ArticleJournal of medical ethics2006
Evaluation and ethical review of a tool to explore patient preferences for information and involvement in decision making.
Article in Journal of medical ethics, 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
What it found
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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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient preferences for shared decisions: a systematic review.Patient education and counseling · 2012Pooled it
- Giving room for the existential response to serious illness: experiences with advance care planning among home-dwelling older persons admitted to acute geriatric care.European geriatric medicine · 2026Trial
- To what extent should doctors communicate diagnostic uncertainty with their patients? An empirical ethics vignette study.Journal of medical ethics · 2025Trial
- Implementing advance care planning in nursing homes - study protocol of a cluster-randomized clinical trial.BMC geriatrics · 2018Trial
- The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making.Journal of pain and symptom management · 2017Trial
- Ethical challenges in acute geriatric care and advance care planning: a nested qualitative study.European geriatric medicine · 2026Article
- Healthcare professionals' experiences of advance care planning conversations with frail older adults admitted to acute geriatric hospital units: a nested qualitative study.BMC health services research · 2026Observational
- In Defence of Causing Patients to Worry: Ethical Issues in the Communication of Diagnostic Uncertainty.Bioethics · 2025Article
- Which questionnaires can be used to elicit patients' preferences regarding patient-provider consultations? Results of a scoping review.BMC health services research · 2025Article
- Implementation of advance care planning in the routine care for acutely admitted patients in geriatric units: protocol for a cluster randomized controlled trial.BMC health services research · 2024Article
- Patient preferences in geriatric wards, a survey of health care professionals' practice, experience and attitudes.European geriatric medicine · 2024Article
- Oncologists' Communication About Uncertain Information in Second Opinion Consultations: A Focused Qualitative Analysis.Frontiers in psychology · 2021Article
- End-of-life care communications and shared decision-making in Norwegian nursing homes--experiences and perspectives of patients and relatives.BMC geriatrics · 2015Article
- An online survey to study the relationship between patients' health literacy and coping style and their preferences for self-management-related information.Patient preference and adherence · 2014Article
- Governance mechanisms in the physician-patient relationship: a literature review and conceptual framework.Health expectations : an international journal of public participation in health care and health policy · 2013Review
- Privacy-solidarity conflict: the communication with the support group.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2011Article
- Ethical and legal issues in end-of-life care.Clinical medicine (London, England) · 2010Article
- Patients' Experiences of Being a Burden on Family in Terminal Illness.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2007Article
- Taking an "ethics history".Journal of the Royal Society of Medicine · 2005Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
aimTo improve clinical and ethical understanding of patient preferences for information and involvement in decision making.
objectivesTo develop and evaluate a clinical tool to elicit these preferences and to consider the ethical issues raised.
designA before and after study.
settingThree UK hospices.
participantsPatients with advanced life-threatening illnesses and their doctors.
interventionQuestionnaire on information and decision-making preferences.
main outcome measuresPatient-based outcome measures were satisfaction with the amount of information given, with the way information was given, with family or carer information, and confidence about future decision making. Doctor-based outcome measures were confidence in matching information to patient preference, matching family or carer communication to patient preference, knowing patient preferences and matching future decision making with patient preference.
resultsOf 336 admissions, 101 patients (mean age 67.3 years, 47.5% men) completed the study (control, n = 40; intervention, n = 61). Patient satisfaction with the way information was given (chi2 = 6.38, df = 2, p = 0.041) and family communication (chi2 = 14.65, df = 2, p < 0.001) improved after introduction of the tool. Doctor confidence improved across all outcome measures (all p values < 0.001).
conclusionsPatient satisfaction and doctor confidence were improved by administering the questionnaire, but complex ethical issues were raised by implementing and applying this research. The balance of ethical considerations were changed by advanced life-threatening illness, because there is increased risk of harm through delivery of information discordant with the patient's own preferences. The importance of truly understanding patient preferences towards the end of life is highlighted by this study.
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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.