Advance Care Planning in Advanced Heart Failure: The Illusion of Individual Autonomy
Bibliographic record
Abstract
Advance care planning involves understanding and sharing values and goals to ensure people with serious illnesses receive treatment that is consistent with their preferences. With the growing treatment options available to patients living with advanced heart failure, advance care planning is regarded as a means of preserving individual autonomy. Despite significant public awareness campaigns, research, and interventions to increase advance care planning, it remains under-utilized in heart failure care. The aim of this research was to gain an understanding of how patients with heart failure understand and express their autonomy through the process of advance care planning. Critical qualitative multiple-case study methodology was used. Cases were constructed using data from 19 interviews with seven patients, eight caregivers, and nine healthcare providers from across two institutions. Constructions of autonomy were developed using within- and across-case analysis guided by a relational conception of autonomy based in feminist ethics. There were three key findings: (1) advance care planning is understood as external to treatment decision-making within the current biomedical landscape; (2) the experience of autonomy in advanced heart failure is incongruent with the dominant individualistic approach; and (3) advance care planning is influenced by interpersonal relationships and responsibilities as well as interpersonal and social power dynamics. Although advance care planning is considered a practice that preserves individual autonomy, interpersonal, institutional, and societal level relationships were all heavily influential in this practice. Future research should consider the advancement of advance care planning, and the enactment of autonomy, using a relational framework that acknowledges autonomy is shaped by institutional, social, and interpersonal relationships.
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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 | 0.017 | 0.021 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.009 | 0.051 |
| Scholarly communication | 0.006 | 0.008 |
| Open science | 0.001 | 0.011 |
| Research integrity | 0.002 | 0.007 |
| 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".