Experiences and perceptions of the role of palliative and end of life care in heart failure: A modified grounded theory study.

Abstract

Heart failure (HF) is a progressive, life-limiting illness affecting around 750,000 people in the UK, with a mortality rate of 50% within four years. A large body of qualitative research demonstrates variable quality of HF care at the end of life, difficulties in identifying the dying phase, poor communication, and a failure to achieve a ‘good’ death. However little is known about the assessment of the need for palliative care, the recognition of the last days of life, or the extent to which these considerations are communicated to patients and carers and to the wider multi-disciplinary team. Greater understanding of the transition points from HF diagnosis to death may inform future service planning, including the most appropriate model of palliative care to apply to this patient group. Thus, the aim of this study was to explore experiences of giving or receiving a prognosis and managing the transition point from diagnosis to palliative and end of life care for those with HF.
The study involved two stages. The first was a systematic review of the uptake of the Liverpool Care Pathway (LCP) in order to assess current utilisation of end of life care pathways. The second utilised a modified constructivist grounded theory methodology to assess experiences of giving and receiving a prognosis, combining semi-structured interviews with clinicians, observations of clinic and home visit appointments, followed by a series of longitudinal semi-structured interviews with thirteen patients with HF and nine carers.
The systematic review demonstrated that the LCP was utilised for less than half of all dying patients. Interviews with clinicians revealed frustration and uncertainty about the contested nature of HF diagnosis and prognosis. Most clinicians rejected the concept of HF as a terminal illness in their everyday practice, and expressed uncertainty about roles and responsibilities for end of life care, alongside a reluctance to actively plan for end of life for individual patients. In contrast, some clinicians demonstrated the ability to deliver problem-based, individualised care but sometimes felt constrained by the perceived lack of multi-disciplinary advanced care planning. Most patients and carers talked about death and dying in general terms but felt that HF specific end of life considerations did not apply to them. They placed much more importance on understanding the emergence of their symptoms and negotiating everyday restrictions. Most patients had not made any decisions about advance care directives, and reported no prognostic discussions with clinicians. Overall, the majority of participants rejected notions of HF as a terminal illness in favour of day to day management and maintenance, despite obvious deteriorations in disease stage and needs over time.
This is the first known study exploring the experiences of prognostic communication at all stages of the HF disease trajectory. Findings raise questions regarding the pragmatic utility of the concept of HF as a terminal illness and have implications for future HF care pathway development. A key recommendation emerging from this study is that notions of prognosis should be ultimately rejected for HF care, and be replaced with a problem-based approach to care which combines elements of active and palliative care from diagnosis onwards, alongside regular assessments of communication preferences.