Practitioner roles are being incorporated, to support service-level role mapping and evaluation, >
clinical governance development and specific stakeholder consultation
Each candidate as scholarship support for the post-graduate study requirements that lead to endorsement as a nurse >
practitioner
To facilitate shared training opportunities and the coordination and support for each cohort. >
Each of these elements are critical enablers to the successful incorporation of the Nurse Practitioner roles as set out in this
plan, and have been modelled on the palliative care Nurse Practitioner program underway in Victoria.
Workforce planning to align the disciplinary roles to the needs of services is an ongoing challenge that will be taken up by the
palliative care clinical network as it pilots and evaluates role innovations and monitors trends in retention, recruitment
and workforce supply.
Over the life of the plan, the workforce profile of palliative care services will be reviewed and amended.
Workforce Issues
Some new or advanced practice roles will be built into the first workforce profile at 1.0 full time equivalent per service.
This approach is calculated to ensure sufficient minimum full time positions to embed them into each service, facilitate their
optimisation and to support their capacity to develop as whole-of-state resources.
Roles in this category include the caregiver network facilitator, the advanced practice roles in pharmacy, physiotherapy,
occupational therapy, and the welfare officer and business manager positions.
A number of disciplines (namely medicine, nursing and social work) are already well established within palliative care and
represent specialty workforces that require a more systematic and long-term workforce planning view to optimise the
maintenance and replenishment of their number.
To ensure the long-term sustainability of these disciplines a dynamic workforce planning strategy will be required.
Through an ongoing iterative process that involves the production of three year rolling workforce profiles, the strategy will
need to appreciate and absorb the impact that new roles have on the traditional division of labour within the interdisciplinary
team, as well as the impact on others when existing roles are expanded and fully optimised.
Appendix 9
page 64 Palliative Care Services Plan 2009-2016
By reviewing the needs of services, and analysing the scope and function of each role using efficacy and utilisation data,
population-based formulae will be developed to enable workforce planning of roles across the team.
A base formula is derived from:
a realistic estimate of current workforce availability >
presumptions about future workforce availability >
predictions about the impact of new and renegotiated roles on the work done by current established roles, and the impact >
of new and different roles in sectors beyond palliative care
predictions about the impact of substantial changes in the amount of palliative care work taking place in homes and in >
other community care setting
a best fit approach that incorporates new strategies to test the capacity of new or optimised roles and some pump >
priming of roles that are instrumental to addressing longer-term workforce challenges across health.
Appendix 9
Palliative Care Services Plan 2009-2016 page 65
Appendix 10: Glossary
Aboriginal health workers Aboriginal and Torres Strait Islander health workers provide clinical and primary
health care for individuals, families and community groups. They deal with
patients, clients and visitors to hospitals and health services and assist in
arranging, coordinating and providing health care in Aboriginal community
health services.
Advance care directives A written record of a person s instructions regarding their consent to, or refusal
of, the future use of specified medical treatments. It becomes effective in
situations where the patient no longer has the capacity to make treatment
decisions.
Critical conversations Critical conversations arise out of ordinary communication opportunities with
others and lead to breakthrough changes in attitudes, behaviour and practice
that are sustained over then long term. They are a key indicator of clinical
leadership at any level and are demonstrated by the ability and preparedness to
identify the attitudes and behaviours that lie behind the actions of others and
address these barriers in ways that lead to change informed by an evidence-
based and best practice approach.
Clinical networks Multidisciplinary groups working on a collegiate basis to provide leadership and
strategic planning for clinical service development across the continuum of care
and across all regional health services - both country and metropolitan.
Clinical Senate A key decision-making and advisory body of SA Health comprising senior
clinicians across the health sector.
Full time equivalent (FTE) FTE is based on the total hours worked by the health professional divided by
the hours in a standard working week for that profession. A person employed
on a full-time basis has an FTE of 1.0. Likewise, someone working only 2 full
days a week is employed at 0.4 FTE. This varies for different professions. For
the medical workforce, 45 total hours per week is equivalent to one FTE. For all
other disciplines, one FTE is calculated at 38 total hours per week.
Health literacy Health literacy is described as the capacity of individuals to obtain, process, and
understand basic health information and their ability to make decisions and act
in ways that enhance or protect their health in daily life 125
Hospice An inpatient unit providing palliative care through a fully constituted
interdisciplinary team of experienced and qualified specialists. Over-night care
in the beds of the hospice are quarantined and access is based on need. An
established set of criteria is used to determine access and admission. These units
serve as a statewide resource.
Medical Specialist Outreach
Assistance Program (MSOAP)
A federally funded and indirectly managed program that enables some medical
specialists to provide outreach services to rural and remote centres.
National Palliative Care Program A national program funding by the Australian Government Department of
Health and Ageing to develop and enhance research, education and clinical
practice in palliative care across the country.
Appendix 10
page 66 Palliative Care Services Plan 2009-2016
Palliative care A specialty that grew out of the hospice movement. Palliative care seeks to
improve the quality of life of people at end of life through the prevention and
relief of suffering by means of early identification and impeccable assessment
and treatment of physical symptoms and supportive interventions to address
psychosocial, emotional and spiritual care needs
Palliative care service An integrate clinical service funded by SA Health that operates across a
population and is exclusively focused on the provision of specialised and expert
care to people at end of life.
Service catchment A described geographical area and the population that resides within it and for
which a palliative care service is commissioned to provide care.
Statistical local areas (SLAs) The base spatial unit for the purpose of collection, dissemination and analysis of
population statistics in Australia. In 2007 there were 1,426 SLA's defined under
the Australian Standard Geographical Classification system. They cover the
whole of Australia without gaps or overlaps.
Terminal stage That period of the terminal illness in which death in imminent (usually measured
in hours or days).
Triggers An event or point along a pathway that indicates or initiates an opportunity for
intervention, action and review.
Unique Record Number (URN) An allocated number that links each person to their medical record. People who
have an episodes of care with a range of hospitals, primary and community
health services accumulate a number of URNs.
Appendix 10
Palliative Care Services Plan 2009-2016 page 67
Appendix 11: Acknowledgements
SA Health offers sincere thanks to the many contributors whose commitment and knowledge have informed the development
of the SA Health Palliative Care Services Plan 2009-2016. In particular SA Health acknowledges the contributions of:
The Reference Group
Ms Kate Swetenham (Chair)
Ms Cathy Bennett
Dr Greg Crawford
Dr Chris Drummond
Ms Julie Duffield
Mr Andy Fryar
Dr Sok Goh
Ms Karen Glaetzer
Mr Will Hallahan
Mr Kevin Hardy
Ms Chris Hofmeyer
Dr Roger Hunt
Ms Peta Jackson
Ms Karen Jacquier
Ms Sharon Kelly
Mr Chris Millington
Ms Di Moncrief
Dr Karin Myhill
Dr Lawrie Palmer
Ms Karen Puvogel
Ms Robyn Rouvray
Ms Julianne Siggins
Dr Rupert Thorne
Ms Frances Watkins
Appendix 11
The Steering Committee
Dr Greg Crawford (Chair)
Dr Mary Brooksbank
Dr Peter Chapman
Ms Debbie Law
Dr Bill Lees
Mr David Roach
Ms Kate Swetenham
Ms Julie Siggins
Ms Helen Walker
The Development Team
Ms Barbie Birkedale
Ms Amy Foote
Ms Suzanne Heath
Ms Shelley Horne
Ms Meryl Horsell
Mr Matthew Ragless
Dr David Stephenson
page 68 Palliative Care Services Plan 2009-2016
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page 74 Palliative Care Services Plan 2009-2016
Palliative Care Services Plan 2009-2016 page 75
page 76 Palliative Care Services Plan 2009-2016
For more information
SA Health
Statewide Service Strategy Division
PO Box 287
Rundle Mall Adelaide 5000
Telephone: (08) 8226 6000
http://www.health.sa.gov.au/
Non-English speaking: for information in languages other
than English, call the Interpreting and Translating Centre
and ask them to call the Department of Health. This service
is available at no cost to you, contact (08) 8226 1990.
Department of Health, Government of South Australia.
All rights reserved.
Printed May 2009
Palliative Care Services Plan 2009-2016
Acknowledgements
Table of Contents
Minister s Foreword
Introduction
Profiling death and its causes
Planning end of life care
Expanding and reshaping palliative care services
Service delineation
Statewide access to specialist expertise and support
Moving from institutional to integrated regionalised service models
The right balance between in-hospital and out-of-hospital care
Model of palliative care in SA
Palliative care services in the out-of-hospital setting
Palliative care services in the hospital setting
Palliative care services in the residential aged care setting
Supporting end of life care providers
Improving access and equity
Enhancing quality
Implementation
Expanding the vision
Directions at a glance
Next steps
Timeframe for action
Appendix 1: Definition of terms
Appendix 2: End of life trajectories
Appendix 3: Expanding and reshaping palliative careservices
Appendix 4: Service delineation
Appendix 5: Equipping teams for change
Appendix 6: Supporting end of life care providers
Appendix 7: Improving access and equity
Appendix 8: Enhancing quality and measuring performance
Appendix 9: The workforce profile
Appendix 10: Glossary
Appendix 11: Acknowledgements
The Reference Group
The Steering Committee
The Development Team
References
For more information
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