The primary venue of care for patients diagnosed with cancer typically changes through the disease trajectory. Commonly, the initial cancer diagnosis will be made in a community setting and, as further investigative and management plans are established, care shifts to tertiary oncological centres. Inevitably, most patients will, at some point, deteriorate because of disease progression; when this occurs, there is often a transition back to primary healthcare. This evolves as oncological disease-modifying treatments may no longer be appropriate, but is also reflective of the desire of many patients and families for home-based care. This change is frequently accompanied by a shift in the onus for ongoing management from cancer services back to general practice.
Patients and general practitioners (GPs) support an increased role for GP follow-up of patients with cancer,1–3 with an emphasis on factors such as survivorship,4 symptom management, psychosocial care and palliative care. Benefits reported by patients include greater continuity of care, reduced need to travel and improved chance of dying at home.1,5
Advanced cancer is a term commonly used to describe a primary or secondary malignancy that is no longer curable.6 Patients with advanced cancers may still be having oncological treatments, but typically, the goal is no longer to cure. In this setting, referral for palliative care, either within the acute or community setting, is appropriate. Timely introduction of palliative care for patients with advanced malignancy is an important component of quality cancer care.7 Palliative care in this setting is multifactorial, incorporating management of physical symptoms, psychosocial and emotional support, and end-of-life care.
In Victoria, as in many other jurisdictions,8–11 provision of domiciliary palliative care relies primarily on collaboration between GPs and specialist community palliative care (CPC) providers with the availability of hospital-based specialist palliative care in some regions. CPC services are multidisciplinary, largely nursing-led, autonomous, geographically based healthcare providers. They provide support to patients with malignant and non-malignant diseases. Some services (particularly those in city and larger regional areas) have embedded specialist palliative medical staff, whereas smaller services variably use phone support as required. In the majority of cases, the GP will be at the centre of palliative care provision for patients and their families at home. Satisfaction has been reported by patients and GPs with GP-based palliative care.12,13
A series of facilitators and barriers to the provision of palliative care at home by GPs have been identified. Facilitating or enabling factors have included experience, communication skills, and established knowledge of the patient and family environment.11–13 Reported barriers include concerns around perceived lack of knowledge, especially with complex symptom management and psychosocial issues, and inability to provide 24-hour care.10,11
With this in mind, The Royal Melbourne Hospital (RMH), St Vincent’s Hospital (SVH) and Peter MacCallum Cancer Centre (PMCC) collaborated on a project funded by the Western and Central Melbourne Integrated Cancer Service (WCMICS) to improve GP engagement in supportive care for patients with advanced cancer. As part of the project, a needs analysis survey was conducted. The aim of the survey was to determine GPs’ current knowledge and views on factors influencing their capacity to provide palliative care at home, with particular emphasis on navigating the transition from acute hospital to ‘return-to-community’ care. This article presents findings from the survey.
Methods
A survey (Appendix 1, available online only) examining the extent to which GPs felt capable of managing palliative and supportive care issues for patients with advanced cancer was developed by the research team. It explored GPs’ perceptions of their role, and highlighted barriers and enablers in delivering palliative care within the community. The survey, which was available in electronic and paper-based forms, was promoted widely via Medicare Locals (now Primary Health Networks), Networking Health Victoria (NHV), and by email to local practice managers and GPs. These recipients in turn distributed the survey to their networks, akin to snowball sampling.14 Distribution took place through Victorian Medicare Locals’ newsletters, NHV’s newsletter and through various GP events. Involvement was voluntary and anonymous, and consent was inferred from survey completion. The project was approved by the RMH Human Research Ethics Committee as a quality assurance activity, and governance approval was obtained by SVH and PMCC (reference 2015076).
Results
Fifty-six surveys were completed; 87% of respondents practised in metropolitan centres and 13% were from rural areas. Fifty-seven per cent of respondents practised in the northern, western and inner Melbourne areas, reflecting the catchment areas of the RMH and SVH. Consistent with the methodology, response rate is not available. The vast majority of respondents (95%) indicated that they believed it was part of a GP’s role to care for patients with advanced cancer following hospital treatment. Eighty-two per cent reported caring for at least one palliative care patient in the preceding 12 months. Thirty-one per cent of respondents did not feel confident in providing care for palliative care patients. Common reasons for this included a lack of experience, high complexity of care, and a lack of support and poor communication from hospital services.
The most important factors for GPs to provide home-based palliative care for patients with advanced cancer were identified as availability of CPC services, access to hospital support, good communication with the hospital and other service providers, and access to palliative care management guidelines. Not surprisingly, some of the factors identified as essential to good palliative care at home were also identified as barriers when they were not done well. These included poor communication (63%), lack of guidelines (50%) and lack of knowledge about local services (39%; Table 1).
Table 1. Barriers to providing palliative care to patients with advanced cancer
|
Barriers identified
|
Respondents n (%)
|
|---|
|
Poor correspondence from hospitals
|
35 (63)
|
|
Lack of palliative care guidelines
|
28 (50)
|
|
Lack of information/poor communication
|
22 (39)
|
|
Lack of knowledge about local services
|
22 (39)
|
|
Lack of access to specialist telephone advice
|
21 (38)
|
|
Ability to provide home visits
|
20 (36)
|
|
Other*
|
15 (27)
|
|
*Included lack of training/experience, poor remuneration, inability to provide 24-hour care
|
Table 2 shows selected responses to survey questions. The majority of respondents (57%) did not routinely discuss end-of-life care or advanced care planning with their patients. Barriers to these discussions that were identified included lack of training, time and available guidelines. Most respondents were aware of community and hospital-based palliative care services in their areas. Almost half of the respondents knew about HealthPathways; however, only 32% of these respondents accessed them for clinical guidance and 20% for referral information. HealthPathways Melbourne15 is an online portal for GPs that provides evidence-based information on the assessment and management of common medical conditions, and referral information for local hospitals and community services. Thirty-four per cent used other websites for information, including eTG (Therapeutic Guidelines), eviQ Cancer treatments online and the PMCC website. Most respondents (89%) were interested in accessing further education in relation to palliative care patients with advanced cancer.
Table 2. Responses to selection of survey questions
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Survey question
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Positive response n (%)
|
|---|
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Do you routinely discuss and/or develop advance care plans/ end-of-life plans with your patients?
|
24 (43)
|
|
Are you aware of hospital-based palliative care services in your area and how to refer?
|
36 (64)
|
|
Are you aware of community-based palliative care services and how to refer?
|
40 (71)
|
|
Are you aware of HealthPathways?
|
25 (45)
|
|
Have you used HealthPathways for the assessment and management of your patients?
|
8 of 25 (32)
|
|
Have you used HealthPathways to obtain hospital or community service referral information?
|
5 of 25 (20)
|
|
Do you use any other websites to access information when caring for patients with advanced cancer?
|
19 (34)
|
|
Would you be interested in receiving information on common symptom management for palliative care patients with advanced cancer?
|
50 (89)
|
Discussion
Australian data suggest 60–70% of Australians wish to die at home;16 however, the likelihood of this occurring depends on adequate support at end of life for patients and their families. GPs are an integral component of this support framework, and this study provides insights into their ability to provide quality palliative care to patients at home. Consistent with other studies3,11,13,17,18 the majority of GPs in our survey believed they had a role to play in caring for patients with advanced cancer and had cared for a palliative care patient in the preceding 12 months. This level of support is consistent with previous work showing that GPs consider palliative care to be a central component of their work17 and also important in the context of community wishes about place of death.
Despite the involvement of most respondents with palliative care patients, a significant number indicated that they did not feel confident in managing these patients. Common reasons for this included lack of experience or knowledge, inability to provide 24-hour care, and lack of information or poor communication between healthcare providers. These findings mirror previous national and international findings.3,10,11,13,19 Groot et al,13 in a qualitative focus group study of Dutch GPs, trichotomised barriers experienced when working with palliative care patients into personal, relational and organisational. Personal barriers included perceived competence, emotions and time; relational barriers referred predominantly to communication and collaboration; organisational barriers included factors such as bureaucracy and compartmentalisation of healthcare services. In our survey, many of the barriers reported by respondents could be similarly categorised. The advantages of applying this framework include improved clarity as to the nature and scope of individual barriers, and strategies that might be used to enable improved GP integration in the palliative care of patients with advanced cancer at home.
One proposed strategy to optimise the provision of quality community-based palliative care has been the development of collaborative, integrative models incorporating generalist and specialist palliative care providers.8,9 While variation has been demonstrated as to the nature and application of these models, a systematic review investigating the interface between generalist and specialist palliative care provision identified five core enhancers of the relationship. These were good communication between providers, opportunities for education, clear definition of roles and responsibilities, access to specialist palliative care, and coordinated and continuous support.9 These factors summarise many of the enablers and barriers identified in the current and previous studies, and highlight important areas for ongoing development. Collaborative models between generalist and specialist palliative care have demonstrated outcomes of improved symptom control, increased likelihood of patients dying in their preferred venue, and have proven to be economically viable.9
There are several limitations associated with this survey. The small sample size meant the relatively high number of GPs involved with palliative care patients may have been influenced by sampling bias. Additionally, snowball sampling meant a survey response rate could not be determined and, therefore, it was not possible to evaluate the potential biasing effect of non-responders on the results. It is acknowledged that the small sample size potentially limits applicability of the results; however, the wide survey distribution, voluntary nature of involvement and fact that the results mirror previous findings support generalisability to other primary care health networks. This could be evaluated further by using a multicentre design.
The survey examined only one aspect of managing patients with advanced cancer, namely palliative care. It is known that GPs have varying degrees of interest and/or involvement when it comes to other aspects of cancer care,3 including ongoing surveillance and management of treatment side effects. Importantly, however, as one component of a wider project to improve GP integration in cancer supportive care, this survey provided important feedback allowing several recommendations and resulting actions to be taken.20 These included:
- Improved communication between healthcare providers (eg hospital, GP, CPC services). This included revised palliative care referral pathways outlined in HealthPathways Melbourne and development of a GP e-template letter to enable adequate information to be sent from hospital-based palliative care consultancy services to the patient’s GP.
- Improved access to information by developing a palliative care resource pack for GPs in HealthPathways Melbourne15 (including gaps in information as outlined by respondents).
- Facilitation of GP education in identified gap areas (including end-of-life care and advance care planning) to improve knowledge and skills. A professional development session was conducted in partnership with Decision Assist and North Western Melbourne Primary Health Network. Decision Assist provides online learning modules and education sessions for health professionals around Australia.21
Implications for general practice
Although small, our survey confirms previous findings and provides an additional Australian perspective on the enablers and barriers that influence the role of GPs in the provision of community-based palliative care. It is clear that appropriate resources and support are essential in empowering GPs to confidently provide palliative care at home for patients with advanced cancer.
Professional development education sessions along with improved resources, such as HealthPathways Melbourne, allow GPs access to contemporaneous information on assessment, management and referral for palliative care patients. Hospital palliative care units and CPC services are well placed to provide information and support to GPs to assist with caring for these patients. With adequate communication from hospitals and CPC services, GPs can be supported to continue to provide high-quality palliative care within the community and facilitate death at home if this is the patient’s preference.
Authors
Brian Le MBBS (Hons), MPH, FRACP, FAChPM, Director of Palliative Care, Victorian Comprehensive Cancer Centre, Department of Medicine, University of Melbourne, Parkville, Vic
Peter Eastman BPhysio, MBBS, FRACGP, FAChPM, Palliative care consultant, Melbourne Health and Barwon Health, The Royal Melbourne Hospital, Parkville, Vic; The Geelong Hospital, Geelong, Vic. eastman@gmp.usyd.edu.au
Sita Vij BSc, MBA, GP Liaison Coordinator & Project Manager, St Vincent’s Hospital, Fitzroy, Vic
Fiona McCormack BAppSc (Nursing), Grad Dip Health Promotion, Community Partnerships Coordinator – Melbourne Health, The Royal Melbourne Hospital, Carlton South, Vic
Cuong Duong MBBS, PhD, FRACS. Upper GI surgeon, Peter MacCallum Cancer Institute, Parkville, Vic
Jennifer Philip PhD, FAChPM, MMed, Grad Dip Pall Med, MBBS, Deputy Director of Palliative Medicine, St Vincent’s Hospital, Fitzroy, Vic; Co-Deputy Director Centre for Palliative Care, Department of Medicine, University of Melbourne, Parkville, Vic
Competing interests: None.
Provenance and peer review: Not commissioned, externally peer reviewed.
Funding source
The project ‘Improving general practitioner integration in cancer supportive care in advanced cancer’ was funded by the WCMICS.
Acknowledgements
The authors would like to acknowledge the following project advisory group members: Dr Paul Jenkinson, Dr Dave Isaac, Dr Sue Hookey, Di Saward, Tracey Mander, Fran Gore, and Ilana Hornung.