Association between advance care planning and depressive symptoms among community-dwelling people with dementia: An observational cross-sectional study during the COVID-19 pandemic in Japan.

Objectives: Advance care planning (ACP) is an increasing priority for people with dementia during the COVID-19 pandemic. This study evaluated the association between ACP initiation and depressive symptoms among home-dwelling people living with dementia. Methods: An internet-based questionnaire survey was conducted with Japanese family caregivers of home-dwelling persons with dementia in June 2021. Family caregivers evaluated the level of depressive symptoms in persons with dementia using the Neuropsychiatric Inventory (NPI). Caregivers also rated the quality of life of persons with dementia using the EQ-5D-5L. Results: A total of 379 family caregivers participated in the survey. Depressive symptoms were reported in 143 persons with dementia (37.7%). A total of 155 persons with dementia (40.9%) had initiated ACP, of which 88 (56.8%) had care professionals involved in ACP conversation. After adjusting for the characteristics of persons with dementia and caregivers, persons with professional involvement showed significantly more severe depressive symptoms compared to those who did not initiate ACP. There was no significant difference in the quality of life of persons with dementia according to ACP initiation. Conclusions: Many home-dwelling persons with dementia experienced depressive symptoms during the COVID-19 pandemic, especially in cases where care professionals were involved in ACP conversations. Optimal and proactive ACP approaches need to be developed to prevent depressive symptoms in newly diagnosed persons.

Japanese Local Governments' Dissemination Activities for Advance Care Planning: A Descriptive Analysis of a Nationwide Survey during the COVID-19 Pandemic.

This study aims to compare the awareness-raising activities between municipalities with and without focused anti-infection measures during the 2019 coronavirus disease (COVID-19) pandemic. Descriptive analysis was conducted using a nationwide self-administered questionnaire survey on municipalities' activities for residents and for healthcare providers and care workers (HCPs) in October 2022 in Japan. This study included 433 municipalities that had conducted awareness-raising activities before 2019 Fiscal Year. Workshops for residents were conducted in 85.2% of the municipalities, and they were more likely to be conducted in areas with focused anti-infection measures than those without measures (86.8% vs. 75.4%). Additionally, 85.9% of the municipalities were impacted by the pandemic; 50.1% canceled workshops, while 26.0% switched to a web-based style. Activities for HCPs were conducted in 55.2-63.7% of the municipalities, and they were more likely to be conducted in areas with focused anti-infection measures. A total of 50.6-62.1% of the municipalities changed their workshops for HCPs to a web-based style. Comparisons between areas with and without focused anti-infection measures indicated that the percentages of those impacted for all activities were not significantly different. In conclusion, awareness-raising activities in municipalities were conducted with new methods during the COVID-19 pandemic. Using information technology is essential to further promote such activities for residents.

Implementation Challenges for a Multisite Advance Care Planning Pragmatic Trial: Lessons Learned.

BACKGROUND/PROBLEM: Advance care planning (ACP) pragmatic trials are needed. PROPOSED SOLUTION: We determined key system-level activities to implement ACP interventions for a cluster-randomized pragmatic trial. We identified patients with serious illness from 50 primary care clinics across three University of California health systems using a validated algorithm. If patients lacked documented ACP within the last 3 years, they were eligible for an intervention: (Arm 1) an advance directive (AD); (Arm 2) AD + PREPAREforYourCare.org; (Arm 3) AD + PREPARE + lay health navigator outreach. Triggered by an appointment, we mailed and sent interventions through automated electronic health record (EHR) messaging. We collaborated with patients/caregivers, clinicians, payors, and national/health system leader advisors. We are currently finalizing 24 months follow-up data. OUTCOMES/METHODS: We used the Consolidated Framework for Implementation Research (CFIR) and Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) frameworks to track secular trends and implementation efforts. KEY MESSAGE/RESULTS: Required multisite, system-level activities: 1) obtaining leadership, legal/privacy, and EHR approvals; 2) standardizing ACP documentation; 3) providing clinician education; 3) validating an automated serious illness identification algorithm; 4) standardizing ACP messaging with input from over 100 key advisors; 5) monitoring secular trends (e.g., COVID); and 6) standardizing ACP workflows (e.g., scanned ADs). Of 8707 patients with serious illness, 6883 were eligible for an intervention. Across all arms, 99% received the mailed intervention, 78.3% had an active patient portal (64.2% opened intervention), and 90.5% of arm three patients (n = 2243) received navigator outreach. LESSONS LEARNED: Implementing a multisite health system-wide ACP program and pragmatic trial, with automated EHR-based cohort identification and intervention delivery, requires a high level of multidisciplinary key advisor engagement, standardization, and monitoring. These activities provide guidance for the implementation of other large-scale, population-based ACP efforts.

COVID-19: decision making and palliative care.

Due to the current development around the COVID-19 pandemic, palliative ch has created a Task Force to provide recommendations for health professionals on the treatment of palliative care patients in the various settings ‒ inpatient and outpatient.

[Advance care planning and use of health resources among COVID-19 nursing home patients in an integrated health care program for frail elders]. / Planificación anticipada de los cuidados y del uso de recursos hospitalarios en pacientes con COVID-19 en un programa de atención integrada para adultos mayores frágiles en residencias.

OBJECTIVES: To estimate the magnitude and importance of a process of stratification and advance care planning and the use of health resources, among patients in an integrated health care program for frail elderls in nursing homes,that were referred to the hospital with COVID-19. MATERIAL AND METHODS: Prospective cohort study of patients >64 years old with COVID-19 infection, in a health care program in nursing homes (from 3/15/2020 to 9/15/2020). The identification of patients with palliative needs, the performing and visible registration in electronic health records of the advance care planning and the use of intensive care were assessed. RESULTS: We included 374 COVID-19 patients. 88% were women, the median age was 88 years old. The 79% were patients with palliative needs, of which 68% had the advance care planning (P<.001) registered in the electronic health record. Only 1% of patients with palliative needs and severity criteria were admitted to the intensive care unit. Overall mortality was 25%. Of those who died, 74% had severity criteria (P<.001) and 90% had palliative needs (P<.001). CONCLUSIONS: Carrying out a care process based on identification of patients with palliative needs and advance care planning and a central and visible registration of advance care planning in health records, could improve the quality and safety of care and optimize the use of intensive care health resources at all times and especially in public health emergencies.

Perspectives across Canada about implementing a palliative approach in long-term care during COVID-19.

BACKGROUND: Long-term care (LTC) homes have been disproportionately impacted during COVID-19. PURPOSE: To explore the perspectives of stakeholders across Canada around implementing a palliative approach in LTC home during COVID-19. METHODS: Qualitative, descriptive design using one-to-one or paired semi-structured interviews. RESULTS: Four themes were identified: (1) the influence of the pandemic on implementing a palliative approach, (2) families are an essential part of implementing a palliative approach, (3) prioritizing advance care planning (ACP) and goals of care (GoC) discussions in anticipation of the overload of deaths and (4) COVID-19 highlighting the need for a palliative approach as well as several subthemes. CONCLUSION: The COVID-19 pandemic influenced the implementation of a palliative approach to care, where many LTC homes faced an overwhelming number of deaths and restricted the presence of family members. A more concentrated focus on home-wide ACP and GoC conversations and the need for a palliative approach to care in LTC were identified.

Global Research Trend and Bibliometric Analysis of Current Studies on End-of-Life Care.

The growing emphasis on evidence-based practice has led to a need for more research on healthcare disciplines, and for the synthesis and translation of that research into practice. This study explored the global research trend in regard to End-of-Life Care (EoLC), and assessed the impact and influence, on the scientific community, of relevant EoLC publications EoLC. Over 350,000 related publications on EoLC were retrieved from three databases (PubMed, Scopus, and Web of Science). Our analysis of the global research trend revealed an exponential rise in the number of related publications on EoLC since the year 1837. This study assessed the bibliometric information of 547 current journal publications on EoLC, sorted by relevance, from the three databases. The USA (47.3%) and the UK (16.1%) were the most productive countries, in terms of the number of relevant publications. The bibliometric analysis also revealed which EoLC research was most impactful and influential, from different parameters including documents, authors, sources, and organisations. The keyword analysis further suggested the growing importance of advance care planning and decision-making in regard to EoLC, as well as an episodic upsurge of EoLC publications related to the COVID-19 pandemic. There were few collaborations among the prolific research on EoLC. This study recommends increased research collaboration across the globe, for wider wisdom-sharing on EoLC issues.

Association between resilience and advance care planning during the COVID-19 pandemic in Japan: a nationwide cross-sectional study.

Advance care planning (ACP) is essential for end-of-life care, especially during the novel coronavirus disease 2019 (COVID-19) pandemic, and resilience is critical to deal with pandemic-related stressors. Therefore, we investigated the association between resilience ability and ACP discussions during the COVID-19 pandemic. A nationwide web-based survey was conducted in July 2021 in Japan. We analyzed the respondents' ability to bounce back from stress (bouncing-back ability), positive stress coping (e.g., "seeking social support", "planning"), and negative stress coping (e.g., "avoidance", "alcohol and drug use") in relation to ACP discussions using multivariable logistic regression models. In total, 2000 responses (86% participation rate) were received (mean age: 51.8 ± 16.7). Normal and high bouncing-back ability (adjusted odds ratio [AOR]: 1.69, 95% CI: 1.03-2.79; AOR: 2.07, 95% CI: 1.18-3.65, respectively) were significantly associated with the occurrence of ACP discussions. Seeking social support and planning were significantly associated with ACP discussions, whereas avoidance and alcohol and drug use were not. Both bouncing-back ability and positive stress coping were significantly associated with the occurrence of ACP discussions during the COVID-19 pandemic in Japan. These findings could be useful for aiding health-care providers involved in ACP discussions during the COVID-19 pandemic.

Shared decision-making in advance care planning among hospitalized older COVID-19 patients: a multicenter, retrospective cohort study.

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

End of Life: What Is the Anesthesiologist's Role?

Anesthesiologists receive extensive training in the area of perioperative care and the specialized skills required to maintain life during surgery and complex procedures. Integrated into almost every facet of contemporary medicine, they interact with patients at multiple stages of their health care journeys. While traditionally thought of as the doctors best equipped to save lives, they may also be some of the best doctors to help navigate the chapters at the end of life. Successfully navigating end-of-life care, particularly in the COVID-19 era, is a complicated task. Competing ethical principles of autonomy and nonmaleficence may often be encountered as sophisticated medical technologies offer the promise of extending life longer than ever before seen. From encouraging patients to actively engage in advance care planning, normalizing the conversations around the end of life, employing our skills to relieve pain and suffering associated with dying, and using our empathy and communication skills to also care for the families of dying patients, there are many ways for the anesthesiologist to elevate the care provided at the end of life. The aim of this article is to review the existing literature on the role of the anesthesiologist in end-of-life care, as well as to encourage future development of our specialty in this area.

Communication skills training in advance care planning: a survey among medical students at the University of Antwerp.

BACKGROUND: Palliative care (PC) is a strongly emerging discipline worldwide. Despite efforts to integrate this important topic in the medical curriculum in Belgium, still little time is spent on PC and its implementation during theoretical and practical training. MATERIALS & METHODS: We had two cohorts of second master's year MD students at the University of Antwerp complete a survey compromising a custom-built PC knowledge test and a self-confidence assessment of communicative skills used in end-of-life conversations. We evaluated students' self-confidence regarding end-of-life-conversations before and after a PC training program. We also explored whether the PC classes enabled the students to adequately reflect on factors that might influence end-of-life conversations with an open-end question about the potential implications of the COVID-19 pandemic on advance care planning (ACP) conversations. Finally, we compared the results of the respondents having enjoyed face-to-face training (cohort 1) with those having received online training only (cohort 2, COVID-19 pandemic). RESULTS: Although the respondents in both cohorts indicated that the overall curriculum did not pay enough attention to PC training, their average scores on the theoretical questions were good. Feeling confident about their communicative skills in general, they indicated to be less confident when it came to communications concerning PC and ACP in particular. The COVID-19 pandemic was initially equally deemed to impede and facilitate ACP and end-of-life conversations, but after the ACP training class more respondents saw the pandemic as an opportunity to broach end-of-life issues. Finally, we found no differences in scores between online and regular classroom teaching. CONCLUSION: Students experience a lack of confidence in communication skills used in end-of-life conversations and ACP. To help improve skills and competencies in conducting end-of-life conversations, it is recommended to have medical students assess PC/ACP training programs regularly and to modify the curriculum and course content based on these outcomes and current developments.

Palliative care delivery changes during COVID-19 and enduring implications in oncology nursing: a rapid review.

PURPOSE OF REVIEW: A rapid review was conducted to synthesize evidence of palliative care delivery changes during the COVID-19 pandemic. Changes were synthesized according to the eight domains of high-quality palliative care and enduring implications for oncology nurses beyond the pandemic discussed. RECENT FINDINGS: The most significant changes occurred in the structure and processes of palliative care (Domain 1), where increased utilization of telehealth was critical in circumventing barriers imposed by COVID-19 mitigation. The suboptimal availability of community-based psychosocial supports for patients and caregivers and inadequate health system-based psychosocial supports for healthcare providers were highlighted (Domains 3-5). The pandemic also ushered in an increased emphasis on the need for advance care planning (ACP), where integrating its delivery earlier in the outpatient setting and shifting policy to promote subsequent virtual documentation (Domain 8) were essential to ensure care preferences were clarified and accessible before health crises occurred. SUMMARY: Continuing to embrace and sustain systems-level changes with respect to telehealth, psychosocial supports, and ACP are critical to bridging gaps in palliative care delivery underscored by the pandemic. Oncology nurses are well positioned to fill these gaps in care beyond the pandemic by providing evidence-based, palliative care throughout the cancer continuum.

"I wanna live and not think about the future" what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.

BACKGROUND: Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives. AIM: To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP. METHODS: We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. RESULTS: Participants' narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions. CONCLUSION: These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.

An Interdisciplinary Ethics Panel Approach to End-of-Life Decision Making for Unbefriended Nursing Home Residents.

For those with advanced life-limiting illness, the optimization of quality of life and avoidance of nonbeneficial treatments at the end of life are key ethical concerns. This article evaluates the efficacy of an Interdisciplinary Ethics Panel (IEP) approach to decision making at the end of life for unbefriended nursing home residents who lack decisional capacity and have advanced life-limiting illness, through the use of a nine-step algorithm developed for this purpose. We reviewed the outcomes of three quality-of-care phased initiatives conducted in our facility, a large public nursing home in New York City, between June 2016 and February 2020, which indicated that this IEP approach promoted advance-care planning, as palliative measures were endorsed to optimize quality of life for this vulnerable population at the end of life. We also examined another quality-of-care initiative when this IEP approach was applied to end-of-life decision making for nursing home residents who had a surrogate during the COVID-19 pandemic. This application appeared to be beneficial in adding more residents to our Palliative Care Program while it improved rates of advance-care planning. When all of the above findings are considered, we believe this novel IEP approach and algorithm have the potential to be applied elsewhere after appropriate assessment.

Cultural adaptation of a community-based advance serious illness planning decision aid to the Quebec context involving end-users.

INTRODUCTION: Traditional advance care planning focuses on end-of-life planning in the context of a certain or imminent death. It is not tailored for serious illness planning, where the 'death' outcome is uncertain. The Plan Well Guide™ (PWG) is a decision aid that empowers lay persons to better understand different types of care and prepares them, and their substitute decision-makers, to express both their authentic values and informed treatment preferences in anticipation of serious illness. A cultural adaptation was necessary to make the material suitable to the context of Quebec, a French-speaking Canadian province. METHODS: We engaged lay collaborators and experts in a panel, involving three phases of consultation and data collection. These included an online questionnaire, focused interviews and virtual focus groups that identified elements within the francophone PWG affecting its feasibility, adaptation and integration, as well as items that should be modified. RESULTS: We engaged 22 collaborators between April and September 2021. The majority (82%) ranked the first translation as good or very good; most (70%) stated that they would recommend the final adaptation. Both lay and expert panel members suggested simplifying the language and framing the tool better within the context of other advance medical planning processes in Quebec. Translation was considered in a cultural context; the challenges identified by the research team or by collaborators were addressed during the focus group. Examples of wording that required discussion include translating 'getting the medical care that's right for you' when referring to the PWG's goal. An equivalent expression in the French translation was believed to invoke religious associations. Using the term 'machines' to describe life-sustaining treatments was also deliberated. CONCLUSION: Our collaborative iterative adaptation process led to the first French advanced serious illness planning tool. How acceptable and user-friendly this French adaptation of the PWG is in various Canadian French-speaking environments requires further study. CONTRIBUTION: We organized a focus group inviting both lay collaborators and experts to contribute to the interpretation of the results of the previous phases. This choice allowed us to add more value to our results and to the final PWG in French.