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Objective: Medication management in home hospice is challenging for family caregivers (FCGs). We tested a patient-centered medication review and FCG support program delivered by hospice staff called "Shared Medication PLanning In (SiMPLIfy) Home Hospice." Methods: A pilot cluster-randomized trial at two U.S. home hospice agencies measured the primary outcome of reduction in Medication Regimen Complexity Index (MRCI) (range 0 [no medications]-no upper limit) and secondary outcome of Family Caregiver Medication Administration Hassle Scale (FCMAHS) (range 0 [no hassle-120 [greatest hassle]). Results: Twenty-two patient-FCG dyads enrolled. Mean baseline MRCI in the intervention group = 39 (95% CI: 30.9, 47.1) and control group = 25.5 (95% CI: 21.0-30.1). Half of intervention patients (3 of 6) had reduced MRCI compared with 26.7% (4 of 15) control patients ( p = 0.07). MRCI was not significantly associated with caregiver burden. FCMAHS differed between spousal and nonspousal FCGs ( p = 0.12). Conclusion: A clinician-FCG-patient communication program in home hospice is feasible and may reduce medication complexity. SiMPLIfy has the potential to reduce polypharmacy.

Objectives: Patients with progressive neurologic illness still lack access to quality palliative care services. Barriers to the comprehensive provision of neuropalliative care include gaps in palliative care education. To address this barrier, a novel international model of neuropalliative care education e-learning program was launched in 2022., Methods: This is a qualitative study on the self-reported learning outcomes and educational gains of participants of a neuropalliative care e-learning course., Results: Thematic analysis shows changes in the participants' perceptions of neuropalliative care and several specific educational gains. After attending the course, participants recognized neuropalliative care as a multiprofessional and interdisciplinary effort requiring more than medical knowledge and disease-specific treatment skills. They gained understanding of the complexity of prognosis in neurological diseases, as well as ethical concepts as the basis to approach difficult decisions. Valuing the needs of patients and caregivers, as well as honest and open communication were recognized as key components of the caring process. In particular, providing emotional support and building relationships to enhance the spiritual component of care were avidly discussed as essential nonmedical treatment options., Significance of Results: E-learning courses are helping to close the gaps in healthcare professionals' knowledge and skills about neuropalliative care.

Increasing numbers of individuals with complex, advanced illnesses are living longer and being cared for in the home by family members. As a result, family caregivers often experience physical, emotional, psychological, and social distress. A unique subset of this population are nurses who find themselves providing care in both their family lives and work lives, a phenomenon known as "double-duty caregiving." This study explored the experiences of nurses providing end-of-life care for family members while continuing to work as a nurse and the consequences of this experience. A qualitative design, using semistructured, in-depth interviews, was used to capture the double-duty caregivers' experiences. Four overarching themes were identified: It Takes a Village, Driving the Bus, Juggling Many Hats, and Moving Through and Looking Back. These themes captured the components of a support system that are essential for the double-duty caregiver to perform this work, the multifaceted expectations placed upon the double-duty caregiver, the double-duty caregiver's relentless need to balance multiple roles, and the immediate and long-term impact of double-duty caregiving. As nurses, we must acknowledge the need for self-care during this experience, and as a profession, we must provide support for the double-duty caregiver to preserve their personal and professional well-being., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 by The Hospice and Palliative Nurses Association. All rights reserved.)

Background: In recent years, the subspecialty of neuropalliative care has emerged with the goal of improving the quality of life of patients suffering from neurological disease, though gaps remain in neuropalliative care education and training. E-learning has been described as a way to deliver interactive and facilitated lower-cost learning to address global gaps in medical care. We describe here the development of a novel, international, hybrid, and asynchronous curriculum with both self-paced modules and class-based lectures on neuropalliative care topics designed for the neurologist interested in palliative care, the palliative care physician interested in caring for neurological patients, and any other physician or advanced care providers interested in neuropalliative care., Methods: The course consisted of 12 modules, one per every four weeks, beginning July 2022. Each module is based on a case and relevant topics. Course content was divided into three streams (Neurology Basics, Palliative Care Basics, and Neuropalliative Care Essentials) of which two were optional and one was mandatory, and consisted of classroom sessions, webinars, and an in-person skills session. Evaluation of learners consisted of multiple choice questions and written assignments for each module. Evaluation of the course was based on semi-structured qualitative interviews conducted with both educator and learner, the latter of which will be published separately. Audio files were transcribed and underwent thematic analysis. For the discussion of the results, Khan's e-learning framework was used., Results: Ten of the 12 participating educators were interviewed. Of the educators, three identified as mid-career and seven as senior faculty, ranging from six to 33 years of experience. Nine of ten reported an academic affiliation and all reported association with a teaching hospital. Themes identified from the educators' evaluations were: bridging the global gap, getting everybody on board, defining the educational scope, investing extensive hours of voluntary time and resources, benefiting within and beyond the curriculum, understanding the learner's experience, creating a community of shared learning, adapting future teaching and learning strategies, and envisioning long term sustainability., Conclusions: The first year of a novel, international, hybrid, and asynchronous neuropalliative care curriculum has been completed, and its educators have described both successes and avenues for improvement. Further research is planned to assess this curriculum from the learner perspective., (© 2024. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)

Background: Health disparities exist in end-of-life (EOL) care. Individuals and communities that are marginalized due to their race, ethnicity, income, geographic location, language, or cultural background experience systemic barriers to access and receive lower quality EOL care. Advance care planning (ACP) prepares patients and their caregivers for EOL decision-making for the purpose of promoting high-quality EOL care. Low engagement in ACP among marginalized populations is thought to have contributed to disparity in EOL care. To advance health equity and deliver care that aligns with the goals and values of each individual, there is a need to improve ACP for marginalized populations., Aim: To describe how patients from marginalized populations experience and perceive ACP., Methods: We used an interpretive phenomenological approach with semi-structured qualitative interviews. Participants were recruited from four primary care clinics and one nursing home in a US Pacific Northwest city. Thirty patients from marginalized populations with serious illness participated in individual interviews between January and December 2021. Participants were asked to describe their experiences and perceptions about ACP during the interviews., Results: The mean age of 30 participants was 69.5; 19 (63%) were women; 12 (40%) identified as Asian/Pacific Islanders, 10 (33%) as Black; and 9 (30%) were non-native English speakers. Our three key findings were: 1) patients from marginalized populations are willing to engage in ACP; 2) there were multiple obstacles to engaging in ACP; and 3) meaningful ACP conversations could happen when clinicians listen. Although participants from marginalized populations were willing to engage in ACP, a fragmented and restrictive healthcare system and clinicians' biased behaviors or lack of interest in knowing their patients were obstacles. Participants who felt their clinicians took time and listened were encouraged to engage in ACP., Conclusion: Patients from marginalized populations are willing to engage in ACP conversations despite a common belief otherwise. However, obstacles to meaningful ACP conversations with healthcare providers exist. Clinicians need to be aware of these obstacles and listen to build trust and engage marginalized patients in mutually meaningful ACP conversations., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Izumi et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Living with two or more chronic conditions simultaneously-known as multimorbidity-has become increasingly prevalent as the aging population continues to grow. However, the factors that influence the development of multimorbidity are still not fully understood., Objectives: The purpose of this study was to investigate the prevalence of multimorbidity among U.S. adults 50 years and older and identify associated factors with multimorbidity., Methods: We used data from four cycles from the National Health and Nutrition Examination Survey (2011-2018) to examine the associations between social determinants of health and multimorbidity among American adults aged 50 years and older. A set of variables on socioeconomic status and health behaviors was chosen based on the social determinants of health conceptual framework developed by the World Health Organization. In our study, 4,552 participants were included. All analyses were accounted for a complex survey design and the use of survey weights. Multiple logistic regression analyses were performed to examine the associated factors with multimorbidity., Results: The average age was 63.1 years, and 52.9% were female. The average number of chronic conditions was 2.27. The prevalence of multimorbidity was 63.8%, with high cholesterol and hypertension being the most prevalent conditions. In the adjusted model, age, gender, household income, citizenship status, health insurance, healthcare access, body mass index, and smoking status were found to be associated with living with multimorbidity., Discussion: Our results indicate that continued efforts aimed at promoting smoking cessation and maintaining a healthy weight will be beneficial in preventing the onset of chronic conditions. Additional research is warranted to gain a deeper understanding of the interrelationships between gender, race/ethnicity, household income, citizenship status, health insurance, and healthcare access as social determinants of health in the context of multimorbidity. Further research will help us develop targeted interventions and policies to address disparities and improve health outcomes for individuals with multimorbidity., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Aim: The aim of this study is to present the experiences of cancer patients who participate in a social model palliative day care program (PDCP). This is the first research study that evaluates early integration of PDCP, from the patients' perspective, in Central and Eastern Europe. Methods: A descriptive qualitative study using five focus groups was conducted with patients cared by Hospice Casa Sperantei Foundation (HCS) in Brasov, Romania. Fifty participants were recruited from the PDCP. Discussions were transcribed and analyzed thematically. Results: Three major categories emerged from the focus groups: (1) significance of diagnosis before integration of palliative care (PC); (2) perceptions of diagnosis after integration of PC; and (3) benefits of attending the PDCP. The findings indicate that PDCPs facilitate continuity of care for patients and families with PC needs by addressing and responding to physical, psychosocial, and spiritual needs. Participation in the PDCP fosters a sense of connectedness with others, helps individuals reconnect with self, and provides an opportunity to engage in activities that bring meaning and value to daily living. Conclusions: This study is highly important in the context of a national- and regional-wide interest for increasing the coverage of PC needs of patients and families, by varying the types of services. It explores the benefits of integration of PC services early on the trajectory of the disease of cancer patients. The themes that emerged from this study are consistent with previous international studies referring to benefits of early integration of PC throughout PDCP. Future research is needed to examine further the benefits of early integration of PDCP services for patients living with serious illnesses. Clinical Trials Registration Number 1/03.02.2020.

Language access barriers for individuals with limited-English proficiency are a challenge to advance care planning (ACP). Whether Spanish-language translations of ACP resources are broadly acceptable by US Spanish-language speakers from diverse countries is unclear. This ethnographic qualitative study ascertained challenges and facilitators to ACP with respect to Spanish-language translation of ACP resources. We conducted focus groups with a heterogeneous sample of 29 Spanish-speaking persons who had experience with ACP as a patient, family member, and/or medical interpreter. We conducted thematic analysis with axial coding. Themes include: (1). ACP translations are confusing; (2). ACP understanding is affected by country of origin; (3). ACP understanding is affected by local healthcare provider culture and practice; and (4). ACP needs to be normalized into local communities. ACP is both a cultural and clinical practice. Recommendations for increasing ACP uptake extend beyond language translation to acknowledging users' culture of origin and local healthcare culture.

Background: Nurses are the largest segment of health care professionals and often the first one to interact with individuals about their health and illness. Ensuring nurses have the education to care for individuals with serious illness is essential to quality health care. The new AACN Essentials: Competencies for Professional Nursing Education delineates hospice/palliative/supportive care as one of four spheres of nursing care. Surveying undergraduate schools/colleges of nursing in Massachusetts about content pertaining to care of individuals with serious illness provides the foundation for a state strategy to ensure quality primary palliative education for undergraduate nursing students., Methods: A Massachusetts statewide college/school of nursing survey approach to assessing primary palliative nursing education within undergraduate baccalaureate nursing curricula was performed from June 2020 to December 2020. Because the project was a collaboration with the Deans of the college/school of nursing, the survey identified the programs., Results: Survey results revealed that only a small number of Massachusetts nursing programs are preparing nurses with specific and formal primary palliative nursing education. However, programs are open to support and resources., Conclusion: The survey provided information to inform a successful strategy to support primary palliative nursing education within Massachusetts undergraduate baccalaureate nursing curricula. A survey approach can serve as a model for other states., (Copyright © 2023. Published by Elsevier Inc.)

Context: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility., Objective: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness., Methods: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care., Results: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations., Conclusions: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: Family caregivers suffer a high burden of emotional and psychological distress following the death of a loved one in the intensive care unit and often struggle to heal in the weeks following their loss. The purpose of this hermeneutic phenomenological study was to describe and interpret the experience of healing for family caregivers six weeks following the death of a loved one in the ICU., Methods: Semi-structured telephone interviews were conducted with a purposive sample of twenty-four family caregivers six weeks following the death of their loved ones in the ICU. Qualitative analysis techniques were used to identify common themes central to the experience of healing across all interviews., Results: Seven themes were interpreted from the data: searching for clarity from a time of uncertainty; riding an emotional rollercoaster; seeking peace in one's decisions; moving forward with each new day; taking comfort in the memories; valuing layers of support; and discovering life on one's own., Conclusion: By identifying and gaining an understanding of healing following the death of a loved one in the ICU, nursing and other healthcare providers have an opportunity to promote healing and positively impact family caregiver's bereavement., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Given the increased need for palliative care services globally, the education of nurses has become paramount. In response, a group of nurses from Romania and the United States developed diverse nursing educational programs to meet the palliative care educational needs of nurses in Central-Eastern European countries. The purpose of this article is to describe a palliative nursing masterclass that was offered virtually to 59 participants, primarily nurses but also other health care professionals, from 11 Central-Eastern European countries., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.)

Purpose: Traditional paper documentation of cardiopulmonary arrest (CPA) events is often inaccurate and incomplete. Electronic documentation supports appropriate process improvements and optimal patient care and contributes to greater accuracy in national databases from which national benchmarks are derived. The aim of this quality improvement initiative was to compare the timeliness and accuracy of paper-based versus electronic documentation of live CPA events., Methods: Nurses on four medical-surgical pilot units received training on the use of a handheld electronic device with a documentation app (Full Code Pro) to document live CPA events. The data were downloaded into an Excel file and compared for completeness and accuracy with the data downloaded from the LIFEPAK 15 defibrillator using CODE-STAT 10.0 software. Electronic documentation and traditional paper documentation of events from units where the intervention wasn't implemented (control units) were also compared with the CODE-STAT data., Results: There were 26 CPA events: six on the pilot units were documented using the electronic app, 12 on the pilot units were documented using the paper-based method (the latter were excluded from analysis), and eight on the control units were documented using the existing paper forms. Data accuracy was significantly greater in the electronic group compared with the paper-based group for recorded rhythm (100% versus 13%, P = 0.01) and end-tidal carbon dioxide (67% versus 0%, P = 0.02). The electronic method significantly outperformed the paper-based method in legibility (100% versus 13%, P < 0.01). Staff reported increased satisfaction with the electronic documentation method., Conclusion: Using electronic handheld devices to document live resuscitation events demonstrated the inaccuracies of paper-based documentation, supporting the findings of previous studies. Electronic documentation was superior to paper in overall documentation quality and allowed providers to identify and quickly document the initial rhythm of the event. A larger study using electronic documentation to capture more ventricular fibrillation and ventricular tachycardia arrests would show a greater accuracy of timing, which would have large positive effects on overall resuscitation quality., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Hospice and palliative care research aim to build a knowledge base to guide high-quality care for people with serious illness and improve their quality of life. Considering its focus on patient and family caregiver's experiences, hospice and palliative care research activities primarily take place in real-world clinical settings where seriously ill patients and their family caregivers receive care (eg, nursing homes, clinics, inpatient units). Conducting research in these settings poses many challenges because researchers, clinicians, and administrators may have different priorities-and scientific control is difficult. Therefore, clinician-researcher-administrator collaboration in planning and conducting studies is critical for successful hospice and palliative care research. For an effective collaboration, clinicians, researchers, and site administrators must be considered equal partners. Each collaborator brings their unique expertise, knowledge, and skills that when combined can strengthen scientific rigor, feasibility, and success of the project, as well as have study outcomes that are more translatable to real-world practice. However, little guidance exists to give actionable steps to build collaborative partnerships for hospice and palliative care researchers. The purpose of this article is to describe the process of forming successful clinician-researcher-administrator collaborations through five phases of the research life cycle: idea generation, partnership, proposal writing, research process, and dissemination. Exemplars are drawn from the authors' experiences conducting collaborative research and highlight strategies and resources for successful hospice and palliative care collaborations., (Copyright © 2021 by The Hospice and Palliative Nurses Association. All rights reserved.)

Introduction: The ability of an organization to accommodate a large influx of patients during a prolonged period is dependent on surge capacity. The aim of this article is to describe the surge experience with space, supplies, and staff training in response to COVID-19 and provide guidance to other organizations., Background: A hospital's response to a large-scale event is greatly impacted by the ability to surge and, depending on the type of threat, to maintain a sustained response. To identify surge capacity, an organization must first consider the type of event to appropriately plan resources., Preparation Process: An epidemic surge drill, conducted in 2012, served as a guide in planning for the COVID-19 pandemic. The principles of crisis standards of care and a hospital incident command structure were used to clearly define roles, open lines of communication, and inform our surge plan. Preparation began by collaborating with multidisciplinary groups to acquire the most appropriate space, as well as adequate supplies, and identify and train staff., Implementation: Teams were formed to identify the necessary resources to expand the intensive care unit (ICU) environment quickly and efficiently. Educational training was developed for redeployed staff., Outcomes: Beth Israel Deaconess Medical Center experienced the largest surge of ICU patients within a hospital system in the state of Massachusetts. The ICU capacity was expanded by 93% from 77 to 149 beds, and the surge was maintained for approximately 9 weeks. Shadowing experiences before the actual surge were extremely valuable., Conclusions: Planning for the surge of critically ill patients required a thoughtful, collaborative approach. Ongoing staff support and communication from nursing leadership were necessary to ensure safe, effective care for critically ill patients in a new and dynamic environment., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Context: Simplifying medication regimens by tapering and/or withdrawing unnecessary drugs is important to optimize quality of life and safety for patients with serious illness. Few resources are available to educate clinicians, patients and family caregivers about this process., Objective: To describe the development of an educational program called Shared Medication PLanning In (SIMPLIfy) Home Hospice., Methods: An environmental scan identified a state-of-the-art educational program for home hospice deprescribing that we adapted using a stakeholder panel engagement process. The stakeholder panel (two hospice administrators, three nurses, two physicians, two pharmacists, and two former family caregivers) drawn from two geographically diverse hospice agencies reviewed the educational program and recommended additional content., Results: Iterative rounds of review and feedback resulted in: 1) a three-part clinician educational program (total duration = 1.5 hour) that presents a standardized, goal-concordant, medication review approach to align medications and conversations about regimen simplification with patient and family caregiver goals of care; 2) a patient-family caregiver medication management educational notebook that presents common symptoms, hospice medications, and medication regimen simplification principles; and 3) a brief guide including helpful phrases to use as conversation starters for key steps in the program. A professional designer created thematic coherence for all materials that was well received by stakeholder panelists and hospice staff., Conclusion: Educational materials can support hospice programs' and clinicians' efforts to implement goal-concordant medication simplification that optimizes end-of-life outcomes for patients and family caregivers. Evaluation of outcomes including medication appropriateness and family caregiver medication administration burden are not yet available., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Prone positioning has been used as an intervention to improve oxygenation in critically ill patients with acute respiratory distress syndrome. During the COVID-19 pandemic, resources were even more limited given a surge in acute respiratory distress syndrome patients, which outstripped intensive care unit (ICU) capacity at many institutions., Local Problem: The purpose of this article is to describe the development and implementation of a proning team during the surge in ICU patients with COVID-19 and to measure the impact of the program through surveys of staff involved., Methods/interventions: A proning protocol and educational plan was developed. A proning team of redeployed staff was created. A survey of ICU registered nurses and proning team members was used to evaluate the benefits and challenges of the proning team., Results: The proning team was successful in safely performing more than 300 proning and supinating maneuvers for critically ill patients. There is overwhelming support within the institution for a proning team for future COVID-19 surges., Discussion: The development and implementation of the proning team happened quickly to assist with the surge of patients and off-load work from ICU registered nurses. Despite the success of the proning team, more clearly defined roles and expectations, as well as additional education, are needed to further enhance teamwork and workflow., Conclusions: Creation of the proning team was a creative use of resources that helped manage the large and medically complex patient population. This work may serve as a guide to other health care institutions., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Abstract: Prone positioning of critically ill patients with acute respiratory distress syndrome is an accepted therapy done to improve oxygenation and promote weaning from mechanical ventilation. But there is limited information regarding its use outside of the ICU. At one Boston hospital, the influx of patients with suspected or confirmed COVID-19 strained its resources, requiring sweeping systems changes and inspiring innovations in clinical care. This article describes how an interdisciplinary team of clinicians developed a prone positioning protocol for use with awake, nonintubated, oxygen-dependent patients with suspected or confirmed COVID-19 on medical-surgical units, with the hope of hastening their recovery and avoiding deterioration and ICU transfer. A protocol implementation plan and staff educational materials were disseminated via the hospital incident command system and supported through daily leadership huddles. Patient eligibility criteria, including indications and contraindications, and a clear nursing procedure for the implementation of prone positioning with a given patient, were key elements. Nurses' feedback of their experiences with the protocol was elicited through an e-mailed survey. Nearly all respondents reported improvements in patients' oxygen saturation levels, while few respondents reported barriers to protocol implementation. The prone positioning protocol was found to be both feasible for and well tolerated by awake, nonintubated patients on medical-surgical units, and can serve as an example for other hospitals during this pandemic., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Abstract: The coronavirus disease 2019 (COVID-19) pandemic that emerged in early 2020 put unprecedented physical, mental, and emotional strain on the staff of health care organizations, who have been caring for a critically ill patient population for more than a year and a half. Amid the ongoing pandemic, health care workers have struggled to keep up with new information about the disease, while also coping with the anxiety associated with caring for affected patients. It has also been a continual challenge for nurse leaders to provide adequate support for staff members and keep them informed about frequently changing practices and protocols. In this article, nursing leaders at an academic medical center in Boston reflect on the initial COVID-19 patient surge, which occurred from March to June 2020, and identify key actions taken to provide clinical and emotional support to frontline staff who cared for these patients. Lessons learned in this period provide insight into the management of redeployed staff, use of emotional support and debriefing, and relationship between access to information and staff morale. The knowledge gained through these initial experiences has been a vital resource as health care workers continue to face challenges associated with the ongoing pandemic., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Background: This study examined the feasibility, burden and acceptability of a legacy-making intervention in adults with cancer and preliminary effects on patient quality-of-life (QOL) measures., Method: We conducted a Stage IB pilot, intervention study. The intervention was a digital video legacy-making interview of adults with advanced cancer to create a digital video of their memories and experiences. Baseline and post-video QOL assessments included: Functional Assessment of Cancer Therapy-General (FACT-G), Patient Dignity Inventory (PDI), Hospital Anxiety and Depression Scale (HADS), and Emotional Thermometers for distress, anxiety, anger, help and depression. Participants received a final copy of the digital video for distribution to their families., Results: Adults (n = 16) ages 38-83 years old with an advanced or life-limiting cancer diagnosis completed an intervention. Feasibility and acceptability was strong with 0% attrition. While the pilot study was not powered for quantitative significance, there were changes from baseline to post-intervention in the participants' total or subscale FACT-G scores, PDI, HADS anxiety or depression scores, and Emotional Thermometer scores., Conclusions: A digital video legacy-making intervention is feasible for adults with cancer without significant negative outcomes for individuals completing the study. It remains unclear whether this intervention contributes to positive quality of life outcomes.

Background: Clinical trials in home hospice settings are important to build the evidence base for practice, but balancing the burden and benefit of clinical trial conduct for clinicians, patients, and family caregivers is challenging. A stakeholder-engaged process can help inform and refine key aspects of home hospice clinical trials. The aim of this study was to describe a stakeholder-engaged process to refine, design, and implement aspects of an educational intervention trial in home hospice, including recommendations for refining intervention content and delivery, recruitment and enrollment strategies, and content and frequency of outcome measurement., Methods: A panel of interprofessional (1 hospice administrator, 3 nurses, 2 physicians, 2 pharmacists) and 2 former family caregiver stakeholders was systematically selected and invited to participate based on expertise, representing 2 geographically distinct hospices who were participating in the clinical trial. Teleconferences followed a predetermined procedural sequence: 1. pre-meeting materials distribution and review; 2. pre-meeting email solicitation of concerns in response to materials; 3. teleconference with structured and guided discussion; and 4. documentation and distribution of minutes for accuracy review and future meeting guidance. Discussion topics were distinct for each panel meeting. Written reflections on the stakeholder engagement process were collected from panel members to further refine our process., Results: Five initial biweekly teleconferences resulted in recommendations for recruitment strategy, enrollment process, measurement frequency, patient inclusion, and primary care physician notification of the patient's trial involvement. The panel continues to participate in quarterly teleconferences to review progress and unexpected questions and concerns. Panelist reflections reveal personal and professional benefit from participation., Conclusions: An interprofessional stakeholder process is feasible and invaluable for developing home hospice intervention studies, contributing to better science, successful trial implementation, and relevant, valid outcomes., Trial Registration: Clinicaltrials.gov, NCT03972163 , Registered June 3, 2019.

Lessons learned from one hospital's COVID-19 experience., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Clinical nurses are in a crucial position to provide primary palliative care by advocating for patients and families at the end of life, collaborating with the health care team to optimize quality of life, and contributing to enhanced symptom management. Most clinical nurses, however, have not received the comprehensive palliative care education needed to provide high-quality palliative care. The End-of-Life Nursing Education Consortium curriculum can bridge this gap by providing nurses with the knowledge needed to promote palliative care. Following completion of an End-of-Life Education Consortium train-the-trainer program, 6 nurses from a large, metropolitan academic medical center designed and implemented a series of 20-minute educational sessions informed by a hospital-wide needs assessment and based on the End-of-Life Nursing Education Consortium curriculum. The educational sessions, Palliative Care Conversations, provide clinical nurses with the core palliative care knowledge and skills needed to advocate for and provide patient-/family-centered care throughout the serious illness trajectory and at end of life. This article describes the process, design, and content of the palliative care educational sessions.

Nurses who care for patients with life-limiting illness operate at the interface of family caregivers (FCGs), patients, and prescribers and are uniquely positioned to guide late-life medication management, including challenging discussions about deprescribing. The study objective was to describe nurses' perspectives about their role in hospice FCG medication management. Content analysis was used to analyze qualitative interviews with nurses from a parent study exploring views on medication management and deprescribing for advanced cancer patients. Ten home and inpatient hospice nurses, drawn from 3 hospice agencies and their referring hospital systems in New England, were asked to describe current practices of medication management and deprescribing and to evaluate a pilot tool to standardize hospice medication review. Analysis of the 10 interviews revealed that hospice nurses are receptive to a standardized approach for comprehensive medication review upon hospice transition and responded favorably to opportunities to discuss medication discontinuation with FCGs and prescribers. Effective framing for discussions included focus on reducing harmful and nonessential medications and reducing caregiver burden. Results indicate that nurses who care for hospice-eligible and enrolled patients are willing to discuss deprescribing with FCGs and prescribers when conversations are framed around medication harms and their impact on quality of life.

Background: Effective leadership is necessary to meet the complex care needs of patients with serious, life-limiting illness. The Cambia Health Foundation Sojourns Scholars Program is advancing leadership in palliative care through supporting emerging leaders. The 2016 Cohort has implemented a range of projects to promote their leadership development. Objective: To describe the leadership themes emerging from individual project implementation of the 2016 Sojourns Leadership. Methods: We summarize the synthesized leadership themes derived from both remote and in-person meetings and written reflections of the 2016 Cambia Sojourn Leadership Cohort. Results: The 2016 Cambia Sojourn Leadership Scholar Cohort projects are described. We identified three leadership themes related to palliative care initiatives: openness and flexibility, partnership and team building, and leveraging expertise and risk. Discussion: Unprecedented challenges in a rapidly changing health environment demand palliative care leadership to influence care quality, delivery, policy, and clinical care. Flexibility and openness; partnership and team building; and expertise to implement change emerged as critical themes to advancing the care of patients with serious, life-limiting illness. These leadership themes are consistent with both previous Cambia Sojourns Scholar cohorts and the literature, are essential for the next generation of leaders to implement new models of quality palliative care, payment for palliative care, and education for patients, caregivers, and health care providers. Conclusion: In order to design and implement quality palliative care, leadership development is essential. Use of flexibility and openness; partnership and team building; and expertise to implement change are important themes for success. Whether through the Cambia Health Foundation Sojourns Leadership Program or opportunities within professional organizations, cultivation of the next generation of leaders is critical.

Background: Policies, procedures, and guidelines standardize care, meet regulatory requirements, and can promote safety in clinical practice. The existing protocols, policies, guidelines, and directives (PPGDs) at a level 1 trauma academic medical center were underused by the intensive care unit clinicians and did not always clearly represent the supporting evidence., Aims: The goals of this project were to update the Critical Care Practice Manual (CCPM) and to ensure that clinical practice was aligned with best evidence. The aim was to design a new PPGD template that used technology to enhance the presentation and functionality of these documents., Methods: Nurse project consultants reviewed every PPGD and solicited feedback from critical care nurses who consistently identified 2 barriers to utilization of CCPM: difficulty finding PPGDs and the cumbersomeness of lengthy policies. This improvement project used the principles of the Plan-Do-Study-Act cycle to test changes in real time. When 95% of the PPGDs were in the new format, a 22-question survey was created to elicit feedback from the direct care nurses who used the PPGD in the new electronic format., Results: On the basis of the survey results, nurses at the medical center accessed a PPGD at least once a month. The overall results indicated that the respondents agreed or strongly agreed that the PPGDs provided guidance (85%), reflected current practice (76%), were clear and concise (75%), and were evidence based (73%). Only 24% of those surveyed were still having difficulty finding PPGDs., Discussion/conclusion: To facilitate timely modification and early adoption of the new PPGD format, the Plan-Do-Study-Act cycle was effectively used. The CCPM adopted a new electronic format that met the aims of the project. When making a commitment to develop evidence-based practice policies and guidelines, it is important to revisit the process, consider ongoing support, and educate frontline staff as applicable. The new template restored and enhanced the standardization of PPGDs. Technology can enhance usability and improve functionality, but it can also prove to be frustrating when implementing changes that use it, especially if users are not comfortable with it.

A nurse project consultant role empowered 3 critical care nurses to expand their scope of practice beyond the bedside and engage within complex health care delivery systems to reduce harms in the intensive care unit. As members of an interdisciplinary team, the nurse project consultants contributed their clinical expertise and systems knowledge to develop innovations that optimize care provided in the intensive care unit. This article discusses the formal development of and institutional support for the nurse project consultant role. The nurse project consultants' responsibilities within a group of quality improvement initiatives are described and their challenges and lessons learned discussed. The nurse project consultant role is a new model of engaging critical care nurses as leaders in health care redesign., (©2018 American Association of Critical-Care Nurses.)

Aim: To develop and psychometrically assess the Ethical Awareness Scale using Rasch measurement principles and a Rasch item response theory model., Background: Critical care nurses must be equipped to provide good (ethical) patient care. This requires ethical awareness, which involves recognizing the ethical implications of all nursing actions. Ethical awareness is imperative in successfully addressing patient needs. Evidence suggests that the ethical import of everyday issues may often go unnoticed by nurses in practice. Assessing nurses' ethical awareness is a necessary first step in preparing nurses to identify and manage ethical issues in the highly dynamic critical care environment., Design: A cross-sectional design was used in two phases of instrument development., Method: Using Rasch principles, an item bank representing nursing actions was developed (33 items). Content validity testing was performed. Eighteen items were selected for face validity testing. Two rounds of operational testing were performed with critical care nurses in Boston between February-April 2017., Results: A Rasch analysis suggests sufficient item invariance across samples and sufficient construct validity. The analysis further demonstrates a progression of items uniformly along a hierarchical continuum; items that match respondent ability levels; response categories that are sufficiently used; and adequate internal consistency. Mean ethical awareness scores were in the low/moderate range., Conclusion: The results suggest the Ethical Awareness Scale is a psychometrically sound, reliable and valid measure of ethical awareness in critical care nurses., (© 2018 John Wiley & Sons Ltd.)

Background: Delirium affects up to 80% of critically ill patients; however, many cases of delirium go unrecognized because of inaccurate assessments. The effectiveness of interventions to improve assessment accuracy among the general population has been established, but assessments among neuroscience patients are uniquely complicated due to the presence of structural neurologic changes., Objectives: The purposes of this quality improvement project were to improve the accuracy of nurse's delirium assessments among neuroscience patients and to determine the comparative effectiveness of the intervention between medical and neuroscience patients., Methods: A multifaceted nurse-led intervention was implemented, and a retrospective analysis of preintervention and postintervention data on assessment accuracy was completed. Results were stratified by population, level of sedation, and level of care. Differences were analyzed using Fisher exact test., Results: Data from 1052 delirium assessments were analyzed and demonstrated improvement in assessment accuracy from 56.82% to 95.07% among all patients and from 29.79% to 92.98% among sedate or agitated patients. Although baseline accuracy was significantly lower among neuroscience patients versus medical intensive care unit patients, no significant differences in postintervention accuracy were noted between groups., Conclusion: Results from this project demonstrate the effectiveness of the nurse-led intervention among neuroscience patients. Future research is needed to explore the effectiveness of this nurse-led intervention across other institutions and to describe the effectiveness of new interventions to improve outcomes at the patient and organizational levels.

Purpose: Patients with advanced cancer benefit from early involvement of palliative care. The ideal method of palliative care integration remains to be determined, as does its effectiveness for patients treated with targeted and immune-based therapies., Materials and Methods: We studied the impact of an embedded palliative care team that saw patients in an academic oncology clinic specializing in targeted and immune-based therapies. Patients seen on a specific day accessed the embedded model, on the basis of automatic criteria; patients seen other days could be referred to a separate palliative care clinic (usual care). We abstracted data from the medical records of 114 patients who died during the 3 years after this model's implementation., Results: Compared with usual care (n = 88), patients with access to the embedded model (n = 26) encountered palliative care as outpatients more often ( P = .003) and earlier (mean, 231 v 109 days before death; P < .001). Hospice enrollment rates were similar ( P = .303), but duration was doubled (mean, 57 v 25 days; P = .006), and enrollment > 7 days before death-a core Quality Oncology Practice Initiative metric-was higher in the embedded model (odds ratio, 5.60; P = .034). Place of death ( P = .505) and end-of-life chemotherapy (odds ratio, 0.361; P = .204) did not differ between the two arms., Conclusion: A model of embedded and automatically triggered palliative care among patients treated exclusively with targeted and immune-based therapies was associated with significant improvements in use and timing of palliative care and hospice, compared with usual practice.

Objectives: Describe the development and key features of a model for embedded palliative care (PC) for patients with advanced kidney cancer or melanoma seen in a cancer clinic., Methods: Retrospective chart review of patients following an initial phase and then a prospective review following the implementation of a model for embedded PC., Results: In the initial phase, 18 patients were seen for a total of 53 visits; 78% were seen more than once, with a mean of three visits per patient. In the model phase, 46 patients were seen for a total of 163 visits; 74% were seen more than once, with a mean of 3.5 visits. Demographics were similar between the two groups. Content of the first PC visit in the initial and model phases was symptom management (61% and 57%), psychosocial support/relationship building (28% and 35%) and advance care planning/decision-making support (11% and 8%), respectively., Conclusions: The initial phase demonstrated acceptability and feasibility of a model for embedded PC for patients and the oncology team. Establishment of specific eligibility criteria and screening to identify eligible patients in the model phase led to an increased uptake of PC for patients with advanced kidney cancer and melanoma in a cancer clinic., Competing Interests: Competing interests: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Background: Assessment of family satisfaction after the death of a loved one in the intensive care unit (ICU) provides a way to determine whether quality end-of-life care was received by the patient and family. The purpose of this systematic review was to explore the factors associated with family satisfaction with end-of-life care in the ICU., Methods: A systematic literature review was conducted using electronic databases CINAHL, MEDLINE, EMBASE, and PsychINFO. Databases were searched using a combination of search terms: "family satisfaction," "end of life," "intensive care unit," and "family." Results were limited to English-language reports of empirical studies published from January 2000 to January 2016. Studies describing adult family members' satisfaction with end-of-life care of patients admitted or transferred to an ICU were included in the review., Results: The search yielded 466 articles. Review of the titles and abstracts resulted in 122 articles that underwent full review; 30 articles met study inclusion and were included in the final analysis. Major themes identified from the literature reviewed included communication, decision making, nursing care, ICU environment, and spiritual care., Conclusions: Families can provide valuable insight and information on the quality of care provided in the ICU at end of life. Their perceptions of communication, decision making, nursing care, the ICU environment, and spiritual support strongly influence their satisfaction or dissatisfaction with end-of-life care in the ICU. Personalized and frequent communication; assistance in the decision-making process; compassionate nursing care; a warm, family-friendly environment; and spiritual support can help alleviate the sequelae and enhance family satisfaction with end-of-life care in the ICU.

Background: Dyspnea (breathing discomfort) is a common and distressing symptom. Routine assessment and documentation can improve management and relieve suffering. A major barrier to routine dyspnea documentation is the concern that it will have a deleterious effect on nursing workflow and that it will not be readily accepted by nurses. Nurses at our institution recently began to assess and document dyspnea on all medical-surgical patients upon admission and once per shift throughout their hospitalization. A year after dyspnea measurement was implemented we explored nurses' approach to dyspnea assessment, their perception of patient response, and their perception of the utility and burden of dyspnea measurement., Methods: We obtained feedback from nurses using a three-part assessment of practice: 1) a series of recorded focus group interviews with nurses, 2) a time-motion observation of nurses performing routine dyspnea and pain assessment, and 3) a randomized, anonymous on-line survey based, in part, on issues raised in focus groups., Results: Ninety-four percent of the nurses surveyed reported administering the dyspnea assessment is "easy" or "very easy". None of the nurses reported that assessing dyspnea negatively impacted workflow and many reported that it positively improved their practice by increasing their awareness. Our time-motion data showed dyspnea assessment and documentation takes well less than a minute. Nurses endorsed the importance of routine measurement and agreed that most patients were able to provide a meaningful rating of their dyspnea. Nurses found the patient report very useful, and used it in conjunction with observed signs to respond to changes in a patient's condition., Conclusions: In this study, we have demonstrated that routine dyspnea assessment and documentation was widely accepted by the nurses at our institution. Our nurses fully incorporated routine dyspnea assessment and documentation into their practice and felt that it improved patient-centered care.

Healing and transcendence are concepts of considerable interest to nurses who engage in holistic nursing practice. The two concepts are often used within the context of adaptation to describe the processes experienced by individuals who experience suffering and distress from various life events. Despite their intuitive significance to the human experience, the similarities and differences between the two concepts remains unclear. The purpose of this paper is to present the results of a Roy adaptation model-guided comparison of the two concepts that addresses their shared and distinct characteristics., (© The Author(s) 2016.)

Background: Delirium occurs in up to 80% of intensive care unit (ICU) patients. Despite its prevalence in this population, there continues to be inaccuracies in delirium assessments. In the absence of accurate delirium assessments, delirium in critically ill ICU patients will remain unrecognized and will lead to negative clinical and organizational outcomes., Objectives: The goal of this quality improvement project was to facilitate sustained improvement in the accuracy of delirium assessments among all ICU patients including those who were sedate or agitated., Methods: A pretest-posttest design was used to evaluate the effectiveness of a program to improve the accuracy of delirium screenings among patients admitted to a medical ICU or coronary care unit., Results: Two hundred thirty-six delirium assessment audits were completed during the baseline period and 535 during the postintervention period. Compliance with performing at least 1 delirium assessment every shift was 85% at baseline and improved to 99% during the postintervention period. Baseline assessment accuracy was 70.31% among all patients and 53.49% among sedate and agitated patients. Postintervention assessment accuracy improved to 95.51% for all patients and 89.23% among sedate and agitated patients., Conclusion: The results from this project suggest the effectiveness of the program in improving assessment accuracy among difficult-to-assess patients. Further research is needed to demonstrate the effectiveness of this model across other critical care units, patient populations, and organizations.

The purpose of this study was to explore nurses' perception of their roles, team performance, and educational needs during resuscitation using an electronic survey. Findings provide direction for clinical practice, nursing education, and future research to improve resuscitation care.

This article presents an explication of spiritual healing situated within 3 nursing conceptual models (Neuman's systems model, Rogers' science of unitary human beings, and Roy's adaptation model) and 1 middle-range theory (Watson's theory of human caring), all of which include a focus on spirituality. These models and the theory are the vehicle for translation of themes of spiritual healing extracted from data provided by 30 adult male survivors of childhood maltreatment into nursing practice. This discipline-specific translational scholarship advances the profession of nursing.

The authors present an explanation of the development of a situation-specific theory of men's healing from maltreatment during childhood. Development of the theory was guided by Rogers' science of unitary human beings (SUHB). The four multidimensional concepts of the theory are interpreted within the context of the SUHB from themes discovered from the findings of a hermeneutic phenomenological study of men who had been exposed to childhood maltreatment, including neglect and abuse. The concepts are: moving beyond suffering, desiring release from suffering, dwelling in suffering, and experiencing wellbeing. Moving beyond suffering is the process of healing from childhood maltreatment. Desiring release from suffering is the facilitator of men's life experiences that speeds up the rate of evolution from moving beyond suffering to experiencing healing. Dwelling in suffering is the barrier in men's life experiences that slows down the rate of evolution from moving beyond suffering to experiencing wellbeing., (© The Author(s) 2014.)

Objective: Social and economic barriers can hinder access to quality palliative and end-of-life care for patients living in inner-city communities. Using a community-based participatory research (CBPR) approach, we investigated the stresses associated with living with a chronic disease and barriers to access and utilization of palliative care resources experienced by low-income patients and caregivers in five inner-city communities., Methods: Four focus groups (N = 33) were conducted with community stakeholders, including healthcare professionals (social workers and nurses), persons living with chronic illnesses (e.g., HIV/AIDS, cardiovascular disease, and cancer), and caregivers. Focus group responses were analyzed using thematic analyses., Results: Patients' and caregivers' stresses centered around five themes: lack of family support, communication barriers with healthcare professionals, minority stress, caregiver burden, and lack of spiritual support. The community stakeholders identified resources and services to improve access to care and the quality of life of underserved, low-income populations living with chronic illnesses., Significance of Results: A CBPR approach enabled us to develop an interdisciplinary and culturally sensitive intervention to begin addressing the palliative and end-of-life needs of the patients and caregivers of the inner-city community.

Based on findings from a hermeneutic phenomenological study, this article provides a description and interpretation of barriers to healing that men encountered in the aftermath of childhood maltreatment. An analysis of interview data collected from 52 adult male survivors healing from childhood maltreatment identified a theme, Dwelling in Suffering, as representing the full range of barriers that impeded their healing. Subthemes of Dwelling in Suffering Personally, Relationally, and Social-Environmentally are discussed. This research highlights a complex understanding of the challenges men experience in healing from childhood maltreatment and the need for practice interventions and future research to ameliorate men's suffering.