ArticleJournal of pain and symptom management2013
Advance care planning beyond advance directives: perspectives from patients and surrogates.
Article in Journal of pain and symptom management, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01550731 (Preparing Older Veterans With Serious and Chronic Illness for Decision Making), which is not on this map. Cited by 94 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Preparing Older Veterans With Serious and Chronic Illness for Decision Making
Who cites it
94 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Gender differences in the context of interventions for improving health literacy in migrants: a qualitative evidence synthesis.The Cochrane database of systematic reviews · 2024Pooled it
- Interventions for improving health literacy in migrants.The Cochrane database of systematic reviews · 2023Pooled it
- Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis.Clinical interventions in aging · 2017Pooled it
- The influence of an interactive educational approach on advance care planning counseling in individuals with psychiatric disorders.BMC palliative care · 2025Trial
- Assessing Advance Care Planning Fidelity within the Context of Cognitive Impairment: The SHARE Trial.Journal of pain and symptom management · 2024Trial
- Complex advance care planning intervention in general practice (ACP-GP): a cluster-randomised controlled trial.The British journal of general practice : the journal of the Royal College of General Practitioners · 2024Trial
- Advance care planning engagement in patients with chronic, life-limiting illness: baseline findings from a cluster-randomised controlled trial in primary care.The British journal of general practice : the journal of the Royal College of General Practitioners · 2023Trial
- Effect of Advance Care Planning on Surrogate Decision Makers' Preparedness for Decision Making: Results of a Mixed-Methods Randomized Controlled Trial.Journal of palliative medicine · 2021Trial
- Trial
- Effect of the PREPARE Website vs an Easy-to-Read Advance Directive on Advance Care Planning Documentation and Engagement Among Veterans: A Randomized Clinical Trial.JAMA internal medicine · 2017Trial
- Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates.American journal of kidney diseases : the official journal of the National Kidney Foundation · 2015Trial
- Surrogate Decision-Making for Older Adults With and Without Dementia.JAMA network open · 2026Article
- Relationships Between Advance Care Planning Engagement, Patients' Religious Practices, and Spirituality.The American journal of hospice & palliative care · 2026Article
- Advance care planning by proxy for residential aged care facility residents: results of a pilot interventional study.Innovation in aging · 2026Article
- Patient- and Caregiver-Identified Goals for Advance Care Planning in Patients With Dementia or Cognitive Impairment.Dementia (London, England) · 2026Article
- Conceptualizing end-of-life communication by nursing staff as part of advance care planning with older people: A multiple discipline focus group study.International journal of nursing studies advances · 2025Article
- Multi Components in the Implementation of Advanced Care Planning for Patients with Cancer: A Scoping Review.Journal of caring sciences · 2025Review
- Advance care planning for adults with cancer.The Cochrane database of systematic reviews · 2025Article
- Preparing Surrogates for Decision-Making: Development and Pilot Testing of Prepare for Their Care.Journal of pain and symptom management · 2025Article
- Commentary: Ethics and Advance Requests for MAiD: Thresholds and Applicability.Healthcare policy = Politiques de sante · 2025Article
34 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
contextAdvance care planning (ACP) has focused on documenting life-sustaining treatment preferences in advance directives (ADs). The ADs alone may be insufficient to prepare diverse patients and surrogates for complex medical decisions.
objectivesTo understand what steps best prepare patients and surrogates for decision making.
methodsWe conducted 13 English/Spanish focus groups with participants from a Veterans Affairs and county hospital and the community. Seven groups included patients (n=38), aged ≥65 years, who reported making serious medical decisions. Six separate groups included surrogates (n=31), aged ≥18 years, who made decisions for others. Semistructured focus groups asked what activities best prepared the participants for decision making. Two investigators independently coded data and performed thematic content analysis. Disputes were resolved by consensus.
resultsThe mean±SD patient age was 78±8 years, and 61% were nonwhite. The mean±SD surrogate age was 57±10 years, and 91% were nonwhite. Qualitative analysis identified four overarching themes about how to best prepare for decision making: 1) identify values based on past experiences and quality of life, 2) choose surrogates wisely and verify that they understand their role, 3) decide whether to grant leeway in surrogate decision making, and 4) inform other family and friends of one's wishes to prevent conflict.
conclusionBeyond ADs, patients and surrogates recommend several additional steps to prepare for medical decision making including using past experiences to identify values, verifying that the surrogate understands their role, deciding whether to grant surrogates leeway, and informing other family and friends of one's wishes. Future ACP interventions should consider incorporating these additional ACP activities.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.