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ObjectivesTo understand the facilitators and barriers to hospice staff engagement of patients and surrogates in advance care planning (ACP) conversations.DesignQualitative study conducted with purposive sampling and semistructured interviews using ATLAS.ti software to assist with template analysis.Settings and participantsParticipants included 51 hospice professionals (31 clinicians, 13 leaders, and 7 quality improvement administrators) from 4 geographically distinct nonprofit US hospices serving more than 2700 people.MeasuresInterview domains were derived from the implementation science framework of Capability, Opportunity, Motivation, and Behavior (COM-B), with additional questions soliciting recommendations for behavior change. Differences in themes were reconciled by consensus. The facilitator, barrier, and recommendation themes were organized within the COM-B framework.ResultsCapability was facilitated by interdisciplinary teamwork and specified clinical staff roles and inhibited by lack of self-perceived skill in engaging in ACP conversations. Opportunities for ACP occurred during admission to hospice, acute changes, or deterioration in patient condition. Opportunity-related environmental barriers included time constraints such as short patient stay in hospice and workload expectations that prevented clinicians from spending more time with patients and families. Motivation to discuss ACP was facilitated by the employee's goal of providing personalized, patient-centered care. Implicit assumptions about patients' and families' preferences reduced staff's motivation to engage in ACP. Hospice staff made recommendations to improve ACP discussions, including training and modeling practice sessions, earlier introduction of ACP concepts by clinicians in prehospice settings, and increasing workforce diversity to reflect the patient populations the organizations want to reach and cultural competency.Conclusions and implicationsEven hospice staff can be uncomfortable discussing death and dying. Yet staff were able to identify what worked well. Solutions to increase behavior of ACP engagement included staff training and modeling practice sessions, introducing ACP prior to hospice, and increasing workforce diversity to improve cultural competency.

To systematically synthesize the views of community-dwelling Asians on Advance care planning and to summarize the factors and reasons affecting their uptake of ACP. Mixed-methods systematic review (PROSPERO: CRD42018091033). Asian adults (≥18 years old) living in the community globally. Medline (Ovid), Web of Science, CINAHL (EBSCO), Open Grey, and Google Scholar were searched from inception to June 30, 2022. Qualitative, quantitative, or mixed-methods studies reporting on the views of non–seriously ill community-dwelling Asian adults on ACP or the factors influencing their ACP uptake were included. Secondary research, studies not published in English, or studies not available as full text were excluded. Two independent teams of researchers extracted data, assessed methodologic quality, and performed the data analysis. Data analysis was conducted using the multistep convergent integrated approach based on Joanna Briggs Institute methodology for mixed-methods systematic review. Fifty-eight studies were included. Non–seriously ill community-dwelling Asians were willing to engage in ACP (46.5%-84.4%) although their awareness (3.1%-42.9%) and uptake of ACP remained low (14.0%-53.4%). Background factors (sociodemographic factors, and health status, as well as experience and exposure to information) and underlying beliefs (attitude toward ACP, subjective norm, and perceived behavioral control) were found to affect their uptake of ACP. A conceptual framework was developed to facilitate a proper approach to ACP for this population. A flexible approach toward ACP is needed for non–seriously ill community-dwelling Asians. There is also a need to raise end-of-life and ACP literacy, and to explore ways to narrow the gap in the expectations and implementation of ACP so that trust in its effective execution can be built. [ABSTRACT FROM AUTHOR]

Discussions between health professionals and nursing home (NH) residents or their families about the current or future goals of health care may be associated with better outcomes at the end of life (EOL), such as avoidance of unwanted interventions or death in hospital. The timing of these discussions varies, and it is possible that their influence on EOL outcomes depends on their timing. This study synthesized current evidence concerning the timing of goals of care (GOC) discussions in NHs and its impact on EOL outcomes. Systematic review. Adult populations in NH settings. This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. We searched PubMed, Embase, and Cumulative Index of Nursing and Allied Health from January 2000 to September 2022. We included studies that examined timing of GOC discussions in NHs, were peer-reviewed, and published in English. Quality of the studies was assessed using the Newcastle-Ottawa Scale. Screening of 1930 abstracts yielded 149 papers that were evaluated for eligibility. Of the 18 articles, representing 16 distinct studies that met review criteria, 12 evaluated the timing of advance directives. There was variation in the timing of GOC discussions and compared with discussions that occurred within a month of death, earlier discussions (eg, at the time of facility admission) were associated with lower rates of hospitalization at the EOL and lower health care costs. The timing of GOC discussions in NHs varies and evidence suggests that late discussions are associated with poorer EOL outcomes. The benefits of goal-concordant care may be enhanced by earlier and more frequent discussions. Future studies should examine the optimal timing for GOC discussions in the NH population. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) within nursing homes (NHs) is an integral component of resident-centered care yet remains an ongoing area for improvement. This study explored health care providers' experiences when facilitating ACP discussions with residents and their families. Interpretive description was used to explore meanings and generate knowledge that is applicable for clinical contexts. A purposive sample of 27 staff members (2 directors of care, 3 assistant directors of care, 1 nurse practitioner, 11 registered nurses, 3 registered practical nurses, and 7 social workers) from 29 NHs located across 3 Canadian provinces that participated in cluster-randomized intervention study to improve ACP. Semistructured interviews were conducted between January and July 2020. Interpretive description methods were used for analysis. Three themes were identified. "Navigating Relational Tensions During ACP with Families" captures the relational tensions that participants experienced while navigating ACP processes with residents and their families. The second theme, "Where's the Doctor?" highlights the general lack of physician involvement in ACP discussions and the subsequent pressures faced by participants when supporting residents and families. The last theme, "Crises Change the Best Laid Plans," illustrates the challenges participants face when trying to adhere to existing care plans during residents' medical crises. Participants' experiences indicate that current ACP processes in NHs do not meet the needs of residents, families, or care teams. Additional support from physicians and changes to structural processes are needed to support resident-centered end-of-life planning within this care context. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is considered a best practice in the nursing home setting; however, there is a lack of consistency in the training of nursing home staff and implementation of structured ACP programs. A qualitative study interviewing ACP specialists in nursing homes was conducted to understand the experience of staff engaged in Aligning Patient Preferences – a Role offering Alzheimer's patients, Caregivers, and Healthcare providers Education and Support (APPROACHES), an embedded pragmatic clinical trial to improve ACP. Qualitative interviews regarding ACP specialists' experiences and perceived intervention impact. Staff of intervention-assigned nursing home facilities who completed a minimum of 10 ACP conversations with residents during APPROACHES program implementation. Fourteen staff were interviewed. Interviews were transcribed and coded by the research team. There were 21 codes identified that were then distilled into the following 5 themes: (1) experiences with the ACP specialist program, (2) engaging in ACP conversations, (3) considerations related to dementia, (4) benefits and challenges of ACP, and (5) involvement of multiple people in the ACP process. Participant responses suggested variability in experiences with the ACP specialist program and highlighted many aspects relevant to engaging in conversations with families and residents, particularly those living with dementia. Benefits of ACP, including relationship building and increased preparedness for changes in health status, were balanced with challenges related to sensitive conversation topics and logistical difficulties in scheduling ACP discussions. ACP specialists discussed the multiple roles that others played in the ACP process. Findings from this analysis provide insights into tailoring APPROACHES and other ACP programs for full-scale implementation in the nursing home setting. Nursing home staff experiences tailoring the program to fit their environments were reflective of the pragmatic nature of the ACP specialist program. [ABSTRACT FROM AUTHOR]

Our primary objective was to determine if more comprehensive advance care planning (ACP) documentation was associated with fewer transfers to hospital in the last year of life. Our secondary objective was to determine the impact of ACP processes and practices on hospital transfers in the last year of life. Retrospective cohort study. Long-term care (LTC) residents in Ontario, Canada, 65 years and older who died between January 1, 2017, and May 30, 2018, and resided in a participating LTC home. We administered a survey to directors of care at LTC homes inquiring about ACP practices. Our exposure of interest was living in a home with comprehensive ACP documentation that includes information beyond preferences for cardiopulmonary resuscitation and hospital transfer. Our primary outcome was the number of transfers to hospital in the last year of life. We fit negative binomial regression models to determine the independent effect of comprehensive ACP and other indicators of ACP quality. A total of 157 LTC homes with 6637 decedent residents were included in our study; 2942 lived in homes with comprehensive ACP documentation and 3695 had non-comprehensive ACP documents. Comprehensive documentation was not associated with fewer hospital transfers in the final year of life [incidence rat ratio (IRR), 1.00; 95% CI, 0.91–1.09]. ACP documentation update frequency, availability of ACP documents in the electronic medical record, referring to ACP documents during a health crisis, inclusion of resident values in ACP documents, and involvement of a multidisciplinary team were all associated with fewer transfers to hospital during follow-up in the last year of life. ACP documents that contain information beyond preferences for cardiopulmonary resuscitation and hospital transfer had no association with transfers to hospital, but high-quality ACP practices and processes were associated with fewer transfers. [ABSTRACT FROM AUTHOR]

The distinctive differences in clinical needs and disease trajectory between people with young-onset (YOD) and late-onset dementia (LOD) make dementia palliative care unique. Limited studies have reported on the differences in palliative care needs between YOD and LOD, and the optimal time point to introduce palliative care in YOD remains controversial. We performed a systematic review to summarize key issues surrounding palliative care in YOD and highlight unmet needs in this pertinent area. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we searched the PubMed database for all studies published between January 2000 and July 2022 that reported on palliative care in YOD. Of 32 records identified, 8 articles were eligible for inclusion. The top 3 themes extracted centered around (1) clinical differences between YOD and LOD, (2) symptoms and causes of death in end-stage YOD, and (3) the importance of early advanced care planning (ACP). YOD diagnosis is often delayed and people with YOD have fewer somatic comorbidities but more neuropsychiatric symptoms, longer survival times, and a more malignant disease course. People with YOD and their families face unique psychosocial challenges when symptoms start at a younger age. End-stage YOD is not dissimilar to LOD where patients suffer from a broad spectrum of physical and psychological symptoms requiring palliation. Early initiation of ACP discussion is crucial in YOD given the more rapid progression of disease affecting cognition and decision-making capacity; however, rates of ACP completion in YOD remain low. Given the complex care needs and more rapid disease trajectory in YOD, palliative care in YOD should be considered from the time of diagnosis, and to be incorporated into routine dementia care. [ABSTRACT FROM AUTHOR]

To compare the evolution of quality of life (QoL) in nursing home residents (NHRs) with and without (hospitalization for) pneumonia. Twelve-month prospective, observational study. Participants of the Incidence of pNeumonia and related ConseqUences in nursing home Resident (INCUR) study were included. The INCUR study included 800 NHRs in France for which comprehensive assessments were performed at baseline, 6 months, and 12 months in 2012-2013. Participants' health related QoL was assessed at 3 time points: baseline, 6 months, and 12 months. NHRs with or without pneumonia and hospitalizations for this condition at any time during follow-up were compared using adjusted mixed effects linear regressions on the QoL outcome. Pre- and postpneumonia QoL were compared using a Wilcoxon signed-rank test. A total of 622 NHRs (mean age 86.2 years; 73.3% women) were included; 13.8% (n = 86) died, 19.9% (n = 124) developed at least 1 episode of pneumonia and 6.4% (n = 40) were hospitalized for pneumonia. Median QoL was 70 at baseline [n = 436, interquartile range (IQR) = 50-90], 80 at 6 months (n = 546, IQR = 50-90), and 76 at 12 months (n = 468, IQR = 50-80). QoL in NHRs with pneumonia showed a 2-point decrease during the 12-month follow-up, whereas QoL in NHRs without pneumonia showed an 8-point increase during follow-up. QoL in NHR hospitalized for pneumonia showed a 16-point decrease during the 12-month follow-up, whereas QoL in NHRs in the control group showed a 6-point increase. In linear regressions, neither pneumonia nor hospitalization for pneumonia were significantly associated with the evolution of QoL during follow-up. No significant difference was found between pre- and postpneumonia QoL. QoL in NHRs remains stable over 12 months regardless of pneumonia events but seems to decline in NHRs hospitalized for pneumonia. Uncaptured short-term variations of QoL after pneumonia and/or related hospitalizations may occur. [ABSTRACT FROM AUTHOR]

Home health care patients who are at risk for becoming Incapacitated with No Evident Advance Directives or Surrogates (INEADS) may benefit from timely intervention to assist them with advance care planning. This study aimed to develop natural language processing algorithms for identifying home care patients who do not have advance directives, family members, or close social contacts who can serve as surrogate decision-makers in the event that they lose decisional capacity. Cross-sectional study of electronic health records. Patients receiving post-acute care discharge services from a large home health agency in New York City in 2019 (n = 45,390 enrollment episodes). We developed a natural language processing algorithm for identifying information documented in free-text clinical notes (n = 1,429,030 notes) related to 4 categories: evidence of close relationships, evidence of advance directives, evidence suggesting lack of close relationships, and evidence suggesting lack of advance directives. We validated the algorithm against Gold Standard clinician review for 50 patients (n = 314 notes) to calculate precision, recall, and F-score. Algorithm performance for identifying text related to the 4 categories was excellent (average F-score = 0.91), with the best results for "evidence of close relationships" (F-score = 0.99) and the worst results for "evidence of advance directives" (F-score = 0.86). The algorithm identified 22% of all clinical notes (313,290 of 1,429,030) as having text related to 1 or more categories. More than 98% of enrollment episodes (48,164 of 49,141) included at least 1 clinical note containing text related to 1 or more categories. This study establishes the feasibility of creating an automated screening algorithm to aid home health care agencies with identifying patients at risk of becoming INEADS. This screening algorithm can be applied as part of a multipronged approach to facilitate clinician support for advance care planning with patients at risk of becoming INEADS. [ABSTRACT FROM AUTHOR]

To determine the relationship between an advance care planning (ACP) video intervention, Pragmatic Trial of Video Education in Nursing Homes (PROVEN), and end-of-life health care transitions among long-stay nursing home residents with advanced illness. Pragmatic cluster randomized clinical trial. Five ACP videos were available on tablets or online at intervention facilities. PROVEN champions employed by nursing homes (usually social workers) were directed to offer residents (or their proxies) ≥1 video under certain circumstances. Control facilities employed usual ACP practices. PROVEN occurred from February 2016 to May 2019 in 360 nursing homes (119 intervention, 241 control) owned by 2 health care systems. This post hoc study of PROVEN data analyzed long-stay residents ≥65 years who died during the trial who had either advanced dementia or cardiopulmonary disease (advanced illness). We required an observation time ≥90 days before death. The analytic sample included 923 and 1925 advanced illness decedents in intervention and control arms; respectively. Outcomes included the proportion of residents with 1 or more hospital transfer (ie, hospitalization, emergency department use, or observation stay), multiple (≥3) hospital transfers during the last 90 days of life, and late transitions (ie, hospital transfer during the last 3 days or hospice admission on the last day of life). Hospital transfers in the last 90 days of life among decedents with advanced illness were significantly lower in the intervention vs control arm (proportion difference = −1.7%, 95% CI –3.2%, −0.1%). The proportion of decedents with multiple hospital transfers and late transitions did not differ between the trial arms. Video-assisted ACP was modestly associated with reduced hospital transfers in the last 90 days of life among nursing home residents with advanced illness. The intervention was not significantly associated with late health care transitions and multiple hospital transfers. [ABSTRACT FROM AUTHOR]

POLST (Physician Orders for Life-Sustaining Treatment) is a medical order form used to document preferences about cardiopulmonary resuscitation (CPR), medical interventions such as hospitalization, care in the intensive care unit, and/or ventilation, as well as artificial nutrition. Programs based on the POLST paradigm are used in virtually every state under names that include POST (Physician Orders for Scope of Treatment), MOLST (Medical Orders for Life-Sustaining Treatment), and MOST (Medical Orders for Scope of Treatment), and these forms are used in the care of hundreds of thousands of geriatric patients every year. Although POLST is intended for persons who are at risk of a life-threatening clinical event due to a serious life-limiting medical condition, some nursing homes and residential care settings use POLST to document CPR preferences for all residents, resulting in potentially inappropriate use with patients who are ineligible because they are too healthy. This article focuses on reasons that POLST is used as a default code status order form, the risks associated with this practice, and recommendations for nursing homes to implement appropriate use of POLST. [ABSTRACT FROM AUTHOR]

POLST is widely used in the care of seriously ill patients to document decisions made during advance care planning (ACP) conversations as actionable medical orders. We conducted an integrative review of existing research to better understand associations between POLST use and key ACP outcomes as well as to identify directions for future research. Integrative review. Not applicable. We queried PubMed and CINAHL databases using names of POLST programs to identify research on POLST. We abstracted study information and assessed study design quality. Study outcomes were categorized using the international ACP Outcomes Framework: Process, Action, Quality of Care, Health Status, and Healthcare Utilization. Of 94 POLST studies identified, 38 (40%) had at least a moderate level of study design quality and 15 (16%) included comparisons between POLST vs non-POLST patient groups. There was a significant difference between groups for 40 of 70 (57%) ACP outcomes. The highest proportion of significant outcomes was in Quality of Care (15 of 19 or 79%). In subdomain analyses of Quality of Care, POLST use was significantly associated with concordance between treatment and documentation (14 of 18 or 78%) and preferences concordant with documentation (1 of 1 or 100%). The Action outcome domain had the second highest positive rate among outcome domains; 9 of 12 (75%) Action outcomes were significant. Healthcare Utilization outcomes were the most frequently assessed and approximately half (16 of 35 or 46%) were significant. Health Status outcomes were not significant (0 of 4 or 0%), and no Process outcomes were identified. Findings of this review indicate that POLST use is significantly associated with a Quality of Care and Action outcomes, albeit in nonrandomized studies. Future research on POLST should focus on prospective mixed methods studies and high-quality pragmatic trials that assess a broad range of person and health system–level outcomes. [ABSTRACT FROM AUTHOR]

This study presents the design of an integrated, proactive palliative care pathway covering the full care cycle and evaluates its effects using 3 types of outcomes: (1) physician-reported outcomes, (2) outcomes reported by family, and (3) (utilization of) health care outcomes. A clustered, partially controlled before-after study with a multidisciplinary integrated palliative care pathway as its main intervention. after assessment in hospital departments of oncology, and geriatrics, and in 13 primary care facilities, terminally ill patients were proactively included into the pathway. Patients' relatives and patients' general practitioners (GPs) participated in a before/after survey and in interviews and focus groups. A multidisciplinary, integrated palliative care pathway encompassing (among others) early identification of the palliative phase, multidisciplinary consultation and coordination, and continuous monitoring of outcomes. Measures included GP questionnaire: perceived quality of palliative care; questionnaires by family members: FAMCARE, QOD-LTC, EDIZ; and 3 types of health care outcomes: (1) utilization of primary care: consultations, intensive care, communication, palliative home visits, consultations and home visits during weekends and out-of-office-hours, ambulance, admission to hospital; (2) utilization of hospital care: outpatient ward consultations, day care, emergency room visits, inpatient care, (radio) diagnostics, surgical procedures, other therapeutic activities, intensive care unit activities; (3) pharmaceutical care utilization. GPs reported that palliative patients die more often at their preferred place of death, and that they now act more proactively toward palliative patients. Relatives of included, deceased patients reported clinically relevant improved quality of dying, and more timely palliative care. Patients in the pathway received more (intensive) primary care, less unexpected care during out-of-office hours, and more often received hospital care in the form of day care. An integrated palliative care pathway improves a variety of clinical outcomes important to patients, their families, physicians, and the health care system. The integration of palliative care into multidisciplinary, proactive palliative care pathways, is therefore a desirable future development. [ABSTRACT FROM AUTHOR]

The aim was to review evidence from all randomized controlled trials (RCTs) using palliative care education or staff training as an intervention to improve nursing home residents' quality of life (QOL) or quality of dying (QOD) or to reduce burdensome hospitalizations. A systematic review with a narrative summary. Residents in nursing homes and other long-term care facilities. We searched MEDLINE, CINAHL, PsycINFO, the Cochrane Library, Scopus, and Google Scholar, references of known articles, previous reviews, and recent volumes of key journals. RCTs were included in the review. Methodologic quality was assessed. The search yielded 932 articles after removing the duplicates. Of them, 16 cluster RCTs fulfilled inclusion criteria for analysis. There was a great variety in the interventions with respect to learning methods, intensity, complexity, and length of staff training. Most interventions featured other elements besides staff training. In the 6 high-quality trials, only 1 showed a reduction in hospitalizations, whereas among 6 moderate-quality trials 2 suggested a reduction in hospitalizations. None of the high-quality trials showed effects on residents' QOL or QOD. Staff reported an improved QOD in 1 moderate-quality trial. Irrespective of the means of staff training, there were surprisingly few effects of education on residents' QOL, QOD, or burdensome hospitalizations. Further studies are needed to explore the reasons behind these findings. [ABSTRACT FROM AUTHOR]

Describe the care preference changes among nursing home residents receiving proactive Advance Care Planning (ACP) conversations from health care practitioners during the COVID-19 pandemic. Retrospective chart review. Nursing home residents (n = 963) or their surrogate decision makers had at least 1 ACP conversation with a primary health care practitioner between April 1, 2020, and May 30, 2020, and made decisions of any changes in code status and hospitalization preferences. Health care practitioners conducted ACP conversations proactively with residents or their surrogate decision makers at 15 nursing homes in a metropolitan area of the southwestern United States between April 1, 2020, and May 30, 2020. ACP conversations reviewed code status and goals of care including Do Not Hospitalize (DNH) care preference. Resident age, gender, code status, and DNH choice before and after the ACP conversations were documented. Descriptive data analyses identified significant changes in resident care preferences before and after ACP conversations. Before the most recent ACP discussion, 361 residents were full code status and the rest were Out of Hospital Do Not Resuscitate (DNR). Of the individuals with Out of Hospital DNR, 188 residents also chose DNH. After the ACP conversation, 88 residents opted to change from full code status to Out of Hospital DNR, thereby increasing the percentage of residents with Out of Hospital DNR from 63% to 72%. Almost half of the residents decided to keep or change to the DNH care option after the ACP conversation. Proactive ACP conversations during COVID-19 increased DNH from less than a quarter to almost half among the nursing home residents. Out of Hospital DNR increased by 9%. It is important for all health care practitioners to proactively review ACP with nursing home residents and their surrogate decision makers during a pandemic, thereby ensuring care consistent with personal goals of care and avoiding unnecessary hospitalizations. [ABSTRACT FROM AUTHOR]

The exigencies of managing acutely ill residents within nursing homes have led to an increase in ambulance conveyances to the emergency department. This is further compounded by a shortage of adequately trained nursing staff and on-site physicians available around the clock. An acute regional hospital, strategically located in the epicenter of nursing home facilities in Singapore, encountered this challenge on its inception in 2018 within the northeast region. In response, the institution initiated a collaboration, EAGLEcareACT (Enhancing Advance Care Planning, Geriatrics, and End-of-Life Care Acute Care Team), aimed at rectifying the prevailing care disparities between neighboring nursing homes and the hospital. Within the EAGLEcareACT, a systematic and comprehensive approach was undertaken to engage diverse nursing homes, delineate precise needs, and establish mutually shared objectives. This encompassed the provisioning of monitoring of patients treated for acute medical conditions, structured training programs for nursing staff and aids in advance care planning. Teleconsultations with EAGLEcareACT team obviate the immediate necessity for conveyance to the emergency department., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Residents in long-term care settings are particularly vulnerable to COVID-19 infections and, compared to younger adults, are at higher risk of poor outcomes and death. Given the poor prognosis of resuscitation outcomes for COVID-19 in general, the specter of COVID-19 in long-term care residents should prompt revisiting goals of care. Visitor restriction policies enacted to reduce the risk of transmission of COVID-19 to long-term care residents requires advance care planning discussions to be conducted remotely. A structured approach can help guide discussions regarding the diagnosis, expected course, and care of individuals with COVID-19 in long-term care settings. Information should be shared in a transparent and comprehensive manner to allay the increased anxiety that families may feel during this time. To achieve this, we propose an evidence-based COVID-19 Communication and Care Planning Tool that allows for an informed consent process and shared decision making between the clinician, resident, and their family. [ABSTRACT FROM AUTHOR]

Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers. An exploratory qualitative study. We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient. We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis. Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians. Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made. [ABSTRACT FROM AUTHOR]

Long-term care (LTC) is an important setting for goals of care (GoC) discussions. Understanding clinician barriers to GoC discussions could identify opportunities for LTC-specific interventions to improve quantity and quality of GoC discussions in the context of serious illness. A multicenter, cross-sectional survey study. 1184 LTC clinicians from 34 Ontario LTC homes were invited to participate. The questionnaire assessed (1) clinician barriers related to the LTC resident power of attorney (POA), the health care provider, and the health care system; (2) willingness to engage in GoC discussions; and (3) suggestions to address identified barriers. Responses were rated on a 7-point scale (1 = extremely unimportant/unwilling, 7 = extremely important/willing). A linear mixed-effects model determined significance between mean importance ratings for each barrier and the willingness to engage in GoC discussion between physicians and nurses. A simple content analysis was performed on written suggestions to address GoC discussion barriers. The overall response rate was 49% (581/1184). The top 3 rated barriers were (1) POA's difficulty accepting their loved one's poor prognosis, (2) POA's difficulty understanding the limitations and complications of life-sustaining therapies, and (3) lack of adequate documentation of prior discussions with LTC resident or POA. Barriers related to the health care provider, and the health care system, were deemed statistically more important by nurses. LTC physicians were more willing to exchange information, be a decision coach, and participate in the final decision than nurses. Suggestions to improve GoC discussions include a dedicated team to have these conversations in LTC, and updating policies to mandate and standardize these conversations at all family meetings. This study has identified key LTC clinician–identified barriers to GoC discussions. Developing targeted interventions to these barriers could be the foundation for developing new interventions that support high-quality GoC discussions. [ABSTRACT FROM AUTHOR]

The Ethics Subcommittee of AMDA–The Society for Post-Acute and Long-Term Care Medicine ("The Society") presents arguments for and against Stopping Eating and Drinking by Advance Directives (SED by AD). SED by AD is a type of advance directive in which a proxy is instructed to stop offering food and fluids to a person when they reach a certain stage of dementia. Although most conversations regarding SED by AD focus on patient autonomy and the right to determine one's care, we propose that the ethical principle of justice—the obligation to treat all individuals equally regardless of race, gender, and physical or cognitive ability—is the decisive principle in this controversy. We also suggest that implementing SED by AD can violate a physician's obligation to beneficence and nonmaleficence. On the other hand, we identify with the families of our patients who see the refusal to follow an advance directive as an injustice of the highest order. In the end, The Society is convinced that no choice can be made here without practicing an injustice: if one refuses to implement SED by AD, one violates the autonomy of the person who drew up the advance directive. If, on the other hand, one refuses food and fluid to a resident who still accepts food, one risks practicing an injustice against that person as they are now. Recognizing that we have the greatest responsibility to our patients as they present to us in the residential setting, The Society recommends against implementing SED by AD in residents who still accept food and fluids, implementing instead, a policy of comfort feeding for those with advanced dementia. [ABSTRACT FROM AUTHOR]

Abstract Objectives This article reports findings on the usability and staff use of 5 condition- specific pamphlets of high prevalence in long-term care (LTC): dementia, heart failure, chronic obstructive pulmonary disease, renal failure, and frailty. The pamphlets were created in response to residents', families', and staff's recommendations for activating early reflections and communication about end-of-life care. Design A mixed-method (qualitative and quantitative) survey design was used. Step 1 collected survey data on the usability of the pamphlets. Step 2 collected survey data on pamphlet use. Settings and Participants Two nurses with specialized palliative care training, 2 resident/family representatives, 10 condition-specific specialists, and 33 LTC palliative leads reviewed the pamphlets for usability prior to distribution. A total of 178 LTC home staff in 4 participating LTC homes reported on pamphlet use. Measures Specialists and resident/family representatives were asked to provide open comments and LTC home palliative leads were asked to complete a survey on the accuracy, readability, and relevance of the pamphlets. After 6 months of distribution, all staff in participating LTC homes were asked to complete a survey on pamphlet use, usefulness, and comfort with distribution. Results The pamphlets were reportedly accurate, relevant, and easy to understand. Following 6 months of availability, most staff in LTC had read the pamphlets, found the information useful, and planned to share them. However, half of the staff questioned their role in pamphlet distribution and most had not distributed them. Regulated staff (ie, staff affiliated with a regulated profession) expressed more comfort sharing the pamphlets than care aides and support staff. Conclusions/Implications Condition-specific pamphlets appear to hold promise in providing residents and families with relevant information that may activate early reflections and conversations about end-of-life care. However, structured implementation strategies, training, and discussions are required to improve staff comfort with distribution and explore roles in distribution and follow-up. [ABSTRACT FROM AUTHOR]

Abstract Objectives To investigate if the multicomponent intervention of the COSMOS trial, combining communication, systematic pain management, medication review, and activities, improved quality of life (QoL) in nursing home patients with complex needs. Design Multicenter, cluster-randomized, single-blinded, controlled trial. Setting Thirty-three nursing homes with 67 units (clusters) from 8 Norwegian municipalities. Participants Seven hundred twenty-three patients with and without dementia (≥65 years) were cluster randomized to usual care or intervention in which health care staff received standardized education and on-site training for 4 months with follow-up at month 9. Measurements Primary outcome was change in QoL as measured by QUALIDEM (QoL dementia scale); QUALID (QoL late-stage dementia scale), and EQ-VAS (European QoL–visual analog scale) from baseline to month 4. Secondary outcomes were activities of daily living (ADL), total medication, staff distress, and clinical global impressions of change (CGIC). Results During the active intervention, all 3 QoL measures worsened, 2 significantly (QUALID P =.04; QUALIDEM P =.002). However, follow-up analysis from month 4 to 9 showed an intervention effect for EQ-VAS (P =.003) and QUALIDEM total score (P =.01; care relationship P =.02; positive affect P =.04, social relations P =.01). The secondary outcomes of ADL function, reduction of medication (including psychotropics) and staff distress, improved significantly from baseline to month 4. Intervention effects were also demonstrated for CGIC at month 4 (P =.023) and 9 (P =.009), mainly because of deterioration in the control group. Conclusion and implications Temporarily, the QoL decreased in the intervention group, leading to our hypothesis that health care staff may be overwhelmed by the work-intensive COSMOS intervention period. However, the decrease reversed significantly during follow-up, indicating a potential learning effect. Further, the intervention group improved in ADL function and received less medication, and staff reported less distress and judged COSMOS as able to bring about clinically relevant change. This suggests that nonpharmacologic multicomponent interventions require long follow-up to ensure uptake and beneficial effects. [ABSTRACT FROM AUTHOR]

Abstract Background Advance care planning (ACP) is a communicative process of defining preferences for future medical care. Conversation guides support professionals to conduct ACP conversations, yet insight into essential components is limited. Objectives To evaluate the content, rationale, and empirical evidence on the effect of ACP interventions based on conversation guides. Methods MEDLINE, Embase, PsycINFO, and CINAHL were searched from January 1, 1998, to February 23, 2018, to identify peer-reviewed articles describing or evaluating ACP interventions based on scripted conversation guides. A thematic analysis of the guides was performed. Data on intervention characteristics, underlying rationale, and empirical evidence were extracted by 2 authors independently using a predesigned form. Assessment of risk of bias and quality of reporting was performed using Cochrane tools and COREQ, respectively. Results Eighty-two articles reporting on 34 unique interventions met the inclusion criteria. Analysis of the conversation guides revealed a framework for ACP conversations consisting of 4 phases: preparation, initiation, exploration, and action. Exploration of patient's perspectives on illness, living well, end-of-life (EOL) issues, and decision making formed the core part of the guides. Their design was often expert-based, without an underlying theoretical background. Empirical evidence on the effect of the interventions was based on heterogeneous outcome measures. Dyad congruence and preference documentation rates increased among intervention subjects in most studies. The studies showed varying effects on knowledge of ACP, decisional conflict, quality of communication, and preferences-concordant care. Qualitative research showed that participants appreciate the importance and benefits of ACP conversations, yet perceive them as difficult and emotional. Conclusion ACP conversation guides address a diversity of themes regarding illness, EOL issues, and decision making. There is a focus on the exploration of patient's perspectives and preferences. Evidence on the translation of explorative information into specific treatment preferences and consequences for care as provided is limited. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) interventions are implemented to achieve outcomes such as improving end-of-life care and increasing goal-concordant care. ACP has been studied across various settings, but it is important to study the impacts of ACP in nursing homes. To review and evaluate the outcomes of ACP interventions in nursing homes. Systematic review of randomized controlled trials. A search was last performed on March 27, 2023, using MEDLINE, Embase, CINAHL Complete, Cochrane Library, and clinicaltrials.gov. Eligible studies were randomized controlled trials that studied the impact of ACP interventions in nursing homes with residents over the age of 18. The Cochrane Risk of Bias tool 2.0 was used to determine the studies' risk of bias. The ACP Outcomes Framework was utilized to organize the results into 5 domains: Process, Action, Quality of Care, Health Status, and Health Care Utilization. No meta-analysis was possible because of heterogeneity in study interventions and outcomes. Twenty-three studies met criteria for inclusion in this review. Most studies were at low or medium risk of bias. The study interventions included resident and family education, staff education, structured discussions, communication with primary medical teams, and use of specialists. A slight majority of Action and Process outcomes were positive, whereas Quality of Care outcomes were mixed. A minority of Health Care Utilization and Health Status outcomes were positive. Multi-component interventions and interventions featuring staff education were often successful. ACP interventions in nursing homes yield beneficial outcomes in some domains. Limitations to this review include the presence of heterogeneity in types of study interventions and outcomes, as well as underpowering of many study outcomes. Further work is needed to improve ACP implementation, identify which interventions are most beneficial, and ensure sustainability of beneficial interventions. [ABSTRACT FROM AUTHOR]

Huntington disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become impaired as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). Elderly care physicians (ECPs) can play an important role in ACP in HD patients. However, little is known about their experiences in this role. The aim of this study is to gain insight into how ECPs practice ACP with HD patients. A qualitative interview study. Nine ECPs working in HD-specialized nursing homes in the Netherlands. We conducted semistructured interviews with ECPs between June 2018 and July 2020. Two phases could be identified in the process of ACP. In the first phase, when the feared future seems to be far away, the ECP asks about the patient's wishes for the future in an accommodating manner. In the second phase, when the feared future is closer, future medical treatment and care becomes less hypothetical. Agreement has to be reached on upcoming treatment decisions. In this phase, the ECP takes a more guiding role, and consequently encounters more difficulties, such as maintaining a positive patient/family-physician relationship while dealing with disagreements with patient or family. Most participants shared their experiences with euthanasia when asked about ACP. When making a comparison of ACP between HD patients and patients with other neurodegenerative disorders in nursing homes, the ECPs emphasized the similarities. ACP in HD can be classified into 2 phases, which differ in ECPs' approach and the complexity experienced by the ECP. Awareness of this finding may help to further develop training and education in ACP, including dealing with euthanasia, to make ECPs feel better equipped in practicing ACP in HD. [ABSTRACT FROM AUTHOR]

Objectives What patients intend when they make health care choices and whether they understand the meaning of orders for life-sustaining treatment forms is not well understood. The purpose of this study was to analyze the directives from a sample of emergency department (ED) patients' MOLST forms. Procedures MOLST forms that accompanied 100 patients who were transported to an ED were collected and their contents analyzed. Data categories included age, gender, if the patient completed the form for themselves, medical orders for life-sustaining treatment including intubation, ventilation, artificial nutrition, artificial fluids or other treatment, and wishes for future hospitalization or transfer. Frequencies of variables were calculated and the associations between them were determined using chi-square. An a priori list of combinations of medical orders that were contradictory was developed. Contradictions with Orders for CPR (cardiopulmonary resuscitation) included the choice of one or more of the following: Comfort care; Limited intervention; Do Not Intubate; No rehospitalization; No IV (intravenous) fluids; and No antibiotics. Contradictions with DNR orders included the choice of one or more of the following: Intubation; No limitation on interventions. Contradictions with orders for Comfort Care were as follows: Send to the hospital; Trial period of IV fluids; Antibiotics. The frequencies of coexisting but contradictory medical orders were calculated using crosstabs. Free text responses to the “other instructions” section were submitted to content analysis. Results Sixty-nine percent of forms reviewed had at least one section left blank. Inconsistencies were found in patient wishes among a subset (14%) of patients, wherein their desire for “comfort measures only” seemed contradicted by a desire to be sent to the hospital, receive IV fluids, and/or receive antibiotics. Conclusions Patients and proxies may believe that making choices and documenting some, but not all, of their wishes on the MOLST form is sufficient for directing their end-of-life care. The result of making some, but not all, choices may result in patients receiving undesired, extraordinary, or invasive care. [ABSTRACT FROM AUTHOR]

Background Advance care planning (ACP) encompasses a process by which people may express and record their values and preferences for care and treatment should they lose the capacity to communicate them in the future. We believe the effects that ACP can have on the nursing home population is distinct from others and sought to gain insight into the outcomes of relevant studies on the topic. Aim To identify the effects of ACP interventions on nursing home residents. Design Systematic review. Methods A comprehensive literature search was conducted using the following 4 electronic databases, Embase, Medline, PsychINFO, and CINAHL, with no limits on year or language. Gray literature search of relevant journals was also performed as was reviewing of the reference lists of all included articles. Inclusion criteria were randomized controlled trials, controlled trials, pre/post study design trials and prospective studies examining the effects of ACP on nursing home residents. A detailed narrative synthesis was compiled as the heterogeneous nature of the interventions and results precluded meta-analysis. Results The initial search yielded 4654 articles. Thirteen studies fitted inclusion criteria for analysis. The ACP interventions included (1) 5 studies evaluating educational programs; (2) 5 studies introducing or evaluating a new ACP form; (3) 2 studies introducing an ACP program with a palliative care initiative; and (4) 1 study observing the effect of do not resuscitate orders on medical treatments for respiratory infections. A range of effects of ACP was demonstrated in the study populations. Hospitalization was the most frequent outcome measure used across the included studies. Analysis found that in the nursing home population, ACP decreased hospitalization rates by 9%–26%. Of note, in the 2 studies that included mortality, the decrease in hospitalization was not associated with increased mortality. Place of death is another important effect of ACP. Analysis found significant increases in the number of residents dying in their nursing home by 29%–40%. Medical treatments being consistent with ones' wishes were increased with ACP although not to 100% compliance. Two studies showed a decrease in overall health costs. One study found an increase in community palliative care use but not in-patient hospice referrals. Conclusions ACP has beneficial effects in the nursing home population. The types of ACP interventions vary, and it is difficult to identify superiority in effectiveness of one intervention over another. Outcome measures also vary considerably between studies although hospitalization, place of death, and actions being consistent with resident's wishes are by far the most common. Very few studies with high quality methodology have been undertaken in the area with a significant lack of randomized controlled trials. More robust studies, especially randomized controlled trials, are required to support the findings. [ABSTRACT FROM AUTHOR]

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. Secondary analysis of physician-reported PneuMonitor trial data. 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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

Objective The aim of this study was to describe the process of advance care planning (ACP) and to explore factors related to the timing and content of ACP in nursing home patients with dementia, as perceived by family, physicians, and nurses. Design A qualitative descriptive study. Methods A total of 65 in-depth qualitative interviews were held with families, on-staff elderly care physicians, and nurses of 26 patients with dementia who died in the Dutch End Of Life in Dementia (DEOLD) study. Interviews were coded and analyzed to find themes. Results Family, nurses, and physicians of all patients indicated they had multiple contact moments during nursing home stay in which care goals and treatment decisions were discussed. Nearly all interviewees indicated that physicians took the initiative for these ACP discussions. Care goals discussed and established during nursing home stay and the terminology to describe care goals varied between facilities. Regardless of care goals and other factors, cardiopulmonary resuscitation (CPR) and hospitalization were always discussed in advance with family and commonly resulted in a do-not-resuscitate (DNR) and a do-not-hospitalize (DNH) order. The timing of care planning discussions about other specific treatments or conditions and the content of treatment decisions varied. The factors that emerged from the interviews as related to ACP were general strategies that guided physicians in initiating ACP discussions, patient's condition, wishes expressed by patient or family, family's willingness, family involvement, continuity of communication, consensus with or within family, and general nursing home policy. Two influential underlying strategies guided physicians in initiating ACP discussions: (1) wait for a reason to initiate discussions, such as a change in health condition and (2) take initiative to discuss possible treatments (actively, including describing scenarios). Conclusions ACP is a multifactorial process, which may lean on professional caregivers' guidance. The most acute decisions are covered in advance, but a responsive as well as a proactive style is seen with other treatment decisions. Further research is needed to increase understanding of whether and how the physicians' strategies affect care processes and outcomes. [ABSTRACT FROM AUTHOR]

To evaluate the effect of advance care planning (ACP) interventions on the hospitalization of nursing home residents. Systematic review and meta-analysis. Nursing homes and nursing home residents. A literature search was systematically conducted in 6 electronic databases (Embase, Ovid MEDLINE, Cochrane Library, CINAHL, AgeLine, and the Psychology & Behavioral Sciences Collection), in addition to hand searches and reference list checking; the articles retrieved were those published from 1990 to November 2021. The eligible studies were randomized controlled trials, controlled trials, and pre-post intervention studies describing original data on the effect of ACP on hospitalization of nursing home residents; these studies had to be written in English. Two independent reviewers appraised the quality of the studies and extracted the relevant data using the Joanna Briggs Institute abstraction form and critical appraisal tools. A study protocol was registered in PROSPERO (CRD42022301648). The initial search yielded 744 studies. Nine studies involving a total of 57,180 residents were included in the review. The findings showed that the ACP reduced the likelihood of hospitalization [relative risk (RR) 0.54, 95% CI 0.47-0.63; I 2 = 0%)], it had no effect on emergency department (ED) visits (RR 0.60, 95% CI 0.31-1.42; I 2 = 99), hospice enrollment (RR 0.98, 95% CI 0.88-1.10; I 2 = 0%), mortality (RR 0.83, 95% CI 0.68-1.00; I 2 = 4%), and satisfaction with care (standardized mean difference: −0.04, 95% CI −0.14 to −0.06; I 2 = 0%). ACP reduced hospitalizations but did not affect the secondary outcomes, namely, ED visits, hospice enrollment, mortality, and satisfaction with care. These findings suggest that policy makers should support the implementation of ACP programs in nursing homes. More robust studies are needed to determine the effects of ACP on ED visits, hospice enrollment, mortality, and satisfaction with care. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To systematically review the efficacy of advance care planning (ACP) interventions in different adult patient populations. Design: Systematic review and meta-analyses. Data Sources: Medline/PubMed, Cochrane Central Register of Controlled Trials (1966 to September 2013), and reference lists. Study Selection: Randomized controlled trials that describe original data on the efficacy of ACP interventions in adult populations and were written in English. Data Extraction and Synthesis: Fifty-five studies were identified. Study details were recorded using a predefined data abstraction form. Methodological quality was assessed using the PEDro scale by 2 independent reviewers. Meta-analytic techniques were conducted using a random effects model. Analyses were stratified for type of intervention: ‘advance directives’ and ‘communication.’ Main Outcomes and Measures: Primary outcome measures were completion of advance directives and occurrence of end-of-life discussions. Secondary outcomes were concordance between preferences for care and delivered care, knowledge of ACP, end-of-life care preferences, quality of communication, satisfaction with healthcare, decisional conflict, use of healthcare services, and symptoms. Results: Interventions focusing on advance directives as well as interventions that also included communication about end-of-life care increased the completion of advance directives and the occurrence of end-of-life care discussions between patients and healthcare professionals. In addition, interventions that also included communication about ACP, improved concordance between preferences for care and delivered care and may improve other outcomes, such as quality of communication. Conclusions: ACP interventions increase the completion of advance directives, occurrence of discussions about ACP, concordance between preferences for care and delivered care, and are likely to improve other outcomes for patients and their loved ones in different adult populations. Future studies are necessary to reveal the effective elements of ACP and should focus on the best way to implement structured ACP in standard care. [Copyright &y& Elsevier]

Objective: Nursing homes (NHs) provide care to residents with serious illness and related complex health care needs. As such, discussions about end-of-life care between NH staff and residents and families are necessary to ensure residents receive care consistent with their goals. Interventions such as video decision aids have been developed to promote discussions and improve advance care planning, but few studies have examined how NH characteristics may relate to the implementation of these interventions; such information might lead toward more use of successful interventions. The purpose of this study is to understand NH characteristics that are associated with the implementation of the Goals of Care (GOC) intervention, which combined a video decision aid with a structured discussion to guide decision-making in advanced dementia., Design: A multiple case study., Setting and Participants: Staff surveys were conducted to examine factors related to implementation effectiveness in 11 NHs in North Carolina that participated in the GOC trial., Methods: Questions measured the dependent variable of implementation effectiveness: the consistency and quality of use of the GOC intervention. NH organizational characteristics were measured using publicly available data and an administrator survey. The analysis consisted of pattern matching logic., Results: High management support aligned with implementation effectiveness within NHs. In addition, the within case pattern analysis indicated additional characteristics related to implementation effectiveness. Facility size, Medicare beds, residents' racial composition, and star rating were related to implementation effectiveness across 6 of the 11 NHs. NH financial resources, such as size and number of Medicare beds, may be important factors for successful implementation., Conclusion and Implications: NHs seeking to implement advance care planning interventions should focus on within and across NH differences, such as adequate management and financial support prior to implementation to increase the likelihood of implementation effectiveness., (Copyright © 2021 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Abstract: Objectives: To evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations. Design: Retrospective study. Setting: Long term care facilities in French-speaking Canada, and the Netherlands and Italy. Participants: Bereaved family (n = 138). Measurements: An 8-item scale assessed the booklet’s acceptability. Usefulness was rated on a 0 to 10 scale, and perceived usefulness referred to usefulness if family had had the booklet during the resident’s stay. Families indicated preferred ways of obtaining, and the most appropriate time to get the booklet. Results: Almost all families (94%) perceived the booklet as useful. Canadian and Dutch families evaluated the booklet’s contents and format favorably, whereas Italian families’ evaluations were less favorable. Almost all families endorsed roles for physicians or nurses and about half additionally accepted availability through own initiative, in print or through the Internet. Preference of timing was highly variable. Better acceptability, usefulness, and availability through own initiative were independently associated with non-Italian nationality, presence of more physical signs discussed in the booklet, feeling ill-prepared, and higher satisfaction with care. A preference of receiving the booklet early was more likely in Italian families, those without university education, and those involved with older residents. Conclusion: The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia, but implementation in Italy requires further consideration. The booklet may be integrated in advance care planning in long term care, and made available outside long term care settings to serve families who wish to be informed early. [Copyright &y& Elsevier]

Abstract: Objectives: To characterize the self-reported practices and opinions of nursing home (NH) health care professionals using the North Carolina Medical Orders for Scope of Treatment (MOST) form, an adaptation of the Physician Orders for Life-Sustaining Treatment (POLST) paradigm. Design: A cross-sectional survey and semistructured interviews. Participants and Setting: Six physicians, 3 nurse practitioners, and 2 social workers from 2 NHs in North Carolina. Measurements: Survey items covered timing and appropriateness of form completion, review criteria, barriers, and concerns about using the form. Interviews clarified survey responses and elicited descriptions of how subjects explain the scope of medical interventions to patients/families. Results: NH admission and routine care plan meetings were considered the most important times to complete the MOST form. Treatment options on the form were often introduced in the context of patient preferences for hospitalization; however, there were considerable differences in how health care professionals explained and interpreted the scope of medical interventions. Nearly all health care professionals (10/11) believed that the form improves communication between physicians and patients/families. Only 3 of 11 respondents were aware of all of the MOST form’s review requirements. Time was the most commonly cited barrier to use of the form. Respondents were concerned about forms getting lost or not being honored outside of the NH. Conclusion: Health care professionals generally viewed the MOST form as a useful tool for communicating patient treatment preferences in the NH. However, they may need specific strategies for explaining and interpreting the scope of medical interventions section and for meeting the form’s review requirements. [Copyright &y& Elsevier]