Inpatient end-of-life care delivery: discordance and concordance analysis of Canadian palliative care professionals’ and South Asian family caregivers’ perspectives
Bibliographic record
Abstract
Background: End-of-life care involves a multitude of functions delivered by a team of healthcare professionals. Family caregivers get involved in every aspect of the palliative care journey. Meeting the needs of ethnically diverse patients can be a daunting task for Western-trained healthcare professionals. Family and professional caregivers need to have a mutual understanding of perspectives and expectations to integrate family caregivers into end-of-life care. The South Asian population in Canada is fast growing, and very little is known about their understanding and expectations of end-of-life care. Methods: The purpose is to provide research-based knowledge on discordances and concordances of encounters and perceptions of end-of-life care delivery between South Asian family caregivers and palliative care health professionals. Individual interviews were conducted among seven palliative care professionals, in a tertiary care center, and seven South Asian family caregivers who have provided care, in the same inpatient center, for the same period. The constant comparison, a component of the grounded theory approach, was employed to compare the two types of caregivers' perspectives that emerged in the qualitative data. Findings: The family caregivers were divided in their perception based on death denial and acceptance. The findings weaved the discordances and concordances of meaning assigned to palliative care to the three themes that emerged: the role of the family caregiver, communication needs and challenges, and barriers to the family caregiver participation in decision-making. The discordance between professionals and family caregivers arose in the death-denial group and concorded with the death-accepted group. The findings revealed a consequence of the survival optimistic bias, as creating dissatisfaction toward the end-of-life care delivery system when the palliative care professionals prognosticate imminent end-of-life. Conclusion: The family caregivers' interactions and encounters were shaped by their acceptance or denial of the death of their family member in care. Gaining conceptual clarity on the meaning of palliative care and providing education on the process of end-of-life care delivery are crucial to integrating ethnically diverse family caregivers into the decision-making process.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".