‘The Future is Probably Now’: Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers
Bibliographic record
Abstract
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.011 | 0.020 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.011 | 0.011 |
| Scholarly communication | 0.005 | 0.007 |
| Open science | 0.002 | 0.006 |
| Research integrity | 0.002 | 0.003 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".