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| Journal of the New Zealand Medical Association,
22-September-2006, Vol 119 No 1242
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Palliative Care Partnership: a successful model of
primary/secondary integration
Bruce Stewart, Simon Allan, Barry Keane, Bridget Marshall,
Jane Ayling, Tai Luxford
The concept of partnership between palliative care services
and primary care is a well established internationally.3,4 The consensus has
been that a partnership approach to palliative care provision has many benefits
in terms of maximising existing services in the face of rising referral rates5
and preventing fragmentation of services. 6,7
Clarke and Neale8 suggested that building palliative care
services exclusively around a specialist hospice service only served to de-skill
general practitioners and district nurses which had a flow on effect regarding
the standard of care delivery.
An ideal of general practice involvement is suggested by
Thomas:9,10
Caring
for the dying is a challenging but rewarding business. Many GPs and district
nurses feel that palliative care represents the best of all medical care,
bringing together the clinical, holistic, and human dimensions of primary care,
and bonding us with our patients in very special way.
In the same way as it matures as a specialty, specialist
palliative care has been defining its relationship with primary care:
Specialist
palliative care builds on the palliative approach adopted by primary care
providers and reflects a higher level of expertise in complex symptom control,
loss grief and bereavement. Specialist palliative care works in two ways: first
by providing the direct care to referred individuals and their families and
secondly by providing a consultancy service to primary care providers and
therefore supporting their care of the patient and family.11
These ideals are consistent with the
New Zealand Palliative Care Strategy12
which states that the provision of palliative care should happen across a range
of agencies and involve a partnership between primary care and a specialist
palliative care provider.
The perception of Manawatu general practice providers in the
early 21st century was that their situation was less than the international
ideal. General practice perceived that the Hospice Service had
‘captured’ palliative care, often to the exclusion of general
practice.
Contemporaneously, in response to a growing awareness of the
need to find a more integrated approach to manage the growing palliative care
need, Arohanui Hospice staff looked for ways to work more closely with general
practice teams (GPTs), and the scene was set for open dialogue.
In 2002, Arohanui Hospice in conjunction with the Manawatu
Independent Practice Association (MIPA) commissioned a survey of GPTs in the
greater Manawatu, Horowhenua, and Tararua region.13
This survey demonstrated that although Arohanui Hospice was
respected as a specialist palliative care service, the earlier perceptions of
general practice providers were reinforced and responses clearly signaled:
Arohanui Hospice and
MIPA responded with the establishment of a multidisciplinary working party to
address the issue of provision of community-based palliative care.
The working party developed a set of key aims for the
project:
Following on from these aims, the
working party developed the concept of the
Partnership of
Care—with
a vision for palliative service delivery in the MidCentral region (see
Box 1).
As this partnership model was consistent with the MidCentral
District Health Board’s vision for primary secondary multidisciplinary
service integration, the project was able to attract significant district health
board funding as a new primary care initiative. This funding provides for
equitable access to primary level palliative care by reducing financial barriers
to patients accessing general practice care.
The Palliative Care Partnership (PCP)In essence, the PCP is community palliative care based on a
partnership between GPTs and the Specialist Palliative Care Service. The
cornerstone of the PCP is the effective working relationship between the GPTs
and Arohanui Hospice. Central to the effectiveness of the model is the role of
the Palliative Care Coordinator (PCC), an advanced nursing role within the
Arohanui Hospice interdisciplinary team. The PCC has the twin responsibilities
of bringing specialist palliative care assessment and nursing support to
patients and families and facilitating
coordination of care between providers. This creates the true
‘partnership’
between primary care and specialist care for the benefit of the patient and
their family/whānau.
Key aspects of the partnership are:
PartnersThe Palliative Care project has three main partners: the
Arohanui Hospice Palliative Care Service, General Practice Teams (general
practitioners, practice nurses, and support staff), and the Manawatu Independent
Practice Association.
Key linkagesSupporting and interacting with the partners are several key
groups. The most
important linkage is with the MidCentral Health District Nursing Service. This
service often plays a significant role by providing 24-hour clinical and
personal care for patients and their families/whānau during the final phase
of care.
Other
linkages include the
Cancer Society, Aged Residential Care, and Māori and Iwi health
providers.
ComponentsThere are four main components to this Partnership:
Participation frameworkPatients are referred to the partnership via the following
health providers:
All referrals are made to Arohanui
Hospice; the hospice
team conducts an initial assessment which integrates physical, spiritual,
cultural, and psychosocial elements of the patient and family/whānau. This
assessment is usually conducted by the PCC but may involve any member of the
Hospice team—doctor, nurse, social worker, or other (as appropriate
to each case).
As part of this assessment, a care plan is developed to
which all parties are encouraged to contribute to and update. The care plan is
held by the patient who takes it to all care review discussions.
Depending on need, ongoing care is then provided across the
agencies involved with the PCC as the primary coordinator of care and the GPT as
the patient’s first point of contact. Patient review by the specialist
hospice team is provided as required. This
review may be
requested by either the GPT, PCC, the patient and/or family/whānau,
District Nurse, or hospice staff. The PCC will usually be the communication
conduit for key decisions made
As part of the partnership, after-hours availability
(including weekend and annual leave cover) is discussed, agreed, and documented
in the patient’s care plan. In situations where patients cannot be managed
effectively in the community, admission to the Arohanui Inpatient Unit may be
required and will be negotiated between the PCC and/or GPT and the Inpatient
Unit Team.
The GPT is informed of a patient’s admission,
discharge from and/or death in the hospice and is encouraged to visit and
contribute to the management plan, however the Hospice team has overall
responsibility for inpatient management.
The participation pathway (Figure 1) outlines the roles and
responsibilities within the partnership model, and how the patient moves through
the Partnership of Care. The PCCs provide the link between the GPTs and the
specialist interdisciplinary team at Arohanui Hospice.
Figure 1: Participation pathway
 To encourage an interdisciplinary approach, registration for
participation in the PCP by interested GPTs is only accepted if both general
practitioners and practice nurses participate. Completion of the education
programme and yearly updates is mandatory for registration on the
programme.
Education programmeThe education component of the partnership programme is
framed around the Gold Standard Framework (GSF) developed by Keri Thomas.15 The
GSF was developed in the United Kingdom as a tool to support and facilitate the
primary care practice team to ‘raise their game’ towards the highest
quality care for patients with any diagnosis in the last stages of life.
The education programme is able to cover a comprehensive
range of material necessary to explore a palliative approach within primary
care. It highlights all aspects of care and goes beyond physical symptom control
and management issues which could have easily become the focus of a standard GPT
education programme.
The three 2-hour education workshops cover areas such
as:
Delivery of the education sessions
utilises the expertise of the wider interdisciplinary team within the specialist
palliative care service and is supported by a resource manual of area-specific
information written by the interdisciplinary team.
Update sessions are an annual requirement of the
partnership; so far they have focused on case reviews and medication updates as
well as being used as a vehicle for introducing initiatives developed by the
specialist palliative care service.
Partnership administrationMIPA provides the administration support for the
partnership, this involves ensuring compliance with contractual requirements,
facilitating the ongoing education sessions, organising on going robust
evaluation, and administering the monetary payments to general practice
providers.
MidCentral District Health Board provided funding under the
following formula:
The Practice Nurse consultation
includes significant telephone consultations.
If need exceeds the $400 per patient limit, then
additional funding is negotiated between the provider and the project
coordinator.
Governance groupThe PCP working party now maintains a role as the management
group for the programme with administrative support provided by MIPA.
The governance is shared, with the Arohanui Hospice
Community Reference Group providing the palliative care philosophical direction
and the recently formed Midcentral DHB Cancer District Management Group
responsible for the long-term sustainability of the partnership.
OutcomesDuring 2005, a provider feedback survey was conducted. This
survey suggested there has been a positive change in the culture of palliative
care service delivery in the primary care setting.
Outcomes so far can be explained using the following
themes.
ParticipationRecruitment of MidCentral District general practice teams
for the programme was done through MIPA networks and the project
coordinator.
CommunicationBoth GPTs and PCCs response to the staff survey (Figure 2)
suggested that historically the relationship had generally been a good one and
that communication had improved since the introduction of the partnership
programme. Specifically, more face-to-face and telephone contact resulted in
their relationship having a greater sense of partnership.
I
think that there is more of a partnership feel in the care, less of patients
being taken over (GP)
It
has opened the door for freer [sic] communication (PCC)
Some GPTs’ responses still suggested that Hospice
‘take over’ was still a concern, but comments from the PCCs
suggested that (in terms of ways of working) they were much more likely to
involve GPT involvement than in the past.
Figure 2. Effectiveness of communication
 Professional developmentThe training component of the programme appears to have been
well received by the GPTs and well supported by the PCCs themselves (Figure 3).
Feedback from the survey indicated that the training
programme had two main benefits; the first being enhanced knowledge and
confidence in management of patients with palliative care need and secondly
familiarity with the Hospice staff and its way of working:
[I]
feel more confident and more personally involved in treatment
management—more comfortable using hospice and discussing progress with
staff (GP)
FundingThe project is well within budget for the first year.
GPT feedback suggests that the removal of cost as a barrier
to visiting the general practitioner may have been a significant component in
the success of this programme. From the GPT perspective, it has meant that
general practitioners felt more comfortable about visiting palliative care
patients knowing that they don’t have to charge.
Figure 3. Opinions on the effectiveness of
training
 Hospice impactReferrals to the specialist palliative care outpatient
clinics have decreased, however their complexity increased. This suggests a
greater number of less complex problems are being resolved in the
community.
Patient impactIn the first 14 months, 255 patients were part of the
partnership. Of these, 82.5% were cancer patients, 8.2% were cardiovascular
disease patients, 3.9% were respiratory patients, and 6.1% had another
(including renal, dementia, and neurological) disease. Approximately 60% of
partnership patient deaths occurred in the community; very few occurred within
the hospital setting [<5%].
LinkagesAn important (though unexpected) outcome has been the
strengthening of service relationships with the Midcentral Health District
Nursing Service via increased communication and teamwork with general practice
and hospice staff. The coordination role of the PCC has been pivotal to this
enhancement.
The limited evaluation completed in 2005 has not addressed
the impact of the partnership on patients and families or fully addressed the
impact on providers.
The Midcentral District Health Board and the working party
are currently working with the Wellington School of Medicine to develop a robust
and detailed reporting and evaluation package that will examine the outcomes of
the partnership in much greater depth. This process will be completed in late
2006.
SummaryThe care of patients with palliative care needs presents us
with considerable challenges. This partnership initiative supports and enhances
the provision of palliative care by both specialist and generalist providers
within our region. The patient and
family/whānau
remain at the centre of this partnership, and the special relationship between
the patient and their primary healthcare providers is maintained and integrated
within the provision of palliative care. Coordination of care between providers
is a key element of effective palliative care provision.
While more evaluation is required, early indications suggest
that the main benefits to emerge from this partnership (at the
‘coalface’) are effective communication, a better understanding and
respect of roles, and responsibilities between providers, which enhances patient
choice and coordination of their care. In this regard, the partnership has
partly met its original goals.
A factor that has helped provide a sound foundation for this
programmes is the often under-recognised administration component. Utilising the
networks of a well-organised IPA, the partnership has succeeded in achieving a
73% participation rate for GPTs, which is impressive by any standards.
Other spin-offs include consolidation of Arohanui
Hospice’s role as a provider of community palliative care education, and
(through the PCP management group) a forum to address ongoing interface issues
such as after hours care, referral criteria, or scope of practice.
Another benefit has been the recognition by the MidCentral
District Health Board of the value of such a partnership in the provision of
community palliative care. This recognition is important to the partnerships
long-term sustainability.
The success of this integrated care model has attracted
interest from outside the Midcentral region. For instance, in July 2005,
representatives of the PCP working party were invited to present the partnership
model to the Hawke’s Bay District Health Board’s Community Public
Health Advisory Committee.
We believe that this model has relevance across a broad
spectrum of primary/secondary interfaces, not just palliative care. Indeed, the
model could be adapted for use as a blueprint for a wide range of health
services.
The detailed reporting and evaluation to be undertaken in
2006 will, we believe, validate the approach taken with this model further
enhancing its position as an integration model.
Author information:
Bruce D Stewart, General Practitioner, Feilding; Simon G Allan, Director,
Palliative Care Arohanui Hospice, Palmerston North; Barry Keane, Director of
Clinical Services, Arohanui Hospice, Palmerston North; Bridget M Marshall,
Palliative Care Nurse Educator, Arohanui Hospice Palmerston North; Jane Ayling,
Clinical Practice Facilitator, Manawatu Independent Practice Association,
Palmerston North; Tai Luxford, Palliative Care Co-ordinator, Arohanui Hospice,
Palmerston North
Correspondence: Dr
Bruce Stewart, Aorangi Health Centre, PO Box 507, Feilding. Email: b.stewart@xtra.co.nz
References:
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