Medical decision-making of the patient in the context of the family: results of a survey

Schäfer, C.; Putnik, Kurt; Dietl, B.; Leiberich, Peter; Loew, Thomas H.; Kölbl, Oliver

doi:10.1007/s00520-006-0025-x

Cited by 52 publications

(49 citation statements)

References 29 publications

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“…This is similar to the finding in a study of 50 patients with a malignant disease in Germany. 13 What is new in our study is that this proportion of patients did not change significantly over time after diagnosis.…”

Section: Discussionmentioning

confidence: 65%

Preferences of Patients with Advanced Lung Cancer Regarding the Involvement of Family and Others in Medical Decision-Making

Pardon

Deschepper

Stichele

et al. 2010

Journal of Palliative Medicine

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Objective: To explore the preferences of competent patients with advanced lung cancer regarding involvement of family and/or others in their medical decision-making, and their future preferences in case of loss of competence. Methods: Over 1 year, physicians in 13 hospitals in Flanders, Belgium, recruited patients with initial non-smallcell lung cancer, stage IIIb or IV. The patients were interviewed with a structured questionnaire every 2 months until the fourth interview and every 4 months until the sixth interview. Results: At inclusion, 128 patients were interviewed at least once; 13 were interviewed 6 consecutive times. Sixty-nine percent of patients wanted family members to be involved in medical decision-making and this percentage did not change significantly over time. One third of these patients did not achieve this preference. Ninety-four percent of patients wanted family involvement if they lost competence, 23% of these preferring primary physician control over decision-making, 41% shared physician and family control, and 36% primary family control. This degree of preferred family involvement expressed when competent did not change significantly over time at population level, but did at individual level; almost half the patients changed their minds either way at some point during the observation period. Conclusions: The majority of patients with lung cancer wanted family involvement in decision-making, and almost all did so in case of future loss of competence. However, as half of the patients changed their minds over time about the degree of family involvement they wanted if they lost competence, physicians should regularly rediscuss a patient's preferences.

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Section: Discussionmentioning

confidence: 65%

Preferences of Patients with Advanced Lung Cancer Regarding the Involvement of Family and Others in Medical Decision-Making

Pardon

Deschepper

Stichele

et al. 2010

Journal of Palliative Medicine

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“…Family members (FMs) are usually the main source of support throughout a patient's cancer experience [1], regularly attend consultations [2,3] and are often involved in discussions about important medical decisions [4]. Our group's systematic review [5], along with a meta-analysis by Wolff and Roter [6], found that a number of quantitative studies have been conducted amongst cancer patients and FMs indicating that family involvement in the care process is complex, but mostly beneficial.…”

Section: Introductionmentioning

confidence: 97%

Attitudes and experiences of family involvement in cancer consultations: a qualitative exploration of patient and family member perspectives

Laidsaar-Powell

Butow

et al. 2016

Support Care Cancer

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FMs appear to make valuable contributions to cancer consultations, and their presence can benefit both the patient and the FM themselves in many ways. However, for some FMs, attending consultations can be challenging. Study findings point to the need for psychosocial support addressing FMs' needs and the development of communication strategies for oncology clinicians to positively engage with FMs. Further research is needed in these areas.

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“…Most cancer patients (49-84%) and family caregivers (54-59%) report both preferring and experiencing some family caregiver involvement in DM [8][9][10][11][12]. However the form and extent of family involvement in DM appears to vary widely.…”

Section: Introductionmentioning

confidence: 99%

“…However the form and extent of family involvement in DM appears to vary widely. Most patients and family caregivers prefer family caregivers' involvement to be facilitative or collaborative [9,12], and this preference is reflected in practice. In a US study examining the experiences of over 5,000 patients with lung and colorectal cancer, 1.5% of the sample reported their family made important decisions on their behalf, 49.4% reported equally sharing decisions with family, 22.1% reported some family involvement, and 28.5% of patients reported little or no role for their family in DM.…”

Section: Introductionmentioning

confidence: 99%

The TRIO Framework: Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making

Laidsaar-Powell

Butow

Charles

et al. 2017

Patient Education and Counseling

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Dedication:This paper is dedicated to the memory of our colleague, the late Professor Cathy Charles, who made a major contribution to the TRIO conceptual framework.2 Highlights  Empirically-grounded conceptual Framework of DM with a corresponding graphical aid  Focuses on the form and extent of family caregiver involvement in/influence over DM  Presents six conceptual insights derived from empirical evidence and DM theory  May serve as a useful guide for future empirical, ethical and/or theoretical work AbstractObjective: Family caregivers are regularly involved in cancer consultations and treatment decisionmaking (DM). Yet there is limited conceptual description of caregiver influence/involvement in DM.To address this, an empirically-grounded conceptual framework of triadic DM (TRIO Framework) and corresponding graphical aid (TRIO Triangle) were developed.Methods: Jabareen's model for conceptual framework development informed multiple phases of development/validation, incorporation of empirical research and theory, and iterative revisions by an expert advisory group. Results:Findings coalesced into six empirically-grounded conceptual insights: i) Caregiver influence over a decision is variable amongst different groups; ii) Caregiver influence is variable within the one triad over time; iii) Caregivers are involved in various ways in the wider DM process; iv) DM is not only amongst three, but can occur among wider social networks; v) Many factors may affect the form and extent of caregiver involvement in DM; vi) Caregiver influence over, and involvement in, DM is linked to their everyday involvement in illness care/management. Conclusion:The TRIO Framework/Triangle may serve as a useful guide for future empirical, ethical and/or theoretical work.Practice Implications: This Framework can deepen clinicians's and researcher's understanding of the diverse and varying scope of caregiver involvement and influence in DM.

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Medical decision-making of the patient in the context of the family: results of a survey

Cited by 52 publications

References 29 publications

Preferences of Patients with Advanced Lung Cancer Regarding the Involvement of Family and Others in Medical Decision-Making

Preferences of Patients with Advanced Lung Cancer Regarding the Involvement of Family and Others in Medical Decision-Making

Attitudes and experiences of family involvement in cancer consultations: a qualitative exploration of patient and family member perspectives

The TRIO Framework: Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making

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