Authors' objectives: Cardiovascular disease is the most common cause of death worldwide, highlighting the need for studies to determine options for palliative care within the management of patients with heart failure. Although there are promising examples of integrated palliative care and heart failure interventions, there is heterogeneity in terms of countries, healthcare settings, multidisciplinary team delivery, modes of delivery and intervention components. Hence, this review is vital to identify what works, for whom and in what circumstances when integrating palliative care and heart failure. To (1) develop a programme theory of why, for whom and in what contexts desired outcomes occur; and (2) use the programme theory to co-produce with stakeholders key implications to inform best practice and future research. Cardiovascular disease is the most common cause of death worldwide and the most frequent cause of hospitalisation among individuals aged > 65 years. In 2012, heart failure (HF) was estimated to account for £22.5B of health expenditure globally; between 2012 and 2030 it is estimated that total costs will increase by 127%. Integrating palliative care (PC) with routine management of HF has been shown to significantly reduce healthcare costs overall compared to usual care (without PC) and significantly reduces the number of hospital visits and duration of inpatient stays. There is evidence of improved patient and informal caregiver outcomes when PC is integrated in HF management. Integrated palliative and HF care aims to achieve continuity of care by integrating administrative, organisational, and clinical services that make up the patients care network. However, two decades have passed since the first publication on the benefits of PC for patients with HF. The scarcity of effective integration of PC into HF management can be explained by a number of factors, including uncertainty around the HF disease trajectory and complexities of communicating this uncertainty to the patient and family members. The 2021 European Society of Cardiology (ESC) Guidelines for the diagnosis and treatment of acute and chronic HF highlighted the need for studies to determine specific options for PC within the treatment of HF. Although we have some promising examples of integrated PC and HF interventions, there is heterogeneity in terms of countries, healthcare settings, delivery and intervention components. Hence, this review is vital for identifying what works best, for whom and in what circumstances.

Authors' results and conclusions: In total, 1768 documents were identified, of which 1076 met the inclusion criteria. This was narrowed down to 130 included documents based on the programme theory and discussions with stakeholders. Our realist analysis developed and refined 6 overarching context–mechanism–outcome configurations and 30 sub context–mechanism–outcome configurations. The realist synthesis of the literature and stakeholder feedback helped uncover key intervention strategies most likely to support integration of palliative care into heart failure management. These included protected time for evidence-based palliative care education and choice of educational setting (e.g. online, face to face or hybrid), and the importance of increased awareness of the benefits of palliative care as key intervention strategies, the emotive and intellectual need for integrating palliative care and heart failure via credible champions, seeing direct patient benefit, and prioritising palliative care and heart failure guidelines in practice. The implications of our findings are further outlined in the capability, opportunity, motivation, behaviour model. Ongoing refinement of the programme theory at each stakeholder meeting allowed us to co-produce implications. These implications outline the required steps to ensure the core components and determinants of behaviour are in place so that all key players have the capacity, opportunity and motivation to integrate palliative care into heart failure management. A total of 1768 documents were identified, of which 1076 met the inclusion criteria for further screening. Based on programme theory and discussions with stakeholders, it was decided to refine the inclusion criteria further to align with the focus of the review leading to 130 documents being included. Our realist analysis developed and refined 6 overarching context–mechanism–outcome configurations with 30 sub CMOcs. We used the capability, opportunity, motivation, behaviour (COM-B) model to help identify intervention strategies needed to produce desired behaviours and avoid undesired behaviours. Although the COM-B model relates to individual behaviour change, it also considers team and organisational behaviour. For example, an individual’s capacity to carry out a specific behaviour also depends on the organisational culture they work within, and the opportunities afforded to them within their team and organisation. Ongoing refinement of the programme theory at each stakeholder meeting allowed us to co-produce implications. These implications outline the required steps to ensure the core components and determinants of behaviour are in place so that all key players have the capacity, opportunity and motivation to integrate PC into HF management. Integrated PC and HF services must be prioritised by senior decision-makers in the health and care system. Services must be adequately funded to ensure that staff are able to develop and run fully integrated PC and HF services. Service design should start with an assessment of the availability of PC and HF services in their locality (e.g. ‘postcode lottery’ issues) and find solutions. Services integrating PC into HF management must be provided which are reflective of the diversity of the whole population within the local healthcare context. Develop service delivery models that provide continuity of care for patients with HF including: reconfigured services to promote a multidisciplinary team (MDT) working between specialties and settings (including primary care) processes to monitor and address gaps in provision and caseloads processes to show the benefits (e.g. reduction in the need for inpatient care and cost-savings) of integrated PC and HF resources for all settings (e.g. primary and secondary care) and all audiences involved (e.g. patients, carers and clinicians) with clear and consistent messages about PC and HF. For example, develop a patient information leaflet, co-designed by PPI and engagement, to highlight what integrated PC in HF management is and when this might be suitable Develop guidelines for MDT meetings to identify who, when and how each of the below key decisions and action will be completed for each patient with HF: who is responsible for introducing PC to the patient and informal caregiver(s)? who will assess PC needs and how often (e.g. at every healthcare professional contact)? agreeing care plan (needs to be individualised to each patient) executing care plan reassessing care plan ensuring needs and care plans are communicated across settings and specialties ongoing evaluation including patient reported outcome measures, to enable refinement and benchmarking of guidelines/care pathway. Evaluate current PC education in UG and post-registration medical, nursing, allied health and social care (HSC) professional curriculum to identify deficits in the PC curriculum around caring for those with HF. Effective communications skills training is required across all levels of the curriculum in nursing, medicine and allied HSC professional education to ensure all have the means to communicate the value of PC and HF and provide ongoing care. Facilitate joint decision-making: Set up and run MDT meetings for those involved in PC and HF that enable members to develop trusting relationships, work collaboratively and learn from each other. Create active engagement by demonstrating the value of integrated PC in HF, for example, through the sharing of examples of good practice, for example through visits and placements. Develop effective patient PC education for individuals diagnosed with HF. Equip and enable all people involved with PC and HF (e.g. patients, consultants, nurses, informal carers) to champion the value and need for integrated PC and HF. Address public (mis)understanding of PC and HF through public health campaigns focused on raising awareness of PC as a holistic, wrap around care plan for improving QoL for those with HF.

Authors' methods: A realist review of the literature underpinned by the Realist and Meta-narrative Evidence Syntheses: Evolving Standards quality and reporting standards. Searches of bibliographic databases were conducted in November 2021 using the following databases: EMBASE, MEDLINE, PsycInfo, AMED, HMIC and CINAHL. Further relevant documents were identified via alerts and the stakeholder group. Realist review is a theory-orientated and explanatory approach to the synthesis of evidence. A realist synthesis was used to synthesise the evidence as successful implementation of integrated palliative care and heart failure depends on the context and people involved. The realist synthesis followed Pawson’s five iterative stages: (1) locating existing theories; (2) searching for evidence; (3) document selection; (4) extracting and organising data; and (5) synthesising the evidence and drawing conclusions. We recruited an international stakeholder group (n = 32), including National Health Service management, healthcare professionals involved in the delivery of palliative care and heart failure, policy and community groups, plus members of the public and patients, to advise and give us feedback throughout the project, along with Health Education England to disseminate findings. The realist approach to analysis means that findings are based on our interpretation of the data. To understand and make sense of the complexity of integrating PC in HF management, we used a RS approach to examine what works for whom, in what circumstances, how and why. RS is a theory-driven approach for understanding existing diverse sources of evidence relating to complex interventions. It is theory driven because it uses evidence to iteratively develop and test structurally coherent explanations (i.e. theories) of complex interventions. The methodology followed Pawson’s five iterative stages for RS: (1) locating existing theories; (2) searching for evidence; (3) selecting documents; (4) extracting and organising data; and (5) synthesising the evidence and drawing conclusions. The review ran for 22 months, from September 2021 to June 2023. Searches of bibliographic databases were conducted in November 2021 using the following databases: EMBASE, MEDLINE, PsycInfo, AMED (via Ovid), HMIC (via Ovid) and CINAHL (via EBSCOhost). Further relevant documents were identified via alerts and through our stakeholder group.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR131800

Year Published: 2024

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/FTRG5628

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: United Kingdom

DOI: 10.3310/FTRG5628

Organisation Name: NIHR Health and Social Care Delivery Program

Contact Name: Rhiannon Miller

Contact Email: rhiannon.m@prepress-projects.co.uk