Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles.

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.

Social Determinants of Health and Multimorbidity Among Adults 50 Years and Older in the United States.

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.

The Experiences of Nurses as Double-Duty Caregivers for a Family Member at the End of Life: Interpretive Description.

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.

Benefits of Early Palliative Care Integration in a Day Care Program: The Patients' Perspective.

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.

Understanding primary palliative nursing education in undergraduate nursing programs.

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.

Advance Care Planning for Spanish-Language Speakers: Patient, Family, and Interpreter Perspectives.

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.

Advance Care Planning in Serious Illness: A Narrative Review.

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.

Improving Accuracy in Documenting Cardiopulmonary Arrest Events.

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.

Palliative Care Masterclass for Nurses in Central-Eastern Europe: An International Collaboration.

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.

Building Strong Clinician-Researcher Collaborations for Successful Hospice and Palliative Care Research.

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.

Healing experience for family caregivers after an intensive care unit death.

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.

Development, Implementation, and Impact of a Proning Team During the COVID-19 Intensive Care Unit Surge.

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.

Doubling Intensive Care Unit Capacity by Surging Onto Medical-Surgical Units During the COVID-19 Pandemic.

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.

CE: A Prone Positioning Protocol for Awake, Nonintubated Patients with COVID-19.

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.

Supporting Frontline Staff During the COVID-19 Pandemic.

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.

Shared Medication PLanning In (SIMPLIfy) Home Hospice: An Educational Program to Enable Goal-Concordant Prescribing In Home Hospice.

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.

Stakeholder-engaged process for refining the design of a clinical trial in home hospice.

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.

A nurse staffing model for an unprecedented event.

Lessons learned from one hospital's COVID-19 experience.