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Nurse-led patient-centred intervention to increase written advance directives for outpatients in early-stage palliative care: study protocol for a randomised controlled trial with an embedded explanatory qualitative study.

ABSTRACT: INTRODUCTION:Discussing the evolution of life-threatening diseases and end-of-life issues remains difficult for patients, relatives and professionals. Helping people discuss and formalise their preferences in end-of-life care, as planned in the Go Wish intervention, could reduce health-related anxiety in the advance care planning (ACP) and advance directive (AD) process. The aims of this study are (1) to test the effectiveness of the Go Wish intervention among outpatients in early-stage palliative care and (2) to understand the role of defence mechanisms in end-of-life discussions among nurses, patients and relatives. METHODS AND ANALYSIS:A mixed-methods study will be performed. A cluster randomised controlled trials with three parallel arms will be conducted with 45 patients with chronic progressive diseases impacting life expectancy in each group: (1) Group A, Go Wish intervention for patients and their relatives; (2) Group A, Go Wish intervention for patients alone and (3) Group B, for patients (with a waiting list), who will receive the standardised information on ADs (usual care). Randomisation will be at the nurse level as each patient is referred to one of the 20 participating nurses (convenience sample of 20 nurses). A qualitative study will be conducted to understand the cognitive and emotional processes and experiences of nurses, patients and relatives confronted with end-of-life discussions. The outcome measurements include the completion of ADs (yes/no), anxiety, quality of communication about end-of-life care, empowerment, quality of life and attitudes towards ADs. ETHICS AND DISSEMINATION:The study protocol has been approved by the Human Research Ethics Committee of the Canton of Geneva, Switzerland (no. 2019-00922). The findings will be disseminated to practice (nurses, patients and relatives), to national and international scientific conferences, and peer-reviewed journals covering nursing science, psychology and medicine. TRIAL REGISTRATION NUMBER:NCT04065685.

SUBMITTER: Iglesias K

PROVIDER: S-EPMC7511622 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Nurse-led patient-centred intervention to increase written advance directives for outpatients in early-stage palliative care: study protocol for a randomised controlled trial with an embedded explanatory qualitative study.

Iglesias Katia K Busnel Catherine C Dufour Florian F Pautex Sophie S Séchaud Laurence L

BMJ open 20200920 9

<h4>Introduction</h4>Discussing the evolution of life-threatening diseases and end-of-life issues remains difficult for patients, relatives and professionals. Helping people discuss and formalise their preferences in end-of-life care, as planned in the Go Wish intervention, could reduce health-related anxiety in the advance care planning (ACP) and advance directive (AD) process. The aims of this study are (1) to test the effectiveness of the Go Wish intervention among outpatients in early-stage ...[more]

PMID: 32958487

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Project description:ObjectivesTo compare outpatients from private practices and outpatients from a university clinic regarding the determinants of completion of advance directives (AD) in order to generalise results of studies from one setting to the other. Five determinants of completion of AD were studied: familiarity with AD, source of information about AD, prior experiences with own life-threatening diseases or family members in need of care and motives in favour and against completion of AD.DesignObservational cross-sectional study.SettingPrivate practices and a university clinic in Germany in 2012.Participants649 outpatients from private practices and 2158 outpatients from 10 departments of a university clinic.Outcome measuresCompletion of AD, familiarity with AD, sources of information about AD (consultation), prior experiences (with own life-threatening disease and family members in need of care), motives in favour of or against completion of AD, sociodemographic data.ResultsDeterminants of completion of AD did not differ between outpatients from private practices versus university clinic outpatients. Prior experience with severe disease led to a significantly higher rate of completion of AD (33%/36% with vs 24%/24% without prior experience). Participants with completion of AD had more often received legal than medical consultation before completion, but participants without completion of AD are rather aiming for medical consultation. The motives in favour of or against completion of AD indicated inconsistent patterns.ConclusionsDeterminants of completion of AD are comparable in outpatients from private practices and outpatients from a university clinic. Generalisations from university clinic samples towards a broader context thus seem to be legitimate. Only one-third of patients with prior experience with own life-threatening diseases or family members in need of care had completed an AD as expression of their autonomous volition. The participants' motives for or against completion of AD indicate that ADs are considered a kind of 'negative autonomy' as instruments to prevent particular forms of therapy. Interactive, repeated and situation-based AD discussions might reach a higher percentage of patients and concurrently enable personal volitions and thereby strengthen individual 'positive autonomy'.

Project description:ObjectiveAdvance directives (ADs) are integral to health care, allowing patients to specify surrogate decision-makers and treatment preferences in case of loss of capacity. The present study sought to identify determinants of ADs among stroke survivors.MethodsIn this cross-sectional study (Care Attitudes and Preferences in Stroke Survivors [CAPriSS]), community-dwelling stroke survivors were surveyed on ADs; validated scales were used to query palliative care knowledge and attitudes towards life-sustaining treatments. Logistic regression was used to determine variables associated with ADs.ResultsAmong 562 community-dwelling stroke survivors who entered the survey after screening questions confirmed eligibility, 421 (74.9%) completed survey components with relevant variables of interest. The median age was 69 years (IQR 58-75 years); 53.7% were male; and 15.0% were Black. Two hundred and fifty-one (59.6%) respondents had ADs. Compared to stroke survivors without ADs, those with ADs were more likely to be older (median age 72 vs. 61 years; p<0.001), White (91.2% vs. 75.9%, p<0.001), and male (58.6% vs. 46.5%, p = 0.015), and reported higher education (p<0.001) and income (p = 0.011). Ninety-eight (23.3%) participants had "never heard of palliative care". Compared to participants without ADs, participants with ADs had higher Palliative Care Knowledge Scale (PaCKS) scores (median 10 [IQR 5-12] vs. 7 [IQR 0-11], p<0.001), and lower scores on the Attitudes Towards Life-Sustaining Treatments Scale (indicating a more negative attitude towards life-sustaining treatments; median 23 [IQR 18-28] vs. 29 [IQR 24-35], p<0.001). Multivariable logistic regression identified age (OR 1.62 per 10 year increase, 95% CI 1.30-2.02; p<0.001), prior advance care planning discussion with a physician (OR 1.73, 95% CI 1.04-2.86; p = 0.034), PaCKS scores (OR 1.06 per 1 point increase, 95% CI 1.01-1.12; p = 0.018), and Attitudes Towards Life-Sustaining Treatments Scale scores (OR 0.91 per 1 point increase, 95% CI 0.88-0.95; p<0.001) as variables independently associated with ADs.ConclusionsAge, prior advance care planning discussion with a physician, palliative care knowledge, and attitudes towards life-sustaining treatments were independently associated with ADs.

Project description:BACKGROUND:An advance directive is a document specifying a person's preferences for treatment, should he or she lose capacity to make such decisions in the future. They have been used in end-of-life settings to direct care but should be well suited to the mental health setting. OBJECTIVES:To examine the effects of advance treatment directives for people with severe mental illness. SEARCH STRATEGY:We searched the Cochrane Schizophrenia Group's Register (February 2008), the Cochrane Library (Issue 1 2008), BIOSIS (1985 to February 2008), CINAHL (1982 to February 2008), EMBASE (1980 to February 2008), MEDLINE (1966 to February 2008), PsycINFO (1872 to February 2008), as well as SCISEARCH and Google - Internet search engine (February 2008). We inspected relevant references and contacted first authors of included studies. SELECTION CRITERIA:We included all randomised controlled trials (RCTs), involving adults with severe mental illness, comparing any form of advance directive with standard care for health service and clinical outcomes. DATA COLLECTION AND ANALYSIS:We extracted data independently. For homogenous dichotomous data we calculated fixed-effect relative risk (RR) and 95% confidence intervals (CI) on an intention-to-treat basis. For continuous data, we calculated weighted mean differences (WMD) and their 95% confidence interval again using a fixed-effect model. MAIN RESULTS:We were able to include two trials involving 321 people with severe mental illnesses. There was no significant difference in hospital admission (n=160, 1 RCT, RR 0.69 0.5 to 1.0), or number of psychiatric outpatient attendances between participants given advanced treatment directives or usual care. Similarly, no significant differences were found for compliance with treatment, self harm or number of arrests. Participants given advanced treatment directives needed less use of social workers time (n=160, 1 RCT, WMD -106.00 CI -156.2 to -55.8) than the usual care group, and violent acts were also lower in the advanced directives group (n=160, 1 RCT, RR 0.27 CI 0.1 to 0.9, NNT 8 CI 6 to 92). The number of people leaving the study early were not different between groups (n=321, 2 RCTs, RR 0.92 CI 0.6 to 1.6). AUTHORS' CONCLUSIONS:There are too few data available to make definitive recommendations. More intensive forms of advance directive appear to show promise, but currently practice must be guided by evidence other than that derived from randomised trials. More trials are indicated to determine whether higher intensity interventions, such as joint crisis planning, have an effect on outcomes of clinical relevance.

Dataset Information

Nurse-led patient-centred intervention to increase written advance directives for outpatients in early-stage palliative care: study protocol for a randomised controlled trial with an embedded explanatory qualitative study.

Publications

Nurse-led patient-centred intervention to increase written advance directives for outpatients in early-stage palliative care: study protocol for a randomised controlled trial with an embedded explanatory qualitative study.

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