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Cited by 2 publications
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A 64-year-old woman with metastatic rectal cancer is admitted to the acute palliative care unit of our cancer center because of debilitating fatigue. She had been diagnosed with metastatic disease in 2009, when liver metastases were found 1 year after the primary treatment of her rectal cancer with preoperative radiotherapy and low anterior resection. Since then, she had been treated with resection of liver metastases in 2009 and 2010, palliative combination chemotherapy (oxaliplatin plus capecitabine) after the diagnosis of new liver and lung metastases in 2010, irinotecan in 2011, and then cetuximab until progression. She declined participation in a phase I clinical trial because she was afraid of experiencing adverse effects; she felt relatively well at the time. She had functioned without hindering symptoms until 2 weeks before admission. Her condition had deteriorated markedly since then. At admission, she is bedridden because of progressive fatigue. Furthermore, she complains of dyspnea and nausea and vomits approximately twice per day. She also suffers from pain in the upper abdomen, especially when rising from the bed. She is no longer able to care for her 84-year-old husband or her 40-year-old mentally disabled son, who lives with them. She is aware of her poor prognosis but is not able to share her sorrows with her family.
A 64-year-old woman with metastatic rectal cancer is admitted to the acute palliative care unit of our cancer center because of debilitating fatigue. She had been diagnosed with metastatic disease in 2009, when liver metastases were found 1 year after the primary treatment of her rectal cancer with preoperative radiotherapy and low anterior resection. Since then, she had been treated with resection of liver metastases in 2009 and 2010, palliative combination chemotherapy (oxaliplatin plus capecitabine) after the diagnosis of new liver and lung metastases in 2010, irinotecan in 2011, and then cetuximab until progression. She declined participation in a phase I clinical trial because she was afraid of experiencing adverse effects; she felt relatively well at the time. She had functioned without hindering symptoms until 2 weeks before admission. Her condition had deteriorated markedly since then. At admission, she is bedridden because of progressive fatigue. Furthermore, she complains of dyspnea and nausea and vomits approximately twice per day. She also suffers from pain in the upper abdomen, especially when rising from the bed. She is no longer able to care for her 84-year-old husband or her 40-year-old mentally disabled son, who lives with them. She is aware of her poor prognosis but is not able to share her sorrows with her family.
Integrating Palliative Care and Heart Failure: the PalliatHeartSynthesis realist synthesis
Background 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. Objectives 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. Design A realist review of the literature underpinned by the Realist and Meta-narrative Evidence Syntheses: Evolving Standards quality and reporting standards. Data sources 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. Review methods 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. Results 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. Limitations The realist approach to analysis means that findings are based on our interpretation of the data. Future work Future work should use the implications to initiate and optimise palliative care in heart failure management. Conclusion 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. Study registration This study is registered as PROSPERO CRD42021240185. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR131800) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 34. See the NIHR Funding and Awards website for further award information.
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