“Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study

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.

Assessing Communication during Remote Follow-Up of Users with Pacemakers in Norway: The NORDLAND Study, a Randomized Trial

“…Older adults with heart disease and other chronic conditions require frequent communication considering their declining conditions [ 29 ]. These conversations occur infrequently between patients and caregivers [ 30 ].…”

“…Earlier research on the elderly population, chronic heart disease, and communication focused mostly on end-of-life communication and the delivery of bad news without including analyses about other topics [ 29 , 31 , 32 ]. To our knowledge, no previous research exists regarding the perceptions of PM patients about communication during remote monitoring.…”

Continuums of Change in a Competence-Building Initiative Addressing End-of-Life Communication in Swedish Elder Care

“…Still, there are points of contention that were not resolved through staff reflection and knowledge exchange in our workshop series, particularly relating to a lack of clarity about optimal timing for EoL conversations and questions about responsibility and mandate for initiating them. The issue of timing has consistently been shown to hinder proactive EoL conversations in several care settings (Im et al, 2019;Niranjan et al, 2018;Rietjens et al, 2021). The perceived lack of clarity about mandate links to an area that permeated all themes, related to increasing awareness and discussion of the need for organizational support for conducting EoL conversations systematically.…”

Communication in dyads of adult children at the end of life with their parents and parents at the end of life with their adult children: Findings from a mixed‐methods study

“…Communication between patients and their family caregivers is of central importance in the context of a terminal diagnosis, as the quality of such communication has been found to influence the quality of life and well‐being of both parties 1–3 . Studies have shown that open communication between patients and their family caregivers can reduce symptoms of stress in both patients and caregivers, as well as the experienced burden and subsequent grief of family members 4–6 .…”

“…First, terminally ill adult children who have their own nuclear family have been found to limit the information they share with their parents (who in turn express a desire to receive more information) 21 . Second, terminally ill parents and their adult children have been shown to struggle to discuss topics related to the illness or their emotions around it, and to strive to emotionally protect the dyad partner 3,17 …”