Negotiating Uncertainty: Advance Care Planning in Advanced Chronic Obstructive Pulmonary Disease (COPD)
Bibliographic record
Abstract
Physical and psychosocial symptoms in advanced chronic obstructive pulmonary\ndisease (COPD) are cumulative and profound; global financial and human costs are huge.\nCOPD in late stages runs an unpredictable downward course of increasing, potentially\nfatal exacerbations. Nevertheless many physicians avoid advance care planning in this\ncontext, a choice that tends to promote last minute crisis decision-making. To explore a\nmore ethically sound proactive approach to end-of-life care decision-making I conducted\na qualitative study informed by the question: “What is required for meaningful and\neffective advance care planning in the context of advanced COPD?”\nFifteen participants (eight patients with advanced COPD plus seven intimate\nothers) participated in two in-home advance care planning discussions that incorporated\npatient-centred care principles. Session transcripts were analyzed using "interpretive\ndescription." Despite initial wariness, participants were able to discuss their care-related\nhopes and preferences and reported that the process was a positive one. Interpretation of\nthe positive feedback suggested participants experienced the process as a chance to: a)\ntalk with an attentive clinician, b) learn, c) consider care-related goals and preferences,\nand, d) have intimate others hear about these goals/preferences. Interpretation of the\nprocess that led to this positive assessment is described in terms of a thematic network.\nThe overarching global theme of this network was "advance care planning as\ncollaborative care," which involved three organizing themes--partnering, negotiating\nambiguity, and being a resource--and a cluster of basic themes related to each of these.\nThe "collaborative care" approach is discussed as a guide to advance care planning in\nadvanced COPD. Like other advance care planning models, the study approach included\na skilled clinician facilitator, provision of targeted information, and attention to readiness.\nThere were four new elements: focus on caring, engaging hope, facilitator reflective\npraxis, and contextual sensitivity. While potentially enhancing the "care" dimension in\nadvance care planning, the study approach may incidentally improve resource allocation\nand satisfaction with outcomes. Done well it may enhance decision-making and care\nplanning, and, just as importantly, be experienced as care itself at a time and by those often neglected in this regard.
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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 | 0.026 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.011 | 0.018 |
| Scholarly communication | 0.006 | 0.007 |
| Open science | 0.002 | 0.008 |
| Research integrity | 0.002 | 0.005 |
| Insufficient payload (model declined to judge) | 0.003 | 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".