Cancer palliative care referral: patients’ and family caregivers’ perspectives – a systematic review
Bibliographic record
Abstract
BACKGROUND: Despite the evidence of palliative care benefits, referrals are infrequent and delayed. Patients and their caregivers are essential stakeholders in the referral process with valuable perspectives. This review systematically explored their perceived facilitators and barriers to palliative care referral. METHODS: 4 subject-specific databases (PubMed, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and EMBASE), 3 multidisciplinary databases (SCOPUS, Web of Science and Cochrane database) and 11 journals from 1 January 1990 to 31 May 2022 were searched; and scored for their methodological rigour using Hawker's tool. Findings were synthesised using Popay's Narrative Synthesis method and interpreted using decision-making theory. RESULTS: 4 themes were generated from 14 studies: (1) The timing of referral should be right and communication must be comprehensive. Delays in initiating serious illness conversations, prognostication, and decision-making hindered referral. In contrast, the presence of symptoms facilitated it. (2) Referral was equated to death, and as an inferior form of treatment, a rebranding might mitigate the stigma. (3) Referral made families feel emotional and devastated; explanation and team initiatives enabled the normalisation and positive coping. (4) Long-term holistic palliative care facilitated a positive care experience and a sense of reassurance and satisfaction, enabling a smooth transition from curative to comfort care. The late referral was associated with perceived inadequate symptom management, diminished quality of life and death and complicated bereavement issues. CONCLUSION: Patients' and caregivers' predisposition to palliative care engagement was influenced by timely referral, comprehensive communication, perception and stigma about palliative care. Longitudinal association with the palliative care team mitigated negative perceptions and improved satisfaction and coping. PROSPERO REGISTRATION NUMBER: CRD42018091481.
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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 | 0.013 | 0.046 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.004 | 0.003 |
| Bibliometrics | 0.010 | 0.010 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.002 | 0.003 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.002 | 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".