Background Patients with advanced heart failure have significant unmet palliative care needs. UK policy recommends identification of those requiring palliative care based on prognosis (last year of life).
Aim To explore aspects of a palliative care approach for people with advanced heart failure: recognition of need, transitions in care and impact on patients, family carers and clinicians.
Methods Systematic literature review of prognostic variables associated with the last year of life in heart failure. Secondary analysis of contemporaneously collected primary care records from a national database, to compare recognition of the need for palliative care between cancer and heart failure patients. Qualitative semi-structured interviews with patients receiving a palliative approach to care, their carers and clinicians. A mixed method approach with a concurrent triangulation strategy was used; each study was conducted separately and findings were integrated.
Findings General practice research database (GPRD) data demonstrated gross inequity between documented recognition of the need for a palliative care approach; heart failure patients were poorly represented on the palliative care register and those that were, were registered close to death. Prognostic markers, identified in both the systematic review and GPRD, had limited clinical usefulness for identifying the last year of life. From interview data, clinicians appeared reluctant to discuss a palliative care approach without clear irreversible deterioration of the patient. However, patients welcomed, and some initiated, conversations regarding the change in focus of care. Following such discussion all involved found this approach beneficial, even with subsequent periods of stability or improvement. Other barriers included lack of recognition of symptoms by clinicians and difficulties in delivering proactive care.
Conclusions A palliative care approach before the very end of life is beneficial in this group. A patient centred, problem-based flexible approach to recognising the need for palliative care, rather than prognosis is recommended.
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