Should heart failure be regarded as a terminal illness requiring palliative care? A study of heart failure patients’, carers’ and clinicians’ understanding of heart failure prognosis and its management

Stocker, Rachel; Close, Helen; Hancock, Helen; Hungin, A. P. S.

doi:10.1136/bmjspcare-2016-001286

Cited by 19 publications

(17 citation statements)

References 17 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This may be a phenomenon that is unique to people who experience intermittent decline. Our findings corroborate prior studies; in a study of older adults with advanced heart failure, Klindworth and colleagues found that older patients do not perceive heart failure as a life‐limiting illness . In a longitudinal study of patients with advanced chronic obstructive pulmonary disease, an advanced illness with a similar illness trajectory to heart failure, Pinnock and colleagues found that patients reported having been ‘restored to normal and the threat had receded’ following an exacerbation .…”

Section: Discussionsupporting

confidence: 90%

‘The Future is Probably Now’: Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers

Mak

Upshur

et al. 2019

Health Expectations

View full text Add to dashboard Cite

Background Earlier end‐of‐life communication is critical for people with heart failure given the uncertainty and high‐risk of mortality in illness. Despite this, end‐of‐life communication is uncommon in heart failure. Left unaddressed, lack of end‐of‐life discussions can lead to discordant care at the end of life. Objective This study explores patients' and caregivers’ understanding of illness, experiences of uncertainty, and perceptions of end‐of‐life discussions in advanced illness. Design Interpretive descriptive qualitative study of older adults with heart failure and family caregivers. Fourteen semi‐structured interviews were conducted with 19 participants in Ontario, Canada. Interviews were transcribed verbatim and content analysis was used to analyse the data. Main results Understanding of illness was shaped by participants’ illness‐related experiences (e.g. symptoms, hospitalizations and self‐care routines) and the ability to adapt to challenges of illness. Participants were knowledgeable of heart failure management, and yet, were limited in their understanding of the consequences of illness. Participants adapted to the challenges of illness which appeared to influence their perception of overall health. Uncertainty reflected participants’ inability to connect manifestations of heart failure as part of the progression of illness towards the end of life. Most participants had not engaged in prior end‐of‐life discussions. Conclusion Detailed knowledge of heart failure management does not necessarily translate to an understanding of the consequences of illness. The ability to adapt to illness‐related challenges may delay older adults and family caregivers from engaging in end‐of‐life discussions. Future research is needed to examine the impact of addressing the consequences of illness in facilitating earlier end‐of‐life communication.

show abstract

Section: Discussionsupporting

confidence: 90%

‘The Future is Probably Now’: Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers

Mak

Upshur

et al. 2019

Health Expectations

View full text Add to dashboard Cite

show abstract

“…In heart failure, the trajectory of each patient is different. Stocker et al . showed that the majority of patients with heart failure reject the idea of heart failure as a terminal disease and prefer to focus on day‐to‐day management and maintenance, despite obvious deterioration in disease stage and needs over time.…”

Section: Management Strategies For Patients With Advanced Heart Failurementioning

confidence: 99%

“…In heart failure, the trajectory of each patient is different. Stocker et al 265 showed that the majority of patients with heart failure reject the idea of heart failure as a terminal disease and prefer to focus on day-to-day management and maintenance, despite obvious deterioration in disease stage and needs over time. Common expectations pre-and post-heart transplant or MCS and potential complications should be discussed with patients and their caregivers, ideally, during the assessment and evaluation period for advanced heart failure therapies.…”

Section: Palliative Care Of Patients With Advanced Heart Failurementioning

confidence: 99%

Advanced heart failure: a position statement of the Heart Failure Association of the European Society of Cardiology

Crespo-Leiro

Metra

Lund

et al. 2018

European J of Heart Fail

664

605

View full text Add to dashboard Cite

This article updates the Heart Failure Association of the European Society of Cardiology (ESC) 2007 classification of advanced heart failure and describes new diagnostic and treatment options for these patients. Recognizing the patient with advanced heart failure is critical to facilitate timely referral to advanced heart failure centres. Unplanned visits for heart failure decompensation, malignant arrhythmias, co-morbidities, and the 2016 ESC guidelines criteria for the diagnosis of heart failure with preserved ejection fraction are included in this updated definition. Standard treatment is, by definition, insufficient in these patients. Inotropic therapy may be used as a bridge strategy, but it is only a palliative measure when used on its own, because of the lack of outcomes data. Major progress has occurred with short-term mechanical circulatory support devices for immediate management of cardiogenic shock and long-term mechanical circulatory support for either a bridge to transplantation or as destination therapy. Heart transplantation remains the treatment of choice for patients without contraindications. Some patients will not be candidates for advanced heart failure therapies. For these patients, who are often elderly with multiple co-morbidities, management of advanced heart failure to reduce symptoms and improve quality of life should be emphasized. Robust evidence from prospective studies is lacking for most therapies for advanced heart failure. There is an urgent need to develop evidence-based treatment algorithms to prolong life when possible and in accordance with patient preferences, increase life quality, and reduce the burden of hospitalization in this vulnerable patient population.

show abstract

“…Study designs assessing patients’ experiences indirectly that is, expert opinion, routine data that was not obtained from patients directly, or came from health professionals, will not be eligible for inclusion. On the other hand, since informal caregivers play a significant role in shaping patients’ experiences of healthcare services, studies that report patient experiences from the perspective of a patient’s close social network will be eligible for inclusion—especially towards end of life and when patients are unable to self-report their experiences 26…”

Section: Methods and Analysismentioning

confidence: 99%

Chronic heart failure patients’ experiences of German healthcare services: a protocol for a scoping review

et al. 2019

View full text Add to dashboard Cite

IntroductionChronic heart failure (CHF) is a heterogeneous condition requiring complex treatment from diverse healthcare services. An increasingly holistic understanding of healthcare has resulted in contextual factors such as perceived quality of care, as well as patients’ acceptance, preferences and subjective expectations of health services, all gaining in importance. How patients with CHF experience the use of healthcare services has not been studied within the scope of a systematic review in a German healthcare context. The aim of this scoping review is therefore to review systematically the experiences of patients affected by CHF with healthcare services in Germany in the literature and to map the research foci. Further objectives are to identify gaps in evidence, develop further research questions and to inform decision makers concerned with improving healthcare of patients living with CHF.Methods and analysisThis scoping review will be based on a broad search strategy involving systematic and comprehensive electronic database searches in MEDLINE, EMBASE, PsycINFO, PSYNDEX, CINAHL and Cochrane’s Database of Systematic Reviews, grey literature searches, as well as hand searches through reference lists and non-indexed key journals. The methodological procedure will be based on an established six-stage framework for conducting scoping reviews that includes two independent reviewers. Data will be systematically extracted, qualitatively and quantitatively analysed and summarised both narratively and visually. To ensure the research questions and extracted information are meaningful, a patient representative will be involved.Ethics and disseminationEthical approval will not be required to conduct this review. Results will be disseminated through a clearly illustrated report that will be part of a wider research project. Furthermore, it is intended that the review’s findings should be made available to relevant stakeholders through conference presentations and publication in peer-reviewed journals (knowledge transfer). Protocol registration in PROSPERO is not applicable for scoping reviews.

show abstract

Should heart failure be regarded as a terminal illness requiring palliative care? A study of heart failure patients’, carers’ and clinicians’ understanding of heart failure prognosis and its management

Cited by 19 publications

References 17 publications

‘The Future is Probably Now’: Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers

‘The Future is Probably Now’: Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers

Advanced heart failure: a position statement of the Heart Failure Association of the European Society of Cardiology

Chronic heart failure patients’ experiences of German healthcare services: a protocol for a scoping review

Contact Info

Product

Resources

About