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Background : All physicians encounter patients with serious illness. Medical students recognize the value of hospice and palliative medicine (HPM) and desire more knowledge and skills in this area. However, both pre-clinical and clinical HPM content are underrepresented within medical school curricula. Objectives : To conduct a pilot study examining the impact of a novel required HPM clinical experience on pre-clinical medical and dental students' learning through mixed methods evaluation of student responses. Design : Students completed a two-part electronic survey following a half-day HPM mentored clinical shadowing experience (HPM-MCSE) which included an introductory session, a faculty-mentored shadowing experience and a debriefing session. Setting/subjects: 163 first-year students at Harvard Medical School in Boston, Massachusetts, USA in 2022. Measurements : The survey collected demographic information and student responses to both closed-ended (Likert-scale) and open-ended prompts. Data were analyzed quantitatively using descriptive statistics and qualitatively using constant comparative methodology. Results : 127 medical and dental students responded (78% response rate). Qualitative analysis yielded three overarching themes: acquisition of knowledge about operational dimensions of HPM, acquisition of knowledge about psychosocial dimensions of HPM, and personal impact including an awareness of discordance between expectations and lived experience of HPM practice. Of the 109 students who completed the entire survey, 67% indicated that this experience increased their interest in palliative care and 98% reported an increase in their understanding of how palliative care enhances patient care. Conclusions : Early clinical exposure to HPM for first year students stimulates multi-dimensional learning about HPM and evokes personal reflection about serious illness care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Hospice care leads to improved patient and family outcomes. Hospice use among older adults with end-stage kidney disease (ESKD) is markedly lower than among older adults with other serious illnesses, and the majority of those with ESKD who use hospice enroll in the last days of life. Here, our aim was to explore barriers to timely receipt of high-quality hospice care for older adults with ESKD., Methods: Utilizing a qualitative study design, we conducted a secondary analysis focused on hospice, a theme that we identified in our larger overarching study that involved semi-structured interviews with 20 nephrologists in the United States focused on treatment decision-making in older adults with advanced chronic kidney disease. We analyzed the interview transcripts using emergent thematic analysis to develop an understanding of barriers to high-quality hospice., Results: With a couple notable exceptions, nephrologists voiced general support for the concept of hospice, but few recalled patients of theirs who had received hospice. Nephrologists' interviews revealed two interrelated contributors to the lack of timely access to high-quality hospice care for seriously ill older adults with ESKD: (1) nephrologists view dialysis and hospice as mutually exclusive models of care; (2) nephrologists feel unsure who should manage hospice care for patients with ESKD. The first contributor was rooted in nephrologists' narrow vision of when to consider hospice (informed, in part, by policy barriers) and, in a couple of cases, strong discomfort with hospice. The second stemmed from nephrologists' belief that neither they nor hospice are adequately prepared to provide hospice care for ESKD., Conclusions: Our findings suggest that, in addition to Medicare policy change, nephrologists need to receive more training in primary palliative care skills including in indications for hospice, initiating conversations about hospice with patients, and collaborating with hospice clinicians to care for these vulnerable patients., (© 2024 The American Geriatrics Society. This article has been contributed to by U.S. Government employees and their work is in the public domain in the USA.)

In light of the COVID-19 pandemic, a pediatric hospice in Ottawa, Ontario, implemented a Virtual Bereavement Group Program, necessitating a reorganization of care delivery during the global crisis. This paper outlines the program and assesses the feedback of families who participated in the program following the death of a child or grandchild. Participants expressed high levels of satisfaction, indicating its potential as an effective approach for pediatric bereavement care beyond the pandemic.

Little is known about community-based transitions to home hospice care. We used a Straussian grounded theory approach to understand the basic social process of care transitions that patients and their caregivers use when electing hospice care. Participants were recruited from hospice agencies serving 3 counties in New York State. Data were collected through 7 interviews of patients, patient-and-caregiver dyads, and a hospice nurse (n = 10). Data were analyzed using the constant comparative method. Our results generated an emerging grounded theory of the hospice care transition processes rooted in maintaining personhood and autonomy. There were 5 contemporaneous steps: (1) recognizing futility and pursuing comfort; (2) seeking help and input as health declines; (3) shopping for the right services, overcoming obstacles, and self-referring to hospice care; (4) attending to the business of dying while living; and (5) processing and expressing emotions. Although not central to the care transition process, an additional step was identified that occurred after the transition to hospice care: planning for an uncertain future. The hospice care transition process identified in the study reveals important mechanistic targets for the development of interventions that promote patient-centered hospice care transitions in the home setting., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 by The Hospice and Palliative Nurses Association. All rights reserved.)

Background: Hospice care is an underused form of intervention at the end of life. The experiences of patients, families, and other caregivers are important to consider in thinking about how to encourage greater use of hospice care, through policies and advocacy that promote its benefits. Specifically, patient, family, and other caregiver satisfaction with hospice care is important to understand better. Methods: A PRISMA-guided review of the research on hospice care satisfaction and its correlates among patients, families, and other caregivers. Included in the review is research published over the time period 2000-2023 identifying a hospice care satisfaction finding. Results: Thirty-eight studies were included in the review. Key findings were: (a) higher levels of hospice care satisfaction among patients, families, and other caregivers; and (b) correlates of hospice care satisfaction falling into the categories of communication, comfort, and support. The published literature had fewer findings related to demographic correlates of satisfaction such as age or race/ethnicity and was lacking in comparative research examining satisfaction across different types of hospice care settings. Discussion: Extant research demonstrates a consistently higher level of hospice care satisfaction among patients, families, and other caregivers. This satisfaction appears related to specific aspects of care delivery that involve effective care coordination and communication; pain and symptom management; and emotional support. Strengthening future research involves testing additional interventions aimed at enhancing satisfaction; including more comparative research across hospice care settings; and more studies that include patients as the key respondents., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: Although often unrecognized, volunteers fulfill many essential roles in hospices and other end-of-life care settings. Volunteers complement the actions of professionals in fulfilling many extra care needs, such as delivering newspapers and tidying bedsides. We explored end-of-life conversations about death and dying between hospice volunteers and terminally ill people, with a particular emphasis on any expressed desire to die. Our 2 research questions were as follows: (1) What is the nature of end-of-life conversations between hospice patients and hospice volunteers? and (2) How do hospice volunteers experience conversations about death and dying with patients who are at the end-of-life?, Methods: We conducted semi-structured interviews using an interpretive phenomenological analysis. We recruited hospice volunteers from 4 hospices in Calgary, Edmonton, and Red Deer; 3 larger cities in the province of Alberta, Canada., Results: We interviewed 12 participants to saturation. Four themes emerged: (1) trusting conversations about death and dying in the context of a safe place; (2) normalcy of conversations about death and dying; (3) building meaningful relationships; and (4) end-of-life conversations as a transformative experience. Our results emphasize the importance of preparing volunteers for conversations about death and dying, including the desire to die., Significance of Results: The safe environment of the hospice, the commitment to patient confidentiality, and the ability of volunteers to meet the basic and emotional needs of dying people or simply just be present without having formal care duties that need to be completed contribute to volunteers being able to participate in timely and needed conversations about death and dying, including the desire to die. In turn, hospice experiences and end-of-life conversations provide a transformative experience for volunteers.

Veterans make up a quarter of the deaths in the United States (US). However, little is known about their knowledge and preferences about end-of-life care and pain management. Given this, we were interested in how veterans' military experiences impact their end-of-life experiences and attitudes. Our exploratory study addressed the knowledge and perceptions of hospice and pain management at the end of life. The quantitative aspect was a survey using descriptive statistics that used a small (n = 14) subgroup from a randomly selected sample in the continental US. A small population-based sample (N = 123) used a blended sampling frame of randomly selected validated cell phone and landline numbers. The qualitative aspect examined eight targeted interviews of urban dwelling older veterans over age 60 residing in Northeast Ohio to get a deeper understanding of their knowledge and attitudes toward end-of-life care. Our findings suggest that veterans did not understand the difference between hospice and palliative care and expressed concerns regarding pain medication use at the end of life. Future research examining the concept of stoicism at the end of life among veterans and educational interventions are needed., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Purpose: An ageing population and a global pandemic has placed greater demands on palliative care services. Numerous studies describe the patient experience in palliative care, however, few explore the healthcare professional's experience of caring in this setting. This study explored the emotional challenges faced by palliative care professionals working in adult hospice services in Ireland., Design/methodology/approach: A narrative phenomenological approach was adopted, using interpretative phenomenological analysis to analyse results from five participants' semi-structured interviews., Findings: The type of challenge experienced reflected the impact it had on the participant's emotional wellbeing. Challenges perceived as achievable contributed to high levels of emotional wellbeing. These challenges often offered the opportunity for skill development and elicited positive feelings. Challenges perceived as uncontrollable negatively impacted the professional's emotional wellbeing and increased their risk of burnout. Examples of this included the shift in service provision and professional expectations. The challenges palliative care professionals experience on a daily basis can negatively or positively impact their emotional wellbeing., Conclusion: Overall, this study highlighted challenges and their impacts experienced by palliative care professionals, illustrating key areas for improvement to prioritise staff wellbeing.

Context: Hospice services are underutilized by the Latino community in the United States. Previous research has identified that language is a key barrier contributing to disparities. However, very few studies have been conducted in Spanish to specifically explore other barriers to hospice enrollment or values related to end-of-life (EOL) care in this community. Here, we remove the language barrier in order to gain an in-depth understanding of what members of the diverse Latino community in one state in the USA considers high quality EOL and barriers to hospice. Methods: This exploratory semi-structured individual interview study of Latino community members was conducted in Spanish. Interviews were audio-recorded, transcribed verbatim and translated to English. Transcripts were analyzed by three researchers, using a grounded-theory approach to identify themes and sub-themes. Main Findings: Six major themes emerged: (1) concept of "a good death"-spiritual peace, family/community connection, no burdens left behind; (2) centrality of family; (3) lack of knowledge about hospice/palliative care; (4) Spanish language as critical; (5) communication style differences; and (6) necessity for cultural understanding. The central theme of "a good death" was closely linked to having the entire family physically and emotionally present. The four other themes represent interrelated, compounding barriers to achieving this "good death." Principal Conclusions: Healthcare providers and the Latino community can work together to decrease hospice utilization disparities by: actively involving family at every step; addressing misconceptions regarding hospice; conducting important conversations in Spanish; and improving provider skills in culturally sensitive care, including communication style., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: With an untapped quality resource in online hospice reviews, study aims were exploring hospice caregiver experiences and assessing their expectations of the hospice Medicare benefit. Methods: Topical and sentiment analysis was conducted using natural language processing (NLP) of Google and Yelp caregiver reviews (n = 3393) between 2013-2023 using Google NLP. Stratified sampling weighted by hospice size to approximate the daily census of US hospice enrollees. Results: Overall caregiver sentiment of hospice care was neutral (S = .14). Therapeutic, achievable expectations and misperceptions, unachievable expectations were, respectively, the most and least prevalent domains. Four topics with the highest prevalence, all had moderately positive sentiments: caring staff , staff professionalism and knowledge ; emotional, spiritual, bereavement support ; and responsive, timely or helpful . Lowest sentiments scores were lack of staffing ; promises made, but not kept , pain, symptoms and medications; sped-up death, hasted, or sedated; and money, staff motivations . Significance of Results: Caregivers overall rating of hospice was neutral, largely due to moderate sentiment on achievable expectations in two-thirds of reviews mixed with unachievable expectations in one-sixth of reviews. Hospice caregivers were most likely to recommend hospices with caring staff, providing quality care, responsive to requests, and offering family support. Lack of staff, inadequate pain-symptom management were the two biggest barriers to hospice quality. All eight CAHPS measures were found in the discovered review topics. Close-ended CAHPS scores and open-ended online reviews have complementary insights. Future research should explore associations between CAHPS and review insights., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. Methods: The purpose of this secondary analysis of data collected from a U.S.-based cluster crossover randomized trial was to evaluate whether caregiver-centered communication (Caregiver-Centered Communication Questionnaire) is associated with a caregiver's perceptions of involvement in care (Perceived Involved in Care Scale). A block-wise approach was used to estimate linear models, which were created using total scores and subscale scores. Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well.

Racial disparities in hospice use are a longstanding concern in the U.S. Asian Americans are among the least likely to receive hospice care and to be included in studies on this topic. This study examined the knowledge, attitudes, and preferences related to hospice care among older Chinese immigrants and associated factors. A sample of 262 Chinese immigrants age 60+ was recruited from six older adult centers in NYC. In-person interviews were conducted in Mandarin and Cantonese. Non-English-speaking older Chinese immigrants had very limited knowledge about hospice care. Only 26% of respondents had heard of hospice, and a few could correctly define any components. After receiving a comprehensive definition of hospice care, study participants expressed a positive attitude and a strong willingness to use hospice if near the end of life. Notably, some respondents still held misconceptions about hospice and were less positive in their attitude and preference for hospice care. These findings underscore the necessity for clear and accessible information about hospice among this population throughout the trajectory from good health to end of life. Further research is needed to identify the range of factors that influence the attitudes and preferences of older Chinese immigrants toward hospice care.

Background: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes., Methods: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement., Results: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007)., Conclusions: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement., (© 2023 American Cancer Society.)

Background: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use., Objective: This study explored US South Asian youths' knowledge of, and attitudes towards hospice care., Design: Qualitative study, using focus group discussions., Methods: Thirty-six university students of South Asian heritage participated in ten focus group discussions. Data were coded inductively and deductively. Thematic analysis was performed. Disagreements were resolved through discussion., Results: Participants were in consensus that if patients had an incurable, fatal condition, keeping them comfortable was important. Several participants were unaware of the terms 'hospice' and 'palliative care'. After these terms were explained, most opposed hospice care for reasons of 'desire for a normal life', 'cultural incompatibility', 'concerns about the hospice environment' and 'preference for home as the place of death'. Some were opposed to even home hospice fearing that it would continuously remind the family and patient about impending death. Concerns were also expressed about having a 'stranger' in the home to provide hospice care. One participant said she would support hospice use if it aligned with the patient's values. Others cited financial reasons and quality of life as considerations in choosing hospice care., Conclusions: Research is needed on culturally-appropriate modes of palliative care education and advocacy for South Asian populations in the US, especially youth, that are often the decision makers for the care of older family members., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad., Aim: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units?, Methods: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory., Results: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher"., Conclusion: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices., (© 2024. The Author(s).)

Background: Although there is growing demand for hospice care in China due to its aging population and increasing cancer rates, the sector remains slow to expand. Oncology nurses are the primary providers of hospice care, but little is known about their behaviors towards hospice care and related factors., Methods: This cross-sectional study conveniently sampled 933 oncology nurses from six grade A tertiary hospitals in Hubei Province between January to March 2022. The questionnaire was composed of seven parts: general information (including sociodemographic and work-related information), hospice care behaviors, hospice care knowledge, hospice care attitudes, hospice care self-efficacy, hospice care outcome expectancy, and hospice care environment. Data were analyzed using descriptive analysis, independent sample t-tests, one-way ANOVA, Pearson's correlation, multiple linear regression, random forest regression, and BP neural network model analysis., Results: A total of 852 questionnaires were valid. The mean score of hospice care behaviors was 50.47 ± 10.56, with a mean item score of 3.61 ± 0.75. The three highest scoring behaviors were "pain assessment of patients (4.21 ± 0.91)", "satisfying the physical and mental needs of dying patients (4.04 ± 0.92)", and "creating good relationships between the medical staff and family members (4.02 ± 0.87)". The two lowest-scoring behaviors were "proactively recommending medical institutions for hospice care to terminally ill patients and their families (2.55 ± 1.10)" and "proactively talking to patients and families about death-related topics for patients who are critically ill and cannot be reversed (2.87 ± 1.03)." Multiple linear regression, random forest regression, and BP neural network models all showed that the frequency of sharing hospice care experiences with colleagues, hospice care attitudes, hospice care self-efficacy, and hospice care environments were positively associated with hospice care behaviors., Conclusions: The frequency of hospice care behaviors among Chinese oncology nurses is generally at a moderate to high level. The results provide a basis for promoting hospice care behaviors among oncology nurses in order to improve the quality of life for terminally ill cancer patients., (© 2024. The Author(s).)

Objectives: With a fraction of hospices having their Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores on Hospice Compare, a significant reservoir of hospice quality data remains in online caregiver reviews. The purpose of this study was to develop a method and model of hospice quality assessment from caregiver reviews using Watson's carative model., Methods: Retrospective mixed methods of pilot qualitative thematic analysis and sentiment analysis using NLP of Google and Yelp caregiver reviews between 2013 and 2023. We employed stratified sampling, weighted according to hospice size, to emulate the daily census of enrollees across the United States. Sentiment analysis was performed ( n  = 3393) using Google NLP., Results: Two themes with the highest prevalence had moderately positive sentiments (S): Caring staff (+.47) and Care quality, comfort and cleanliness (+.41). Other positive sentiment scores with high prevalence were Gratitude and thanks (+.81), "Treating the patient with respect" (+.54) , and "Emotional, spiritual, bereavement support" (+.60). Lowest sentiment scores were " Insurance, administrative or billing" (-.37), " Lack of staffing" (-.32), and " Communication with the family" (-.01)., Significance of Results: In the developed quality model, caregivers recommended hospices with caring staff, providing quality care, responsive to requests, and offering family support, including bereavement care. All ten Watson's carative factors and all eight CAHPS measures were presented in the discovered review themes of the quality model. Close-ended CAHPS scores and open-ended online reviews have substantial conceptual overlap and complementary insights. Future hospice quality research should explore caregiver expectations and compare review themes by profit status.

Background: Family caregivers (FCGs) encounter several physical, psychosocial, and financial struggles while caring for a dying loved one. After their loved one has passed, FCGs face new difficulties as they transition out of the caregiving role and into bereavement. Recent research has focused on the positive adaptive outcomes of bereavement. Objective: This study examined the relationship between core bereavement experiences and post-traumatic growth (PTG) for bereaved hospice FCGs. Design: This is a quantitative cross-sectional mail-in survey. Settings/Subjects: A total of 395 bereaved FCGs of patients who died while under the care of a comprehensive hospice program were surveyed. Measurements: Demographics were collected. Bereavement experiences were assessed using the core bereavement items, and PTG was assessed using the Posttraumatic Growth Inventory (PTGI). Both surveys are validated measures. Results: Two-tailed bivariate correlations were used to analyze the relationships between bereavement experiences and PTG. Significant positive relationships were found between all bereavement experiences and PTG variables ( p  = <0.01-0.011, r  = 0.134-0.290), except for one variable pairing (grief × new possibilities). Participants who reported more intense bereavement experiences also reported greater PTG, especially in the areas relating to others and appreciation of life. Conclusion: FCGs who undergo more intense bereavement experiences tend to experience greater PTG. This information can be used in the future to develop a more comprehensive understanding of the multifaceted nature of grief and loss.

When conscious, about 50% to 60% of hospice patients report a "visitation" by someone who is not there while they dream or are awake: a phenomenon known as End-of-Life Dreams and Visions (ELDVs). Since the dying process is frequently complicated by delirium, ELDVs risk being misidentified as such by professionals and caregivers. To observe these phenomena from patients' perspectives, we conducted a systematic review to aggregate and synthesize the findings from the qualitative studies about ELDVs of patients assisted in hospices to indicate future directions for research and care. MEDLINE/PubMed, Embase, CINAHL, PsycINFO, Scopus, and Web of Science databases were searched, yielding 293 documents after duplicates were removed. Six qualitative articles reporting on five unique studies conducted in hospice settings were included in the meta-synthesis. We generated three main categories: i) typologies of ELDVs reported, ii) emotional consequences, and iii) intersubjective meaning-making. The ELDVs reported were experiences that remained intimate and unsocialized and thus preventing participants from defining a shared sense in their relationships. Training healthcare professionals to recognize ELDVs and take advantage of them in the care relationship is desirable. We also encourage the patient's family members to listen and understand ELDVs when they occur actively. For caregivers to know how to interpret these phenomena may provide them with additional strategies for supporting, reassuring, and strengthening their relationships with their loved ones. The review allowed us to inform healthcare professionals and caregivers about how to help patients share their emotional and identity-related experiences and meaning-making in end-of-life., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

This article highlights recent research findings that have significance for hospice and palliative care social work in Canada, and for the field of hospice and palliative care more broadly. A 2020 discourse analysis study examined the experiences of 24 interdisciplinary palliative care clinicians across Canada in their work with patients' nonphysical suffering. Nonphysical suffering is suffering that may be emotional, psychological, social, spiritual and/or existential in nature. The study found an absence of specialist social workers on hospice and palliative care teams or limited time for specialist social workers to address patients' nonphysical suffering due to high caseloads and complex practical needs. While the study recognizes social workers have expertise in supporting patients' nonphysical suffering, a competency and skill that has not been sufficiently captured in the existing literature, the systemic barriers they face in providing care may leave patients' needs unmet. The study also highlights the unique pressure social workers may feel to relieve patients' nonphysical suffering due to the psychosocial focus of their role. The need for specialist social workers to be included and adequately resourced on hospice and palliative care teams across diverse settings in Canada is evident.

Bereavement care is conducted to meet the emotional needs of grieving couples who are devastated by the experience of a miscarriage or stillbirth. From January to April 2022, we distributed a questionnaire that assessed the knowledge and attitudes of Japanese nursing staff (nurses and midwives) in Japan's Chugoku-Shikoku region toward bereavement care for couples with miscarriage/stillbirth. The 370 survey respondents' answers revealed that the nursing staff's knowledge regarding recurrent pregnancy loss and subsequent bereavement care was insufficient. About 41.1% and 64.1% of the respondents had received school and on-the-job education in bereavement care, respectively, and 79.2% expressed willingness to provide such care. Our analyses revealed that the following factors were associated with the nursing staff's knowledge level: parent status, age, reproductive history, midwifery license, work experience and environment, and on-the-job education. The following were correlated with the staff's willingness to provide bereavement care: work environment, midwifery license, bereavement care knowledge, and on-the-job education. Together our findings indicate that education plays a significant role in equipping caregivers to provide effective bereavement care for couples who have experienced a miscarriage or stillbirth., Competing Interests: No potential conflict of interest relevant to this article was reported.

Background: Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in palliative care on what comprises mutual support between patients and their family caregivers in palliative care., Aim: To identify processes of mutual support between patients and family caregivers in palliative care., Design: Qualitative study comprising semi-structured interviews. Data were analysed using grounded theory procedures., Setting/participants: Fifteen patients with advanced illness (cancer n  = 14, neurodegenerative n  = 1) and 21 family caregivers recruited from a large regional-based hospice., Results: Mutual support between patients and family caregivers comprised two primary modes in which support was provided and received. Mutual support involved both patients and family caregivers providing similar types of support to each other, and which typically manifested as emotional support. However, mutual support also occurred when patients reciprocated by providing emotional support to their family caregivers to compensate for other forms of support which they felt no longer able to provide. Patients supported family caregivers by involving them in decision-making for care and both patient and family caregiver preferences were influenced by obligation to their respective other. Mutual support comprised both disclosure and concealment. Involving family caregivers in patient care decision-making was intended by patients to help family caregivers adjust to a caregiving role., Conclusions: The findings inform the development and delivery of psychosocial interventions for patients and family caregivers in palliative care aimed at facilitating supportive relations between them., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Purpose: To evaluate the effectiveness of the constructed OOIDE intervention in patients with advanced cancer., Method: In this study, patients were invited to participate in a 4-week OOIDE intervention. The assessment of patients' ability to cope with death was conducted using a scale in conjunction with interviews. Additionally, patients' 'readiness to die' was assessed., Results: Thirty-two patients with advanced cancer participated in this study. Our intervention significantly enhanced their perspective on life and spirituality, while also reducing their fear of death (P < 0.01). Furthermore, it facilitated their acceptance of death, encouraged a more rational approach to their illness, and fostered an understanding of hospice care, thereby reinforcing their sense of self-worth. Additionally, the intervention improved the relationship between the patient and their families, fostering greater mutual understanding and respect for the patient's perspectives. Comparing the results to the pre-intervention period, there was a significant increase in the number of patients who discussed death with their families and contemplated the place of their passing (P < 0.05)., Conclusion: OOIDE improves participants' ability to confront death, while also assisting patients' families in the physical and psychological preparations for the loss of their relative., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 Elsevier Ltd. All rights reserved.)

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 by The Hospice and Palliative Nurses Association. All rights reserved.)

Background: Hospice agencies lack an explicit live discharge process to guide practitioners in transitioning these patients and their primary caregivers (PCGs) out of hospice care. Based on previous research and input from an advisory committee, a live discharge protocol (LDP) was drafted with .three general areas of assessment: 1) concrete services; 2) psychosocial assessment; and 3) 30-day post discharge follow-up phone call. This study sought to gather perspectives from hospice social workers on the proposed assessment components and other needs in implementing a LDP. Methods: Purposive, convenience sampling occurred over 4 months. Participants were hospice social workers (n = 14) recruited through personal and professional contacts and social media. Four focus groups were conducted via Zoom. Data was analyzed using thematic analysis. Results: Three major themes appeared: 1) benefits and challenges of having a structured discharge protocol (n = 14); 2) need for specific LDP roles across team members (n = 11); and 3) education and clear boundaries for both patients/PCGs and professionals (n = 9). Conclusions: All three assessment components of the preliminary LDP were deemed necessary by participants; however, implementation challenges were both unique for each agency and reflective of the broader hospice culture. Further research is needed to measure the impact of the LDP.

Background: Knowledge of the experiences of coping in patients with incurable cancer is essential for high-quality palliative and end-of-life care., Aim and Objective: To describe the coping experiences of patients with incurable cancer in hospice care to better develop patient-centred care., Methods: The data for this qualitative study were collected through semi structured interviews, with patients with incurable cancer in hospice care (N = 20) and analysed with inductive content analysis. Ethical and organisational approvals were obtained, and the participants received both verbal and written information before consenting to participate., Results: The patients' coping was enhanced with their involvement in treatment-related decisions. Valuing day-to-day living and coping with emotional stressors helped them accept their own life situations. Accepting their increasing fragility was enhanced by their self-reappraisal. The patients found security in the possibility of receiving support when they needed it. Although the ordinariness of dying in hospice care settings was sometimes too much to bear, they understood dying to be a part of the natural cycle of life. They questioned the responsiveness of healthcare services because they felt that they were not always heard., Study Limitations: Because this study was limited to a specific population of cancer patients in hospice care, the results might not be generalised to other patient groups with chronic diseases or other palliative care settings., Conclusions: The experiences of patients in hospice care of coping with incurable cancer were reminiscent of the common coping process descriptions. Surprisingly, even though participants voiced that they had accepted their situation, dying itself was something they did not find crucial to discuss. The crucial aspects - without being in denial - dealt more with focusing on positive thinking and facing life., (© 2023 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Objective: To assess the attitudes and care practices of midwives and nurses in the province of Granada in relation to death care and perinatal bereavement, to determine their degree of adaptation to international standards and to identify possible differences in personal factors among those who best adapt to international recommendations., Design: A local survey of 117 nurses and midwives from the five maternity hospitals in the province was conducted using the Lucina questionnaire developed to explore professionals' emotions, opinions, and knowledge during perinatal bereavement care. Adaptation of practices to international recommendations was assessed using the CiaoLapo Stillbirth Support (CLASS) checklist. Socio-demographic data were collected to establish their association with increased compliance with recommendations., Findings: The response rate was 75.4%, the majority were women (88.9%), with a mean age of 40.9 (SD=1.4) and 17.4 (SD= 10.58) years of work experience. Midwives were the most represented (67.5%) and reported having attended more cases of perinatal death (p = 0.010) and having more specific training (p<0.001.) Of these, 57.3% would recommend immediate delivery, 26.5% would recommend the use of pharmacological sedation during delivery and 47% would take the baby immediately if the parents expressed their wish not to watch them. On the other hand, only 58% would be in favour of taking photos for the creation of memories, 47% would bathe and dress the baby in all cases, and 33.3% would allow the company of other family members. The percentage that matched each recommendation on memory-making was 58%, 41.9% matched the recommendations on respect for the baby and parents, and 23% and 10.3% matched the appropriate delivery and follow-up options, respectively. The factors associated with 100% of the recommendations, according to the care sector, were being a woman, a midwife, having specific training and having personally experienced the situation., Key Conclusions: Although the levels of adaptation observed are more favourable than in other nearby contexts, serious deficiencies are identified in the province of Granada with respect to internationally agreed recommendations on perinatal bereavement care. More training and awareness-raising of midwives and nurses is needed, which also considers factors related to better compliance., Implication for Practice: This is the first study to quantify the degree of adaptation to international recommendations in Spain reported by midwives and nurses, as well as the individual factors associated with a higher level of compliance. Areas for improvement and explanatory variables of adaptation are identified, which allow support for possible training and awareness-raising programmes aimed at improving the quality of care provided to bereaved families., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States. Descriptive statistics, correlations, hierarchical linear regressions, and moderation analyses were used. Measurements: Baseline data included demographics, preparedness for caregiving, perceived burden, and well-being (i.e., global health, positive affect and well-being, anxiety, depression). Results: The majority of the 90 participants were White (86.7%), married (71.1%), and college educated (85.6%). The mean age was 58.27 ± 14.22, 53.3% cared for a spouse, and 56.6% worked full or part time. After controlling for demographics, and using employment status as a moderator, greater caregiver burden was significantly associated with lower global health ( β  = -0.82 [-1.22 to -0.42], p  < 0.001), positive affect and well-being scores ( β  = -0.69 [-1.03 to -0.36], p  < 0.001), and higher depression ( β  = 0.24 [0.12-0.37], p  < 0.001) and anxiety scores ( β  = 0.22 [0.07-0.37], p  < 0.005). Employment status significantly moderated the relationship between burden and global health ( β  = 0.65 [0.22 to 1.08], p  < 0.005), and burden and positive affect and well-being ( β  = 0.45 [0.06 to 0.84], p  < 0.05). At high levels of burden, workers had greater well-being than nonworkers. Conclusion(s): More burdened hospice caregivers may experience worse well-being, especially among nonworking caregivers. Employment may be a protective factor for highly burdened hospice family caregivers.

Objectives: To better understand palliative care knowledge and beliefs of patients with stage II or greater bladder cancer and their caregivers., Subjects and Methods: Participants were primarily patients diagnosed with muscle-invasive or locally advanced bladder cancer. All were encouraged to enroll with a caregiver (defined as the individual who most closely assists with a patient's care). Participants completed a survey and semistructured interview. Applied thematic analysis techniques were used to analyze the interview data. In total, we recruited 16 dyads, 11 patients who participated alone, and 1 caregiver who participated alone., Results: Patients and caregivers had high levels of palliative care knowledge and there was no difference in baseline knowledge. Palliative care receptivity was also high, with most participants stating that they would be "very likely" to consider palliative care for themselves or a loved one. However, based on the analysis of multiple-choice palliative care questions and interview transcripts, many participants lacked a nuanced understanding of palliative care and harbored many common misconceptions of the basic tenants. Five main themes emerged related to palliative care: (1) Participants have a general lack of awareness of it, (2) Participants associate it with hospice and death, (3) Participants view it as primarily emotional or psychological support, (4) Participants believe it is for patients without a strong support system, and (5) Participants believe it is for people who have "given up.", Conclusions: High educational attainment and baseline palliative care knowledge did not preclude the most common misperceptions related to palliative care. These study results indicate that patients need clearer counseling regarding the definition, goals, benefits, and availability of palliative care., Competing Interests: Declaration of Competing Interest The authors have no relevant conflicts of interest to disclose., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Objective: Investigators sought to determine how family caregivers' psychological and physical wellbeing influenced their perceptions of communication with hospice providers., Methods: Researchers conducted a secondary analysis of quantitative data generated during two multisite randomized clinical trials of supportive interventions for hospice family caregivers. Caregivers' (N = 525) self-reported anxious symptoms, depressive symptoms, physical quality of life, and perceptions of communication with hospice providers were analyzed via a series of linear models that included demographic and contextual controls., Results: Caregivers' anxious symptoms, depressive symptoms, and physical quality of life were largely unrelated to caregivers' perceptions of their communication with hospice providers when adjusted for demographic and contextual factors., Conclusions: Variation in caregivers' perceptions of their communication with hospice providers was not well explained by caregiver wellbeing. Additional research is needed to understand if and how caregivers' perceptions of communication with hospice providers are related to factors not included in this secondary analysis. Provider-related variables may be particularly important to consider.

Context: Caregivers managing symptoms of family members with cancer during home hospice care, often feel ill-prepared and need patient care coaching., Objectives: This study tested the efficacy of an automated mHealth platform that included caregiver coaching on patient symptom care and nurse notifications of poorly controlled symptoms. The primary outcome was caregiver perception of patients' overall symptom severity throughout hospice care and at weeks one, two, four, and eight. Secondary outcomes compared individual symptom severity., Methods: Caregivers (n = 298) were randomly assigned to the Symptom Care at Home (SCH) intervention (n = 144) or usual hospice care (UC) (n = 154). All caregivers placed daily calls to the automated system that assessed the presence and severity of 11 end-of-life patient physical and psychosocial symptoms. SCH caregivers received automated coaching on symptom care based on reported patient symptoms and their severity. Moderate-to-severe symptoms were also relayed to the hospice nurse., Results: The SCH intervention produced a mean overall symptom reduction benefit, over UC, of 4.89 severity points (95% CI 2.86-6.92) (P < 0.001), with a moderate effect size (d = 0.55). The SCH benefit also occurred at each timepoint (P < 0.001- 0.020). There was a 38% reduction in days reporting moderate-to-severe patient symptoms compared to UC (P < 0.001) with 10/11 symptoms significantly reduced in SCH compared to UC., Conclusion: Automated mHealth symptom reporting by caregivers, paired with tailored caregiver coaching on symptom management and nurse notifications, reduces cancer patients' physical and psychosocial symptoms during home hospice, providing a novel and efficient approach to improving end-of-life care., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: A growing number of persons living with dementia (PLwD) die at home with hospice care. However, there is limited information describing the needs of dying, community-dwelling persons with dementia and their family care partners (FCPs). Understanding the range of challenges faced by these FCPs is requisite to developing resources and refining support infrastructure. The current study identifies caregiving challenges unique to this population and strategies FCPs use to address those challenges., Methods: Semi-structured interviews were conducted with 40 current or recently bereaved FCPs of home hospice patients living with dementia, recruited from geriatrics clinics and a hospice agency in the New York metropolitan area. A thematic analysis guided by deductive and inductive approaches was used to code interview transcripts, identify broader conceptual categories, and search for themes., Results: Three themes were identified related to challenges faced by FCPs: (1) managing emotions and reacting to behaviors associated with advanced dementia; (2) lack of knowledge and adequate information related to dementia: disease progression and caregiving skills; and (3) maintaining FCP well-being: self-care and caregiver burden. Three themes were identified that describe strategies FCPs of PLwD employ to cope with end-of-life caregiving demands: (1) accepting help from professional caregivers and hospice support services; (2) getting knowledge and information about dementia; and (3) pragmatic approaches and acceptance of signs and symptoms of disease progression., Conclusions: FCPs of PLwD near the end of life (EOL) face caregiving challenges unique to dementia and dying. While FCPs are resourceful in identifying novel strategies for managing burden and caregiving responsibilities, our results point to gaps in the current support infrastructure for this population at the EOL. Findings also identify areas of need for care partners navigating end-of-life issues., (© 2023 The American Geriatrics Society.)

Importance: Expansive growth in the US hospice market has been driven almost exclusively by an increase in for-profit hospices. Prior research found that, in contrast to not-for-profit hospices, for-profit hospices focus on delivering care to patients in nursing homes, provide fewer nursing visits, and use less skilled staff. However, prior studies have not reported on the associations of these differences in care patterns with hospice care quality. Patient- and family-centeredness is a core element of hospice care quality that is measured through surveys of care experiences., Objective: To examine whether differences in profit status are associated with family caregivers' reports of hospice care experiences and assess factors that may be associated with observed differences in care experiences by profit status., Design, Setting, and Participants: Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from 653 208 caregiver respondents, reflecting care received from 3107 hospices between April 2017 and March 2019, were used for a cross-sectional examination of hospice care experiences by profit status. Data analysis was performed from January 2020 to November 2022., Main Outcomes and Measures: Outcomes were case-mix-adjusted and mode-adjusted top-box scores for 8 measures of hospice care experiences, including communication, timely care, symptom management, and emotional and religious support, as well as a summary score averaging across measures. Linear regression examined the association between profit status and hospice-level scores, adjusting for other organizational and structural hospice characteristics., Results: There were 906 not-for-profit and 1761 for-profit hospices with mean (SD) time in operation of 25.7 (7.8) years and 13.8 (8.0) years, respectively. Mean (SD) decedent age at death was 82.8 (2.3) years, similar for not-for-profit and for-profit hospices. The mean proportion of patients who were Black, Hispanic, and White was 4.9%, 0.9%, and 91.4% for not-for-profit hospices and 9.0%, 2.2%, and 85.4% for for-profit hospices, respectively. Family caregivers reported worse care experiences at for-profit hospices than at not-for-profit hospices for all measures. Significant differences in average hospice performance by profit status remained after adjusting for hospice characteristics. However, for-profit hospice performance varied, with 548 of 1761 (31.1%) for-profit hospices scoring 3 or more points below the national hospice average of overall performance and 386 of 1761 (21.9%) scoring 3 or more points above the average. In contrast, only 113 of 906 (12.5%) not-for-profit hospices scored 3 or more points below the average, and 305 of 906 (33.7%) scored 3 or more points above the average., Conclusions and Relevance: In this cross-sectional study of CAHPS Hospice Survey data, caregivers of patients receiving hospice care reported substantially worse care experiences in for-profit than in not-for-profit hospices; however, there was variation in reported experiences among both types of hospices. Public reporting of hospice quality is important.

Many individuals who present for hospice or palliative care might have experienced trauma during their lives, with some progressing to post-traumatic stress disorder. As these individuals face life-limiting illness, trauma might resurface. Consequently, physical and emotional health might suffer due to exacerbation of trauma-related symptoms, such as anxiety, irritability, or flashbacks. Providing trauma-informed care can help mitigate the effects of trauma for those facing life-limiting illness who might not be able to tolerate formal trauma treatment due to limited prognosis, fatigue, or lack of willingness to engage in treatment. The goal of this narrative review is to describe how aging and the end-of-life experience can lead to a re-engagement with previous traumatic experiences and, using case-based examples, provide recommendations for all members of the interprofessional hospice or palliative care team on how to elicit and respond to a history of trauma to minimize the potential negative impact of trauma at end-of-life.

Context: Family caregivers are essential to home hospice care for patients with advanced cancer, including reporting patient symptoms to hospice providers for follow-up. Hospice caregiving can also impact personal well-being., Objectives: 1) Assess home hospice caregivers' use of prospective, longitudinal audio diaries tracking patient and caregiver wellbeing; 2) Explore how patient-focused vs. caregiver-focused diary prompts perform; 3) Examine the prevalence of interactive voice response (IVR)-tracked symptoms and whether diaries revealed additional symptoms., Methods: Caregivers (N=102) were asked to report patient and caregiver symptoms via daily IVR calls and could record optional diaries responding to patient-focused or caregiver-focused prompts. Diaries were transcribed, classified by presence/absence of new information, and compared by prompt type. Content coding for IVR-tracked symptoms and inductive coding for additional symptoms were summarized by frequency counts and exemplary quotes., Results: Sixty-nine percent of participants (n=70) recorded diaries, and of these 72.86% (n=51) recorded ≥ one new-information diary. The median recording length was 53.00 seconds (SD=53.36). Participants responding to the caregiver-focused prompt (n=33) recorded more diaries than those in the patient-focused group (n=37; U=437.500, P=0.04. Most prevalent IVR-tracked symptoms were patient fatigue/weakness (26.54% of symptoms mentioned) and pain (23.08%), and caregiver anxiety/nervousness (47.51%) and fatigue (22.10%). The most prevalent additional symptoms were patient increasing sleepiness/sleeping (26.32%) and breathing difficulties (24.32%), and negative caregiver emotions (e.g., guilt, resentment, anger; 29.17%)., Conclusion: Prospective audio diaries offer a viable avenue for communicating symptoms and support needs. Future research will focus on leveraging longitudinal data for developing focused and tailored caregiver support interventions., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background : Metaphors are used by patients and professionals in the discourse of disease and can facilitate conversations about difficult topics. There is little information about metaphors present in patients' end-of-life dreams. Objective : Identify and interpret metaphors in end-of-life dreams, directly reported by patients in palliative care. Design : A qualitative study with a secondary analysis of transcribed face-to-face interviews with patients. Setting/Participants : The study includes 25 patients with end-stage disease receiving advanced end-of-life palliative care. In total, 41 interviews were performed. Results : Metaphors applicable to 3 themes were found: the journey toward death, the inevitability of death and death itself. The underlying meaning of the metaphors is often related to topics and emotions commonly relevant in dialogue with patients near death. Patients, however, often seemed unaware of the meaning of their dream metaphors. Conclusion : Metaphors pertaining to death are present in end-of-life dreams in patients with end-stage disease. We hypothesize that encouraging patients to talk about their dreams can expose metaphors that could facilitate end-of-life discussions.

Background: Most nurses and midwives are not prepared to provide bereavement care. The conflict between the need for high-quality care of bereaved parents and the lack of confidence in providing perinatal bereavement care among nursing staff is becoming increasingly prominent in China., Objective: To describe the current situation and identify influencing factors of perinatal bereavement care confidence (PBCC) among nurses and midwives in China., Methods: This descriptive and cross-sectional survey was conducted in 2021. A convenience sample was created by recruiting 571 nurses and midwives in 11 hospitals in Zhejiang Province. Collected the data of PBCC, secondary traumatic stress (STS) and emotional exhaustion (EE) in this study., Results: The average score of the PBCC was 67.83 ± 10.78. Average levels of STS were (23.32 ± 7.39) and EE (17.87 ± 8.62). PBCC was found to be most often associated with self-awareness, organisational support and training in perinatal bereavement care., Conclusions: Managers should take measures to improve PBCC and optimise perinatal bereavement care practice from the perspective of enhancing self-awareness of nursing staff, strengthening organisational support and providing training in perinatal bereavement care. The mental health of nursing professionals in the context of perinatal bereavement care needs to be emphasised. Nursing managers should make clear policies and establish a communication platform for nursing staff. Professional training should be conducted in the future., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Objective: This study explored how built space plays out in palliative care, focusing on spatial aspects that could support or hamper patients', relatives' and caregivers' well-being., Methods: This study was conducted in a freestanding small-scale hospice combining a residential part for eight guests with a day-care part for groups of about five persons. Observations were combined with semistructured, individual interviews with eight guests (sometimes accompanied by relatives) and three focus-group interviews with staff, volunteers and relatives. All interviews were audio-recorded and transcribed verbatim. Data were analysed based on the Qualitative Analysis Guide of Leuven., Results: The most important spatial aspects that impact on physical and social well-being in palliative care turned out to be the building scale and physical proximity. The small-scale setting counters the (often negative) association of palliative care with hospital environments. When the medical condition of the guest allows, it makes communal or outdoor spaces reachable, which enhances emotional and social well-being. In worse conditions, it still makes that care and nature are always nearby. The compactness of communal spaces intensifies social contacts., Conclusions: The building scale and physical proximity play out in the relationship between the building and its surroundings, between the residential and the day-care parts and among people within the building. Future research could investigate to what extent these spatial aspects are relevant in more conventional palliative care units or even in general hospital wards., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: The goals of this study were to (1) investigate bereavement care provision in practical settings, (2) examine the difference in care by nurses' affiliation (general hospital, hospice, or homecare setting), and (3) identify institutional and personal barriers associated with bereavement care provision., Methods: A cross-sectional survey was conducted using an online questionnaire. Nurses (n = 309) who had an experience of cancer patient care before death at least once in a previous year were included in the analysis. Kruskal-Wallis test and Mann-Whitney test were conducted to compare bereavement care provision by nurses' affiliation, and hierarchical logistic regression analysis was conducted to investigate the correlation between bereavement care provision and its associated factors., Results: Less than 30% of nurses reported providing bereavement care in structured settings such as home visits, counseling at a hospital, or phone calls. The differences in bereavement care provision by nurses' affiliation were significant, and the nurses working in a hospital were less likely to provide bereavement care than those working in a hospice or homecare setting. Working in a palliative care setting (OR = 2.35, 95%CI 1.09-5.07, p < 0.05) and greater confidence (OR = 2.18, 95%CI 1.07-4.42, p < 0.05) and knowledge regarding bereavement care (OR = 12.46, 95%CI 5.69-27.29, p < 0.001) were significantly associated factors of bereavement care provision., Conclusion: This study indicated a lack of bereavement care provision, especially in general hospitals. Improving nurses' confidence and knowledge may encourage them to provide bereavement care provision., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Introduction: The psychological outcomes for many parents who experience perinatal loss depend on nursing staff's ability to provide effective bereavement support. However, most nurses and midwives lack the ability to provide bereavement care and suffer from heavy emotional burden. The study aims to investigate the effectiveness of the perinatal bereavement care training programme on nurses and midwives to increase their perinatal bereavement care confidence (PBCC) and to reduce secondary traumatic stress and emotional exhaustion., Methods and Analysis: This study will follow a mixed methodology consisting of two stages. The first stage will adopt a pre/post repeated quasi-experimental design without a control group. The second stage will use a qualitative interview study. This study will be conducted in a tertiary maternity hospital in China in 2022-2023. Ethical approval was obtained from the institutional review board in January of 2020. Outcome measures will be assessed using the Chinese version of the PBCC, STS and the EE subscale of Chinese Burn-out Inventory at baseline, postintervention and at the 3-month follow-up. Participants will be interviewed to understand their perceptions of the training programme., Ethics and Dissemination: This research protocol was approved by the Ethics Committee of the Women's Hospital School of Medicine, Zhejiang University (IRB no. 20210091). The results will be disseminated through peer-reviewed journals and academic conferences., Trial Registration Number: ChiCTR2100049730., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Evaluating the quality of dying and death is essential to ensure high-quality end-of-life care. The Quality of Dying and Death (QODD) scale is the best-validated measure of the construct, but many items are not relevant to participants, particularly in low-resource settings. The aim of this multisite cross-sectional study is to develop and validate the QODD-Revised Global Version (QODD-RGV), to enhance ease of completion and relevance in higher-resource and lower-resource settings., Methods and Analysis: This study will be a two-arm, multisite evaluation of the cultural relevance, reliability and validity of the QODD-RGV across four participating North American hospices and a palliative care site in Malawi, Africa. Bereaved caregivers and healthcare providers of patients who died at a participating North American hospice and bereaved caregivers of patients who died of cancer at the Malawian palliative care site will complete the QODD-RGV and validation measures. Cognitive interviews with subsets of North American and Malawian caregivers will assess the perceived relevance of the scale items. Psychometric evaluations will include internal consistency and convergent and concurrent validity., Ethics and Dissemination: The North American arm received approval from the University Health Network Research Ethics Board (21-5143) and the University of North Carolina Institutional Review Board (21-1172). Ethics approval for the Malawi arm is being obtained from the University of North Carolina Institutional Review Board and the Malawian National Health Science Research Committee. Study findings will be disseminated through publication in peer-reviewed journals and conference presentations., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Context: Little is known about the hospice care experiences of those with Huntington's Disease (HD)., Objectives: Our objective is to provide the first national characterization of hospice care quality for patients with HD and their families., Methods: We used national Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data to examine caregiver-reported experiences of hospice care. We analyzed data from 550 caregivers of patients with HD and 1,098,819 caregivers of patients without HD who died January 2016-June 2019 while receiving hospice care from 3,845 hospices nationwide. Outcomes (on a 0-100 scale) were eight publicly-reported quality of care measures, and four individual survey items about receiving help for specific symptoms. Analyses were propensity-score weighted and adjusted for patient and caregiver characteristics., Results: Experiences of care among patients with HD were similar to or better than for patients without HD. Across all hospice and care settings, the only significant difference was for Providing Emotional, and Spiritual Support (90.9 [HD] vs. 88.2 [non-HD], a medium effect size, P < 0.01). However, patients with HD more often received care in settings with worse experiences for all patients; within the same hospice and same setting of care, measure scores were significantly higher for patients with HD compared to those without HD (2.3-4.6 points higher on a 0-100 scale) for all measures except Getting Hospice Care Training., Conclusion: Our findings highlight the benefits of hospice care for those with HD and their families and may be useful for patients with HD when making decisions regarding options for end-of-life care., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Many patients with a solid metastatic cancer are treated aggressively during their last month of life. Using data from a large prospective cohort study of patients with an advanced cancer, we aimed to assess the number and predictors of aggressive interventions during last month of life among patients with solid metastatic cancer and its association with bereaved caregivers' outcomes., Methods: We used data of 345 deceased patients from a prospective cohort study of 600 patients. We surveyed patients every 3 months until death for their physical, psychological and functional health, end-of-life care preference and palliative care use. We surveyed their bereaved caregivers 8 weeks after patients' death regarding their preparedness about patient's death, regret about patient's end-of-life care and mood over the last week. Patient data was merged with medical records to assess aggressive interventions received including hospital death and use of anti-cancer treatment, more than 14 days in hospital, more than one hospital admission, more than one emergency room visit and at least one intensive care unit admission, all within the last month of life., Results: 69% of patients received at least one aggressive intervention during last month of life. Patients hospitalized during the last 2-12 months of life, male patients, Buddhist or Taoist, and with breast or respiratory cancer received more aggressive interventions in last month of life. Patients with worse functional health prior to their last month of life received fewer aggressive interventions in last month of life. Bereaved caregivers of patients receiving more aggressive interventions reported feeling less prepared for patients' death., Conclusion: Findings suggest that intervening early in the sub-group of patients with history of hospitalization prior to their last month may reduce number of aggressive interventions during last month of life and ultimately positively influence caregivers' preparedness for death during the bereavement phase., Trial Registration: NCT02850640 ., (© 2022. The Author(s).)

Background: Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers' experiences of grief and bereavement. Objective: To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. Methods: Using Arksey and O'Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. Results: 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. Discussion: Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. Conclusions: Understanding the nuances of informal caregivers' experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.

Background: The decisional burden on caregivers in the end-of-life (EOL) care for patients with cardiovascular diseases (CVD) is unknown. We aimed to evaluate the frequency and circumstances of caregiver difficulties in decision-making during EOL care for CVD patients, its determinants, and associations with psychological distress in the bereaved caregivers., Methods: We conducted a cross-sectional survey using a questionnaire for bereaved caregivers of CVD patients who had died in 10 tertiary care centers. We assessed their overall and situation-specific decision-making difficulties during EOL care. The questionnaire also covered the attitudes of patients, caregivers, and attending physicians during EOL care and the respondents' depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire)., Results: We enrolled 266 bereaved caregivers [median age, 65 (57-72) years; 38.4% male] of CVD patients. Overall, 28.9% of them experienced difficulties in decision-making. The most difficult decision-making situations involved informing the patient of the prognosis (18.2%), life-prolonging treatment (17.9%), and discontinuation of hydration and artificial nutrition (15.6%). Difficulties were associated with patient and/or caregiver factors (poor understanding of disease status and the patient's wishes, caregiver's emotional inability), physician factors (poor understanding of the patient's and/or caregiver's values, inadequate support for decision-making), and both (insufficient communication, conflict of opinions and wishes). Decision-making difficulties were associated with subsequent depression (20.5% vs. 10.3%, p=0.029) and complicated grief (27.0% vs. 9.0%, p<0.001) among bereaved caregivers., Conclusions: Approximately 30% of bereaved caregivers experienced decisional burdens during EOL care of CVD patients. The caregiver's decisional burdens were associated with subsequent psychological distress., Competing Interests: Declaration of Competing Interest None., (Copyright © 2021. Published by Elsevier Ltd.)

Background: Hospice care is a multidisciplinary approach that focused on patients' quality of life, and nurses allocate more of their time with patients and patients' families than those nurses working in other disciplines. Nurses' knowledge of and attitudes toward hospice care can affect the quality of hospice care. At present, China's hospice care institutions are suffering from an obvious shortage of nursing staff. Since clinical nurses are the main force behind the future provision of hospice care, their knowledge of, attitudes and willingness to practice can greatly promoted the growth of hospice care, however, available data on clinical nurses' willingness to practice hospice care are limited., Methods: A cross-sectional descriptive study design was employed to collect data from 1833 nurses working in tertiary or secondary general hospitals in Guangxi, China. We examined nurses' demographic characteristics and scores on the Chinese version of the hospice care knowledge scale, the Chinese version of the Bradley Attitude Assessment Questionnaire, and a brief quiz concerning their willingness to practice hospice care in the future. Descriptive, single factor, multiple regression analyses and logistic regression analyses were used for data analysis., Results: Nurses displayed moderate mean scores for both knowledge of and attitudes, and only 505 (27.5%) nurses expressed their willingness to practice hospice care, 1329 (72.5%) of nurses sampled expressed their unwillingness or uncertainty. Multivariate regression analyses showed that education, professional qualification, monthly income, whether they had been trained in hospice care, and willingness to practice hospice care were the main influencing factors of knowledge; education, whether they lived with someone aged >60 years, and whether they had been trained in hospice care were main factors influencing attitudes. Additionally, logistic regression analyses showed that hospice care knowledge, whether they had been trained in hospice care, and whether they had clinical experience affected the nurses' willingness to practice hospice care., Conclusion: This study highlighted a knowledge gap and moderate attitudes toward hospice care among nurses, and most nurses did not prefer to practice hospice care. Having been trained in hospice care was the main common factor of nurses' knowledge of, attitudes toward, and willingness to practice hospice care in the future, indicating the necessity to provide nurses with more targeted hospice care training., Competing Interests: The authors have declared that no competing interests exist.

Background: Hospice nurses may devote more emotional labor during the empathy process with patients, and this empathy can be used as a form of psychological behavior of emotional labor in the hospice care model. The aim of this study was to analyze hospice nurses' empathy characteristics in the context of emotional labor theory, and explore the impact of empathy on patient care., Methods: We conducted semi-participant observations from three hospitals and multicenter in-depth interviews with n = 26 hospice nurses from eight cities. Interviews were transcribed, and directed content analysis was applied., Results: Two categories with four sub-categories were extracted from the data analysis. Category 1 described the "empathic labor" process which covers cognitive empathy (including empathic imagination, empathic consideration, and empathic perception) and affective empathy (including natural empathy, surface empathy, and deep empathy). The second category concerns the outcome of nurses' "empathic labor" which incorporates both positive and negative effects., Conclusions: The findings indicated that hospice nurses' empathy process should be understood as emotional labor. Nursing managers should pay more attention to raising the ability of deep empathy with hospice nurses, and explore more sufficient active empowerment strategies to alleviate the negative impact of empathy on nurses and to strengthen nurses' deep empathy with terminal ill patients., (© 2022. The Author(s).)

Competing Interests: Competing interests: none declared

Context: Navigating end-of-life is stressful and many caregivers feel unprepared for caregiving tasks. Being employed may further increase caregiver burden., Objectives: Study objectives were 1) to examine the relationships among caregiver burden (financial burden, daily schedule disruption, lack of family support) and mental health (depression and anxiety), and 2) explore if preparedness for caregiving mediates these relationships in employed hospice caregivers., Methods: This was a secondary analysis of baseline data from a prospective multi-site project of hospice family caregivers of cancer patients. Employed hospice caregivers (n = 166) completed items assessing burden, mental health, and preparedness for caregiving. Hierarchical linear regression and mediation analysis were conducted., Results: Caregivers were primarily White (n = 155, 93%) and female (n = 116, 70%), with a mean age of 55 (SD = 11.7). After controlling for demographic variables, financial burden was significantly related to anxiety (b =.16[.001, .32], P <.05), lack of family support was significantly related to depression (b = 1.27[.76, 1.79], P <.01), and daily schedule disruption was significantly related to both anxiety (b = 1.92[1.07, 2.77], P <.01), and depression (b =.70[.14, 1.26], P <.05) in regression analyses. In mediation analysis, financial burden, daily schedule disruption, and lack of family support were indirectly related to both depression and anxiety through preparedness for caregiving., Conclusion: To better support employed caregivers, hospice team members should be ready to address concerns about finances, daily schedule changes, and family support and screen for preparedness for caregiving. Developing strategies to help employed hospice caregivers feel more prepared may mitigate adverse mental health outcomes., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)