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Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study

ABSTRACT: Background Shared decision-making provides an approach to discuss advance care planning in a participative and informed manner, embodying the principles of person-centered care. A number of guided approaches to achieve shared decision-making already exist, such as the three-talk model. However, it is uncertain whether daily practice methods in nursing home wards for persons with dementia comply with the underpinnings of this model. It is also uncertain whether professionals consider shared decision-making to be important in this context, and whether they perceive themselves sufficiently competent to practice this approach frequently. Methods The study has a cross-sectional design, with 65 wards (46 Belgian nursing homes) participating in the study. We compared nursing home professionals’ and residents’ perspectives on the level of shared decision-making during advance care planning conversations with ratings from external raters. Residents and professionals rated the level of shared decision-making by means of a questionnaire, which included the topic of the conversation. External raters assessed audio recordings of the conversations. Professionals filled in an additional self-report questionnaire on the importance of shared decision-making, their competence in practicing the approach, and with what frequency. Results At ward level, professionals and residents rated the average achieved level of shared decision-making 71.53/100 (??=?16.09) and 81.11/100 (??=?19.18) respectively. Meanwhile, raters gave average scores of 26.97/100 (??=?10.45). Only 23.8% of residents referred to advance care planning as the topic of the conversation. Professionals considered shared decision-making to be important (x?=4.48/5, ??=?0.26). This result contrasted significantly with the frequency (x?=3.48/5, ??=?0.51) and competence (x?=3.76/5, ??=?0.27) with which these skills were practiced (P?

SUBMITTER: Goossens B

PROVIDER: S-EPMC7532572 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Due to the gradual loss of function, it is crucial for persons with dementia to discuss advance care planning in due course. However, nursing home staff, residents and their families feel uncomfortable to start this type of conversation, resulting in unknown (care) preferences. 'We DECide optimized' will provide tools to nursing home staff for discussing advance care planning. The primary objective is to enhance the level of shared decision-making in advance care planning conversations. We hypothesize that the training will enhance the perception of the importance, competence and frequency in which participants engage in advance care planning conversations. The secondary objective is to assess barriers and facilitators in the implementation of advance care planning policies at the ward level. METHODS:'We DECide optimized' will consist of two four-hour workshops and a homework assignment between sessions. Training components will include information on advance care planning and shared decision-making, role-play exercises and group discussions on implementation barriers at the ward level. Participating wards will receive supporting materials to stimulate residents and their families to initiate conversations. The study uses a cluster randomized controlled design, with 65 Flemish nursing home wards taking part (311 staff members). Data will be collected through a pretest-posttest model, with measurements up to 9?months after training. The RE-AIM framework will be used to evaluate the effectiveness of the implementation. Quantitative and qualitative data at the clinical, organizational and resident level will be collected. DISCUSSION:This study describes a hands-on, in-depth and multi-level training approach to improve shared decision-making in advance care planning conversations. By providing tools to ward staff, engaging the management and informing residents and their families, 'We DECide optimized' aims to decrease evidence-based barriers and to provide all stakeholders with incentives to engage in conversations about (care) preferences in an informative and participatory manner.

Project description:BackgroundIn the Netherlands, it is customary to discuss directives regarding resuscitation, intubation, and ICU-admission with patients and/or their relatives upon hospital-admission. The outcome of this discussion is documented in a code status. Ideally, these advance care planning (ACP)-related decisions are made by a patient (and/or their relatives) and a professional together in a shared decision-making (SDM) process, to improve patient satisfaction and prevent undesired care. Given the bad outcomes in older COVID-19 patients, it is particularly important to discuss the code status upon admission. This study aims to describe the practice of SDM regarding code status during the COVID-pandemic. Specific aims were to find out to what extend patients took part in this decision-making process and whether all key elements of SDM for a shared decision were documented in medical reports.MethodsIn this retrospective cohort study, we included COVID-19 patients aged 70 years and older, admitted to two large teaching hospitals in the Netherlands, during the first months of the COVID-19 pandemic in 2020. Data about code status and the decision-making process were extracted from electronic healthcare records.ResultsCode status was documented for 274 of 275 included patients. Patient participation in the decision-making process was described in 48%. In 19% all key elements of shared decision-making have been described. Key elements of SDM were defined as the presence of a completed code status form, the presence of clinical notes showing that both patient's wishes and values and the opinion of the healthcare professional about the predicted outcome was taken into consideration and clinical notes of a patient-healthcare professional interaction during the admission.ConclusionOur results show that a proper SDM process regarding code status is possible, even in hectic times like the COVID-19-pandemic. However, shared decision-making was not common practice in older patients with COVID-19 regarding code status (an ACP-related decision) in the early phase of the COVID-19 pandemic. Only in 19% of the patients, all key elements of SDM regarding code status were described.

Project description:ImportanceBetter advance care planning (ACP) can help promote goal-directed care in patients with advanced dementia.ObjectivesTo test whether an ACP video (vs usual care) has an effect on documented advance directives, level of care preferences, goals-of-care discussions, and burdensome treatments among nursing home residents with advanced dementia.Design, setting, and participantsThe Educational Video to Improve Nursing home Care in End-stage dementia (EVINCE) trial was a cluster randomized clinical trial conducted between February 2013 and July 2017, at 64 Boston-area nursing homes (32 facilities per arm). A total of 402 residents with advanced dementia and their proxies (intervention arm, n = 212; control arm, n = 190) were assessed quarterly for 12 months.InterventionsA 12-minute ACP video for proxies with written communication of their preferred level of care (comfort, basic, or intensive) to the primary care team.Main outcomes and measuresThe primary outcome was the proportion of residents with do-not-hospitalize (DNH) directives by 6 months. Secondary outcomes included preference for comfort care, documented directives to withhold tube-feeding and intravenous hydration, documented goals-of-care discussions, and burdensome treatments (hospital transfers, tube-feeding, or parenteral therapy) per 1000 resident-days. Exploratory analyses examined associations between trial arm and documented advance directives when comfort care was preferred.ResultsThe mean age of the 402 study residents was 86.7 years [range, 67-102 years]; 350 were white (87.1%) and 323 were female (80.3%), with DNH directives that by 6 months did not differ between arms (63% in both arms; adjusted odds ratio [AOR], 1.08; 95% CI, 0.69-1.69). Preferences for comfort care, directives to withhold intravenous hydration, and burdensome treatments did not differ between arms. Residents in intervention vs control facilities were more likely to have directives for no tube-feeding at 6 months (70.10% vs 61.90%; AOR, 1.79; 95% CI, 1.13-2.82) and all other time periods, and documented goals-of-care discussions at 3 months (16.10% vs 7.90%; AOR, 2.58; 95% CI, 1.20-5.54). When comfort care was preferred, residents in the intervention arm were more likely to have both DNH and no tube-feeding directives (72.20% vs 52.80%; AOR, 2.68; 95% CI, 2.68-5.85).Conclusions and relevanceAn ACP video did not have an effect on preferences, DNH status, or burdensome treatments among residents with advanced dementia, but did increase directives to withhold tube-feeding. When proxies preferred comfort care, advance directives of residents in the intervention arm were more likely to align with that preference.Trial registrationclinicaltrials.gov Identifier: NCT01774799.

Project description:Advance Care Planning (ACP) is the repeated communication and decision-making process between the patient, family, and healthcare professionals. This study describes an ACP intervention in nursing homes and evaluates the outcomes of the implementation process.The ACP intervention was part of a 4-month complex, cluster randomized controlled trial (COSMOS). 37 Norwegian nursing homes with 72 units (1 cluster?=?1 unit) and 765 patients were invited to participate and eligible units were randomised to the intervention group or control. Nursing home staff in the intervention group was offered a standardized education programme to learn early and repeated communication with patients and families and to implement ACP in their units. We used a train-the-trainer approach to educate staff in the units, supported by regular telephone calls and a midway seminar after two months. Individual patient logs consisting of different communication deliverables were used to evaluate the implementation process. Supported by Qualitative Content Analyses, we identified facilitators and barriers of the ACP implementation based on feedback during midway seminars and individual patient logs.The ACP intervention was conducted in 36 NH units (n?=?297); 105 healthcare providers participated at the education seminar prior to the study, and 3-4 employees from each unit participated in the midway seminar. NH staff reported the educational material relevant for the implementation strategy. The patient logs showed that ACP was successfully implemented in 62% (n?=?183) of the patients using our predefined implementation criteria. The staff emphasized the clear communication of the relevance of ACP addressed to leaders and staff as important facilitators, along with the clearly defined routines, roles and responsibilities. Identified barriers included lack of competence, perceived lack of time, and conflicting culture and staff opinions.Monthly communication with the family was the most frequently conducted communication, and the predefined criteria of successfully implemented ACP were largely achieved. Nursing home routines and engagement of leaders and staff were crucial facilitators, whereas lack of time and competence reduced the implementation success.The COSMOS-trial was registered in the ClinicalTrials.gov ( NCT02238652 ) July 7th, 2014.

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Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study

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