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A palliative care approach for people with advanced heart failure: recognition of need, transitions in care and impact on patients, family carers and clinicians

Research output: ThesisDoctoral Thesis

Publication date1/08/2013
Number of pages347
Awarding Institution
  • University of Hull
  • University of Hull
<mark>Original language</mark>English


Background: Despite international and national consensus guidelines, patients with advanced heart failure (HF) have significant unmet palliative care needs. UK policy recommends identification of those requiring palliative care based on prognosis (last year of life). However, HF has an unpredictable course, and clinicians might not discuss a palliative approach for fear of causing alarm and destroying hope.

Aim: To explore aspects of a palliative care approach for people with advanced HF: recognition of need, transitions in care and impact on patients, family carers and clinicians.

Methods: Mixed method study with integration of findings. Systematic literature review of prognostic variables associated with the last year of life in HF. Analysis of General Practice Research Database (GPRD) records to compare recognition of the need for palliative care between cancer and HF patients. Qualitative semi-structured interviews with patients receiving a palliative approach to care, their carers and clinicians.

Findings: GPRD data demonstrated gross inequity between documented recognition of the need for a palliative care approach; HF 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 problem-based flexible approach to recognising the need for palliative care, rather than prognosis is recommended.