Performance and validation of two ICU delirium assessment and severity tools; a prospective observational study.

BACKGROUND: The clinical statistical performance of the Confusion Assessment Method Intensive Care Unit (CAM-ICU, including CAM-ICU-7) and Intensive Care Delirium Screening Checklist (ICDSC) have rarely been studied. Additionally, delirium severity is often not measured due to a lack of validation of delirium assessment tools. OBJECTIVE: The aim was to determine the statistical performance of both delirium assessment tools in daily practice, and the correlation with the gold standard Delirium Rating Scale (DRS)-R98, for delirium severity. RESEARCH METHOD: CAM-ICU-7 and ICDSC, performed by nurses were compared with the DRS-R98 assessed by delirium experts, twice weekly. Within a time-window of one hour all assessments were independently performed. DESIGN: A prospective observational study performed between October and December 2020. MAIN OUTCOME MEASURES: Sensitivity, specificity, positive and negative predictive value of both tools was determined. The correlation between DRS-R98 and CAM-ICU-7 and ICDSC was used for validation of delirium severity. RESULTS: In total, 104 CAM-ICU-7 and 105 ICDSC assessments in 86 patients were compared with the DRS-R98. For the CAM-ICU-7 and ICDSC, respectively, the sensitivity was 90% and 95%, the specificity was 92.4% and 92.3%. The positive predictive value was 0.76 and 0.80, and negative predictive value was 0.77 and 0.97. Correlation of the CAM-ICU-7 score and ICDSC score with the DRS-R98 score was 0.74 (95% CI 0.64-0.81) and 0.70 (95%CI 0.59-0.79; both p < 0.001), respectively. CONCLUSION: Both CAM-ICU-7 and ICDSC demonstrated good statistical performance and correlated well with the delirium severity tool DRS-R98. IMPLICATIONS FOR CLINICAL PRACTICE: Nurses can either use the CAM-ICU(-7) or the ICDSC in their practice, both are accurate in delirium diagnosis. Total CAM-ICU-7 and ICDSC score reflects delirium severity well; the higher the score, the more severe the delirium. This enables nurses to gauge the impact of their interventions and enhance the well-being of patients experiencing delirium by minimizing distressing occurrences.

A multicomponent intervention program to Prevent and Reduce AgItation and phySical rEstraint use in the ICU (PRAISE): study protocol for a multicenter, stepped-wedge, cluster randomized controlled trial.

BACKGROUND: Physical restraints remain to be commonly used in agitated intensive care unit (ICU) patients worldwide, despite a lack of evidence on efficacy and safety and reports of detrimental short and long-term consequences, such as prolonged delirium and a longer ICU length of stay. Physical restraint minimization approaches have focused mainly on educational strategies and other non-pharmacological interventions. Combining these interventions with goal-directed light sedation therapy if needed may play an important contributory role in further reducing the use of physical restraints. The aim of the study is to determine the effectiveness of a multicomponent intervention (MCI) program, combining person-centered non-pharmacological interventions with goal-directed light sedation, compared to physical restraints. METHODS: A multicenter stepped-wedge cluster randomized controlled trial will be conducted in six Dutch ICUs. A power calculation based total of 480 (expected to become) agitated adult patients will be included in 26 months with a subsequent 2-year follow-up. Patients included in the control period will receive standard care with the current agitation management protocol including physical restraints. Patients included in the intervention period will be treated with the MCI program, consisting of four components, without physical restraints: education of ICU professionals, identification of patients at risk for agitation, formulation of a multidisciplinary person-centered care plan including non-pharmacological and medical interventions, and protocolized goal-directed light sedation using dexmedetomidine. Primary outcome is the number of days alive and outside of the ICU within 28 days after ICU admission. Secondary outcomes include length of hospital stay; 3-, 12-, and 24-month post-ICU quality of life; physical (fatigue, frailty, new physical problems), mental (anxiety, depression, and post-traumatic stress disorder), and cognitive health; and 1-year cost-effectiveness. A process evaluation will be conducted. DISCUSSION: This will be the first multicenter randomized controlled trial determining the effect of a combination of non-pharmacological interventions and light sedation using dexmedetomidine compared to physical restraints in agitated ICU patients. The results of this study, including long-term patient-centered outcomes, will provide relevant insights to aid ICU professionals in the management of agitated patients. TRIAL REGISTRATION: NCT05783505, registration date 23 March 2023.

The implementation of nUrsiNg DEliRium preventive INterventions in the Intensive Care Unit (UNDERPIN-ICU): A qualitative evaluation.

BACKGROUND: Delirium frequently occurs in intensive care unit patients and is associated with worse outcomes. Recently, a multicomponent non-pharmacological nursing intervention program called UNDERPIN-ICU, was implemented in ten Dutch intensive care units. The program was aimed at delirium reduction by optimizing four modifiable risk factors: visual and hearing impairment, cognitive impairment, immobility, and sleep deprivation. Despite its scientific fundament and extensive implementation, this program showed no effect on delirium outcomes. OBJECTIVE: To explore factors that hindered or facilitated the application of the UNDERPIN-ICU delirium program in daily practice as experienced by healthcare professionals. METHODS: Semi-structured focus group interviews were conducted in all participating centers between April and June of 2019. Directed content and thematic analyses were applied. Interviews were coded. Codes were grouped into categories based on factors that hindered or facilitated program application. RESULTS: In total, 22 ICU nurses, 3 ICU physicians, 5 local delirium group members and one research manager participated in 10 focus group interviews. We found 41 factors that hindered or facilitated program application, grouped into five categories: interventions; individual healthcare professional; patient; implementation process; capacity for change, incentives and resources. Among the factors identified in this study, the facilitating factors included standardized interventions, a structured implementation, interactive educational meetings and, feedback and support. The hindering factors included doubts about usefulness, feasibility, the extensive number of program components, limited knowledge about the program and a focus on physical care. CONCLUSION: Factors that hindered program application may explain why the UNDERPIN-ICU program did not have positive effects on delirium outcomes. Factors that facilitated application should be strengthened in future non-pharmacological nursing interventions to prevent or reduce delirium in intensive care. REGISTRATION: ClinicalTrials.gov Identifier: NCT03002701; registration date December 26, 2016.

Change in Advance Care Plans of Nursing Home Residents With Dementia and Pneumonia: Secondary Analysis of Randomized Controlled Trial Data.

OBJECTIVES: To explore changes in advance care plans of nursing home residents with dementia following pneumonia, and factors associated with changes. Second, to explore factors associated with the person perceived by elderly care physicians as most influential in advance treatment decision making. DESIGN: Secondary analysis of physician-reported PneuMonitor trial data. SETTING AND PARTICIPANTS: The PneuMonitor trial took place between January 2012 and May 2015 in 32 nursing homes across the Netherlands; it involved 429 residents with dementia who developed pneumonia. METHODS: We compared advance care plans before and after the first pneumonia episode. Generalized logistic linear mixed models were used to explore associations of advance care plan changes with the person most influential in decision making, with demographics and indicators of disease progression. Exploratory analyses assessed associations with the person most influential in decision making. RESULTS: For >90% of the residents, advance care plans had been established before the pneumonia. After pneumonia, treatment goals were revised in 15.9% of residents; 72% of all changes entailed refinements of goals. Significant associations with treatment goal changes were not found. Treatment plans changed in 20.0% of residents. Changes in treatment decisions were more likely for residents who were more severely ill (odds ratio 1.5, 95% CI 1.2-1.9) and those estimated to live <3 months (odds ratio 3.3, 95% CI 1.9-5.8). Physicians reported that a family member was often (47.4%) most influential in decision making. Who is most influential was associated with the resident's dementia severity. CONCLUSIONS AND IMPLICATIONS: Overall, changes in advance care plans after pneumonia diagnosis were small, suggesting stability of most preferences or limited dynamics in the advance care planning process. Advance care planning involving family is common for nursing home residents with dementia, but advance care planning with persons with dementia themselves is rare and requires more attention.

Occurrence and Timing of Advance Care Planning in Persons With Dementia in General Practice: Analysis of Linked Electronic Health Records and Administrative Data.

Background: Advance care planning (ACP) is a process of communication in which patients and family caregivers discuss preferences for future care with the healthcare team. For persons with dementia, it is crucial to timely engage in ACP. Therefore, we study ACP in dementia using electronic health record data. This study aims to determine how often ACP conversations are recorded, analyze time from dementia diagnosis until the first recorded conversation and time from the first recorded conversation to death, and analyze which factors are associated with the timing of ACP. Methods: Electronic records of 15,493 persons with dementia in Dutch general practice between 2008 and 2016 were linked to national administrative databases. ACP conversations and indicators of health deficits to determine frailty were obtained from electronic records coded with the International Classification of Primary Care. Socio-demographic characteristics were derived from the national population registry managed by Statistics Netherlands. Date of death was derived from the Personal Records Database (2008-2018). Results: ACP was recorded as such as 22 (95% CI, 20-23) first conversations per 1,000 person-years of follow-up. The hazard ratio (HR) for the first conversation increased every year after dementia diagnosis, from 0.01 in the first year to 0.07 in the 7th and 8th year after diagnosis. Median time from a first conversation to death was 2.57 years (95% CI, 2.31-2.82). Migrant status [non-Western vs. Western (HR 0.31, 95% CI, 0.15-0.65)] was significantly associated with a longer time from dementia diagnosis to the first conversation. Being pre-frail (HR 2.06, 95% CI, 1.58-2.69) or frail (HR 1.40, 95% CI, 1.13-1.73) vs. non-frail was significantly associated with a shorter time from dementia diagnosis to the first ACP conversation. Conclusion: ACP conversations in Dutch general practice were rare for persons with dementia, or was rarely recorded as such. In particular among persons with a non-Western migration background and those who are non-frail, it started long after diagnosis. We advise further research into public health and practical strategies to engage persons with dementia with a non-Western migration background and non-frail persons early in the disease trajectory in ACP.

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study.

Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies.

IMPORTANCE AND OBJECTIVE: Conducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia. DESIGN: For this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians' moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308). SETTING AND PARTICIPANTS: Physicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians' moral considerations. MAIN OUTCOMES: Physicians' moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas. RESULTS: Of 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician's interpretation or the context. CONCLUSIONS: Physicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.

Supporting GPs around euthanasia requests from people with dementia: a qualitative analysis of Dutch nominal group meetings.

BACKGROUND: Euthanasia has been regulated by law under strict conditions in the Netherlands since 2002. Since then the number of euthanasia cases has constantly increased, and increased exponentially for patients with dementia (PWD). The number of euthanasia requests by such patients is even higher. Recently, an interview study showed that physicians who are confronted with a PWD's euthanasia request experience problems with communication, pressure from relatives, patients, and society, workload, interpretation of the law, and ethical considerations. Moreover, if honoured, the physician and patient may interpret the right moment for euthanasia differently. AIM: To identify ways of supporting GPs confronted with a PWD's euthanasia request. DESIGN AND SETTING: Two expert nominal group meetings were organised with Dutch care physicians for older people, GPs, legal experts, a healthcare chaplain, a palliative care consultant, and a psychologist. METHOD: A total of 15 experts participated in the meetings. Both meetings were audio-recorded, transcribed verbatim, and analysed using thematic analysis. RESULTS: Four themes emerged from the meetings: support provided by healthcare professionals, influencing public opinion, educational activities, and managing time and work pressure. The need for support was considered highest for GPs for all of these themes. CONCLUSION: Consensus was reached with the help of experts on support needs for GPs confronted with euthanasia requests from PWD. A concise and clear explanation of the law is strongly desired. Changing public opinion seems the most challenging and a long-term aim. Communication training for finding the right balance between the physician's professional responsibility and the patient's autonomy should be made available, as a short-term aim.

Advance care planning with people with dementia: a process evaluation of an educational intervention for general practitioners.

BACKGROUND: General practitioners (GPs) are advised to offer advance care planning (ACP) to people with dementia (PWD). In a randomized controlled trial, an educational intervention for GPs aimed at initiating and optimizing ACP proved to be effective. During the intervention most GPs were accompanied by their practice nurse (PN). To provide insights into the intervention's successful components and what could be improved, we conducted a process evaluation and explored implementation, mechanisms of impact and contextual factors. METHODS: We used the Medical Research Council guidance for process evaluations. Implementation was explored identifying reach and acceptability. We performed descriptive analyses of participants' characteristics; selection, inclusion and intervention attendance; a GP post-intervention survey on initiating ACP; a post intervention focus group with trainers of the intervention. Mechanisms of impact were explored identifying adoption and appropriateness. We used: participants' intervention ratings; a GP post-intervention survey on conducting ACP; ACP documentation in PWD's medical files; post-intervention interviews with PWD/FC dyads. All data was used to identify contextual factors. RESULTS: The intervention was implemented by a small percentage of the total Dutch GP population invited, who mostly included motivated PWD/FC dyads with relatively little burden, and PWD with limited cognitive decline. The mechanisms of impact for GPs were: interactively learning to initiate ACP with training actors with a heterogeneous group of GPs and PNs. For PWD/FCs dyads, discussing non-medical preferences was most essential regarding their SDM experience and QoL. Some dyads however found ACP stressful and not feasible. Younger female GPs more often initiated ACP. Male PWD and those with mild dementia more often had had ACP. These characteristics and the safe and intimate training setting, were important contextual facilitators. CONCLUSION: We recommend Interventions aimed at improving ACP initiation with PWD by GPs to include interactive components and discussion of non-medical preferences. A safe environment and a heterogeneous group of participants facilitates such interventions. However, in practice not all FC/PWD dyads will be ready to start. Therefore, it is necessary to check their willingness when ACP is offered.

Educating Dutch General Practitioners in Dementia Advance Care Planning: A Cluster Randomized Controlled Trial.

OBJECTIVES: Advance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care. DESIGN: A single-blinded cluster randomized controlled trial. SETTING AND PARTICIPANTS: In 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice. METHODS: Intervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering. RESULTS: 38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P = .002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P = .003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P < .001) preferences per person with dementia than control group GPs. CONCLUSIONS AND IMPLICATIONS: Our educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown.

Euthanasia requests in dementia cases; what are experiences and needs of Dutch physicians? A qualitative interview study.

BACKGROUND: In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive (AED) can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia (PWDs) share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into the experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia (PWD). METHODS: We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis. RESULTS: Eleven general practitioners (GPs) and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society's negative view of dementia in combination with the 'right to die' view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs. CONCLUSIONS: Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration.

The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study.

BACKGROUND: ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia. METHODS: A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes. RESULTS: Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers. CONCLUSIONS: ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.

Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review.

BACKGROUND: Due to the disease's progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding relationships with their patients and their early involvement with the disease, however ACP is seldom applied. AIM: To determine the barriers and facilitators faced by GPs related to ACP with people with dementia. DATA SOURCES: We systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl's method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis. RESULTS: Ten qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia's decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life. CONCLUSION: Discussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions.

The influence of social support on patients' quality of life after an intensive care unit discharge: A cross-sectional survey.

OBJECTIVES: To determine the influence of instrumental, emotional and informative support on the quality of life of former intensive care unit (ICU) patients and to establish their preferred sources of social support. RESEARCH METHODOLOGY: In a cross-sectional survey, former intensive care patients (n=88) completed the "social support interactions/discrepancies list", the "RAND-36 Health Survey" and reported their preferred sources of the different types of social support. SETTING: A 35 bed intensive care unit in the Radboudumc university hospital in the Netherlands. MAIN OUTCOME MEASURES: Psychological, physical and social domains of quality of life and patient preferences regarding sources of social support. RESULTS: Instrumental and emotional support show a buffering effect on the physical dimension of the quality of life. The discrepancies between the expected and the received instrumental, informative and emotional support have a negative influence on psychological quality of life. Former ICU patients prefer receiving social support from family members rather than friends, professional caregivers or fellow former ICU patients. CONCLUSION: This study emphasises the buffering effect of social support on diminished quality of life in former intensive care patients. It is suggested that hospitals provide an intensive care after-care programme including both patients and relatives to help fulfilling this need for social support.