Informal Advance Care Planning in Black Patients With Kidney Failure
Bibliographic record
Abstract
Background: Research examining advance care planning (ACP) in kidney failure patients is primarily assessed in research by written advance directives. Black patients have limited representation in ACP research, and many prefer informal conversations. We examined the relationship of informal ACP conversations with personal, interpersonal, and structural level factors. Methods: We conducted a concurrent mixed-methods study including a survey and semi-structured interviews to identify personal, interpersonal, and structural factors related to engagement in informal ACP conversation. We conducted a survey of 280 Black patients who are on dialysis or have a history of being on dialysis. We conducted twenty semi-structured interviews using maximum variation sampling among survey respondents focused on the content, context, barriers and facilitators of informal ACP conversations. Multivariable logistic regression, thematic analysis, and triangulation were used to analyze the data. Results: Sixty-six percent engaged in an informal ACP conversation and 38% completed an advance directive. Of the 197 patients who engaged in informal ACP conversations, 51% also completed an advance directive. Mean age was 56 years, 52% were female, and 68% are currently treated with dialysis. In preliminary bivariate analyses of informal ACP, illness acceptance (OR 1.07, p=0.016), social support (emotional OR 1.12, p=0.002; Instrumental OR 1.09, p=0.005; informational OR 1.13, p=0.00), education (OR 1.32, p=0.18), and previous experience as a surrogate decision maker (OR 1.89, p=0.017) increased the likelihood of engaging in informal ACP. The interviews revealed that the content often includes financial, healthcare, and funeral planning wishes. These conversations often follow a health status change like a hospitalization or a worsening in their condition. Key facilitators were having a strong trusted social support system and past experience with ACP or a loved one dying. Barriers included distrust of family to carry out their wishes as outlined and a discomfort/avoidance of having informal ACP conversations. Conclusions: Informal ACP conversations with family occur more frequently than written directives in Black dialysis patients. Future efforts should assess the patient's social support system and target interventions to engage patients with limited support networks. Funding: Other NIH Support - National Institute of Nursing Research - F31, Sigma/HPNF End-of-Life Nursing Care Research Grant, Private Foundation Support
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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 | 0.002 | 0.011 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.000 | 0.001 |
| 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".