Palliative Care Strategic Plan

Document Sample
Palliative Care Strategic Plan Powered By Docstoc
					Wentworth Palliative
  Care Services
  Strategic Plan
    2002-2005
Palliative Care: an Aboriginal artists impression.

This painting by David Whitton, Blue Mountains resident and Gamillaroi man is the story of a
spiritual journey. It describes his impression of the palliative care experience for Aboriginal
peoples.

In the painting, the Aboriginal person in the log (a traditional burial place for many Aboriginal
peoples) is in the process of moving from being well through to a place of hope where his
ancestors live. The head palliative care worker is on the left, trying to keep the patient alive,
the other palliative care workers are surrounding the log helping the person and ensuring
quality of life for his remaining time.

The man’s spiritual guide is floating close by, waiting to help him find his way to his place of
hope where his ancestors are waiting for him to join them. Knowing that the patient is going to
a place of hope to join his ancestors is healing for the patient and his family. It helps those
that are living, to know that everyone is together.




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                       2
Table of Contents
       Executive Summary                                                    5
                                     Section One
  1 Introduction
         Vision Statement                                                   7
         Definition of Palliative Care                                      8

  2 Planning context
        National                                                            9
        State                                                               9
        Local                                                              10
        Implications for planning in WAHS                                  11

  3 Profile of the Wentworth Area Health Service & its Population
        The Population                                                     13
        Aboriginal and Torres Strait Islander population                   14
        People from culturally and linguistically diverse communities      14
        Mortality                                                          14
        Implications for palliative care services in WAHS                  15

  4 Utilisation of palliative care services
          Historical in-patient activity                                   17
          Resident demand                                                  18
          Hospital supply                                                  18
          Other Hospital supply activity                                   19
                Aboriginal and Torres Strait Islander people               19
                Cultural and linguistically diverse communities            19
                Age groups                                                 19
                Diagnoses                                                  19
                Percentage of oncology and non-oncology diagnoses          20
                Referrals to in-patient facilities                         20
                Separation mode and length of stay prior to death          20
                Other data sources
               • Palliative Care Clinic activity                           21
               • Community Health activity                                 21
          Projected Activity to 2006
                In-patient bed requirements                                22
          Implications for WAHS                                            22

  5 Profile of Wentworth Area Palliative Services
        Role of the Service                                                25
        Model of Care                                                      25
        Who implements the model?                                          27
        How is the model implemented?                                      28
               Primary case managers                                       28
               Secondary consultative service                              28
               Inpatient services                                          28
               Nepean Cancer Care Centre                                   29
               After hours access to care and support                      29
               Referral process                                            30
               Consumer participation                                      30
        Management / reporting structures                                  30



Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005    3
  6 Key Palliative Care Service Issues
       6.1 Partnerships                                                             33
       6.2 Quality and Effectiveness                                                35
       6.3 Access                                                                   38
       6.4 Education and Awareness                                                  41

  7 Summary of Recommendations                                                      43

  8 Implementation and Evaluation                                                   45

  9 Resource Implications
        Palliative Care CNC Position                                                47
        Staff Specialist position                                                   48

                                     Section Two
 10 Action Plan                                                                     51

                                   Section Three
       Appendices
  1    Members of the Strategic Planning Reference Group                            62
  2    Issues identified by stakeholders                                            63
  3    Review of achievements against 1996-1999 Plan                                69
  4    Glossary of terms                                                            70



                                Tables and Diagrams

Tables
Number                                                                            Page
   1         Palliative Care Service Levels at WAHS’ Hospitals                      11
   2         Wentworth Population, 1986-2016                                        13
   3         Wentworth Palliative Care In-Patient Activity - 1995/96-2000/01        17
   4         WAHS Resident Demand by Hospital – 2000/01                             18
   5         WAHS Hospital Supply - 1995/96-2000/01                                 19
   6         Oncology & Non-Oncology Diagnoses                                      20
   7         Referrals from Emergency Departments to In-Patient Facilities          20
   8         Separation Mode for Palliative Care In-patients in WAHS Facilities     21




Diagrams
Number                                                                            Page
   1     Model of Care – Service Links                                               25
   2     Model of Care - Client Centred Approach                                     26
   3     Palliative Care Services Network Reporting Structure                        31




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             4
Executive Summary
The purpose of the Wentworth Palliative Care Strategic Plan 2002-2005 is to provide
strategic direction for the Wentworth Palliative Care Services Network (PCSN) for the
next three years. It was developed in close consultation with a Reference Group,
comprising consumers, volunteers, general practitioners, nursing and medical staff,
allied health staff, and representatives from community and government
organisations.

Three key documents have informed the development of the Plan. The National
Palliative Care Strategy (2000) emphasises the importance of providing best practice
palliative care, and identifies three key goals – awareness and understanding; quality
and effectiveness; and partnerships in care.

The NSW Health Palliative Care Framework (2001) identifies key elements of
palliative care service provision, including continuity of care, interdisciplinary care,
access for identified population groups, accreditation, 24 hour access to specialist
advice, formalised networks between service providers, and data collection systems.
The Framework recommends that Area Health Services develop three year Palliative
Care Plans, incorporating strategies to address gaps in these key elements of
service provision.

At a local level, the Wentworth Area Clinical Services Plan for 2001-2011 (2001)
recommends the development of strong links between WAHS’ hospitals, and across
in-patient and community settings, with the aim of improving continuity of care for
clients, and facilitating access to services.

From these documents, four key goals were identified for the provision of palliative
services in Wentworth over the next three years:

            •    The development of partnerships
            •    Improved access to services
            •    Quality service provision
            •    Increased awareness and education

During the consultation process, a number of service issues were identified under
these key goal areas. There is a need for improved partnerships between palliative
care services and primary service providers, in particular General Practitioners and
community-based services with links to identified population groups who are not
accessing palliative services, such as Aboriginal and Torres Strait Islander people.
There is also a need for improved access to services including 24 hour access to
support and advice, and strategies for clients in remote areas. Issues were also
identified in relation to the provision of consistent and equitable access to services
across the Area. The need for service agreements, protocols and pathways was
particularly noted.

The current model of palliative care service provision places the client at the centre of
care and is provided through a secondary consultation service (See diagrams 1&2,
pp 21&22). During the consultation process this model was affirmed as the model of
palliative care for Wentworth residents, with the recommendation that partnerships
be enhanced. This recommendation will be a priority, focusing on improved
partnerships with General Practitioners, and with services for Aboriginal and Torres
Strait Islander people, culturally and linguistically diverse communities, and with aged
care facilities. A summary of recommendations follows.


Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005               5
SUMMARY OF RECOMMENDATIONS:

1. PARTNERSHIPS IN CARE
     • Form client-centred partnerships with key service providers to improve the
        coordination of care, establishing processes such as case conferencing
        and management plans
     • Form partnerships with key groups and services to improve access for
        identified population groups, including Aboriginal and Torres Strait
        Islander (ATSI) people, and those from culturally and linguistically diverse
        communities (CALD)
     • Create an infrastructure to support partnerships, including the
        development of service agreements outlining philosophy of care, and
        roles and responsibilities of partners

2. QUALITY AND EFFECTIVENESS
     • Increase consumer participation in service delivery, planning and
        evaluation through consultation processes, and in conjunction with Area-
        wide initiatives
     • Provide flexible, integrated care by developing pathways and protocols for
        the provision of care across a range of settings
     • Ensure quality service provision by assessing the service against the
        Palliative Care Standards and implementing strategies to address gaps
     • Establish a Clinical Nurse Consultant position to improve consistency and
        quality of care across facilities, and a part-time Staff Specialist position to
        provide direct care at Springwood and Blue Mountains Hospitals
     • Improve data collection systems for palliative care by establishing a
        database which includes community-based activity

3. ACCESS
     • Review and provide 24 hour access to palliative care support and advice
     • Improve access for ATSI and CALD communities, aged care clients, and
       children and adolescents by developing partnerships with relevant peak
       organisations
     • Improve access to care for clients in remote areas through Telehealth
       initiatives

4. AWARENESS AND EDUCATION
     • Increase skills in service providers, particularly new providers, General
       Practitioners and WAHS staff, through a skills development program,
       which includes mentoring opportunities
     • Increase awareness about palliative care concepts and services for
       potential referrers within current education strategies
     • Raise community awareness about palliative care through the
       development of a media strategy, which includes participation in national
       and state palliative care events

An action plan has been developed (see pp 43-51) to progress these
recommendations, and to inform operational planning for the Palliative Care Service
Network. It is anticipated that operational plans will also incorporate ongoing
feedback from stakeholders about the implementation of these strategic
recommendations, to ensure that this Area Palliative Care Plan remains responsive
and relevant, within a changing health context.




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             6
SECTION ONE

1.       Introduction

The purpose of the Wentworth Area Palliative Care Strategic Plan is to provide
strategic direction for Wentworth Area Palliative Care Services Network for the next
three years and to ensure practice within this Area is aligned with recommended
better practice.

Currently, strategic direction is provided by Wentworth Area Health Service Palliative
Services Strategic Directions 1996-1999 and Vision and Philosophy 1996-2005. The
need to review this work coincides with the dissemination of the NSW Health
Palliative Care Framework and a request by NSW Health that all Area Health
Services develop a three year strategic plan to ensure implementation of key
elements of better practice palliative care.

This new plan presents a shared view for the provision of best practice palliative
care. Over thirty key stakeholders, including consumers, volunteers, general
practitioners, nursing and medical staff, allied health staff, and representatives from
community and government organisations, joined a Strategic Plan Reference Group
to identify issues and contribute to directions for the plan. This, and an analysis of
the local planning environment, informed the development of goals and strategies for
the next three years.

The Palliative Care Strategic Plan 2002-2005 affirms the strength of the earlier work
and continues to place Wentworth Area Palliative Care Services Network at the
forefront of similar services in NSW.




Vision for palliative care in 2005
The following vision was developed in consultation with the Strategic Plan Reference
Group and has been used to guide the development of the plan.



In 2005, in Wentworth, palliative care will be flexible, quality-based and client-
centred. This will be achieved by partnerships between the client, their family
and carers, specialist services, General Practitioners, community nurses and
other services. Access to care will be regardless of geography, culture or
socio-economic status.

Key features of the service will include:
   •  Consistent Best Practice across settings
   •  Referral processes and systems that ensure continuity of care
   •  24 hr access to specialist advice and support
   •  A commitment to research, teaching and professional development



Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             7
Definition of Palliative Care
Palliative care is care which aims to ameliorate the effects of progressive, advanced
disease, or terminal illness and improve the quality of life of the patient, his or her
partner, family and friends. Palliative care is generally provided to people of all ages
whose condition has progressed beyond the stage where curative treatment is
effective and cure is attainable, or to those who choose not to pursue curative
treatment.

Palliative care is both a concept of care, including a particular philosophy of care, and
specialised care, involving sets of expert practices. It is provided to people suffering
different kinds of diseases including cancer, various neurodegenerative diseases,
end-stage organ failure and certain infections.

Palliative care supports patient autonomy and optimises levels of function and quality
of life. It provides physical, psychological, emotional, social, spiritual and cultural
support to patients, their carers, their families and their friends. This support extends
into the bereavement phase after the patient’s death.

Palliative care is delivered by a specialist multidisciplinary team, which supports the
patient’s primary care providers. Other support services that assist with the
processes of daily living are also involved.

Palliative care services are provided in a range of settings including the person’s
home, residential aged care facilities, acute hospital facilities, and inpatient palliative
care facilities. It is responsive to the needs of these people to move freely between
settings. It is widely acknowledged that palliative care is best provided, where
possible, within or close to the person’s local environment and community.




Terminology
‘Client’ and ‘Patient’

Different parts of the health system use different terminology to describe the people to whom
they provide care and support. The term “patient” is preferred by doctors to describe the
particular relationship between doctors and the people they treat. Others also use the term
“patient”. For instance, NSW Health and Wentworth Area Health Service data collection
systems refer to “patients” when describing people who use the health system. Other terms
such as “consumers” are also used to describe the “patient” population. Community Health
and many other parts of the health system describe the people to whom they provide services
as “clients”.

In this document, the term ‘client’ will have the same meaning as the word ‘patient’.




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                   8
2.       Planning Context
Planning for the WAHS Palliative Care Strategic Plan 2002-2005 has been informed
by National, State and local priorities, and a number of key policy and planning
documents.

National
National Palliative Care Strategy (2000)
The intent of this policy is to ensure the development and provision of best practice
palliative care across Australia, so that people who are dying have access to an
appropriate service, at the right time, and in the right place. The Strategy has three
goals:
         1. Awareness and understanding:
         To improve community and professional awareness and understanding of,
         and professional commitment to, the role of palliative care practices in
         supporting the care needs of people who are dying and their families and
         carers.
         2. Quality and effectiveness:
         To support continuous improvement in the quality and effectiveness of all
         palliative care service delivery across Australia.
         3. Partnerships in care:
         To promote and support partnerships in the provision of care for people who
         are dying and their families, and the infrastructure for that care, to support
         delivery of high quality, effective palliative care across all settings.

State
The NSW Health Palliative Care Framework (2001) (hereafter referred to as the
Framework) provides direction for implementation of the National strategy within
NSW and aims to strengthen the growth of comprehensive palliative care across the
state. In particular, the Framework describes the key elements for effective palliative
care and defines Area Health Service responsibilities in the provision of palliative
care. These elements provided a basis for goal-setting and analysis within our
planning process and they include:
        • a continuum of care from the point of initial diagnosis
        • an inter-disciplinary team approach
        • bereavement support and follow-up
        • a central point for the provision of information
        • education for General Practitioners
        • education of medical and nursing clinicians
        • an enhanced role for volunteers
        • better access for identified population groups
        • effective data collection and information systems
        • implementation of accreditation systems to ensure appropriate standards
            are achieved
        • development of an Area Palliative Care Plan to ensure:
                    focus on specific needs of individuals
                    24 hr access to palliative care staff
                    partnerships between specialists and GP’s with palliative care
                    expertise
                    support for symptom control and pain management
                    formalised networks between care providers

Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             9
                      review of models of care
                      effective coordination and integration
                      linkages between services to increase access to quality clinical
                      consultation and referral


In addition to the above, other relevant NSW Health reform initiatives identified
through the NSW Government Action Plan are:

•   The emphasis on facilitating consumer and community participation in planning
    and health decisions within the NSW Health Department and Area Health
    Services.
•   Strengthening of the role of clinicians in providing clinical leadership, evidence-
    based practice and responsible clinical governance.
•   Evident need to harness information technology to enable better business
    management and patient care. Initiatives include the new Patient Administration
    System, telehealth projects, a community-based health services database,
    development of a unique patient identifier and in the long term, moving towards
    the introduction of an electronic health record.


Local
WAHS Area Clinical Services Plan 2001-2011 sets clinical service priorities for
acute care services in hospitals in WAHS.

The Area Clinical Services Plan (ACSP) focuses on hospital inpatient activity,
reviewing historical trends in service use and forecasting future demand and changes
to models of service delivery for Wentworth residents through to 2011. The ACSP
provides:
•      a clear role delineation for each hospital
•      agreed levels of service within each clinical area
•      priorities for clinical service development

This is within an environment of a consolidation of capital works developed over
recent years and a budget that approximates our share of funds according to the
Resource Distribution Formula, which calculates the share of budget for Area Health
Services on the basis of their population, weighted for need.

The ACSP highlights the importance of services being able to demonstrate strong
links between hospital facilities and across in-patient and community settings.

The ACSP included a recent audit of clinical service levels, describing current activity
undertaken. The Plan noted that services may or may not meet the requirements to
operate at this level under the “Guide to the Role Delineation of Health Services”.

The service levels for Palliative Care at the four hospitals across WAHS are
described in Table 1, indicating the level of specialist care provided, and what level
the Area Board has approved. (In general, the higher the level, the more complex the
care, or patient’s illness and the greater the involvement of specialist staff and
support services).




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             10
Table 1: Palliative Care Service Levels at WAHS Hospitals

                          Nepean               Blue Mtns              Hawkesbury       Springwood

    Palliative Care       5/4                  3/3                    3/3              3/1
         Service level currently provided / Board approved level
         Current operating level as at March 2001
         Levels described in NSW Health “Guide to the Role Delineation of Health Services” Draft 1999

The evolution of a more specialised role in palliative care at Springwood is noted
from the audit. One of the recommendations in the ACSP is that the role of
Springwood Hospital includes a focus on palliative care.

WAHS Aboriginal Health Business Plan 2001-2002
This plan has identified that a target for 2001/2002 is the development and
distribution of Palliative Care resources for the Aboriginal communities of WAHS.


Implications for planning in WAHS
•   4 key goals were identified from the national and state documents to focus the
    analysis of Palliative Care Services in Wentworth Area Health Service:
       - partnerships
       - access
       - quality and effectiveness
       - awareness and education

•   It will be important for Palliative Care Services to ensure strong links between
    hospital facilities, and across in-patient and community settings.

•   There is the potential for Springwood Hospital to take a greater role in supporting
    palliative care within WAHS.




Wentworth Area Health Service    Palliative Care Strategic Plan 2002-2005                          11
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   12
3.        Profile of the Wentworth                                                       Area             Health
          Service & its Population
Wentworth Area Health Service comprises three Local Government Areas - Penrith,
Hawkesbury and Blue Mountains. The Area is geographically large by metropolitan
standards (4,617 sq km). The Australian Bureau of Statistics (ABS) has classified
some segments as rural and others as urban.


The Population
The estimated resident population for Wentworth in 2001 was 315,947 (4.8% of the
total NSW population). Of these 56% (176,081) live in Penrith, 24% (76,913) live in
the Blue Mountains and 20% (62,953) live in the Hawkesbury Local Government
Area1. The population is projected to increase to 331,480 by 2006 (4.9% of the total
NSW population). Of these 57% (189,390) are in Penrith, 23% (77,170) in the Blue
Mountains and 20% (64,920) in the Hawkesbury Local Government Area2.

Table 2: Wentworth Population, 1986-2016

                           1986           1991       1996                  2006            2011       2016
                                          Historical                                      Projections
    Penrith                139,340         154,889         167,930         189,390         199,280         208,950
    Hawkesbury             44,952          52,921          59,140          64,920          66,160          67,530
    Blue Mtns              66,006          72,367          74,870          77,170          77,690          78,340
    WAHS                   250,298         280,177         301,940         331,480         343,130         354,820
    NSW                    5,531,526       5,898,731       6,185,987       6,732,890       6,967,520       7,203,730
    WAHS         Av.                       2.3%            1.5%            0.9%            0.7%            0.7%
    Growth Rate P.A.
    NSW Av. Growth                         1.3%            1.6%            0.9%            0.7%            0.7%
    Rate P.A.
          Source: Historical: HOIST, ABS Estimated Resident Population, extracted 6/11/2000
          Projections: Population Projections for NSW Area Health Services, NSW Health (Essential Equity), March 2000.


The rate of increase of the Area's estimated resident population has been high over
the past 20 years. This has slowed down in the past five years and is predicted to
continue slowing and become comparable to the state average.

In 2001, the proportion of Wentworth residents aged 65 years and over (8.3%) was
much lower than the NSW average (12.7 %). In Penrith the proportion 65 years and
over is 6.7 %, in Hawkesbury 7.8%, and the Blue Mountains 12.5 %, which is similar
to the NSW average3.

By 2006, the number of people aged 65+ is estimated to be 30,840, or 9.3% of the
total estimated resident population of 331,480. This represents an increase of
approximately 0.9% over five years or 0.18% per annum. By 2011, this age group is



1
  HOIST, ABS Estimated Resident Population, extracted 27/3/2002
2
  Population Projections for NSW Area Health Services, Essential Equity, March 2000
3
  HOIST, Ibid.

Wentworth Area Health Service          Palliative Care Strategic Plan 2002-2005                                          13
expected to make up 11% of the estimated resident population of 343,130,
representing a growth from 2006 of 1.7% or 0.28% per annum4.

Aboriginal and Torres Strait Islander People
The Gundungurra and the Darug peoples are the traditional owners of the land within
which the Wentworth Health Area is located. In the 1996 ABS Census 4,235 people5
(1.5 %) Wentworth residents identified themselves as Aboriginal or Torres Strait
Islander (ATSI). However, the local Aboriginal community estimates that it is more
likely that approximately 10,000 Aboriginal people live in the Wentworth Health area.
The life expectancy at birth of ATSI people is 15 to 20 years less than for other
people.


People from culturally and linguistically diverse
communities
At the 1996 ABS Census, 29,289 residents (10.1%)6 of Wentworth Area were born in
countries where the main language is not English and 27,491 reported using a
language other than English at home. This placed Wentworth with the lowest rate
among metropolitan areas (average over 20 %) yet with much higher rates than rural
areas (5%). The proportions of people in each local government area who stated
they used a language other than English were Penrith 13.1%, Hawkesbury 5.3% and
Blue Mountains 4.4%.

In 1996, the top languages spoken were Tagalog, Arabic, Italian, Maltese, Greek,
Croatian and Spanish. The top countries of birth are Philippines, Germany, Malta,
Netherlands, India, Italy and Sri Lanka. There has been an increasing diversification
of communities in the Wentworth Area, with the number of communities with over
100 people steadily increasing from 30 in 1986, to 40 in 1991, and 53 in 1996.


Mortality
The Wentworth Local Government Areas have similar standardised death rates to
NSW. Over the 15 years, 1980 to 1995, the standardised death rate has remained
similar although there have been decreases in deaths resulting from some specific
conditions.

Of the 1,472 deaths in Wentworth in 19987:
    • 29.4% (406 deaths) were from cancer
    • 22.5% (310 deaths) were from coronary heart disease
    • 10.4% (144 deaths) were from respiratory disease
    • 9.9% (137 deaths) were from cerebrovascular disease




4
    Population Projections for NSW Area Health Services, Essential Equity, March 2000
5
  ABS, Basic Community Profile, 1996
6
  Source for data in this section: ABS, 1996, Etheon 96, Census Applications
7
  ABS Catalogues 1304.1 (1998) and 3235.1(1999), from HOIST 2000, cited in Annual Report, Wentworth Area
     Health Service, 1999


Wentworth Area Health Service         Palliative Care Strategic Plan 2002-2005                      14
Implications for Palliative Care Services in WAHS

    •    WAHS has a younger population, with a slowing growth rate. The 65+ age
         group is generally seen to be the more “at risk” group for requiring palliative
         care services.
    •    WAHS has a significant Aboriginal population, and a diverse number of CALD
         communities. Both these groups are underrepresented in inpatient separation
         activity data in comparison to their proportion of the total WAHS population.
         The provision of culturally sensitive palliative care services is therefore
         important.
    •    Non-cancer related deaths account for over 70% of all deaths. The service
         expects to increase service provision to clients with non-cancer related
         diagnoses.




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             15
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   16
4. Utilisation of Palliative Care Services
Historical In-Patient Activity
A summary of non-acute inpatient activity follows, reviewing historical trends in
palliative care service use from 1995/96 to 2000/01 (Source Flowinfo v4.2Q4). It is
important to note that the data analysed below represents in-patient activity, not
community-based activity. It describes separations (seps) or episodes of care, not
patient numbers. The data only describes episodes where the Service Related Group
(SRG) or Service Category were described as “Palliative Care”, and this does not
capture in-patient Palliative Care consultations, where the SRG / Service Category
on discharge is not recorded as “Palliative”. This data therefore provides useful
information about in-patient service provision to identified palliative care clients, but
does not capture consultations or community-based care, which make up a
significant proportion of the services provided.

It is also important to note that the activity relates to people aged 15 years and over.
Palliative Care in-patient activity for paediatric clients is difficult to capture, as the
Service Category for all paediatric activity is coded as “Acute”, even if non-acute
services such as palliative care have been the main reason for admission.

Activity is looked at in two ways, demand and supply:
    • Demand is focussed on our resident activity i.e. what Wentworth residents
        use, both within Wentworth Area Health Service (locals) and outside
        Wentworth AHS (outflows).
    • Supply is focussed on our hospital activity i.e. what Wentworth AHS hospitals
        provide, both for Wentworth residents (locals) and for incoming residents from
        other Areas (inflows).

The table below summarises this activity.

Table 3: Trends in Wentworth Palliative Care In-Patient Activity,
by Separations 1995/96 – 2000/01
                                1995/96 1996/97 1997/98 1998/99 1999/00 2000/01
Outflow                              44      17      24      22      26      32
Inflow                               15      23      20      41      56      45
Locals                             157     232     430     338      515     499
Hospital Supply                    172     255     450      379     571     544
Resident Demand                    201     249     454     360     541     531
Private Hospital Demand               0       0       0       0       0       0
Flowinfo v4.2Q4 - Non-acute activity, 15yrs+, SRG- Palliative Care
Outflow = WAHS residents treated in other Area Health Service hospitals
Inflow = residents of other Area Health Services treated in WAHS hospitals
Locals = residents of Wentworth treated locally in WAHS hospitals
Hospital Supply = locals plus inflows from other Areas treated in WAHS hospitals
Resident Demand = locals plus outflows to public hospitals in other Area Health Services
Private Hospital Demand = residents of Wentworth treated in private hospitals


Activity data for 2000/01 indicates that WAHS is 94% self-sufficient in the provision of
palliative care services for its residents. Very few WAHS residents seek palliative
care services outside the Area Health Service. Some residents of other Area Health
Services access WAHS in-patient facilities for palliative care, but this number is small
and is primarily made up of residents from the adjoining LGA of Blacktown,

Wentworth Area Health Service        Palliative Care Strategic Plan 2002-2005              17
representing natural border flows. Also of note is that there has been an increase in
self-sufficiency compared to 1995/96.

The activity levels have increased from 1995/96 to 2000/01. However, it is likely that
this increase coincides with the establishment of the Service and the building of the
Nepean Cancer Care Centre in September 1998, and represents an increased
capacity to provide services, rather than an increase in need.



Resident demand
As noted above, WAHS achieved 94% self-sufficiency in 2000/01, providing 499 out
of 531 palliative care in-patient separations locally. The small number of outflows is
primarily to Westmead (26 out of 32 separations were provided at Westmead). The
remaining 6 separations were provided by various facilities, primarily hospices.

Table 4: WAHS Resident Demand by Hospital (Separations) – 2000/01
                                                                            Number of
Area Health Service (AHS)                 Facility                         Separations
Wentworth AHS                             Blue Mountains Hospital                   65
                                          Gov. Phillip Nursing Home                 23
                                          Hawkesbury (Public Patients)              55
                                          Nepean                                   295
                                          Springwood                                61
Wentworth    Total                                                                 499
Western Sydney AHS                        Mount Druitt                               2
                                          St. Josephs Auburn                         1
                                          Westmead                                  26
Western Sydney Total                                                                29
Northern Sydney AHS                       Greenwich                                  2
South Western Sydney AHS                  Braeside                                   1
Total Demand Activity                                                              531

A very small number of WAHS residents appear to be choosing to die in a hospice
setting, noting that this may well be a factor of distance. However, as the total
number of in-patient palliative care deaths of WAHS residents was 211 for 2000/01,
the small numbers of deaths occurring in hospices does not seem to indicate that
investment in “hospice-beds” in Wentworth is required, although future opportunities
may exist with Springwood Hospital’s purpose-built beds.

There is no public patient palliative care activity in private hospitals for residents of
Wentworth.

Hospital supply
WAHS hospitals provide palliative care primarily to local residents, with a small
number of people in-flowing from other Area Health Services. Inflows mainly
represent natural border flows, with 27 out of 45 separations in 2000/01 from the
Blacktown LGA.

The following table presents information on palliative care separations for WAHS
hospitals. For 2000/01, the average length of stay at the various facilities throughout
WAHS reflects the role of each facility as an acute, sub-acute or aged care facility. Of
note is the longer average length of stay at Hawkesbury. Difficulty accessing nursing

Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                 18
home beds may account for some of this, but further exploration may identify if there
are community access issues contributing to an increased length of stay.

Table 5: WAHS Hospitals Supply - Palliative Care Separations and Bed-Days,
1995/96-2000/01, plus Average Length of Stay (ALOS - days) for 2000/01

                                                                                       ALOS
Facility                        1995/96 1996/97 1997/98        1998/99 1999/00 2000/01 00/01
Blue Mountains   Seps               57       56         55          54         57     66   10
                 Bed-days          386      445        617         651        479    671
Bodington        Seps                         1
                 Bed-days                    12
Governor Phillip Seps               21       29          19          14        26     25   42
Nursing Home
                  Bed-days         240     1438       1080         929       1601   1055
Hawkesbury        Seps               5                                         67     60   16
(Public Patients) Bed-days          70                                        898    959
Nepean            Seps              63      150        342         266        368    331    8
                  Bed-days         508     1962       3673        2786       3466   2802
Queen Victoria Seps                  2        3          1           1
                  Bed-days          41      369          2         365
Springwood        Seps              24       16         33          44         53     62   12
                  Bed-days         269      235        301         482        466    772
Total Separations                  172      255        450         379        571    544
Total Bed-days                    1514     4461       5673        5213       6910   6259
NB – data not available for 1996-1999 for Hawkesbury Hospital (public patients); Queen Victoria &
Bodington Hospitals are no longer operating as at 2001.



Other Hospital Supply Activity Data
•   Aboriginal and Torres Strait Islanders
    The ATSI population represented only 0.18% of activity in 2000/01, with one
    separation, despite representing 1.5% of the WAHS resident population.

•   People from Culturally and Linguistically Diverse Communities
    At 1996, 10.1% of WAHS’ population included people from CALD communities,
    but activity over the last six years indicates a much smaller percentage utilising
    palliative services, with 1.7% in 2000/01. Of note is the diversity of language
    groups, with approximately 20 language groups represented over this six year
    period.

•   Age Groups
    In 2000/01, 63% of palliative activity (343 out of 544 separations) was provided to
    people aged 65+. At 2001, this group represents 8.3% of WAHS’ estimated
    resident population of 315,947.

•   Diagnoses
    The top 20 Diagnostic Related Groupings (DRG’s) for Palliative Care activity in
    WAHS Hospitals are all malignancy-related, with respiratory malignancies
    accounting for 58 out of 332 separations (17%). These 20 DRG’s represent 59%
    of activity occurring in 2000/01.




Wentworth Area Health Service     Palliative Care Strategic Plan 2002-2005                      19
• Percentage of Oncology and Non-Oncology Diagnoses
The table below describes the percentage of activity for DRG’s which relate to
oncology diagnoses; non-oncology diagnoses; and generalised symptoms and
procedures not specific to a diagnosis. (These diagnostic groups are coded on
discharge, and represent the main reason for in-patient admission).

Table 6: Oncology and non-Oncology Diagnoses

   Diagnoses (DRG’s)                1999-00          2000-01
   Oncology DRG’s                   70%              64%
   Non-Oncology DRG’s               20%              22%
   Symptoms/Procedures              10%              14%
   Total                            100%             100%

This data suggests that approximately 20% of Palliative Care activity relates to
people with a range of non-oncology diagnoses. The Palliative Care Framework
reports that across the state this group currently represents 10-15% of palliative
activity. The anticipated growth in demand from this group may not be as significant
in WAHS, as it appears there may already be good access to services for people with
non-oncology diagnoses.

Access to services for people with HIV/AIDS and dementia was explored, and it was
noted that there is very little palliative activity for both groups (one separation each in
00/01). The lack of activity for people with HIV/AIDS may represent a decreased
need for palliative services due to medical treatment advances and improved health
outcomes for this group.

• Referrals to In-Patient Facilities
The following table describes by Hospital the source of referral for admission by
separations and the percentage as admissions from the Emergency Department for
2000/01

Table 7: Referrals from Emergency Departments to In-Patient Facilities

                                                                           % as Admissions
Hospital                 Source of Referral           Seps                 from Emergency
Blue Mountains           Emergency Department           24
                         Other                          42                     36.4%
Blue Mountains       Total Seps                         66
Hawkesbury               Emergency Department           49
(Public Patients)        Other                          11                     81.7%
Hawkesbury           Total Seps                         60
Nepean                   Emergency Department          141
                         Other                         190                     42.6%
Nepean               Total Seps                        331
* Springwood Hospital does not have an Emergency Department

The Palliative Care Framework highlights that across the state people with chronic
and complex conditions (including Palliative Care clients) represent 30% of
admissions through Emergency Departments. In WAHS in 2000/01, an average of
39.5% of admissions were referred via Emergency Department (215 out of 544
separations), indicating the need for improved coordination of care and appropriate
access for palliative care clients.




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                     20
• Separation Mode (Discharge) and Length of Stay Prior to Death
In 2000/01, 45% of separations from hospital were discharged (248 out of 544); and
39% died (211 out of 544). The remaining separations relate to transfers to other
hospitals or nursing homes, or “type change”.
The following table describes in 2000/01 the number of deaths per facility, the
percentage of those that died within 48 hours of admission, the average length of
stay prior to death, and the longest length of stay.

Table 8: Separation Mode for Palliative Care In-patients in WAHS Facilities -
2000/01

          Facility               No.           % Deaths           Average Length      Longest
                                Deaths      within 48 hours           of Stay      Length of Stay
                                             of Admission           (Bed-days)      (Bed-days)
 Nepean Hospital                  95              22%                     8             34
 Blue Mountains                   36              22%                     9             34
 Springwood                       33              39%                    10             34
 Hawkesbury                       24              8%                     17             61
 Gov Phillip N’Home               23              9%                     43             215
 Total Number of
 Deaths                          211

The average length of stay (LOS) prior to death reflects to some extent the role of
each facility, with Governor Phillip Nursing Home having the longest average LOS.
Average LOS, and longest LOS across the Hospitals was consistent, with the
exception of Hawkesbury Hospital, which may require further exploration to identify
issues relating to access to community support. Also of note was that 10 out of 95
deaths (11%) at Nepean Hospital had lengths of stay of more than 21 days, which
may represent an issue for an acute facility.

•   Other Data Sources

Palliative Care Clinic Activity
Information from the Nepean Cancer Care Centre database for palliative care
describes the number of referrals to the medical service from 1995-1999. As the
information recorded is not complete, it is not possible to describe definitive numbers,
but the data does support the trends identified above in terms of increased activity
during this period.

Community Health Activity
There were 6,134 outpatient and 742 inpatient occasions of service for palliative care
for January to December 2001. This includes activity provided by Palliative Care
specific staff and other generalist staff such as Community Nurses and Allied Health
staff. Information from a new local database indicates that for 2000/2001, there were
466 palliative care registrations, and 328 deaths (of clients known to the community
team, who may have died at home or in hospital). From January 2001 to June 2001,
there were 190 (89%) registrations with an oncology diagnosis, and 24 (11%) with
non-malignancies. There were no clients with HIV/AIDS during this period. It is noted
that there appears to be a smaller proportion of people in the community with non-
oncology diagnoses accessing palliative care services.

It is anticipated that the introduction of CHIME, a community health dataset, will
provide more detailed information regarding the provision of community-based
palliative care services.



Wentworth Area Health Service    Palliative Care Strategic Plan 2002-2005                       21
Projected Activity to 2006
In-Patient Bed Requirements for Wentworth Area Health Service Hospitals
(Projected Supply)
There are no currently accepted planning methodologies for estimating the growth in
non-acute services such as Palliative Care. NSW Health’s Activity Projections Plus
Interventions (APPI) Program estimates future activity and bed requirements for
acute activity only. Population-based projections have therefore been used to
estimate future bed requirements.

The Australian National Strategy for Planning Palliative Care Services 1998-2003
has accepted a UK standard of 40-60 beds/million residents. This standard includes
long-term palliative care beds, i.e. up to 3 months care.

WAHS has notionally allocated beds in particular wards where staff, trained in
palliative care, are available to provide palliative care if needed. It needs to be noted
these are not designated palliative care beds. These beds are available at:

         Nepean                   10
         Hawkesbury               3
         Blue Mountains           2
         Springwood               3
         Total:                   18 beds per current population of 315,947 (at 2001)

Using the above standard and projected population figures, WAHS would require the
following beds:
In 2006:       13.2 – 19.9 beds for a projected population of 331,480
In 2011:       13.7 – 20.6 beds for a projected population of 343,130

Given that current bed numbers approximate the estimated need to 2006, no
additional beds are required to 2011.



Implications for WAHS
    •    There will be an increase in demand for Palliative Services due to the ageing
         of the population, but the number of people in WAHS aged 65+ is not
         expected to grow as rapidly as the average growth rate for NSW.

    •    There are a significant proportion of people with non-oncology diagnoses
         receiving palliative care in WAHS hospitals, with this group representing
         approximately 20% of in-patient activity compared to the state average of 10-
         15%. The Palliative Care Framework highlighted the need for improved
         access to services for this group, and anticipated an increase in workload, but
         this increase may not be significant in WAHS given current in-patient activity
         levels. Community-based activity may need to be monitored in relation to this.

    •    A number of population groups within WAHS are under-represented in the
         Palliative Care service, indicating possible access issues. These groups
         include Aboriginal and Torres Strait Islanders, and people from culturally and
         linguistically diverse backgrounds.

    •    There are a significant proportion of palliative clients admitted to hospital via
         Emergency Department. Alternative pathways of access and better
         coordination of care are indicated.

Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                22
    •    It is recognised in the Palliative Care Framework that palliative care data is
         often poorly captured, especially in the community. Most of the data analysis
         described in this section reflects this, focussing on in-patient activity, which
         does not fully represent the provision of palliative services in WAHS. The
         introduction of CHIME is seen to be an important step towards improving the
         collection of community-based palliative care data. It is therefore
         recommended that the introduction of improved data collection systems such
         as CHIME be given priority at WAHS so that more comprehensive data
         analysis can inform the planning of future service provision.




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005               23
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   24
5. Profile                      of         Wentworth                              Area             Palliative
Services
A key feature of Palliative Care in Wentworth is that it is a network of services and
people grouped together to provide comprehensive palliative care. The services are
parts of Wentworth Health Area Service, other government and non-government
services, community groups and volunteer services. A key component of the WAHS
model (Diagrams 1 & 2) is a client-centred, highly interactive and collaborative
approach with General Practitioners as the key medical case managers and
Community Nurses, or aged care facility Registered Nurses, as the key nursing case
managers. For the majority of clients most of their care is provided in their home, or
the residential or aged care facility where they live.

Role of the Service
The role of palliative services is to provide physical, emotional and social, spiritual
and cultural support for clients and their carers, families and friends as they face a
life threatening illness. The service is designed to support patient autonomy and
above all, to optimise quality of life and level of function by recognising the
uniqueness of the individual. It strives to develop a service that is both acceptable
and accessible. The role of the service goes beyond just terminal care. Referral to
the service is encouraged at the time the decision is made that disease-modifying
intervention is of limited benefit.


Model of Care
A wide range of services within Wentworth Area Health Service provides palliative
care, therefore a networked approach has been adopted, resulting in the Area
Palliative Care Services Network. (See Diagram 1) The roles and responsibilities of
the various Network partners will become more formalised with the ongoing
development of Service Agreements.

Diagram 1: Model of Care – Service links


                                     Community Services                     Nepean
                                                                               Cancer
                          DOH                                                      Care
                                                                                       Centre
                   DOCS
                                                  Case workers/
             DVA                                  carers                                        Medical
                                                                      Inpatient                 Imaging
                                     Community                        services
         NGO’s
                                     Nurse
                                                       Client
                                                       Carer
           Meals on                  Volunteers        Family        General                      Pain
           Wheels                                                 Practitioner                    Services


                 Home Care




Wentworth Area Health Service        Palliative Care Strategic Plan 2002-2005                                25
The model provides a strong foundation for the PCSN to act on recommendations
within the ACSP for stronger links between hospital facilities and across inpatient and
community settings.

The client, and their partners, carers or family and friends, are at the centre of the
model. They are the key decision-makers in their process of care. Diagram 2
explains more fully the model’s client-centred approach and how care is coordinated
through the nursing and general practitioner case managers working in close co-
operation with the whole team.

A ‘secondary consultative service’, provided by the Area Palliative Services team is a
cornerstone of the model. Medical staff, nurses, bereavement counsellors, allied
health and the volunteer coordinators all have particular palliative care expertise.
They provide expert advice and support to case managers and others, to optimise
quality of life, ensure symptom control and pain management, and provide choices
for palliative care clients.

Diagram 2: Model of client-centre care.


                               Client-Centred Model of Care

                         Community Services
     Homecare, Respite Services, Dept of Housing, DOCS,
     Community Transport, Meals on Wheels, DVA, Community
     Options, Centrelink, Home Modifications
     Carer Support Services
     ACAT: WAHS
     Day Centres: WAHS             COMMUNITY
                                                                         GENERAL
       Chronic and                      NURSE
                                                                      PRACTITIONER
      Complex Care                  Primary Nursing
                                                                      Primary Medical
      Allied Health Services         Case Manager
          Community
                                                                       Case Manager
        Palliative Care
      Consultancy Services
            Medical Officers                  CLIENT
       Clinical Nurse Consultants              Home                            FAMILY
       Clinical Nurse Specialists
         Bereavement Services                 Hospital                          and/or
                                                                                         WIDER
        Live In Support Person             Aged Care or                        CARERS    COMM-
               Volunteers
                                         Residential Facility                            UNITY


    In-Patient Beds available for
           Palliative Care
             Nepean Hospital                 Nepean Cancer Care Centre
           Springwood Hospital                       Palliative Medicine
      Blue Mountains District Hospital               Medical Oncology
           Hawkesbury Hospital                       Radiation Oncology
      Governor Phillip Nursing Home                     Allied Health
                                                      Psycho-Oncology
                                                          Pharmacy
                                                          Volunteers




The model is based on the notion of no walls between hospital and community where
staff follow clients freely between both spheres of care. The service works closely

Wentworth Area Health Service       Palliative Care Strategic Plan 2002-2005                     26
with other providers who may be offering disease-modifying treatment such as
chemotherapy or radiotherapy. A multidisciplinary team approach to care
acknowledges that no one person or professional group can provide all the
necessary care to address all issues.

In summary, the model has two dimensions: firstly, the principle of palliative care as
sets of expert practices, disseminated and supported through a secondary
consultation service and secondly, the principle of palliative care as a philosophy of
care.



Who implements the model?
Medical service
The medical component of Wentworth Area Palliative Services, including the Area
Director, is located within the Nepean Cancer Care Centre. The medical service
comprises a director/staff specialist, a career medical officer (CMO), and an
advanced trainee registrar. They provide direct medical care and a consultative
service for clients in Nepean and Hawkesbury Hospitals and a consultative service
only for clients in all other WAHS hospitals and institutions within the Wentworth
Area. They provide an outpatient clinic service at the Nepean Cancer Care Centre
and a domiciliary consultative service to clients who are unable to attend the clinic.

Nursing
The nursing component is based at three community health centres – one in each
Local Government Area. Community Nurses provide primary nursing care and
nursing case management. Community nurses are able to provide home visits 7
days/week. Where a client is a resident of an aged care facility then the registered
nurse supervising their care is the nursing case manager. Two Clinical Nurse
Consultants (CNCs) and five Clinical Nurse Specialists (CNS’s) provide education
and clinical nursing consultation to nurses and support to general practitioners
working in the community, in hospitals and in aged care facilities. They are also
involved in research and benchmarking projects.

Nursing resources are distributed across the Area in the following manner:
Penrith:             1 CNC           2 CNS
Hawkesbury:                          1 CNS
Blue Mountains:      1CNC            2 CNS

Bereavement Support
This is a ‘secondary consultative service’ to community nurses and General
Practitioners. It provides information to the community, and grief and loss education
for nurses, clients, aged care facilities, volunteers and the community. Supervision
and reflective practice are provided to individual health workers and groups of nurses
and volunteers. Referrals come from the Palliative Service Team, for emotional
support and counselling before and after death. All next of kin are provided with
bereavement follow-up. This service works through partnerships, and linkages
throughout the community, government and non-government organisations. After
hours bereavement support is provided by generic services.

Live In Support
The Live In Support person is available to provide support to families and carers,
beyond what can be expected of volunteers. They are able to live-in or attend on a
daily basis for up to two weeks and provide assistance with personal care, support,


Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005           27
and respite for carers. The position is funded by WAHS and periodically reviewed.
This position is to be reviewed in 2002.

Volunteers
There are approximately 35 volunteers working in the Penrith and Hawkesbury areas
providing a diverse range of support, which includes respite for carers, transport,
companionship, and social support. In addition, there are about 30 volunteers
working with the Blue Mountains Palliative Support Service, a WAHS funded and
Community Neighbourhood auspiced program. There are strong links between these
two services.

Both the Penrith and Blue Mountains services have full-time Coordinators. They are
responsible for coordination, development of volunteering policies, and the selection,
education and supervision of volunteers.

There are strong links between the Blue Mountains Volunteer Service and Nursing
Service, and better links are currently being established for Penrith based services.

The Community Nurse is the main source of referral to the Volunteer Service and the
Coordinator then meets with clients prior to matching them with a volunteer. At this
time, the numbers of clients being referred to the service and the service’s ability to
meet demand is fairly even.

Allied Health
Palliative Care clients have access to both in-patient and community based allied
health support, including dieticians, social workers, physiotherapists and
occupational therapists, through existing mainstream positions.



How is the model implemented?
Primary Case Managers
A key component of this model is case managers. They are responsible for
coordinating and managing the direct care of their clients, with the support of
specialist palliative care staff. General Practitioners are supported as the key medical
case managers and Community Nurses, or aged care facility Registered Nurses, as
the key nursing case managers. Primary case managers ensure limited palliative
care resources are used to maximum advantage to deliver quality palliative care
across the Area.

‘Secondary consultative service’
This is the provision of palliative care expert advice and support by Medical
Specialists, Clinical Nurse Consultants, Clinical Nurse Specialists, Bereavement
Counsellors, and the Volunteer Coordinators, to case managers and other in-patient
and community based health professionals to support the delivery of high quality
care. It also provides access to speciality resources that case managers may require
to support effective and safe practise. General Practitioners have access to
Specialist advice and support by phone on a 24 hour basis.

Inpatient services
Inpatient services are provided for symptom control, respite and terminal care.
Notionally designated beds are available at:

         Nepean Hospital                              10 beds
         Hawkesbury Hospital                          3 beds

Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             28
         Springwood Hospital                          3 beds
         Blue Mountains Hospital                      2 beds

These beds are located to meet the needs of the population across the area. There is
no specific hospice facility. In addition, five palliative care beds are available at
Governor Phillip Nursing Home, Penrith.

At Nepean Hospital, the palliative care beds are located within the oncology ward
and usually palliative care clients are admitted to these, but they may be in generalist
wards depending on bed availability. This is often problematic as bed pressure is
high with occupancy rates for Nepean currently running at over 95%. At Blue
Mountains, Hawkesbury and Springwood Hospitals, patients are in palliative beds
within generalist wards. The level of specialisation of staff is therefore variable.

Nursing consultancy is provided to inpatient nursing staff working with any palliative
care clients by the community-based Palliative Care CNC/CNS on a twice weekly
basis at Springwood, Blue Mountains and Hawkesbury Hospitals and once a week at
Nepean Hospital as a minimum.

A staff specialist, CMO and registrar provide medical consultancy to all WAHS
hospitals. Patients may be admitted to palliative care beds under the care of a
Palliative Care Specialist at Nepean and Hawkesbury Hospitals but workforce limits
preclude patients being admitted under a Specialist at Springwood and Blue
Mountains Hospitals.

General Practitioners with admitting rights to any of these facilities may admit their
patients into the palliative care beds in consultation with Wentworth Area Palliative
Services medical staff.

Nepean Cancer Care Centre (NCCC)
The Area Director, Palliative Care, other Palliative Care Medical staff, the Volunteer
Coordinator and a part time Research Assistant are located within the Cancer Care
Centre. NCCC is a purpose built, comprehensive cancer care centre located on the
Nepean Hospital campus. It provides palliative medicine, radiation oncology, medical
oncology, haematology, psycho-oncology, and allied health services. Non-oncology
related palliative care clients accessing specialists at the NCCC requiring allied
health services are usually referred to services in the hospital or community.

After hours access to care and support
General Practitioners provide the primary medical care of clients in the community.
Clients requiring after hours assistance are encouraged in the first instance to
contact their General Practitioner. If unavailable, clients can either phone the
Palliative Care After Hours Service number until 11pm for client advice or if it is more
urgent, present at an Emergency Department. The After Hours Telephone Service is
rotated on a roster basis through the WAHS Hospital wards with notionally
designated palliative care beds. Registered nurses who may be expected to provide
the service attend a telephone counselling course.

During business hours clients are requested to contact their community nurse who
can refer to the Palliative Care Clinical Nurse Specialist or Clinical Nurse Consultant
for speciality advice or support (8.30am-5pm).

General practitioners have 24 hour access to the Palliative Care Medical or Nursing
Services by mobile phone or pager. Clients can also access ‘generalist’ crisis
counselling lines.


Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             29
Referral process
All medical referrals must be made by a medical practitioner within community,
inpatient or aged care settings.

Community referrals occur through a centralised intake system, and anyone can
make a referral, with the consent of the client. This means general practitioners,
specialists, hospital staff, private nursing services, other services, the client, their
families and their friends can refer. The community nurse case manager and
Palliative Services receive the referral at the same time. The community nurse and
the Palliative Care CNS / CNC arrange a joint visit to the client on or near the first
home visit. Follow-up visits occur through negotiation between both parties.

Case conferencing occurs with community nurses, Palliative Care services, general
practitioners, inpatient medical staff and other health professionals as arranged
within community health, inpatient facilities and aged care facilities.

A number of referrals for in-patient care also come through Emergency Departments.
At Hawkesbury Hospital the files of Palliative clients are ‘tagged’ so that clients who
are known to the service can be ‘fast-tracked’ through Emergency to the ward.

Discussion about referrals occurs as part of the weekly team meeting held at Nepean
Hospital, where all active palliative care clients and recent deaths are discussed. The
ability of case managers, including general practitioners, to attend the team meeting
and discuss referrals is limited by time and geography.

Consumer participation
Clients are consistently involved in decision-making about their own care. Patient
satisfaction surveys are routinely carried out. Although there are no formal
mechanisms for consumer involvement in decision-making about service
development, delivery or evaluation, consumers are invited to participate in
significant planning events such as the development of this strategic plan.




Management / reporting structures
There are separate lines of accountability and management for the various WAHS
services that comprise Wentworth Area Palliative Services (see Diagram 3, p31).
Palliative Care specific positions sit in four of these (the positions are highlighted in
the diagram with shading). This arrangement frees the Area Director, Palliative Care
from the administrative load of direct staff management and allows a focus on service
delivery. It also ensures that staff are located where the majority of their workload
and partnerships are located – in the community.

Service agreements are used to formalise the arrangements for the provision of
palliative care by the various services across the area. A Service Agreement is in
place with Catholic Health Care for services in the Hawkesbury LGA. A revision of a
Service Agreement between the Wentworth Area Palliative Services and Chronic and
Complex Care, Extended Care Team is in progress.




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005              30
    Diagram 3: Palliative Care Services Network Reporting Structure


                                                                       Wentworth Area Health Service Board
                                                                                                                                                            CEO
                                                                                    Chief Executive                                                 Hawkesbury Hospital
                                                                                        Officer                                                     Catholic Health Care


        Executive Director                                            Executive Director, Service                 Area Clinical Director,
        Organisational                                                      Development                              Medical Stream
        Development                                                      & Population Health                                                                               Principal
                                                                                                                                                                           Director Of
                                                                                                                                                                           Nursing
                                                                                                                                      Area Director                        Catholic
                                                                                                                                     Cancer Services                       Health
      Managers                              Area Director                             Area Director, Chronic
      • Nepean                              Allied Health                              and Complex Care                                                                    Care
      • Blue Mountains                                                                       Stream                               Area Director Palliative
      • Springwood                                                                                                                      Services
                                            A/ Director
          Hospitals                         Allied health
                                                                           Sector Manager               Sector Manager                                             NUM               NUM
                                                          Snr                   East                         West                                                Hawkesbury          Maria
                                                          Physio                                                                                                 Community           Locke
                                                                                                         (Palliative Care                                          Health            Ward
      Nursing Unit Managers                      Snr                                                        Portfolio)
                                                 OT                       Community Nurses
                                                                          Palliative Care CNC &
                                                                          CNS’s
                                         Snr
                                                                          Allied Health
                                         SW
                                                          Inpatient       Bereavement Services        Community Nurses
                                                          Physio          Nepean ACAT                 Palliative Care CNC &
                    Blue Mountains                                        (including                  CNS’s
                                                                          Hawkesbury, and                                           Staff Specialist,
             Springwood                                                                               Allied Health
                                                                          inclusive of Allied                                       Inpatient and
                                                                                                      Blue Mountains ACAT                                       Palliative
                                                                          Health, Nursing and                                       Community Health
    Nepean                                       Inpatient OT                                         (including Nursing,                                       Care CNS,
                                                                          Medical coverage                                          Registrar Positions,
    Nursing staff                                                                                     Allied Health)                                            Live-in
                                                                          against Agreement)                                        Inpatient RMO,                                 Nursing
                                                                                                                                    Research Assistant,         support
                                                                                                                                                                worker             Staff
                                         Inpatient                                                                                  Volunteer Co-ordinator
                                         Social Workers



                                                                                  Clients, carers and family



Wentworth Area Health Service        Palliative Care Strategic Plan 2002-2005                                                                                                        31
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   32
6          Key Palliative Care Service Issues
The development of this plan included a series of meetings with a Palliative Care
Strategic Plan Reference Group (Appendix 1) comprising key stakeholders in
palliative care in WAHS. The stakeholders helped guide overall direction for the
plan, identified a wide range of issues (Appendix 2) and explored options for
addressing these. This information, combined with policy requirements, population
data, and information about service utilisation, has been used in the following
analysis of the service. The analysis highlights strategies for addressing issues.

There are four key areas for analysis: partnerships, quality, access, and education
and awareness.

6.1 Partnerships
The National Palliative Care Strategy (2000) recommends the development of
effective partnerships between services for ensuring high quality, effective care for
palliative care clients and their families and carers across all settings8. Stakeholders
regarded the development of effective partnerships as a major priority for the service.
They felt it would be an effective way to improve access and improve the quality of
the palliative care service provided by partners. They were concerned to ensure that
partners were all working within a palliative care ‘philosophy of care’ framework with
the client at the centre of care.

ISSUES

1. Partnerships to improve access for people who are not using, or under-utilising
   palliative care services as recommended by the Framework or highlighted in
   utilisation rates.
        Inadequate links with children’s services, such as the New Children’s Hospital
        and WAHS paediatric community services.
        Under-representation of Aboriginal and Torres Strait Islander people and
        CALD communities utilising palliative care services.
        PCSN has strong links with some aged care facilities and has provided a
        significant amount of education to aged care staff. Additional strategies to
        clarify partner roles and responsibilities need to be developed.

2. Partnerships with other service providers
      General Practitioners
      The general practitioner is often best placed to be the medical case manager.
      The client is usually well known to them and they are usually familiar with the
      availability of services in their area. The level of support that general
      practitioners require from PCSN to assist them in this role is variable across
      the Area. Caring for a palliative care client may be a rare occurrence for some
      general practitioners and some find it confronting and difficult work. Some
      practices do not offer after hours or home visiting services, and emerging
      styles of general practice may have an impact on continuity of care for clients.
      General practitioners are more likely to consult individually with palliative care
      specialist staff.
      Other organisations
      There is inconsistent or late involvement of “external” service providers in
      planning for and providing client-centred care. In some instances,
      stakeholders indicated this might be due to problems in referral ‘out’ from

8
    National Palliative Care Strategy p 8
Wentworth Area Health Service       Palliative Care Strategic Plan 2002-2005         33
         palliative care to other health and non-health services. External service
         providers would like clearer guidelines for working with Palliative Services.
         Other Area Health Services
         A partnership with Western Sydney may be particularly useful in improving
         palliative care services for children, ATSI and CALD communities as there are
         already strong links across Western Sydney and Wentworth Areas for
         services targeting these population groups.

3   Partnership processes Stakeholders identified particular process problems
    impacting on partnerships.
       Decision-making processes are sometimes unclear or inconsistently used,
       and need to be more inclusive of clients and other stakeholders.
       Access to case conferencing and care planning forums are required for
       “tertiary” as well as primary care providers
       Information and feedback processes need to be improved, with “minimum
       response times”, particularly for medical information requests and referrals.
       The roles and responsibilities of all, including the clients, need to be clarified
       in a consistent way, preferably through a structured process such as case
       conferencing.
       Utilisation of the volunteer service, and communication between the
       volunteers and the Network could be improved.


STRATEGIES

1   Partnerships consolidated and new partnerships developed with key service
    providers, including
       • General Practitioners
       • ATSI services
       • CALD services
       • Aged care and residential facilities
       • Tertiary service providers

2   Communication Strategy developed to assist in improving partnership processes:
      • Processes and protocols to be consolidated to ensure consistency and
         timeliness, with minimum response times identified
      • Protocols established to ensure all relevant ‘partners’ are included in
         information-sharing and decision-making forums
      • Client-centred, managed care plans developed for all clients, clarifying the
         roles and responsibilities of all “partners” in care

3   Service agreements:
       • Service agreements within the PCSN need to be reviewed to ensure
           equitable and effective service provision across the Area and maximum
           utilisation of palliative care resources.

      PARTNERSHIPS
          •    Form client-centred partnerships to improve coordination of care
          •    Form partnerships to improve access for identified populations
          •    Create an infrastructure to support partnerships, including service
               agreements




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005              34
6.2 Quality and effectiveness
Both the National Palliative Care Strategy (2000) and the NSW Health Palliative Care
Framework (2001) emphasise the importance of continuous improvement in the
quality and effectiveness of all palliative care service delivery9. Key elements of a
quality framework include, among others, consumer involvement, the development of
tools and protocols to support better practice, appropriately placed resources,
accreditation and accountability mechanisms, and effective information systems.

Stakeholders identified that continuity in the quality of care from the point of referral
and across all community and inpatient services is variable. They proposed the
reasons as:
          variable levels of skills and understanding of the palliative care philosophy
          of care
          variable access to palliative care expertise and other resources
          lack of protocols of care or accreditation of facilities providing care
          competing demands and types of practice when palliative care clients are
          co-located with aged care or acute care patients

ISSUES
1. Consumers
   Consumers are consistently involved in decision-making about their own care and
   were actively involved in the development of this plan. There is evidence of
   discrete areas of consumer consultation: statistics from a survey of clients and
   carers indicate a high level of satisfaction with palliative care services provided at
   home10; consumer consultations by Cancer services have highlighted the need
   for greater understanding of the needs of carers11; and the Cancer Council NSW
   is proposing to conduct consultations with CALD communities in WAHS to
   identify issues and strategies. In addition to building on these opportunities,
   PCSN needs a planned approach to move consumer participation beyond
   individual care and information seeking, to consumer participation in health
   service planning, delivery and evaluation12.

2. Accreditation, Standards and Protocols.
   While there is no systematic review of palliative care in WAHS using the Palliative
   Care standards, palliative care services in hospital and community settings are
   included in relevant quality improvement processes such as EQuIP and
   CHASP/Quality Management Systems. There are no managed care plans or
   clinical pathways for palliative care in use at present although models for these
   have been identified by Palliative Services staff and WAHS has expertise and
   support available to assist in their further development and implementation.
   Stakeholders, especially nurses, identified the development of pathways and
   protocols as an important strategy to enhance consistency of care across
   settings.

3. Appropriately placed resources
   a. Nursing support The demand for CNC consultancy to support better quality
   practice is increasing, especially at Nepean Hospital. The role of community-
   based CNC’s in the provision of “in reach” services to hospitals will be reviewed
   within the Chronic and Complex Care Stream. In the short-term, however, there

9
   National Palliative Care Strategy p8
10
   Data routinely collected by Wentworth Area Palliative Services
11
   Community Consultations conducted by the Nepean Cancer Care Centre and the Cancer Council,
   NSW at Penrith, in October 2001, as part of a national Cancer Council consumer consultation.
12
   NSW Health. 2000-2005 Strategic Directions for Health p12
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                          35
    are plans to re-configure the service to provide a CNC consultancy service to
    Nepean Hospital an additional one half-day per week. This will place extra
    pressure on the community sector and impact on the ability of the service to work
    effectively, for example in building partnerships to support access and
    consolidating its work with aged care services. In addition, there is a CNC
    speciality gap at Springwood Hospital and the community CNC is called upon to
    provide a significant amount of support at Springwood. An additional CNC
    position could take responsibility for ensuring better quality and consistency of
    care for all inpatients requiring palliative care, especially clients with non-
    malignancies.

    b. Medical support Lack of Resident Medical Officer (RMO) cover for
    Springwood Hospital continues to be raised as an issue for palliative care and
    other WAHS services. This may mean that medically unstable clients are less
    likely to be admitted to Springwood for care, including palliative care.

    There is pressure on Nepean for beds and the beds at Springwood are
    considered to be under-utilised. If there was RMO cover at Springwood, then the
    Palliative Care specialist could admit there. In addition, it may be possible to
    admit palliative care clients directly to Springwood, rather than have them
    admitted through the Emergency Department at Nepean.

    The Area Clinical Services Plan recommends that Springwood Hospital’s
    Palliative Care role should be consolidated, but this may be difficult without
    sufficient resident medical cover.

    General practitioners have expressed concern at the delay in being able to
    access Palliative Care Specialists for advice about the care of clients. Currently
    the Specialist and the CMO share 24hr mobile phone cover. Stakeholders
    expressed concern at the sustainability of the existing workload carried by the
    specialist medical staff.

    c. Equipment Stakeholders expressed concern at the lack of access to
    resources to support people maintaining independence at home for as long as
    possible or to support people in dying at home. It was suggested that lack of
    access to appropriate equipment might be a factor influencing people’s decision
    to go to hospital. Access to equipment was seen as important in maintaining the
    safety and occupational health of staff.

4. Data collection and information management Data collection and information
   management processes need to be addressed to improve the quality of
   information about palliative care service provision. This includes ensuring
   inpatient data reflects palliative care processes. Improvements underway for data
   collection by Community Health and NCCC will assist in providing more accurate
   information. Some stakeholders identified the availability of computers and other
   information technology and databases as a difficulty for community based staff.
   This has implications for the establishment of effective and efficient data
   collection and information sharing for the service.

5. New Technology Changes in information and medical technology could, over
   time, change the way palliative care is provided. In particular, in the field of
   medical oncology, new treatments and new technology mean people are living
   longer with their cancer. Cancer is becoming more like a chronic illness. This
   means people are likely to be utilising palliative care services for a longer period
   of time.

Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005            36
     NSW Health is increasing its emphasis on telehealth as one mechanism to
     improve access to health care for people living in remote areas. Telehealth
     initiatives are also being used across regions to strengthen partnerships and
     collaboration. There are a number of points that may be useful to explore in
     considering the potential for telehealth initiatives in WAHS:

      While many General Practitioners are reluctant to use email and internet
      technology, Blue Mountains General Practitioners readily use email to
      communicate amongst themselves and may provide a useful testing ground for
      a new General Practitioner palliative care symptom control and pain
      management initiative.
      NSW Health identifies telehealth as a useful mechanism to enhance
      partnership and network development, again priorities in this plan.
      Clients who are too ill to travel could access care through telehealth initiatives
      using mobile phone and digital technology.



STRATEGIES
Enhance provision of flexible, integrated care through consistency of better practice
service provision by all services working with palliative care clients:

     1. Increase consumer participation in service planning and evaluation
     2. Develop pathways and protocols for care
     3. Assess the service against the Palliative Care Standards and put strategies in
        place to address any gaps
     4. Establish a Palliative Care CNC position to improve coordination of care
        across settings
     5. Improve medical service provision by establishing an additional 0.5FTE Staff
        Specialist position
     6. Improve the quality of data collection systems for palliative care
     7. In partnership with General Practitioners, investigate the potential for
        telehealth initiatives to improve quality of care and access




 QUALITY AND EFFECTIVENESS
 •    Increase consumer participation through consultation processes
 •    Provide flexible, integrated care through the development of pathways and
      protocols
 •    Assess service provision against Palliative Care Standards
 •    Improve consistency and access to care through the creation of a CNC position
      and additional Staff Specialist position
 •    Improve data collection systems
 •    Improve access to care through Telehealth initiatives




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             37
6.3 Access
“Fairer Access” is a key goal for NSW Health13. In particular, the aim is to reduce
barriers to access, ensure a fairer distribution of resources, and improve the health
status of groups with poorer health. The Framework reinforces this and recommends
24 hour access to trained palliative care staff and improving access for particular
population groups, including children, aboriginal people, people from other cultures,
people with dementia or in aged care and residential facilities, and people with non-
oncology diagnoses.

PCSN provides a comprehensive palliative care service to approximately 500 clients
a year. The majority of these have cancer and access to palliative care for this client
group appears to be good. The numbers of non-cancer clients increases each year,
and is expected to continue to expand.

ISSUES
There were four particular sets of concerns for stakeholders: access to support and
advice after hours; access for particular population groups; access for people living in
the more remote areas of the Health Service or people isolated for socio-economic or
other reasons; and the potential impact of co-location within the NCCC on access.

1. 24 Hour Access to support and advice
Phone advice for clients is available until 11pm. PCSN has attempted to manage the
lack of 24 hour phone cover for clients by ensuring that wherever possible, problems
are anticipated and managed for, but this is not always possible. It is also noted that
the after hours phone service appears to be under-utilised and possible reasons for
this (including “marketing” and monitoring processes) need to be explored.

The general practitioners have 24 hour access to medical and nursing advice via a
mobile phone number. However, client access to general practitioners after hours is
variable across the Area. Stakeholders suggested that access to home visiting by
skilled palliative care staff after hours may be an option when this is the case. The
cost of providing 24 hour cover may be prohibitive.

Access to and demand for after hours advice and support needs to be explored, with
the aim of providing access to 24 hour support and advice as per the
recommendations in the Framework.

2. Access for people from identified population groups.
The main issues for PCSN in working to improve services for children and people
from ATSI and CALD communities, is that the numbers of clients from each of these
groups is likely to be small and all efforts will demand a significant resource
commitment.

Staff may not be familiar with the particular issues and needs of new client groups.
Training, the development of partnerships with key services, and identifying
community mentors may be keys to success in this endeavour. It will also be
important to ensure that resource materials and community information appropriate
to each target group is available.

There are a number of potential problems with recording “identifying” information for
some population groups. People may not wish to identify their cultural or Aboriginal
status, the questions may be poorly worded, staff may neglect to ask identifying

13
     NSW Health. Strategic Directions for Health 2000-2005. p8
Wentworth Area Health Service     Palliative Care Strategic Plan 2002-2005           38
information, or information is inaccurately recorded. It is important that Palliative
Services ensure high levels of reliability in its data collection and recording
processes.

a. Aboriginal and Torres Strait Islander people Stakeholders from the Aboriginal
community stated that Aboriginal people perceived that “mainstream” services are
not meant for them; therefore it is imperative that collaboration and consistency are
the hallmarks in any program development. Based on the views of Aboriginal
stakeholders, in the first instance it may be necessary to provide a service in
partnership with a range of Aboriginal health services to build trust and acceptance.

b. CALD communities The challenge in working with CALD communities is the
increasing diversification of communities in the Area. Stakeholders reported that it
was sometimes difficult to find interpreters to travel to the outer parts of Wentworth
Area Health Service. The Cancer Council NSW is planning to consult with the CALD
communities within WAHS in 2002 and this may assist in identifying issues.

c. Children and Adolescents The number of children and adolescents referred to
PCSN is small (one client in 2000/2001). Even so, staff are significantly affected by
the death of a child. Bereavement services work with a number of children and
adolescents whose parents were, or are, palliative care clients. The team
acknowledges the need for better skills in working with children.

In-patient care for children requiring palliative care is primarily provided by the New
Children’s Hospital at Westmead. Closer links between paediatric services such as
the new Children’s Hospital and WAHS community paediatric services are required,
to identify each “partner’s” role in the provision of holistic, quality care to children and
adolescents with terminal illnesses.

d. Aged Care Inpatient data shows that 2% of referrals are from aged care facilities
(19 inpatient referrals in 2000/01). Stakeholders suggested that some of these
transfers might have been preventable if aged care facility staff had been better able
to manage palliative symptoms. PCSN is working more closely with this industry and
in particular has provided a significant amount of education to aged care facility staff
on symptom control, pain management and bereavement issues (85 episodes to
over 1,000 people in 2001). As recommended within the Framework the links
between PCSN and these services needs to be formalised to ensure consistency of
care and quality service provision. There is difficulty accessing aged care facility
beds in the Hawkesbury LGA, and it is proposed that this is one reason for the longer
length of stay at Hawkesbury Hospital.

3. Access for people living in remote parts of WAHS
Stakeholders expressed concern that clients living in the upper mountains or outer
reaches of the Hawkesbury will have long journeys to attend clinics or services at
Nepean. They may not be able to maintain their independence or remain at home
because support services may not be available. Clients in isolated areas faced extra
problems in accessing after hours care. NSW Health is currently promoting telehealth
initiatives and these could be explored to assist in improving access to care.

4. Co-location in a Cancer Care Centre
It has been suggested by some stakeholders that the co-location of some Wentworth
Area Palliative Services within the Cancer Care Centre may give the perception that
the Palliative Care Service is for cancer patients only and the needs of non-cancer
patients may be overlooked. Palliative Care staff report that this is most evident when
a client’s primary care provider is outside the WAHS region, and therefore less aware
of the service available through NCCC. Co-location promotes early referral of
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                 39
oncology palliative care clients, the major diagnostic group within palliative care. It
also ensures clients coming to the Centre to see the Palliative Care physicians can
be easily referred for radiotherapy or other consultations.

STRATEGIES
Innovative options for addressing access issues, including the development of
partnerships, may need to be identified. The following strategies are recommended
to improve access to services, and to ensure consistency of care for different client
groups:
    • The issue of 24 hour access to specialist support is recognised as a complex
       issue, especially in view of resource priorities for WAHS. Further analysis of
       this issue is therefore recommended with a view to identifying a range of
       options to provide 24 hour access.
    • The development of partnerships with key groups and service providers, as
       described in the ‘Partnerships’ section, is recommended to improve access
       and ensure culturally appropriate palliative care services are provided.
    • The development of culturally sensitive information and resources for
       Aboriginal and CALD communities is also recommended to ensure culturally
       appropriate information is made available to groups under-utilising palliative
       care services.
    • Training of Palliative Care staff has been recommended in a number of areas
       to increase understanding of issues for client groups not currently accessing
       the service, and to enhance expertise in dealing with children.
    • Use of teleheath initiatives is recommended to improve access for remote
       clients.


Improving Access
•        Improve after-hours access to palliative care support and advice
•        Improve access for children, ATSI and CALD communities, aged care clients,
         and people from remote areas of WAHS




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005            40
6.4 Awareness and Education
National and State priorities for education differ. The emphasis at a National level is
on professional development to increase commitment to, and understanding of the
palliative care philosophy of care. The emphasis at the State level is on community
education to increase consumer participation in care and decision making about their
own care. Both are reflected in the strategies that are in place for WAHS.

Education is ongoing for nursing staff and general practitioners. There is a palliative
in-service program in all inpatient facilities, community health centres and aged care
facilities across WAHS. In consultation with the Divisions of General Practice in the
Blue Mountains, Penrith and Hawkesbury, there are ongoing education programs
now in place for General Practitioners.

PCSN organises an annual Palliative Care Conference. This attracts participants
from across the state and provides the opportunity for all staff and interested
stakeholders to access quality information and network with other health
professionals. PCSN also participates in state and national community education
strategies, including National Palliative Care Week.


ISSUES
There continues to be a strong demand for education in symptom control, pain
management and terminal care for palliative care clients in all settings. The
coordination of discharge planning for this client group can be complex, involving
symptom control and psychosocial issues. These and other issues for in-patient
clients suggest a major emphasis needs to be directed at improving the skills of in-
patient service providers.

Stakeholders believe partners need a good understanding of the palliative care
philosophy of care as this is likely to determine their commitment to client-centred
practice and the use of multidisciplinary approaches. There is also some concern that
potential referrers may be unfamiliar with the purpose of palliative care or how to
access the service. A further reason proposed for non-referral was that referrers
might need better skills in discussing palliative care as an option with clients. This
requires honesty and openness in discussing an approaching death and an end to
curative treatment.

STRATEGIES
PCSN currently provides community education to a wide range of consumers and
stakeholders, and participates in state and national awareness raising strategies. It
was therefore agreed that the priority for education should be:
    •  New service providers, and especially General Practitioners and in-patient
       staff
    •  Potential referrers
    •  Community education. The strategies already in place for various consumers
       and stakeholders would continue, as would participation in state and national
       strategies.

        AWARENESS & EDUCATION
          • Increase skills in service providers, including new providers and
            especially General Practitioners and Nepean staff.
          • Increase awareness about palliative care concepts and services
            for potential referrers
          • Raise community awareness about palliative care
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005            41
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   42
7. SUMMARY OF RECOMMENDATIONS

1. PARTNERSHIPS IN CARE
     • Form client-centred partnerships with key service providers to improve the
        coordination of care, establishing processes such as case conferencing
        and management plans
     • Form partnerships with key groups and services to improve access for
        identified population groups, including Aboriginal and Torres Strait
        Islander (ATSI) people, and those from culturally and linguistically diverse
        communities (CALD)
     • Create an infrastructure to support partnerships, including the
        development of service agreements outlining philosophy of care, and
        roles and responsibilities of partners

2. QUALITY AND EFFECTIVENESS
     • Increase consumer participation in service delivery, planning and
        evaluation through consultation processes, and in conjunction with Area-
        wide initiatives
     • Provide flexible, integrated care by developing pathways and protocols for
        the provision of care across a range of settings
     • Ensure quality service provision by assessing the service against the
        Palliative Care Standards and implementing strategies to address gaps
     • Establish a Clinical Nurse Consultant position to improve consistency and
        quality of care across facilities, and a part-time Staff Specialist position to
        provide direct care at Springwood and Blue Mountains Hospitals
     • Improve data collection systems for palliative care by establishing a
        database which includes community-based activity

3. ACCESS
     • Review and provide 24 hour access to palliative care support and advice
     • Improve access for ATSI and CALD communities, aged care clients, and
        children and adolescents by developing partnerships with relevant peak
        organisations
     • Improve access to care for clients in remote areas through Telehealth
        initiatives

4. AWARENESS AND EDUCATION
     • Increase skills in service providers, particularly new providers, General
       Practitioners and WAHS staff, through a skills development program,
       which includes mentoring opportunities
     • Increase awareness about palliative care concepts and services for
       potential referrers within current education strategies
     • Raise community awareness about palliative care through the
       development of a media strategy, which includes participation in national
       and state palliative care events




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005            43
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   44
8.       IMPLEMENTATION AND EVALUATION
PCSN provides a quality service to the residents of Wentworth, and it is clear that
there are key areas for consolidation and development to ensure consistent and
equitable access to care. It is also clear that implementation of the strategies outlined
above will need to occur as part of a staged process, over the three year period of
the Plan. For this reason, priorities have been established in terms of the key goals to
be addressed, with the development of partnerships identified as an important
starting point for the provision of services over the next three years.


Action Plan. The action plan summarises the key goal areas that have been
identified from the National Palliative Care Strategy and the Palliative Care
Framework – partnerships, access, quality and effectiveness and awareness and
education. It identifies the key priorities for each of these goals. It then outlines under
each key goal the main issues, strategies, performance indicators, timeframes and
responsibilities, including potential partnerships for the achievement of these
strategies.

One Year Operational Plans. To further facilitate implementation of these
strategies, it is intended that one year operational plans be developed which include
more specific information about strategies, processes and responsibilities. This is
particularly important where it has been identified that issues require further analysis
before strategies are implemented.

Annual Review. It is important to review the action plan and operational plan on a
regular basis, to ensure that it remains responsive to the changing environment in
which Health operates. In particular, the involvement of consumers and stakeholders
in the development and review of service strategies is recommended, and reinforces
the need for flexibility and responsiveness. It is also anticipated that a key benefit of
the consolidation and development of partnerships will be the identification of new
and creative ways of “doing what we do”. These potential changes in practice need to
be reflected in what should become a “living document” guiding the provision of
palliative care services over the next three years.

To facilitate regular review and updating of the operational plans, it is intended that
the Palliative Care Strategic Planning Reference Group meet each year to review
progress on the plan against performance indicators. Responsibility for overseeing
progress of the plan rests with the Area Director, Palliative Care, in consultation with
the Area Director, Chronic and Complex Care Stream.

Quality activities. It is also noted that ongoing quality activities and initiatives will
also play a key role in developing a culture of continuous improvement, so that
opportunities to improve service provision are identified on an ongoing basis, rather
than as part of a formal review process.




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                45
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   46
9.       RESOURCE IMPLICATIONS

The WAHS Area Clinical Services Plan identifies service development priorities for
acute in-patient services to 2011. Whilst recommendations have been made in
relation to palliative care and its enhanced role at Springwood Hospital, the ACSP
does not include service development priorities and resource implications for sub-
and non-acute services. The ACSP also highlights that WAHS is close to its RDF
share, with limited growth funds anticipated. However, Palliative Care resources will
need to be considered alongside other clinical service development priorities.

It is likely that some recommendations in the Plan will need to be implemented in
ways that have minimal resource implications. Changes to practice, innovative
approaches, collaborative projects and prioritisation of strategies will be required in
order to achieve many of the key goals identified in this Plan.

The Plan has identified two key recommendations with resource implications, for
consideration:


1. Palliative Care Clinical Nurse Consultant (CNC):
Rationale:
A need has been identified to enhance Community Palliative Care Nursing services,
with the creation of a full-time Palliative Care CNC, focusing on the provision of in-
patient services to Nepean Hospital.

There are three key issues impacting on the quality of care provided to palliative care
clients at Nepean Hospital:

1. Admissions via Emergency: 42.6% of palliative admissions in 2000/01 were via
   the Emergency Department (141 separations). This is a high percentage for a
   “known” client group. It highlights concerns regarding access to after hours care
   and appropriate processes for accessing in-patient facilities. It also places
   additional pressure on Emergency Department staff and costs.

2. Consistency and quality of care: Palliative Care patients are admitted to
   oncology and generalist wards at Nepean, depending on bed availability. The
   level of palliative care expertise among clinical staff on these wards varies. This
   is noted primarily in generalist wards at Nepean, but the management of
   terminally ill patients in acute settings has been raised as a general issue. This
   impacts on the quality of care provided, and the consistency with which it is
   available. The Community Clinical Nurse Consultant at Kingswood Community
   Health Centre currently provides consultation to Nepean Hospital a minimum of
   half a day per week. However, this is insufficient to meet the staff support and
   training needs across various wards, and cannot be increased due to the client-
   load in the community.

3. Discharges: The coordination of discharges for palliative clients involves
   symptom control, after-hours support, managed care planning and psychosocial
   support. Due to the range and complexity of needs of this client group, this is not
   always able to be well managed at Nepean.



Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005            47
Service improvements achieved through the position:

Facilitation of an ambulatory model of care. This would involve provision of out-
patient review clinics (or similar) and review of clients on presentation to Emergency
Department to coordinate care planning and address issues which may then avert an
admission to hospital. Where admission is required, the CNC would facilitate this.

Improve consistency and quality of care. During admission, the CNC would
ensure relevant services such as Pain Services, bereavement services, and pastoral
care are involved. Increased consultation would be provided to the various clinical
disciplines across wards to improve the consistency and quality of care.

Reduce readmissions. Coordination of discharge planning would also be facilitated,
particularly in relation to managed care plans, providing better symptom and pain
control on discharge, and reducing the likelihood of readmissions from unresolved
symptom-control issues.

These functions are in line with Area wide strategies for the management of chronic
and complex clients, and for improved management of Emergency Department
presentations.

Timeframe: as this is considered to be a key role for improving the consistency and
quality of care, it is recommended that this position be given priority when funding
becomes available.

Clinical Support Services: there are no clinical support service implications such as
pathology or imaging for this position.

Workforce: One full-time equivalent CNC position

Assets: Minimum requirements, apart from office accommodation plus phone and
computer access

Annual Budget:             Level 1 CNC                              $59,000
                           On-costs (12%)                            $7,080
                           Goods & Services (computer lease, pager) $2,000
                           Total                                    $68,080

Funding Source: The funding for this position is not currently identified and will need
to be prioritised against other service requirements within the Chronic and Complex
Care Stream.


2. Staff Specialist in Palliative Care (0.5 FTE)
Rationale
A need has been identified to enhance Medical Palliative Care Services, with the
creation of a 0.5 FTE Staff Specialist in Palliative Care.

There are two key issues impacting on the provision of Medical Services:

1. Workload: General Practitioners have expressed concern about inconsistent
access to timely medical advice and follow-up about patients referred to the Service.
Clinicians indicate that this is primarily a workload issue, and have expressed


Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005            48
concern at the sustainability of the existing workload carried by the specialist medical
staff. Currently this is one Staff Specialist and one Career Medical Officer.

In addition to a large clinical load, the Director of Palliative Services also has a
number of other functions including managerial and administrative responsibilities,
the supervision of junior staff, and research and quality activities. These
responsibilities have increased with Nepean’s role as a teaching hospital.

Further to this, the Palliative Care Plan has identified that the role of General
Practitioners in the provision of palliative care should be enhanced through more
intensive education and mentoring, and greater participation in case conferencing
and care planning. Improved links with General Practitioners and the Divisions of
General Practice, and the development of a mentoring program will therefore be
additional responsibilities for the Director of Palliative Care.

2. Access: Whilst the Palliative Care Service is an Area-wide service, access to
admission under the direct care of a Palliative Care Specialist is limited to Nepean
and Hawkesbury Hospitals. Blue Mountains Hospital currently admits palliative
clients under the Medical Specialist on call or General Practitioners with visiting
rights. Springwood Hospital admits clients under General Practitioners / Visiting
Medical Officers. Access to direct Specialist care is therefore variable across the
Area, although Palliative Care Specialist consultation services are provided to all
facilities.

Service improvements achieved through the position:

Improved links with General Practitioners: The provision of timely advice and
follow-up, education and mentoring for General Practitioners will improve links with
these key “partners” in service provision. General Practitioner involvement in case
conferencing and care planning is also expected to increase with additional support
from this position.

Improved consistency and quality of care: Equitable access to admission under a
Palliative Care Specialist should improve the consistency and quality of care
provided to palliative clients across the Area. It will provide increased support and
training of generalist staff providing palliative care in all WAHS hospitals, which is a
key feature of the secondary consultation model.

Improved utilisation of dedicated palliative care beds at Springwood Hospital:
The Area Clinical Services Plan canvasses the move towards Resident Medical
Officer cover at Springwood. This is supported by this Plan, as it would facilitate
admissions for palliative care to Springwood Hospital. Enhancing Springwood’s role
in the provision of palliative care would also alleviate pressure on beds at Nepean,
and may provide clients with a more appropriate environment for terminal care.

Timeframe This position is linked to future decisions about the roles and
responsibilities of the Area Director, Palliative Care position. A timeframe for
appointment is dependent on these decisions.

Clinical Support Services: There are administrative support requirements for this
position (includes medical records, reception, secretarial, billing and other duties) as
well as pharmacy costs.

Workforce: 0.5 full-time equivalent Staff Specialist in Palliative Care; 0.5 FTE admin
support

Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             49
Assets: Office accommodation; phone; computer

Annual Budget:
Specialist (0.5FTE)
S&W (incl. on-costs) 75,000
Training Allowance 11,500
Total               $86,500

Admin Support
S&W (incl. on-costs)
0.4 Admin Level 3     15,000
Total                $15,000

G&S (Establishment Costs)
IT requirements     3,500
Office facilities   2,500
Total              $6,000

G&S (Recurrent)
IT recurrent                 500
Pharmacy                  35,000
Total                    $35,500

Grand Total
First Year                 $143,000
Subsequent Years           $137,000

Funding Source: Funding is unlikely to be available from within the Palliative
Care/Nepean Cancer Care Centre budget, so this position will be dependent on
identifying opportunistic funding.




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005         50
                           Section Two

                                Action Plan




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   51
                                                                             ACTION PLAN

                                                               Vision for Palliative Care in WAHS in 2005

 Palliative care will be flexible, quality-based and client-centred. This will be achieved by Wentworth Palliative Care Services Network
 (PCSN) working in partnership with the client, their family and carers, General Practitioners, community nurses and other services.
 Access to care will be provided regardless of geography, culture or socio-economic status.
                                                                                                          Key to abbreviations in the
                                                                                                          plan:
 Key features of the service will include:
    •    Consistent Best Practice across settings
                                                                                                          WAPS - Wentworth Area
    •    Referral processes and systems that ensure continuity of care                                    Palliative Services
    •    24 hour access to specialist advice and support                                                  AD – Area Director, Palliative
    •    A commitment to research, teaching and professional development                                  Care
                                                                                                            C&CP – Consumer & Community
Strategic Goals & Key Priority Areas for Palliative Care                                                    Participation Project
                                                                                                            CALD – Culturally and
 PARTNERSHIPS IN CARE                                                                                       Linguistically Diverse
     Development of Partnerships to Plan and Deliver Accessible, Client-Centred Services                    CEU – Cultural Equity Unit
                                                                                                            CNC – Clinical Nurse Consultant
 QUALITY AND EFFECTIVENESS                                                                                  CNS – Clinical Nurse Specialist
                                                                                                            Div GP – Division of General
      Provision of Flexible, Integrated Care
                                                                                                            Practice
                                                                                                            GP’s – General Practitioners
 ACCESS                                                                                                     PCSP – Palliative Care Strategic
     Provision of 24 Hour Access to Specialty Services                                                      Plan
     Provision of Services for those not Currently Accessing Palliative Care                                PCSN – Palliative Care Services
                                                                                                            Network. This is inclusive of all
 AWARENESS AND EDUCATION                                                                                    the services that work together to
     Service Providers working with Palliative Care Clients                                                 provide palliative care within the
     Potential Referrers                                                                                    Wentworth Area.
     Community Awareness



 Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                                                                    52
 Goal 1: Partnerships to Deliver Care
 Priority: Development of Partnerships to Plan and Deliver Client-Centred Services
 ISSUE                           STRATEGY                                  PERFORMANCE INDICATORS AND                       Timeframe    Responsibility
                                                                           TIMEFRAMES                                                       /Potential
                                                                                                                                          Partnerships
  1.1 Client centred             1.1.1     Review and improve case         1.1.1.1 50% of clients have a case conference   June 2003    AD/ GP’s
      partnerships                         conference protocols and        to which the General Practitioner has been
                                           processes to ensure all         invited.
  Not all partners are                     relevant stakeholders,
  consistently ensuring the                including the Chronic &
  client and their                         Complex Care Liaison
  carers/family are at the                 Nurse, are involved in
  centre of decision making                decision making about care
  and experience continuity                of clients.
  of quality care across
  services                       1.1.2     In consultation with clients    1.1.2.1 50% of case conferences include         Sept 2003    AD, CNC
                                           and relevant services,                  management plan process.
  Lack of coordination                     develop, implement and
  between services may                     evaluate client-centred
  impact on clients                        management plans
                                           detailing agreed roles and
  The palliative care                      responsibilities of each
  philosophy of care and the               partner, including the client
  needs of clients may not                 and their carers or family
  be well understood by all                and volunteers.
  partners

 2.   Partnerships to            1.2.1     Form partnerships with          1.2.1.1 (See Access 3.2)
      Improve Access                       services relevant to the
                                           Aboriginal and CALD
  Aboriginal people and                    communities
  people from CALD
  communities access the
  service less often than
  mainstream population




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                                                                                  53
 1.3 Creating a partnership       1.3.1     In consultation with the        1.3.1.1 Service Agreements or similar,
 infrastructure                             Palliative Care Network                 established eg memorandum of            2002-2005   AD, PCSN /other
                                            develop a service                       understanding:                                      appropriate
 Need to improve links with                 agreement format which          A) Within Network:                                          services
 aged care, pain services,                  addresses:                         •   WAHS Aged Care Services / Geriatrician
 private health care                                                           •   Allied Health Services
 services, other Area Health      •    Philosophy of Care                      •   Pain Services
 Services, government and         •    Roles and responsibilities              •   Aboriginal Health
 non-government                   •    Key accountabilities                    •   CALD Services
 organisations                    •    Communication                           • Non Cancer specialties requiring
                                  •    Referral processes                          Palliative Care services
 Need to develop structures       •    Information sharing
 for communication and            •    Protocols for Case                   B) Externally:
 deciding key                          Management                              •   Divisions of General Practise
 accountabilities and             •    Managed Care Plans                      •   Aged Care Facilities throughout WAHS
 responsibilities in providing                                                 •   Children’s Services
 palliative care to clients                                                    •   Non-Oncology Services
                                                                               •   Other Government Agencies eg Dept of
                                                                                   Housing

                                                                            1.3.1.2 Minimum of two new initiatives to       annual      AD, CNC, PCSN
                                                                                    improve communication implemented
                                                                                   and evaluated each year.
 Goal 2: Quality
 Priority: Provision of Flexible, Integrated Care
 Consumer involvement; Tools and protocols; Accreditation and accountability mechanisms; Resources; Information systems
 2.1 Consumer              2.1.1 Establish mechanisms for         2.1.1.1 Minimum one consultation with          June 2003              AD, PCSN,
       participation             more effective consumer                  consumers, carers and community                               C&CP Project
  No clear guidelines for        participation in palliative care         members conducted in each LGA                                 Officer/Consumers
  consumer participation         service delivery, planning               annually
  and decision-making in         and evaluation.                  2.1.1.2 Report of consultations and            Dec 2003
  Palliative Care services                                                recommendations for action written and
  planning, delivery and                                                  distributed to consumers
  evaluation                                                      2.1.1.3 Minimum one priority recommendation    annual
                                                                          arising from report implemented each




Wentworth Area Health Service    Palliative Care Strategic Plan 2002-2005                                                                                   54
                                                                                      year
                                                                              2.1.1.4 Consumers and stakeholders contribute       annual
                                                                                       to annual review of Palliative Care Plan
 2.2 Flexible, Integrated           2.2.1    Service Agreements               2.2.1.1 Agreements include identified               2002-2005   AD, CNC,
      Care                                   include:                                 processes.                                              /Appropriate
 Better continuity of care for      •    Referral processes                                                                                   partners
 palliative care clients from       •    Standardised policies and
 point of referral across in-            protocols across the Area
 patient and community              •    Case conferencing
 settings is variable               •    Pathways
                                    •    Managed care plans
 Variable application of            •    Communication processes
 protocols; no pathways             •    Feedback mechanisms

 Communication across
 settings /services, and
 timeliness of referrals
 between health service
 providers (eg to allied
 health) is variable
 2.3 Accreditation                  2.3.1. Introduce formal mechanisms        2.3.1.1 Annual review against Palliative Care       annual      AD, PCSN
      Systems                                                                         Standards and with minimum of two
                                                                                      gaps in standards addressed each year
 No formal systems in place
 2.4 Appropriately                  2.4.1     Create CNC position             2.4.1.1 Increased consultancy to generalist         2002-2004   AD, CNC
 Allocated Resources                2.4.2     Support recommendation                   staff providing palliative care
                                              for RMO services at             2.4.2.1 Increased number and level of acuity of     Annual      AD, CNC
 Consistency of care across                   Springwood Hospital                     palliative care patients transferred form
 in-patient facilities varies at                                                      Nepean to Springwood Hospitals.
 Nepean hospital                    2.4.3     Contribute to analysis of
                                              Area equipment issues and       2.4.3.1 Improved access to electric beds and        2004        AD, CNC, Allied
 Under-utilisation of                         support implementation of                carewave mattresses.                                   Health
 palliative care beds at                      recommendations
 Springwood Hospital




Wentworth Area Health Service      Palliative Care Strategic Plan 2002-2005                                                                                     55
 Problems in accessing
 appropriate equipment to
 provide quality care in
 hospital and at home.
 2.5    Data Management          2.5.1  Develop a Wentworth Area           2.5.1.1 Data base established                     Oct 2002    AD; CNC; Clinical
                                        Palliative Services data                                                                         Information reps;
 Improve the quality of data            base and establish access                                                                        Clerical staff
 collected and data                     to relevant network data
 collection systems for                 management systems
 palliative care                 2.5.2 Improve information                 2.5.2.1 Timely and accurate information           Annual      AD, CNC
                                        management systems                         exchange across the network.
                                        across the network
 2.6 Research                    2.6   Establish Research                  2.6.1.1 Evidence of change in practice based      Sept 2002   AD, CNC/
                                       Committee to progress                       on research evidence                                  Research
 Need to develop research              current and future projects         2.6.1.2 Research Committee established            Mar 2003    Assistant, WAHS
 capacity within the                                                       2.6.1.3 Review of current work and future         Annual      Research reps,
 Palliative Care Services                                                          research needs and capacity completed                 other appropriate
 Network                                                                   2.6.1.4 Strategies to improve capacity            Annual      academic support
                                                                                   developed and minimum of one strategy
 Need to improve use of                                                            addressed annually
 research to inform best
 practise palliative care

 Goal 3: Access
 Priority: Provide 24hr access to specialty services & ensure equity in people’s access to palliative care.
 3.1 24 hour access to           3.1.1     Review and establish 24         3.1.1.1 Access to 24 hour advice and support is   Dec 2003    AD, CNCs, Medical
     support and advice                    hour phone access through               established.                                          Services, WAHS
                                           centralised number for                                                                        and Catholic Health
 Medical cover provided by                 clients and partners in care                                                                  Care
 Palliative Care Specialist                (including General
 and General Practitioners is              Practitioners)
 under     pressure,   client    3.1.2     Investigate alternative         3.1.2.1 Reduction in the number of in-patient     June 2004   AD; CNC; Director,
 access to support and                     admission procedures                    referrals admitted through Emergency                  Emergency Dept;
 advice is variable across                                                         Dept.                                                 Div GP
 the Area




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                                                                                     56
 High number of in-patient
 referrals coming through
 Emergency Dept in Nepean
 and Hawkesbury Hospitals
 3.2 Access for people            3.2.1     Develop Partnerships to         3.2.1.1. Partnerships established with:           2005        PCSN / Relevant
     who are currently not                 improve access for identified        - Aged care facilities                                    Peak organisations
     accessing services                    population groups:                   - Aboriginal & TSI / CALD services
                                  •     Improved networks                       - Adolescents / Children’s services
 Need to improve access           •     Advocacy
 for:                             •     Culturally appropriate services     3.2.1.2. Minimum of one meeting per year          Annual
 •     Aboriginal and Torres      •     Awareness and skills in working              between PCSN and Peak organisations
      Strait Islander peoples          with identified populations                   for each group to review and address
 •     People from Culturally     •     Collection and monitoring of                 progress on improving access
      and Linguistically               identifying information
      Diverse communities         •     Client information                  3.2.1.3. Minimum of one new strategy              Annual
 •     People with non-cancer     •     Promotion of palliative care                 implemented for each population group
      related diagnoses,          •     Complaint and feedback                       each year.
      especially when some             processes
      palliative services are     •     Consumer participation in           3.2.1.4 Relevant staff training undertaken to     2002-2004
      located within a Cancer          decision making about                        address specific needs of target groups
      Care Centre                      individual care and service
 •     People living in remote         development                          3.2.1.5 Language and culture specific client      2004
      areas of WAHS                                                                 information available
 •     Residents of aged care
      and dementia facilities     3.2.2 Investigate opportunities for       3.2.1.6 Improved collection of identifying        2003
 •     Children and               the establishment of telehealth                   information for ATSI and CALD clients
      adolescents                 initiatives to improve access for
                                  remote clients.                           3.2.2.1 Improved access for remote clients        2005
                                                                                     using telehealth methods assessed




Wentworth Area Health Service    Palliative Care Strategic Plan 2002-2005                                                                                  57
 Goal 4: Awareness and Education
 Priorities:
 Build commitment to palliative care philosophy of care among service providers working with palliative care clients
 Raise awareness of Palliative Care in the community, particularly for potential referrers
 4.1 Service providers            4.1.1 In consultation with                4.1.1.1 Skills development programme              Annual   PCSN /
     working with                       stakeholders, and especially                developed and evaluated                            Stakeholders
     palliative care clients            new service providers,
                                        including General
 Need to ensure service                 Practitioners and WAHS
 providers are working within           staff, develop and implement
 the palliative care                    a skills development
 philosophy                             programme

 Inconsistency in quality of      4.1.2 Provide opportunities for           4.1.2.1 Increase in the numbers of General        Annual   AD/ Div GP
 care across WAHS                       General Practitioners with an               Practitioners attending palliative care
                                        interest in palliative care to              case conferencing.
 Need to ensure new service             be mentored and supported
 providers have access to               to enhance and practice
 skill development                      skills
 4.2 Potential Referrers          4.2.1 Within current education            4.2.1.1 Reduced percentage of late referrals      Annual   AD, PCSN
                                        strategies increase                         (Recorded as a Sentinel Event)
 Late referral/not referred to          awareness among potential
 Palliative Care Network                referrer groups about the
                                        referral processes
 4.3      Community               4.3.1 In consultation with Public         4.3.1.1 Minimum of one new media strategy         Annual   PCSN/ Public
          Awareness                     Affairs, WAHS, develop and                  implemented each year.                             Affairs
 Need to raise awareness in             implement a media strategy
 the community of palliative            to increase the profile of          4.3.1.2. Minimum of one event in each local       Annual
 care services                          palliative care including                    government area each year to promote
 Some consumers have                    participation in National and                palliative care as a concept.
 difficulty in accessing and            State Palliative Care events.
 navigating palliative
 services.




Wentworth Area Health Service    Palliative Care Strategic Plan 2002-2005                                                                             58
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   60
                      Section Three

Appendix




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005   61
Appendix 1
             Palliative Care Strategic Plan Reference Group

Palliative Services
Area Director, Palliative Services, WAHS                        Dr Michael Noel
Career Medical Officer                                          Dr Mark Dillon
CNC WAHS                                                        Megan Luhr-Taylor
                                                                Steve Jeffs
CNS: Community Health, Blue Mtns                                Gillian Norton
CNS: Community Health, Penrith                                  Kathryn Evans
CNS: Community Health, Hawkesbury                               Rosemary Mattes
Bereavement Services Co-ordinator                               Michael Farrell-Whelan
Volunteer Co-ordinators                                         Margaret Dawson
                                                                Denise Emerson
Volunteers                                                      Marlene McDonald
                                                                Noel La Pira
                                                                Jeanette Young
                                                                Edna Sampson
Pastoral Care                                                   Sr Mary Donnelly


Partnerships in care
General Practice                                                Dr Yusuf Bassa
                                                                Dr Sahasrabuddue
NCCC                                                            Jenny O’Baugh
Extended Care                                                   Dawn Williamson
Governor Phillip Aged Care Facility                             Michelle Miller
Nepean Hospital                                                 Margaret Matusewicz
Blue Mountains Hospital                                         Mary Brown
Hawkesbury Hospital                                             Robyn Daniel
Clinical Co-ordinator, Allied Health Services                   Lyn McDonell
Psycho-oncology (NCCC)                                          Dr Cathy Mason
Allied Health Services (Inpatient)                              Sue Cattanach
WAHS Aboriginal Health                                          Trish Heal
Ngara Aboriginal Carer Support Service                          Betty Connelly
Home Care NSW, Wangary Aboriginal Service                       Jennifer Williams
Dept of Housing                                                 Michael Teo
Cultural Equity Unit (WAHS)                                     Rita Perkons
Community Representatives                                       Joy Edmonds
                                                                Lorna Howes
Breast Cancer Support                                           Jan Dowd

Strategic Alliances
Western Sydney Area Health Service                              Dr Michael Smith
Health Improvement (WAHS)                                       Erica Gray
Health Services Planning (WAHS)                                 Tracey Goldsworthy




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                 62
Appendix 2

Issues identified in consultation with key stakeholders

1. Partnerships
1. Facilitate improved relationships with care partners eg:
                    aged care
                    pain services
                    anaesthetic services

2. Increase number of palliative care Medical Staff across the Area. Cross-
   appointments to improve access; registrar training programs

3. Admitting rights for Palliative Care Specialist Medical Staff in all WAHS hospital
   facilities

4. Increase level of collaboration between Area Health Services. Palliative Care
   network between WSAHS and WAHS could be strengthened – eg training,
   clinical improvement / quality activities, benchmarking, research, referrals etc

5. Improve collaboration between WAHS facilities to ensure consistency of service
   provision across the Area; the Area Clinical Services Plan flags the need for
   improved networking across the hospitals

6. Other services (eg. Dept of Housing) would like to be consulted earlier in the
   stages of a clients care and included in case management conferences so they
   can better anticipate the changing needs of clients

Coordination of care across services
7. Actively and widely consult with General Practitioners to reinforce their role as
   medical case manager and identify the general practitioner’s expectations of
   palliative care
            development of protocols to clarify networks, links, partnerships
            confirm decision making processes
            define the role of consultancy and establish mechanisms to improve
            consultancy processes
            clarify after hours access
            agree on the relationship between Palliative Care and General
            Practitioners
            develop better communication mechanisms for timely information sharing

8. Development of clinical pathways (as part of developing best practice guidelines
   and consistency of care across facilities and services), particularly where there
   may be palliative care clients in beds other than designated palliative care beds

9. Monitor the effect of emerging styles of general practice provision on the
   continuity of care for palliative care clients

Volunteers
10. Improve communication between volunteers and the Palliative Care team
    members


Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005          63
11. Make sure volunteers are not used as substitutes in lieu of other community
    services ie. HACC program

12. Clarify volunteer role to clients, Palliative Care Team and other staff

13. Value volunteers by re-imbursement of expenses such as petrol money etc

14. Provide advocacy education for volunteers

15. Commitment to ongoing in-service education for volunteers

16. Volunteer Service to be adequately resourced in the areas of administration
    support, education and training of volunteers

 2. Access
24 Hour Access
17. Provide access to 24 hour crisis counselling; better links to existing crisis
    counselling services

18. 24 hour central intake number for three key groups to access information or
    professional advice and support:
                        • Clients
                        • Carers
                        • Medical staff

19. Monitor the effect of emerging styles of general practice provision on access to
    services for clients

20. Need access to after hours nursing or visiting services, not just to phone service

21. Develop a promotion campaign for the after hours call service

Aboriginal People
22. Ensure we are meeting changing needs in access to palliative care for Aboriginal
    people – including culturally appropriate information

23. Work with existing indigenous services (such as Daruk Aboriginal Medical
    Service, Ngara and Wangary) and the WAHS Aboriginal Health Service to
    develop a plan for Wentworth Palliative Services which links with the existing
    Aboriginal Health Plan

24. Ensure the same support is available to the Aboriginal population and their carers
    as is available to non-Aboriginal palliative care clients

25. Increase awareness in the Aboriginal community about palliative care services

Culturally sensitive services
26. Monitor and manage changing needs in access to palliative care for people from
    other cultural and language groups, including access to information

27. Ensure cultural accessibility and appropriateness of services

28. Provide Palliative Care specific training on cross cultural issues, especially about
    pain management


Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             64
29. Increase the use of interpreters

Non-cancer diagnoses
30. Ensure we are monitoring and managing increasing access to palliative care for
    people with non-cancer diagnoses. Specific strategies may be required to ensure
    access for this group when palliative care medical services are provided within a
    Cancer Care model

WAHS distant communities
31. Need to improve people’s access to services in distant parts of the Area and
    acknowledge the difficulties associated with travelling long distances each day for
    chemotherapy or radiotherapy

Aged care facilities
32. Need to be better links with Geriatricians and Geriatric Services. People who go
    from home to aged care facilities particularly feel the sudden loss of quality of life.

33. The possible lack of palliative care expertise in aged care facilities may mean
    clients are transferred from aged care facilities to a hospital as a solution to a
    palliative care management problem. This may well be managed by better
    palliative care consultancy to aged care facilities.

34. Aged care facilities need to have palliative care service standards included in
    their accreditation and for this to be seen as part of the service they provide. This
    is important in our area as terminal care is often provided in aged care facilities
    instead of hospices

35. Palliative care staff may need training/support to provide palliative care services
    to people with dementia and other disabilities

Children/Adolescents
36. Ensure we are monitoring and managing changing needs in access to palliative
    care for children/adolescents

Staffing and Resources
37. Provide lifting equipment resources sufficient to ensure staff can comply with the
    ‘no lift’ policy

38. Improve the availability of equipment to support people dying at home. Currently
    equipment not available or only at cost. Need to improve access for palliative
    care clients to PADP equipment - eg. provide portable oxygen cylinders to clients
    who are able to go out but limited by need for oxygen. Currently only provide
    large cylinders. Clients have to pay for their own portable oxygen cylinders.

39. Improve access to equipment after hours

40. IT Hardware and software – need better access for all staff to current systems

41. Need to improve data quality and collection and identify the resources the service
    will require in the future for better data collection systems and to begin to invest in
    IT resources and put these in place

42. Improve RMO cover at Springwood

43. Allocate sufficient resources for other ‘end stage’ illnesses – for example, provide
    education about the services available etc
Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005                65
44. Need full time Clinical Nurse Consultant for Nepean Hospital inpatients in all
    wards.

45. Improve staff/client ratio’s

3. Quality and Effectiveness
46. Ensure quality management is an active process. Strategies need to be put in
    place that ensure that best practice, learning/professional development and
    quality initiatives are implemented into everyday practice (continuous
    improvement strategies)

47. Develop better quality ‘respite’ and inpatient services – especially improve quality
    of care for clients in Emergency.

48. Provide and promote better access to respite for carers

49. Contribute to development of better models of care – evaluate WAHS model
    against other benchmarks

Flexible, integrated care
50. Ensure a continuum of quality from the point of diagnosis, through treatment and
    terminal phases of care, and bereavement; as well as continuity of care from
    home, to hospital and through to aged care facilities or other residential facilities.
    Continuity of care also covers physical, psychological, spiritual, social and cultural
    care and support, according to the Framework

51. Improve two-way communication mechanisms between services in the
    community and in-patient services. This needs to include information about the
    community services people may have been accessing so that access to these is
    suspended and re-established as required.

52. Develop networks, protocols and partnerships to improve communication and
    service provision across government and non-government departments. This
    should include early referral for services, especially where planning for the future
    needs of the client may be required – eg Dept of Housing requires early notice if
    home modifications may be required. Important to flag who may coordinate/case
    manage this process.

53. Explore how Palliative Care works with General Practitioners with a range of skill
    level in managing palliative care

54. Palliative Care can be time consuming, difficult, challenging and confronting work

55. Investigate potential for interested General Practitioners to develop palliative care
    experience and for General Practitioners with admitting rights at Springwood
    Hospital to take on non-local palliative care clients

Timely Referrals
56. Encourage timeliness of referrals including:
          Referrals to physio
          Referrals to allied health generally including pastoral care
          Referrals to Palliative Care from Oncology


Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005               66
57. Need to make the referral process easier for people who may not access
    palliative care through the “mainstream” channels.

58. When clients from WAHS access oncology services through another Area Health
    Service they may not be effectively linked back in with local palliative care
    services

59. Need early referral for services especially where planning for future need may be
    required

60. Insufficient access to appropriate information. Information to community health
    from in patient services may be limited or not clear.

61. The minimum data set as collected by the intake system in community health is
    inadequate. The referral mechanism is complex and time consuming.

62. Palliative Care Specialist is sometimes unavailable to talk on the phone when a
    general practitioner rings. The response time by specialist medical staff to
    general practitioners calls for advice or support needs to be 1 hour or less.

63. Palliative Care clients interact with a very complex array of services and indicated
    that they need a map or guide for how to navigate their way through the Palliative
    Care system – this should include information for carers and family, and what
    resources are available to assist them in their Palliative Care experience

Client- Focus
64. Consider establishing a Welfare Support Committee (such as exists at Bathurst)
    to raise funds specifically to help out clients in cases of hardship

65. Needs to be better coordination of welfare support for clients including
    links/networks between government and non-government agencies

Bereavement Support
66. Expansion of service to include children of clients and support them in managing
    the death and dying of a parent

67. Raise awareness of children’s needs within the Palliative Care Team, updating
    the skills of the Palliative Care Bereavement Coordinators, and providing training
    for case managers and others staff

68. Build links and support for professional development with other organisations
    providing support to palliative care client groups, eg the Ngara Carer support
    service and their volunteers

69. Expand the pastoral care service to provide a community based pastoral care
    worker

Research
70. Clarify the Palliative Care Service commitment to research

71. Research to assess implementation of best practice guidelines and outcomes

72. Assess the number of people being hospitalised because of the lack of availability
    of equipment and resources to keep them at home


Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             67
73. Establish a Palliative Care Research Review Committee which will include
    consumers and regularly review the research directions and support within
    palliative care in WAHS


4 - Awareness and Education
74. The Palliative Care Service needs to be better known in the community to
    improve referrals; reduce stigma; and increase understanding about palliative
    care services. Community needs better info on where to go for help

General Practitioners
75. Education is offered to General Practitioners but need to look at availability and
    attendance, explore with General Practitioners options for providing information /
    education – eg email, newsletter, grand rounds, in-services, role of general
    practice managers in disseminating information; role of case management
    coordinators in general practices

76. Explore ways of mentoring General Practitioners in developing better skills if this
    is what they want. Explore interest of Springwood General Practitioners in
    “specialising” in palliative care and admitting “out-of-area” palliative care patients
    to Springwood Hospital

Professionals
77. Hospital staff need better information and education about what is available for
    PC clients in the community and throughout the continuum of care

78. Increase skills of Assistants In Nursing (AIN’s) and trained staff in aged care
    facilities by providing consultancy support

79. Provide information, education, support and consultancy to generalist staff; and
    the     development     of    protocols,  best    practice    guidelines     and
    links/networks/partnerships to ensure quality of care for clients in generalist
    settings

Palliative Care Staff
80. Explore opportunities to link with other Area Health Services Palliative Care
    Teams for recognised Palliative Care training programs, as well as facilitating
    best practice, benchmarking and professional development

81. Education about the special needs of children and adolescents, and other groups
    such as ATSI and CALD communities, people with dementia and other groups

82. Need education in managing challenging behaviours in end-stage care

83. Education on what is available from other services so that more timely and
    effective referrals take place between services




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005               68
Appendix 3
Review of achievements
Wentworth Area Health Service Palliative Services Strategic
Directions 1996-1999 and Vision and Philosophy 1996-2005

    Achievements:
    •  Access to personal assistance through Home Care
    •  Live in housekeeper position established
    •  Full time Career Medical Officer position established
    •  Registrar position established (Not yet accredited with College of GP’s)
    •  Bereavement Service extended to full time
    •  Access to live-in respite carer
    •  Enhanced volunteer service with protocols in place and improved training and
       support program
    •  Client care trust fund established
    •  Palliative Care brochure developed


    Areas that still need to be progressed:
    •  24 hour telephone information and support
    •  1 FTE reliever for the CNS/CNC
    •  Develop liaison with identified General Practitioners with interest in Palliative
       Care
    •  Improve access to team meetings for interested General Practitioners
    •  Access to palliative care pharmacy supplies through community pharmacies
           o Availability of palliative care type medications in community
               pharmacies has improved but still not possible to get a full range of
               palliative medications in all pharmacies
    •  Provide 72 hour pack medications
    •  Improve access to interpreter and multicultural services
    •  Improve liaison between Palliative Care, Cultural Equity Unit and Aboriginal
       services
    •  Provide support to support groups
    •  Increase access to community assessment by physiotherapists and
       occupational therapists
    •  Area wide social work position for Palliative Care
    •  Increase timely and appropriate referrals
    •  Increase numbers of joint consultancy visits
    •  Undertake quality initiatives and research activities
    •  Identify clinical indicators using ACHC
    •  Develop mechanisms for collection of clinical indicators data
    •  Develop managed care/ clinical pathways for palliative care




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005             69
Appendix 4

Glossary of Terms
AD – Area Director, Palliative Care
C&CP – Consumer and Community Participation Project
CALD – Cultural and Linguistically Diverse
CEU – Cultural Equity Unit
CNC – Clinical Nurse Consultant
CNS – Clinical Nurse Specialist
FTE – Full-Time Equivalent
NCCC – Nepean Cancer Care Centre
PCSP – Palliative Care Strategic Plan
PCSN – Palliative Care Services Network. This is inclusive of all Wentworth AHS
funded services that work together to provide palliative care.
Service Agreements – Agreements between “partners” outlining philosophy of care,
roles and responsibilities, key accountabilities, communication processes, referral
processes, protocols for information sharing, decision-making and case
management, managed care plans and feedback and review mechanisms.
WAHS – Wentworth Area Health Service




Wentworth Area Health Service   Palliative Care Strategic Plan 2002-2005          70