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

Research output: Contribution to Journal/MagazineMeeting abstractpeer-review

Published
<mark>Journal publication date</mark>26/02/2014
<mark>Journal</mark>The Lancet
Issue numberSuppl. 1
Volume383
Number of pages1
Pages (from-to)S50
Publication StatusPublished
<mark>Original language</mark>English

Abstract

Background

Despite international and national consensus guidelines, patients with advanced heart failure have substantial unmet palliative care needs. UK policy recommends that identification of those requiring palliative care should be based on prognosis (last year of life). However, heart failure has an unpredictable course, and clinicians might not discuss a palliative approach for fear of causing alarm and destroying hope. We aimed to explore aspects of a palliative care approach for people with advanced heart failure and assessed recognition of need, transitions in care, and effect on patients, family carers, and clinicians.

Methods

This was a mixed method study with integration of findings. We did a systematic literature review of prognostic variables associated with the last year of life in heart failure, and analysed records from the General Practice Research Database (GPRD) to compare recognition of the need for palliative care between patients with cancer and patients with heart failure. Qualitative semistructured interviews were done with patients receiving a palliative approach to care, with their carers, and with clinicians.

Findings

GPRD data showed gross inequity in documented recognition of the need for a palliative care approach between patients with cancer and patients with heart failure: patients with heart failure were poorly represented on the palliative care register, and those who were represented, were registered close to death. Prognostic markers, identified in both the systematic review and the GPRD, had little clinical usefulness for identifying the last year of life. From interview data, clinicians seemed reluctant to discuss a palliative care approach without clear irreversible deterioration of the patient. However, patients welcomed, and some initiated, conversations about the change in focus of care. After such discussion, patients, carers, and clinicians 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.

Interpretation

A palliative care approach before the very end of life is beneficial in patients with heart failure. A problem-based flexible approach to recognising the need for palliative care, rather than prognosis, is recommended.