The general practitioner (GP) has a critical role in an integrated model of palliative care as they often know the patient and carer well, are experts in generalist care and have knowledge of health and social services in the community. Specialist palliative services have insufficient capacity to meet demand and those with non-cancer terminal conditions and those from rural and remote areas are underserved. Research has focused on improving access to palliative care by engaging the GP with specialist secondary services in integrated palliative care.
Objectives (1) Evaluate the effectiveness of interventions designed to engage GPs and specialist secondary services in integrated palliative care; and (2) identify the personal, system and structural barriers and facilitators to integrated palliative care.
Method MEDLINE, EMBASE and CINAHL were searched. Any study of a service that engaged the GP with specialist secondary services in the provision of palliative care was included. GP engagement was defined as any organised cooperation between the GP and specialist secondary services in the care of the patient including shared consultations, case conferences that involved at least both the GP and the specialist clinician and/or other secondary services, and/or any formal shared care arrangements between the GP and specialist services. The specialist secondary service is either a specialist palliative service or a service providing specialist care to a palliative population. A narrative framework was used to describe the findings.
Results 17 studies were included. There is some evidence that integrated palliative care can reduce hospitalisations and maintain functional status. There are substantial barriers to providing integrated care. Principles and facilitators of the provision of integrated palliative care are discussed.
Conclusions This is an emerging field and further research is required assessing the effectiveness of different models of integrated palliative care.
- Supportive care
- Integrated care
Statistics from Altmetric.com
Palliative care is delivered in a large range of settings including hospitals, hospices, nursing homes and at home. Palliative care is defined as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering.1 Generalist palliative care occurs when the patient's general practitioner (GP) applies their knowledge and skills to care for the patient, with referral when necessary to services that may assist. Specialist palliative care, generally from a hospital-based service, provides care to the patient and family and/or coordination and information to other healthcare providers (in hospital, oncologists, other specialist, aged care, hospice, nursing home) to assist them to provide support to the patient and family.2 Specialist secondary services, from a hospital-based or affiliated service, provide care to patients with a life-limiting illness and could be any specialist secondary service, for example, cardiac failure clinics, lung health service, respiratory service or palliative care service. Specialist palliative care services have insufficient capacity to meet the demands of caring for all dying people. This results in inequitable service provision, with patients suffering from non-cancer-related terminal conditions representing a small proportion of their caseload.3 Rural and remote patients and those from diverse cultural backgrounds are also under-represented in specialist palliative care services.3 ,4 Consequently, this research has focused on improving access to palliative care through the integration of primary and secondary specialist services.
Many governments are highlighting the need to deliver integrated care to improve quality, safety and cost-effectiveness of care.5–9 There are many definitions of integrated care and the term is often used interchangeably with integrated care pathways, transmural care, coordinated care, seamless care, case management and managed care.10 ,11 Integration can be used by different people to mean different things, and the meaning changes dependent on whose perspective is paramount.12 Integration can be defined for the user, the provider, the policymaker and the organisation, among others. It can be horizontal, linking similar levels of care, or vertical, linking different levels of care such as primary, secondary and tertiary.13 Integration of healthcare services can be thought of as a continuum, ranging from a fragmented health system where information about patients is not shared to a system where ‘integrated care is a concept bringing together inputs, delivery, management and organisation of services related to diagnosis, treatment, care and rehabilitation, and health promotion’.11 Researchers in England and the Netherlands defined integrated care as ‘an organisational process of coordination which seeks to achieve seamless and continuous care, tailored to the patients’ needs and based on a holistic view of the patient’.9 For the purposes of this review, integration is defined as any organisational process of coordination which seeks to engage a GP and a specialist secondary clinician and/or service, in the care of a patient at end of life.
The GP has a critical role in an integrated model of palliative care as they often know the patient well, they often are the carer's doctor or know the carer, they are experts in generalist care and they are aware of the formal and informal health and social services available in the community.14
The aim of the review was to identify the common principles and processes of care models that promote GP engagement in integrated palliative care with specialised secondary services. The objectives were to: (1) evaluate the effectiveness of interventions designed to engage GPs with specialist secondary services in integrated palliative care; and (2) identify the personal, system and structural barriers and facilitators to engaging GPs with relevant specialist secondary services in integrated palliative care.
A protocol was developed prior to starting the review. Integrated care in health is complex including different sectors, organisations, care settings and health professionals including the GP.15 A wide variety of studies was sought to enable a more comprehensive review. Any study of a service that engaged the GP with specialist secondary services in the provision of palliative care within the selection criteria was included.
Criteria for considering studies for this review
Types of studies
The review included randomised controlled trials (RCTs), controlled before and after studies and interrupted time series studies that evaluated the effectiveness of interventions that engaged GPs with specialist secondary services in the provision of integrated palliative care. Qualitative studies that elicited the views of service providers or service receivers about their experiences of integrated palliative care involving the GP and secondary services and qualitative studies that reported intervention development, descriptions, implementation and process evaluation were included. Mixed-method studies were also included. Studies that were in a language other than English were excluded. No date limits were applied.
Types of participants
Only studies involving adults (aged 18 years or older) receiving services through their GP, specialist hospital services or an integrated model of care were included. Specialist secondary services could be any specialist secondary service, if they were providing care to a palliative population. Relevant stakeholders included were GPs involved in providing palliative care, secondary specialist services providers offering care to palliative patients included, but were not limited to nurses, medical specialists and allied health professionals, patients and their families/carers and community-based services.
Types of interventions
The intervention was integrated care for palliative patients, including shared consultations, case conferences that involved at least the GP and the specialist clinician and/or secondary services, and/or any formal shared care arrangements between the GP and specialist services. The comparator was standard care or ‘care as usual’, which may be primary care only, secondary care services only or a non-integrated approach to care. The WHO's definition of palliative care1 was used to define palliative care to allow for the most comprehensive analysis of the literature.
Types of outcome measures
The outcomes were (1) measures of the effectiveness of integrated care including place of death, advanced care plans in place, symptom management, hospital admission, length of stay in hospital, depression, anxiety, patient functional status, health-related quality of life, carer well-being; and (2) an analysis of the personal, system and structural barriers or facilitators to GP engagement with secondary services in that care.
Search methods for identification of studies
The following electronic databases were searched using MeSH terms/subject headings for MEDLINE as detailed in table 1 and modified for each database.
MEDLINE (1946 to November 2014),
EMBASE (1966 to November 2014) and
CINAHL (1982 to November 2014).
Searching other resources
Additional records were identified through references of included articles and relevant reviews. A cited reference search for included studies was conducted, as well as ‘related article’ searches in MEDLINE for included studies. Hand searching of key journals and a search of Government reports, specifically searched by organisation and topic (eg, the WHO and palliative care), and conference proceedings was also conducted.
Data collection and analysis
Selection of studies
Records identified from different sources were imported into one database using reference management software and duplicates were removed. Two review authors independently assessed the titles and abstracts of the identified records. Studies that clearly did not meet the inclusion criteria on review of the title and abstract were excluded, and all possible relevant citations were retrieved. Two reviewers independently assessed the eligibility of the papers for inclusion in the review. Disagreements were resolved by discussion between the two reviewers, with arbitration by a third reviewer when required.
Data extraction and management
Data were extracted using a standardised form and included participant demographics and health status, setting (location, provider, site), methods (design, data collection, analysis), intervention (context, funding, attributes, duration, configuration), control group comparator intervention (context, funding, attributes, duration, configuration) and outcomes (effectiveness, barriers, facilitators, translation to practice). Disagreements were resolved by discussion by two reviewers and, when required by arbitration, with a third reviewer.
Assessment of quality
Two review authors independently evaluated the risk of bias of each included study. Disagreements were resolved by discussion or arbitration by a third person. Each included study was evaluated using the most relevant tool for the study design. Qualitative work was evaluated using the Critical Appraisal Skills Programme (CASP),16 which uses 10 questions that considered sampling, methods of data collection, sufficiency of data and discussion of the evidence. Narrative studies were evaluated using the Joanna Briggs Institutes Narrative, Opinion and Text Assessment and Review Instrument (JBI NOTARI), which is a critical appraisal tool with six questions focused on logic, clarity and expertise (1).17 Cohort studies were assessed using the CASP,16 which uses 12 questions that consider validity, results and relevance. RCTs were assessed using the Jadad (2) tool which has five questions assessing randomisation, blinding and participant tracking.18 Surveys were assessed using the Critical Appraisal of a Survey which uses 12 questions to assess validity, results and relevance.19 The quality of the articles was considered and discussed in the synthesis of the data.
Studies were grouped according to the type of setting, type of intervention and study design. With few RCTs included, meta-analysis was unsuitable. A narrative framework20 was used to describe the findings.
The search produced 593 records and an additional 31 records were identified through reference list checks. After screening of the studies, 17 studies were included in the review, as depicted in the PRISMA flow diagram in figure 1.21 Sixteen studies were of a high quality, and one of average quality. Three of the studies were RCTs. In addition, one cohort study, four surveys, seven qualitative studies and two descriptive narrative studies were identified. A number of studies did not include intervention and control comparisons, instead describing current care within a geographical boundary. All studies involved engagement of general practice with specialist secondary services in the provision of care to palliative patients. Twelve studies were based in metropolitan areas, and five studies included rural areas. Specialist secondary services were palliative care services, a heart failure clinic, a heart failure and lung health service and a respiratory service. Patients were diagnosed with a primary disease including cancer, cardiovascular disease, heart failure, respiratory disease and renal failure, and one study included dementia and neurological disease. Interventions included shared care, case conferences, home visits to the patient with both the specialist team and the GP attending and the use of a good practice framework (the Gold Standards Framework). The details of all included studies are listed in table 2.
Effectiveness of GP engagement with specialist secondary services in the integration of palliative care
GP engagement with specialist secondary services in the provision of palliative care has a positive impact in some areas (table 3). Although little quantitative work has been completed in GP engagement in the integration of primary and secondary services in the provision of palliative care, studies showed a significant decrease in number of hospital admissions (p=0.0069; p=0.001).2 ,22 ,23 Case conferences and shared care were both effective in reducing hospitalisations and in significantly (p<0.05) reducing the length of hospital stay.22 ,23 There was some evidence that patient functional status as measured by the Australian-modified Karnofsky Performance Scale (AKPS) was better maintained by patients receiving integrated care when performance status had already declined below a score of 70 (p=0.0425).2 When performance status was measured via self-report surveys, significant improvement (p=0.015) accrued for those receiving integrated care.22 However, quantitative studies showed no measured improvement in quality of life or symptom burden.2 ,24 A survey of GPs also found improved pain management, symptom control and increased security for patient and family.25 Surveys and qualitative assessment of patients exposed to GP engagement with secondary services in integrated care at the end of life, case conferences, home conferences and a good practice framework showed improvements in communication,26–28 relationships between services,26–28 professional development25 ,26 and patient-perceived benefits (pain management, symptom control, security).25 ,27
Facilitators to engagement of GPs with specialist secondary services in integration of palliative care
Enabling GP engagement in integrated palliative care with relevant specialist secondary services requires effective communication 29 ,30 (see table 4). Communication needs to be timely with an appropriate level of detail.30 GPs indicated that receiving patient information electronically would be useful in enabling shared care.30 It is also necessary that communication occurs with the most relevant people for the information being involved in the exchange.30 Another facilitator to integrated care is clear role definition. Although roles of professionals may change for each patient, it is important that the roles are clearly defined and understood by all involved.29 ,31 It was suggested that clearly defined roles would also aid communication. The availability of the GP to the patient and carer is also important.32 When the GP is accessible through prompt appointments and telephone contact for medical care and referral and can provide emotional and family support, the GP becomes an integral part of the patient's care which enables the integration of primary and secondary care.32 There is a family expectation that the GP will be involved. Even when the family feels that they are the key persons in caring for the patient, they still have an expectation that the GP will be involved in providing medical care and emotional and family support.31 Finally, to facilitate integrated care, the process should be organised and initiated by the specialist secondary service.29 It was found that the most systematic and successful partnerships were established by the specialist service.
Barriers to GP engagement with specialist secondary services in integration of palliative care
There are five overarching barriers to engaging GPs with secondary services in integrated palliative care: health system barriers, communication barriers, process barriers, content barriers and other barriers (see table 5). Health system barriers include financial constraints for the GP and the hospital, workload, lack of standardised documents and systems, bureaucratic procedures, professional silos, lack of services and lack of infrastructure.25 ,27 ,29 ,32–35 Process barriers include roles within integrated care not being clearly defined, barriers to sharing information, health professionals' perceived lack of time, ambiguity around who should be involved, and communication and technology issues.29 ,31–34 ,36 Communication can be a barrier, with poor communication creating personal issues (trust, poor relationships) between relatives and patients, lack of patient or family understanding of discussions with healthcare professionals, the quality of the relationship between the patient and the professionals, and a sometimes competitive or combative relationship between health professionals.25 ,29 ,35 ,37 The engagement of integrated care can provide a barrier when there is a lack of clarity of purpose (eg, future planning, acute medical issue), and participants being unprepared, either with not receiving information, or not reading the information prior to the meeting.25 ,36 Other barriers documented by health professionals as challenges include late referral, lack of understanding of patient prognosis by family, as well as medical professionals underestimating the seriousness of the patient's condition and therefore overestimating prognosis.32 ,34
Process and principles that facilitate GP engagement with specialist secondary services in the integration of palliative care
The processes and principles of integrated primary and secondary care provide some common elements to facilitate the provision of palliative care (table 6). Communication is required,26 ,28 providing an equitable status, or an equal respect and authority between all participants. Communication builds partnerships. To adequately provide palliative care, patients at risk of dying need to be deliberately identified.34 It has been noted that it is easier to identify patients with cancer who are palliative than those without.34 Providing a systematic method of screening patients for palliative needs is the first step. A structure or framework of patient pathways is necessary with built-in flexibility for real-world adaption.28 ,33 ,34 Referral pathways, provision of care after hours, primary contact details and management plans should find a place within the framework. Professional development is a necessary part of integrated care with training improving knowledge and confidence for the care providers.33 These principles are common across the research and are reflected in the facilitators and barriers that were identified in the provision of integrated palliative care.38
The review found evidence that engaging GPs in palliative care with relevant specialised secondary services is effective and provides positive outcomes for the hospital (reduced readmissions, shortened length of stay) and for the patient (pain management, symptom control, functional status). Interventions that used case conferences between specialist secondary services and GPs were effective in reducing hospital admissions and reducing length of stay as well as improving functional status. Specialist secondary services in these case conferences included a palliative service and a heart failure and lung health service. Shared care provided by a heart failure management clinic and GPs provided similar results. Additionally, conferences between specialist secondary palliative services and GPs at the patient's home improved pain control and symptomatology. Integration of GPs and specialist services serving palliative patients are effective.
The health system requires change if GPs are to engage with specialist secondary services to provide integrated palliative care. A common computer system and standard documents would enable services to share information and build care plans. There are many challenges in creating a system to share patient information between services, not limited to interoperability between systems, security, data ownership, confidentiality and privacy and compliance with legislation.39 Where standardised documentation exists, integration would be unlikely to face as many challenges, in the first instance. There is a drive to shared digital medical records occurring in many countries including Australia, New Zealand, Canada and Europe40–43 and this initiative will, in the future, facilitate integrated care and overcome these barriers.
Financial challenges need to be solved. Funding for specialist secondary services to provide palliative care, to provide the infrastructure and technology required within the primary and secondary care services to facilitate integration, and to provide training to encourage integration of palliative services should be considered. Excessive workloads28 were also identified as a system challenge to be solved. Funding for extra staff may solve this issue. Savings found in reduced admissions to hospital and reduced length of admission to hospital by providing integrated palliative care2 ,22 ,23 could offset these financial challenges. It may be that more resources directed to this sort of care may generate more demand.
Integrated care should be clearly defined and procedures should be amended to promote integrated care, encouraging sharing of information and files and adjusting workload to support integrated care. However, this review has shown that these changes are yet to occur and that, even without these changes to the health system, it is still possible to provide integrated primary and secondary care at end of life, albeit with considerable difficulties. Factors were identified that will facilitate an effective intervention.
There are limitations within the review. The review used an inclusive definition of integrated care, with coordinated care and shared care models analysed in most articles. A further limitation is that there are relatively few studies assessing the engagement of GPs with specialised secondary services in integrated palliative care. This is an emerging area of research in the past 15 years, with no research prior to 2000 in this area, so this finding is unsurprising.
Further higher level evidence from RCTs needs to be conducted to assess the effectiveness of different models of GP engagement with specialist secondary services in the provision of integrated palliative care. Qualitative work to explore the process of implementation of integrated models of palliative care across different healthcare systems would inform researchers and policymakers and facilitate evidence-based practice. The long-term sustainability of an integrated approach to palliative care provision between primary and secondary care has yet to be investigated. Research should also be broadened to include those specialist secondary services that work with palliative patients, such as geriatrics or neurology, which did not appear in this literature review. This review provides a cohesive analysis of existing work on which to build this emerging field.
The authors thank Lars Erikson for assistance with verifying the search strategy. The authors also thank the Centre for Research Excellence Quality and Safety in Integrated Primary/Secondary Care and the Ipswich Hospital Foundation for providing scholarship funding for S-AC.
Contributors SC, GM, HS and MF planned the study. SC conducted the search. SC, GM and HS reviewed the included research. SC, GM, HS and MF contributed to the final manuscript and are responsible for the content. SC submitted the manuscript.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.