Abstract
BackgroundEffective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers.MethodsIn a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data.ResultsFour themes were identified in the context of participants’ understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members.ConclusionThe findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life.
Highlights
Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness
This study explores the challenges of end-of-life communication from the perspectives of older adults with heart failure and their family caregivers
That’s part of the end of life too, is it’s no longer the same partnership. (71y/o, female, caregiver to patient 3, 89 y/o, 7 chronic conditions). In this qualitative study of older adults with heart failure and their family caregivers four challenges of end-of-life discussions were identified: trivializing illness-related challenges, positivity in late life, discomfort in having end-of-life conversations, and reluctant to engage despite need
Summary
Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers. Effective communication is integral to the delivery of goal-concordant care for older adults as they progress throughout their illness to the end of life. Having goals-ofcare discussions is one way to achieve goal-concordant care; this is part of the end-of-life communication process, which aims to create a shared understanding of an Chronic heart failure is a progressive illness characterized by an uncertain clinical trajectory, and high risk of morbidity and mortality that affects over 8% of older adults over the age of 75, globally [3]. The complexity of illness poses challenges for clinicians, patients and family caregivers to engage in end-of-life communication all the while highlighting the need for earlier end-of-life communication in older adults with heart failure
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