Patient-family agreement on values and preferences for life-sustaining treatment: results of a multicentre observational study

Abdul-Razzak, Amane; Heyland, Daren K.; Simon, Jessica; Ghosh, Sunita; Day, Andrew G.; You, John J.

doi:10.1136/bmjspcare-2016-001284

Cited by 22 publications

(10 citation statements)

References 20 publications

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“…Substitute decision makers and clinicians too are often unaware of patients' values. [3][4][5] Without sound knowledge of patients' values, care during serious illness may not be concordant with their values and goals, and patients may receive unwanted aggressive interventions. 6 7 In this paper, we define values as things that are important to an individual in the context of medical decision making.…”

Section: Introductionmentioning

confidence: 99%

Short Graphic Values History Tool for decision making during serious illness

You

Allatt

Howard

et al. 2019

BMJ Support Palliat Care

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ObjectivesTo develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness.MethodsThe development phase included input from experts and laypersons and assessed acceptability with patients/family members. In the validation phase, we recruited additional participants into a before–after study. Our primary validation hypothesis was that the tool would reduce scores on the Decisional Conflict Scale (DCS) at 1–2 weeks of follow-up. Our secondary validation hypotheses were that the tool would improve values clarity (reduce scores) more than other DCS subscales and increase engagement in advance care planning (ACP) processes related to identification and discussion of one’s values.ResultsIn the development phase, the tool received positive overall ratings from 22 patients/family members in hospital (mean score 4.3; 1=very poor; 5=very good) and family practice (mean score 4.5) settings. In the validation phase, we enrolled 157 patients (mean age 71.8 years) from family practice, cancer clinic and hospital settings. After tool completion, decisional conflict decreased (−6.7 points, 95% CI −11.1 to −2.3, p=0.003; 0–100 scale; N=100), with the most improvement seen in the values clarity subscale (−10.0 points, 95% CI −17.3 to −2.7, p=0.008; N=100), and the ACP-Values process score increased (+0.4 points, 95% CI 0.2 to 0.6, p=0.001; 1–5 scale; N=61).ConclusionsThe Short GVHT is acceptable to end users and has some measure of validity. Further study to evaluate its impact on decision making during serious illness is warranted.

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Section: Introductionmentioning

confidence: 99%

Short Graphic Values History Tool for decision making during serious illness

You

Allatt

Howard

et al. 2019

BMJ Support Palliat Care

Self Cite

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“…ACP conversations may contribute to a better understanding and acceptance of prognosis, and thus to a higher degree of consensus about treatment and care 7 24 25. Disagreement on values and preferences for life-sustaining treatment between seriously ill and hospitalised patients and their relatives may be considerable, and ignorance of this disparity may result in conflicts between family members and healthcare personnel 26. Johnson et al found that relatives of patients with cancer considered ACP as useful for themselves as for the patients, since the discussion contributed to reduced conflict and stress within the family 27.…”

Section: Discussionmentioning

confidence: 99%

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives’ experiences? A two country survey

Hjorth

Hufthammer

Sigurdardottir

et al. 2021

BMJ Support Palliat Care

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ObjectivesAdvance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017–2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not.MethodsRelatives after cancer deaths in hospitals answered the CODE questionnaire 6–8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient’s remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models.Results276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18–80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support.ConclusionsRelatives who had been invited to a conversation about wishes for the patient’s remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient’s final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.

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“…Although it is to be expected relatives would be adequate in assessing the wishes of the patient, this is not shown by the existing literature. Several studies performed in different categories of patients such as cancer patients, patients with early dementia and dialysis patients, suggest that relatives are often unable to correctly assess the preferences of the patient [ 14 – 16 ]. An interview-based study including 750 patient–caregiver dyads showed that, in case of discordance, patients and caregivers often had an unrealistic optimistic view regarding extent of disease, treatment goals and prognosis [ 17 ].…”

Section: Discussionmentioning

confidence: 99%

What to do when patients and physicians disagree? Qualitative research among physicians with different working experiences

et al. 2020

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Aim To understand the challenges experienced by physicians when their opinion on medical decisions differ from those of patients or relatives. Findings Physicians felt uncomfortable when there was disagreement between themselves and patients or relatives. Frustration was felt when relatives spoke on behalf of the patient, while there was no evidence the desired decision was ever expressed by the patient. A disagreement with a patient was described as being less frustrating, when the patient was able to explain the reasons for making a decision. Differences in background, especially religious, were often mentioned as complicating communication. Message Efforts must be made to establish a bond of trust between patient, relatives and physician. The use of advance directives should be encouraged. In case of an impasse between a physician and patient or relative, advice can be sought from other professionals.

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Patient-family agreement on values and preferences for life-sustaining treatment: results of a multicentre observational study

Cited by 22 publications

References 20 publications

Short Graphic Values History Tool for decision making during serious illness

Short Graphic Values History Tool for decision making during serious illness

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives’ experiences? A two country survey

What to do when patients and physicians disagree? Qualitative research among physicians with different working experiences

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