“Sometimes we can’t fix things”: a qualitative study of health care professionals’ perceptions of end of life care for patients with heart failure

Abstract

BackgroundAlthough heart failure has a worse prognosis than some cancers, patients often have restricted access to well-developed end of life (EoL) models of care. Studies show that patients with advanced heart failure may have a poor understanding of their condition and its outcome and, therefore, miss opportunities to discuss their wishes for EoL care and preferred place of death. We aimed to explore the perceptions and experiences of health care professionals (HCPs) working with patients with heart failure around EoL care.MethodsA qualitative in-depth interview study nested in a wider ethnographic study of unplanned admissions in patients with heart failure (HoldFAST). We interviewed 24 HCPs across primary, secondary and community care in three locations in England, UK – the Midlands, South Central and South West.ResultsThe study revealed three issues impacting on EoL care for heart failure patients. Firstly, HCPs discussed approaches to communicating with patients about death and highlighted the challenges involved. HCPs would like to have conversations with patients and families about death and dying but are aware that patient preferences are not easy to predict. Secondly, professionals acknowledged difficulties recognising when patients have reached the end of their life. Lack of communication between patients and professionals can result in situations where inappropriate treatment takes place at the end of patients’ lives. Thirdly, HCPs discussed the struggle to find alternatives to hospital admission for patients at the end of their life. Patients may be hospitalised because of a lack of planning which would enable them to die at home, if they so wished.ConclusionsThe HCPs regarded opportunities for patients with heart failure to have ongoing discussions about their EoL care with clinicians they know as essential. These key professionals can help co-ordinate care and support in the terminal phase of the condition. Links between heart failure teams and specialist palliative care services appear to benefit patients, and further sharing of expertise between teams is recommended. Further research is needed to develop prognostic models to indicate when a transition to palliation is required and to evaluate specialist palliative care services where heart failure patients are included.

Perceptions and types of support coming from families caring for patients suffering from advanced illness in Kinshasa, Democratic Republic of Congo

“…A preoccupation reflected by participants in the study was the lack of communication between caregivers and patients, which mainly involves doctors who do not clearly communicate information on the stage of the disease. Such results corroborate the observations of Glogowska (16) regarding the conversation on advanced illness of patients. In palliative care, communication is an efficient therapeutic resource (17)(18)(19).…”

Inadequate Communication Exacerbates the Support Needs of Current and Bereaved Caregivers in Advanced Heart Failure and Impedes Shared Decision-making

“…5,6 In this context, prognostication can present practical challenges, 7,8 and the symptom burden associated with HF makes it a complex condition for healthcare professionals to clinically manage. Often, clinicians, patients, and caregivers are unaware of the poor prognosis, 9,10 mitigating the potential for end-of-life conversations, such as patients" preferred place of death. 7 Evidence indicates that, given a choice, most people would prefer to be cared for and die at home.…”

Implementation of interventions to reduce preventable hospital admissions for cardiovascular or respiratory conditions: an evidence map and realist synthesis

“…Five UK qualitative papers were identified. Four of these papers reported findings from the HoldFAST study, [126][127][128][129] and some of those identified were not from the mapping review but from supplementary follow-up of citations and references. The HoldFAST study was a multicentre study co-ordinated across the University of Bristol, the University of Oxford and Keele University and funded by NIHR.…”

“…132 Both primary and secondary care physicians in the HoldFAST study acknowledged that they were unsure about what services were available or that there were few services on which they could call. 129 People with chronic conditions may also use health services inappropriately, delaying their presentation to a GP or hospital (PT4) because of perceptions of the service either anticipated or based on the past experience of either themselves or others. Some patients may also feel a reluctance to seek medical advice if they perceive that their previous actions may have contributed to their condition (as in the case of smoking and COPD 131 ).…”

“…Continuity of care is, by implication, associated with appropriate targeting of health-care facilities and resources. 129 Other situational factors, not catered for by generic patient education, include when families are struggling to manage patients at home or patients are living alone without sufficient support.…”