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Background: Purposeless physiological monitoring at the end-of-life is not recommended. However, studies on how families feel regarding the death of patients with terminal cancer without continuous electrocardiographic monitoring (CEM) are lacking., Objectives: To explore the impact on the quality of care and the feelings and psychological distress experienced by families when CEM is not used during the 24 hours preceding a patient's death., Methods: In this multicenter cross-sectional, self-report questionnaires were distributed to 1087 bereaved families at Japanese specialized palliative care units in 2018., Results: Out of 671 responses, 394 valid responses were analyzed. Families of nonmonitored patients (NM-group) accounted for 79.2%, while those with bedside electrocardiogram monitoring (MB-group) and remote nurse station monitoring (MC-group) comprised 11.9% and 8.9%, respectively. In the NM-group, 85.5% expressed satisfaction without CEM, which was more than 10% lower than other groups. While 14% in the NM-group desired patient monitoring, families who received adequate explanations about CEM had lower proportions compared to the MB-group ( P = .021). Univariate analyses showed no significant differences in evaluations of the quality of care and families' psychological distress (mean scores of Overall Care Satisfaction, Care Evaluation Scale, Good Death Inventory, Brief Grief Questionnaires) across all groups., Conclusion: While the majority of NM-group were satisfied with their patient's care without CEM, the proportion of dissatisfied families was higher than in other groups. Although not using CEM is not a major hindrance to end-of-life care for patients with terminal cancer, providing sufficient explanations may be important for satisfactory 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: The place of death of cancer patients is an important aspect of end-of-life care. However, little research has been conducted regarding factors that may influence the preferred and actual place of death in cancer patients and whether the patients die at their preferred place of death. In this study, we aimed to investigate the preferred and actual place of death for palliative cancer patients, and factors influencing these variables. Methods: Patients diagnosed with cancer and admitted to a palliative care team across three Swedish cities between 2019 and 2022 were asked for participation. Participants completed a questionnaire capturing sociodemographic data and preferred place of death. Further data regarding age, sex, and cancer type were collated at inclusion, and the actual place of death recorded for those deceased by 5-May-2023. Results: The study included 242 patients. A majority (79%) wanted to die at home which was the actual death location for 76% of the patients. When the place-of-death decision was made by the patient alone, 75% chose home, compared to 96% when decided jointly with relatives-a statistically significant variation (p = 0.0037). For the patients who wanted to die at home, 80% actually died at home, with insignificant disparities among subgroups. Conclusions: Most palliative cancer patients in this Swedish cohort preferred and achieved death at home. Involving relatives in decision-making may influence the preferred place of death, however larger studies are needed to comprehensively assess factors affecting the preferred and actual place of death in different subgroups of patients., 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: In the U.S., assisted living (AL) is increasingly a site of death, and anxiety about dying has been identified in long-term care residents and their caregivers. Communication about death and dying is associated with better quality of life and care at end of life (EOL)., Objective: To understand communication behaviors used by AL residents and their informal caregivers (i.e., family members or friends) related to death and dying, and address communication needs or opportunities applicable to EOL care in AL., Design: A thematic analysis of in-depth interviews and fieldnotes from a subsample of data from a 5-year NIA-funded study., Setting/subjects: Participants included 15 resident-caregiver dyads from three diverse AL communities in Atlanta, Georgia in the U.S., Measurements: Interview transcripts were coded for communication behavior. Concordances and discordances within dyads were examined., Results: We identified a typology of four dyadic communication behaviors: Talking (i.e., both partners were talking with each other about death), Blocking (i.e., one partner wanted to talk about death but the other did not), Avoiding (i.e., each partner perceived that the other did not want to communicate about death), and Unable (i.e., dyads could not communicate about death because of interpersonal barriers)., Conclusions: Older residents in AL often want to talk about death but are blocked from doing so by an informal caregiver. Caregivers and AL residents may benefit from training in death communication. Recommendations for improving advance care planning and promoting better EOL communication includes timing these conversations before the opportunity is lost., 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.

Hospice is touted as an exemplary model for end-of-life care. However, there is little generalizable evidence estimating benefits of hospice at the national level. Using a national population-based probability sample of U.S. adults with weights applied (data collected Spring/Summer 2015), we conducted six logistic regression models to evaluate linkages between hospice involvement and end-of-life outcomes (pain, home death, presence of family, access to life-prolonging care, respect for spiritual/religious beliefs, financial burden) from N = 235 informal caregivers of decedents prior to death. Respondents were M = 55 years old (SD = 17), 55% female, 77% White, 91% non-Hispanic, and 71% had cared for a hospice recipient. In fully adjusted analyses, hospice users had better reported outcomes observed in two models: (a.) presence of family/friends at death (OR = 2.82, SE = .48, P < .05), and (b.) respect for spiritual/religious beliefs (OR = 9.52, SE = .73, P < .01). Hospice utilization was not statistically significant ( P > .05) in all other adjusted models. Although more research is needed, findings support claims that hospice remains a high quality option for end-of-life care in the U.S., 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: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving., Aim: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving., Method: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners (n = 16) . Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes., Results: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress . Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management ; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth., Conclusions: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support., 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.

Pediatric hospice is a new terminology in current medical literature. Implementation of pediatric hospice care in oncology setting is a vast but subspecialized field of research and practice. However, it is accompanied by substantial uncertainties, shortages and unexplored sections. The lack of globally established definitions, principles, and guidelines in this field has adversely impacted the quality of end-of-life experiences for children with hospice needs worldwide. To address this gap, we conducted a comprehensive review of scientific literature, extracting and compiling the available but sparse data on pediatric oncology hospice from the PubMed database. Our systematic approach led to development of a well-organized structure introducing the foundational elements, highlighting complications, and uncovering hidden gaps in this critical area. This structured framework comprises nine major categories including general ideology, population specifications, role of parents and family, psychosocial issues, financial complications, service locations, involved specialties, regulations, and quality improvement. This platform can serve as a valuable resource in establishing a scientifically reliable foundation for future experiments and practices in pediatric oncology hospice., 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.

Clinician-healers bear witness to suffering and accompany patients and families through the liminal spaces of an illness experience. Bearing witness to a patient's suffering is a form of attunement toward the ill or hospitalized person. Non-action, or wu wei , becomes illustrative of the empathy that develops as clinicians bear witness to the suffering of patients and families. This empathic response highlights the clinician's moral obligation to accompany their patients. Accompaniment is a form of "co-action" which orients the clinician to a mutual relationship with patients and families. Co-action incites new meaning-making within the liminal spaces and holds the potential to change the clinician's identity as practitioner and healer., Competing Interests: Declaration of Conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: It should be noted that one author, BSC, is an unpaid member of the Editorial Board of the American Journal of Hospice and Palliative Medicine.

Introduction: The hospice-in-place program at Vanderbilt University Medical Center (VUMC) is available to patients and families who elect for hospice benefits and are too unstable to be transported for hospice care. The goal of this study was to assess the satisfaction of family members of patients who died while hospitalized at VUMC and received hospice-in-place compared to the families of patients who did not receive hospice care. Methods: Next-of-kin satisfaction was measured through the administration of qualitative interviews and quantitative questionnaires. Semi-structured interviews were audio-recorded, and transcripts were analyzed using an iterative inductive-deductive approach to develop a conceptual framework. Participants were also asked to respond to a 10-question satisfaction questionnaire. Results: Forty participants were enrolled: 20 next-of-kin of patients who received hospice-in-place and 20 next-of-kin of patients who passed without hospice. Factors influencing satisfaction were organized into a conceptual framework with three categories: individual-level factors, systems-level factors, and modifying factors. For the questionnaires, the hospice-in-place group had a mean satisfaction score of 4.54 (0.76) out of five, while the non-hospice group had a mean score of 4.14 (1.00). A comparison of the two groups' responses did not show a statistically significant difference ( P = 0.06). Discussion: Quantitative findings of this study showed improved satisfaction but were unable to show a significant difference in satisfaction with hospice-in-place compared to traditional care. Questionnaire results suggest that both types of care yield high satisfaction scores and are successfully supporting patients and families. The conceptual framework also adds to the understanding of end-of-life experiences at VUMC., 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: Current literature indicates low uptake of advance care planning (ACP) among the Chinese-speaking community in Australia. To increase the uptake of ACP among the Chinese-speaking community, a better understanding of their attitudes and perceptions on end-of-life (EOL) matters, and ACP is required., Objective: This study aimed to identify significant events and social and cultural factors that influence participants' values and characterize the attitudes and perceptions towards ACP among older Chinese-speaking Australians., Methods: A qualitative study explored participants' experiences through semi-structured one-to-one interviews. The interviews were conducted in Mandarin, Cantonese or English, then translated and transcribed into English. The transcripts were coded and analysed thematically., Results: Twenty participants were recruited (14 female, six male). Participants typically reported a preference to make health-related decisions autonomously. Their perspectives were grounded in past experiences of illnesses and EOL decision-making of loved ones, personal values, and perceived needs. Family dynamics and intimacy of relationships appeared to influence the role and responsibility of family members in EOL decision-making and ACP. Most participants perceived the need to engage in ACP only when encountering significant health changes or higher care needs., Conclusion: Healthcare professionals should initiate ACP discussion using culturally appropriate communication with consideration of personal values, past experiences and family dynamics. Efforts should be invested in raising public awareness of ACP within the Chinese-Australian community., 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 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.

Background: Despite documented benefits of Advance Care Planning (ACP), it is still under-utilized in the U.S. Our study aimed to examine whether experiencing a loved one's death is associated with one's own ACP behavior among adults in the U.S. and the potential moderating effect of age. Method: Using a nationwide cross-sectional survey design with probability sampling weights, our study included 1006 adults in the U.S. who participated in and completed the Survey on Aging and End-of-Life Medical Care. Three binary logistic regression models were established to investigate the relationship between death exposure and different aspects of ACP (i.e., informal conversations with family members and doctors and formal advance directives completion). The moderation analysis was subsequently conducted to examine moderating effects of age. Results: The exposure to a loved one's death was significantly associated with higher odds of having conversations with family about end-of-life medical care preferences among the 3 indicators of ACP ( OR = 2.03, P < .001). Age significantly moderated the association between death exposure and ACP conversations with doctors ( OR = .98, P = .017). The facilitation effect of death exposure on informal ACP engagement in discussing end-of-life medical wishes with doctors is stronger among younger adults than older adults. Conclusions: Exploring an individual's previous experience with a loved one's death might be an effective way to broach the concept of ACP among adults of all ages. This strategy may be particularly useful in facilitating discussions of end-of-life medical wishes with doctors among younger adults than older adults., 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.

Effective doctor-patient-family communication is an integral and sensitive part of health care, assessing its quality is essential to identify aspects needing disclosure and, if necessary, improvement. Cross-sectional study aimed to analyze the sources of evidence of validity and the number of participants needed to reliably apply the Quality of Communication Questionnaire (QoC) through Generalizability Theory (GT). The mean age of the 150 patients hospitalized at the end of life was 50.5 (SD = 13.8) years, the mean hospital length of stay was 7.5 (SD = 10.2) days, 56.9% were male. Regarding the 105 patients' family members of patients whose mean length of hospital stay was 9.5 (SD = 9.1) days, their mean age was 42.2 (SD = 14.7) years, 69.5% were female. GT was used to quantify the minimum number of questionnaires needed, with the aim of reaching a reliable estimate of QoC with G-coefficients. To reach a reliability of .90, there is a need for 25 for the Eρ 2 questionnaires and 35 for the Φ. The exact estimation identified the minimum number of questionnaires required for the evaluation of physicians by patients. To obtain a reliability of .90, there is a need for 30 and 40 questionnaires for the G-coefficients. A practical and fast application makes it possible to use QoC in its entirety or alone to evaluate general communication or communication about palliative care. Furthermore, based on these results, it was possible to identify which aspects were effective or ineffective in these contexts., 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.

End-of-life discussions are essential for patients with advanced cancer, but there is little evidence about whether these discussions affect general ward patients and family outcomes. We investigated the status of end-of-life discussions and associated factors and their effects on patients' quality of death and their families' mental health. Participants in this retrospective cross-sectional observational study were 119 bereaved family members. Data were collected through a survey that included questions on the timing of end-of-life discussions, quality of palliative care, quality of patient death, and depression and grief felt by the families. Approximately 64% of the bereaved family members participated in end-of-life discussions between the patient and the attending physician, and 55% of these discussions took place within a month before death. End-of-life discussions were associated with the patients' prognostic perception as "incurable, though there is hope for a cure" and "patients' experience with end-of-life discussions with family before cancer." There was a small decrease in depression and grief for families of patients who had end-of-life discussions. Those who did not have end-of-life discussions reported lower quality of end-of-life care.

In this personal reflection, as a Family Medicine resident at an Academic Center in Northeast Florida, as well as being a chronic illness patient myself, I explore the notion of dying alone and away from family. Although COVID-19 has changed the practice of medicine in many ways, prior to that, and before the instillation of hospital no-visitor policies and stay at home orders, I experienced a case of a patient dying alone in the hospital. These chronicles that case and the impact it had on me afterward in regard to my own family and how I hope the future of medicine can address this.

The COVID-19 pandemic created a global health emergency that has changed the practice of medicine and has shown the need for palliative care as an essential element of hospital care. In our small South Florida hospital, a palliative care service was created to support the frontline caregivers. Thanks to the hospital support, our team was formed rapidly. It consisted of 3 advanced care practitioners, a pulmonary physician with palliative care experience and the cooperation of community resources such as hospice and religious support. We were able to support patients and their families facilitating communication as visitation was not allowed. We also addressed goals of care, providing comfort care transition when appropriate, and facilitating allocation of scarce resources to patients who were most likely to benefit from them. With this article we describe a simplified framework to replicate the creation of a Palliative Care Team for other hospitals that are experiencing this need.

Purpose: Visitor restrictions during the COVID-19 pandemic limit in-person family meetings for hospitalized patients. We aimed to evaluate the quantity of family meetings by telephone, video and in-person during the COVID-19 pandemic by manual chart review. Secondary outcomes included rate of change in patient goals of care between video and in-person meetings, the timing of family meetings, and variability in meetings by race and ethnicity., Methods: A retrospective cohort study evaluated patients admitted to the intensive care unit at an urban academic hospital between March and June 2020. Patients lacking decision-making capacity and receiving a referral for a video meeting were included in this study., Results: Most patients meeting inclusion criteria (N = 61/481, 13%) had COVID-19 pneumonia (n = 57/61, 93%). A total of 650 documented family meetings occurred. Few occurred in-person (n = 70/650, 11%) or discussed goals of care (n = 233/650, 36%). For meetings discussing goals of care, changes in patient goals of care occurred more often for in-person meetings rather than by video (36% vs. 11%, p = 0.0006). The average time to the first goals of care family meeting was 11.4 days from admission. More documented telephone meetings per admission were observed for White (10.5, SD 9.5) and Black/African-American (7.1, SD 6.6) patients compared to Hispanic or Latino patients (4.9, SD 4.9) (p = 0.02)., Conclusions: During this period of strict visitor restrictions, few family meetings occurred in-person. Statistically significant fewer changes in patient goals of care occurred following video meetings compared to in-person meetings, providing support limiting in-person meetings may affect patient care.

Telemedicine technology has become essential to healthcare delivery in the COVID-19 era, but concerns remain regarding whether the intimacy and communication that is central to high-quality palliative care will be compromised by the use of this technology. We employed a business model approach to identify the need for system innovation in palliative care, and a quality improvement approach to structure the project. Products from this project included a standard operating procedure for safe use of tablet computers for inpatient palliative care consultations and family visitations; tablet procurement with installation of video telehealth software; and training and education for clinical staff and other stakeholders. We describe a case illustrating the successful use of palliative care telehealth in the care of a COVID-19-positive patient at the end of life. Successful use of video telehealth for palliative care involved overcoming inertia to the development of telehealth infrastructure and learning clinical video telehealth skills; and engaging front-line care staff and family members who were open to a trial of telehealth for communication. Information gleaned from family about the patient as a person helped bedside staff to tailor care toward aspects meaningful to the patient and family and informed best practices to incorporate intimacy into future palliative video consultations and family visit.

In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for patients' loved ones has proven to be an even more important aspect of the care we have provided during the COVID epidemic. In this article, we describe the multicomponenet interdisciplinary interventions we have implemented to enhance our ability to create a therapeutic alliance with family members and facilitate the provision of goal concordant care to patients with COVID during this extremely difficult time.

Background: It is of great importance to understand how patients and their close relatives experience the pros and cons of advanced home care so as to further develop this quickly growing choice of care., Objective: The aim of this study was to explore the experiences of receiving advanced home care among patients affected by life-threatening illness and their close relatives., Design: The study was an interview study conducted with patients in their homes. Some patient interviews were conducted together with a close relative participating., Setting/participants: Patients registered in advanced home care in 2017 were offered the opportunity to participate in the study. The selection criteria were that the patient was within grade 3 of the Eastern Cooperative Oncology Group's Performance Status, older than 18 years, able to orient to time and place, and not newly registered., Analysis: The interviews were recorded and transcribed verbatim and analyzed with qualitative content analysis., Results: A total of 11 interviews were conducted: 8 with patients and 1 or 2 close relatives together; and 3 with the patient alone. It resulted in 3 main categories: create a safe environment, see the person, and better to manage care at home., Conclusion: The results of this study show that patients and close relatives perceived that advanced home care was a safe and secure form of caring during advanced as well as end-of-life care.

Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States., Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care., Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice., Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

Context: The aging of the world's population increasingly calls on older people to care for their cancer relatives. This scenario confronts clinicians involved with end-of-life care with an imposing challenge: elderly family caregivers could have a different perception of the burdens associated with assistance compared to their younger counterparts. Palliativists need to know what limits and resources of these new age categories of caregivers could be for a global management of dying patients with cancer and their family., Objectives: To evaluate the caregiver burden in family caregivers supporting dying patients with cancer in order to compare the differences between 2 different caregivers age groups (younger vs elderly population)., Methods: This is a cross-sectional study. A total of 174 family caregivers of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into 2 subgroups aged <65 (younger group) and ≥65 years old (elderly group)., Results: Compared with younger caregivers, the elderly group reported significantly higher scores in the CBI-developmental subscale ( P = .009) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. No further differences were found between the 2 age groups in the other CBI scores (time-dependent, physical, social, emotional, and overall score)., Conclusion: Elderly caregivers are at high risk for experiencing developmental burden. This finding could prompt mental health professionals to pay greater attention to the value that assistance to the family member can have on their personal story and on that of the family or couple.

Background: Preserving terminally ill patients' dignity and well-being through dignified and holistic care has become the overarching goal in palliative care services. However, dignity is a multifaceted concept with a wide range of interpretations under different cultural contexts., Aim: The aim of this review is to understand the variations in subjective interpretations and constitutions of dignity in palliative or end-of-life care via an integrative worldview., Design: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline and used SPIDER tool to screen for appropriate and relevant articles for analysis., Data Sources: Four major databases were searched including CINAHL, ERIC, Medline, and PsycARTICLES between 2009 and 2018. Forty-eight qualitative studies that examined dignity from the perspectives of patients, family caregivers, and health-care professionals were selected for full text data analysis using thematic synthesis., Results: Analysis of the various concepts of dignity revealed 18 themes that were further categorized into 7 conceptual categories: (1) self-determination, (2) existential liberty, (3) relational connectedness, (4) caregiving revitalization, (5) mindful humanity, (6) patient-family care, and (7) sustainable culture. These 7 categories span across individual, familial, and institutional dimensions, forming a new Dynamic Reciprocity of Dignity model., Conclusions: The Dynamic Reciprocity of Dignity model highlights the importance of adopting a systemic lens to address dignity-related needs and concerns at the end of life, while providing insights on how compassionate care and self-compassion can serve as the foundation of dignified care, which in turn serve as a buffer against patients' existential suffering as well as caregivers' burnout and fatigue. Recommendations for clinical practice and future research directions are discussed.

While end-of-life (EOL) care has been a relatively common option for patients with terminal cancer, the utilization of EOL care in Alzheimer disease and other dementias has become available more recently. By the time end-stage dementia is present, the clinicians and caregivers become faced with multiple clinical issues-their inability to provide subjective complaints of pain and discomfort, behavioral symptoms, delirium, food refusal, and so on. In addition to providing quality EOL care to the patients, clinicians need to work with their families in an open and empathic manner, assuring that their loved ones will receive supportive measures to keep them comfortable.

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer., Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward., Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms., Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.

Background: Clinicians need to deliver prognostic information to surrogates of nondecisional, critically ill patients so that surrogates can make informed medical decisions that reflect the patient's values. Our objective was to implement a new approach for communicating with surrogates of patients with chronic critical illness., Methods: Surrogate decision makers of patients who were difficult to liberate from mechanical ventilation were prospectively enrolled. Surrogates met with different members of the intensive care unit treatment team for sequential 15-minute appointments to receive patient-specific assessments and education on chronic critical illness. The feasibility and acceptability of this approach were determined. A 24-question comprehension instrument was developed to assess a participant's understanding that a family member was displaying features of chronic critical illness. Each question was scored from 1 to 5, with larger scores indicating greater comprehension., Results: Over a 15-week period, educational sessions for 9 mechanically ventilated patients were conducted. On average, 2 surrogates per patient (range: 1-4) and 6 members of the interdisciplinary team (range: 4-6) were at each meeting. Surrogates and clinicians had very positive impressions of the communication intervention. The average preintervention comprehension score was 85 of 120 (standard deviation [SD]: 8, range: 71-101). The postintervention comprehension score was greater by 5 points on average (SD: 9, range: -11 to +20 points, P = .04)., Conclusions: Surrogates of critically ill patients approved of this novel communication approach and had a greater understanding of the patient's medical condition after the intervention.

Study Design: Retrospective Analysis of a Quality Improvement Program., Purpose: To describe the development, implementation, and outcomes of an inpatient rehabilitation-based Short Stay Family Training (SSFT) program for patients with life-limiting conditions., Background: Patients with terminal illnesses often have functional limitations that prohibit discharge home after hospitalization, but their condition limits their ability to participate in rehabilitation in an inpatient setting., Methods and Measures: After a needs assessment, an interdisciplinary team developed an SSFT program to empower patients, caregivers, and family members by giving them the tools to be independent in caring for a patient with a life-limiting condition. Patients qualifying for the program were tracked in terms of acute care physical therapy and occupational therapy discharge recommendations, diagnosis, inpatient rehabilitation unit length of stay (LoS), caregiver involvement, and discharge location. Data were retrospectively analyzed from patients over the first 16 months., Results: Since program implementation, 30 patients and their family members participated in the program. Overall, these patients experienced decreased LoS, increased discharge to home, and increased palliative care involvement in the plan of care., Conclusion: Short Stay Family Training is a viable alternative to traditional inpatient rehabilitation to allow patients with life-limiting conditions to discharge home safely with caregiver support.

Background: Good communication with the family is a clinical imperative for high quality end-of-life (EOL) care in intensive care unit (ICU). Many interventions aim to improve EOL communication, and the choice of an outcome instrument has important implications for evaluating interventions. The purpose of this project is to search and review available instruments' psychometric properties and determine which best measures family-clinician communication in the ICU., Method: A stepwise method was used by searching 2 databases (PsycInfo and Web of Science) to identify instruments and articles that provide information about scale psychometric properties., Instruments: Three instruments were identified, including Family Inpatient Communication Survey, Family Perception of Physician-Family Caregiver Communication, and Quality of Communication (QOC)., Results: Reliability estimates were high (≥ 0.79) in all 3 instruments. The QOC's convergent validity estimates exceed its discriminant validity values, and the QOC is an intervention-sensitive measure used to examine families' treatment response in randomized control trials., Conclusion: Quality of Communication is the most suitable instrument to measure family's perceptions of EOL communication in the ICU. Quality of Communication scores provide a deeper understanding of family-clinician communication and data about how to improve EOL care in ICUs.

Background: Spinocerebellar ataxia type 1 (SCA1) is an autosomal dominant progressive neurodegenerative disease. Few studies have been conducted regarding advance care planning in this population., Objective: This study explores advance care planning preferences of patients with SCA1 and their association with disease progression and quality of life., Methods: The study examined 12 Thai patients with SCA1 from 2 families living in Thailand. The advance care plan followed a Gold Standards Framework. The 12 patients were interviewed and recorded in video. The research team evaluated neurocognitive functions as measured by the following tests; Scale for the Assessment and Rating of Ataxia (SARA), Berg Balance Score, Mini-Mental Status Examination, and Digit Span and Category Fluency. The quality of life was measured by a Short-Form Health Survey-36 (SF-36)., Results: Seven of 12 patients with SCA1 rated communication ability as most important for their quality of life. Patients identified becoming a burden on their family members and ventilator dependence as the most undesirable situations. Half of the patients preferred a hospital as their last place of care. Comparing patients prefer hospital to home has significantly high median SARA (23 vs 11.5; P = .03) and low SF-36 (41.4 vs 72.4; P = .02)., Conclusions: Those patients preferring a hospital for end-of-life care exhibited more physical disability and lower quality of life than those who preferred home care. Making assisted living health-care services in the home more readily available and affordable may alleviate concerns of patients facing more severe physical challenges.

Objectives: Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers., Aim: To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker., Design: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data., Participants: Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member's pacemaker., Results: Four storylines that described, gave meaning to, and contextualized the caregivers' experiences were identified: "I am done. I am not doing it anymore"; "Whatever you decide, I'll support you"; "It is really difficult to watch, but you want to be there"; and "I will not have part of this." Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process., Conclusions: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians' knowledge regarding caregivers' experiences facing deactivation of a pacemaker, before and after the patient's death.

Effective team communication is necessary for the provision of high-quality health care. Yet, recent graduates from diverse health-care disciplines report inadequate training in communication skills and end-of-life care. This study explored the impact of a withdrawal of life-sustaining measures interprofessional simulation on team communication skills of students representing medicine, nursing, and social work. The 3-phase simulation required teams to communicate with the patient, family, and one another in the care of a seriously ill patient at the end of life. Team communication in the filmed simulations was analyzed via the Gap-Kalamazoo Communication Checklist. Results revealed fair to good communication across the 9 communication domains. Overall team communication was strongest in "shares information" and lowest in "understands the patient's and family's perspective" domains. Field notes revealed 5 primary themes- Team Dynamics , Awkwardness , Empathy is Everything , Build a Relationship , and Communicating Knowledge When You Have It -in the course of the data analysis. Logistical challenges encountered in simulation development and implementation are presented, along with proposed solutions that were effective for this study. This simulation provided an opportunity for interprofessional health-care provider students to learn team communication skills within an end-of-life care context.

Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS., Objective: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers., Methods: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS., Results: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease., Conclusion: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.

Objectives: Family members of children admitted to intensive care units (ICUs) suffer from severe stress, which sometimes results in long-term psychological problems. We aimed to identify associations between demographic and psychosocial variables at early stages of a child's admission to the ICU and depression and anxiety in family members at approximately 3 months after admission. We also explored predictive models for depression and anxiety at 3 months after admission., Methods: This study is a secondary analysis of data from a previous clinical trial of palliative care for family members in ICUs, in which 380 family members of 220 children reported demographic and psychosocial status at approximately 1 week after ICU admission (baseline), at discharge from the ICUs, and at 3 months after the child's admission to the ICU. Clinical data were extracted from the children's medical records. We used linear regression models and stepwise linear regression for the analyses., Results: After controlling for significant confounders of gender (female) and child mortality, worse psychological status at baseline, represented by reported depression, anxiety, and acute stress symptoms, was associated with more severe depression and anxiety at 3 months. Also, a better family relationship at baseline was associated with lower depression and anxiety at 3 months., Conclusion: We suggest a need to screen family members of children admitted to the ICU with validated scales and intervening with those at high risk of depression and anxiety., Clinical Trials: Registry number NCT02144779 on ClinicalTrials.gov . https://clinicaltrials.gov/ct2/show/NCT02144779?term=NCT02144779&rank=1 .

Objective: To identify common themes and topics that patients nearing the end of life want to discuss when sharing their life stories., Methods: Twenty audio-recorded transcripts of open-ended interviews of patients cared for by a palliative care team when approaching the end of life were analyzed using a qualitative analysis., Results: Qualitative analysis revealed that the primary contextual factors that patients drew upon to generate his or her life story are life events (including upbringing, job, education, travel, trauma, hardships, special events, military history, and hobbies), family and support system, and values and beliefs. Participants used their current medical condition, which included mortality, morbidity, and prognosis, to frame their life story., Conclusion: Patients facing serious illness incorporate four major themes when reflecting upon their lives to create their personal life story: life events, family and support system, values and beliefs, and current medical condition.

To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.

Research Question: How does the process of engagement and integration of sources of information outside patient-physician interaction affect how individuals with cancer interpret their treatment experience and prognosis?, Background: Studies of patient-physician communication of prognosis in oncology highlight areas where misunderstanding occurs: understanding consequences of treatment, likelihood of treatment success, probability of cure, status/progression of illness, and prognosis. Theories proposing mechanisms that underlie this discrepancy cannot account for all instances of misunderstanding, including when complete and direct physician disclosure occurs. Prior research focused on patient-physician communication event(s) and immediate antecedents and consequences. However, less is known about what happens to information once it has been communicated and how a patient's process to interpret the meaning of their experience affects their understanding of it. Our study explores this question by examining patient communication with sources of information other than treating physicians., Methodology: We conducted 10 semi-structured qualitative interviews with individuals diagnosed with 4 types of cancer at different stages. The interviews were analyzed using inductive qualitative analysis., Results: Participants in our sample consulted a variety of additional sources to give context and understanding to their communicated prognosis. These were important contributors to how they understood their prognosis and incorporated that understanding. They included family, friends/acquaintances, cancer survivors, support/survivor groups, secondary health-care staff, and relevant informational materials. Different motivations for seeking out these sources were also expressed. Participants expressed a link between their understanding of their prognosis and the variety of outside sources they enlisted for input and support.

Objectives: Recent evidence suggests that music therapy, a holistic method of care, potentially is beneficial for symptom management. This quality improvement project aimed to evaluate the effect of music therapy on symptom management and coping skills of patients receiving palliative care and to measure patient satisfaction with the therapy. A secondary aim was to evaluate staff perception of patient outcomes of music therapy services., Methods: Palliative care clinicians attended a 30-minute education session on music therapy before the project was initiated. Study participants were patients and their families who were cared for by the inpatient palliative care consulting service at Mayo Clinic (Rochester, Minnesota) from June 1 through December 31, 2016. Patients were eligible if they required ongoing management of pain and anxiety or needed adaptive coping strategies. Patients and families were asked to complete a survey after each music therapy session. Staff were asked to complete a survey after completion of the project., Results: Music therapy was provided to 57 patients and 53 family members. Patient surveys indicated a decrease in anxiety and pain. All patients reported that music therapy facilitated stress relief, relaxation, pain relief, spiritual support, emotional support, and a general feeling of wellness. All participants recommended music therapy services for others. Palliative care clinicians reported that music therapy added value as a holistic service., Conclusions: In this quality improvement project, music therapy positively affected multiple domains of well-being for patients receiving palliative care.

In the act of caring for and helping people in the end-of-life process, the professional who provides care and assistance must know how to maintain a relationship of closeness, empathy, and compassion for the pain and suffering of the person who is going to die. The objective was to understand, elaborate on, and characterize the key elements of end-of-life care of patients from a caregiver's perspective through a qualitative phenomenological multicenter study. Participants were caregivers who had lost a family member at least 2 months but less than 2 years in the past. The techniques used were 5 discussion groups and 41 in-depth interviews, which included a total of 81 participants. To analyze the information, a protocol developed by Giorgi was followed. Two dimensions or units of meaning, with subdimensions, emerged: (1) Technical competence, with the subdimensions "Control of symptoms" and "Continuity of care," and (2) Compassion, with the subdimensions "Effective/affective communication," "Attitudes of kindness and closeness toward the patient and the family," and "Generosity and personalized flexibility of care." Assistance at the end of life requires the proper preparation of professionals who care for these patients, in addition to a compassionate attitude on the part of professionals and the people accompanying the dying person, that fosters a more humanized and dignified treatment in the dying process.

Objectives:: A sizable minority of those who lose a loved one in hospice will experience symptoms of bereavement-related mental health disorders. Though hospices offer services to bereaved informal caregivers (family members or friends) of patients, little is known about services offered or interest in them. Therefore, we sought to assess services offered by hospice staff and interest expressed by bereaved informal caregivers with symptoms of depression, anxiety, or complicated grief (CG)., Methods:: De-identified electronic bereavement care charts of 3561 informal caregivers who lost someone in a large urban metropolitan hospice from October 1, 2015, to June 30, 2016, were reviewed., Results:: Of bereaved informal caregivers in the sample, 9.4% (n = 333) were positive for symptoms of depression, anxiety, or CG. The symptom-positive family members/friends were more likely than other family members/friends to be offered mailings, one-to-one counseling, telephone calls, and reference material. However, interest in most services by symptom-positive caregivers was low, with only 6% interested in one-to-one counseling and 7% interested in outside referral., Discussion:: The findings suggest that hospices offer a range of services to family members or friends with symptoms of anxiety, depression, and CG, but that there can be a gap between what is offered and in the interest levels of the bereaved. Engagement with symptomatic family members and friends could be enhanced in future work.

Purpose:: The purpose of this study was to clarify the concept of death preparedness for family caregivers in dementia. Conceptualization was required to support the assessment, promotion, and operationalization (ie, measurement) of death preparedness through palliative care interventions such as advance care planning., Methods:: Rodgers evolutionary method of concept analysis was selected to guide this study because of the dynamic nature of death preparedness influenced by context, setting, and time. A comprehensive literature search was conducted. Authors performed constant comparative analysis to identify and interpret surrogate/related concepts, attributes, antecedents, and consequences of death preparedness., Results:: Most importantly attributes included (1) knowing and recognizing the symptoms of decline in dementia and what dying looks like; (2) understanding emotions and grief responses; (3) accessing and appraising supports needed to manage and care for dying; (4) organizing affairs and completing tasks in advance; (5) accepting that losses are inevitable and imminent; (6) reflecting on caregiving and finding meaning, "a silver-lining"; and (7) closing, reconciling, and renewing relationship bonds and completing the family member's life., Discussion:: This study contributed a full definition of death preparedness in dementia. Findings aligned with/expanded upon Hebert et al Theoretical Framework of Preparedness for End-of-Life. The use of problem- and emotion-based coping strategies by caregivers with support from health-care providers to promote feelings of death preparedness (including self-efficacy and control) and minimize uncertainty was the implication of this study. Development of a holistic preparedness instrument is underway.

Background:: Little is known about the place of death of patients with cancer in Eastern Mediterranean countries including Egypt, where palliative care is underdeveloped. Identifying the preferred place of death (PPoD) is important for the development of appropriate palliative care models in these countries., Objectives:: To know the PPoD of Egyptian patients with incurable cancer and their family caregivers (FCGs) and to determine the factors that may impact their preferences., Methods:: An observational cross-sectional study that included 301 dyads of patients with incurable cancer and one of their FCGs. A questionnaire was designed to collect data about the characteristics of patients and FCGs as well as their preferences., Results:: The majority of dyads (272/301, 90.4%) answered the PPoD question. Home was the PPoD in 93% of patients and 90.1% of FCGs ( P = .218). The congruence between patients' and FCGs' PPoD was 92.7% (κ = 0.526). In multivariate analysis, poorer performance status (Eastern Cooperative Oncology Group 3 or 4) and full employment of FCGs associated significantly with patients' preference to die in hospital (odds ratio [OR] = 3.015 [95% confidence interval [CI]: 1.004-9.054], P = .049 and OR = 4.402 [95% CI: 1.561-12.417], P = .005, respectively), while poorer performance status and nonreferral to the palliative medicine unit were associated with FCGs' preference of hospital death (OR = 2.705 [95% CI: 1.105-6.626], P = .029 and OR = 2.537 [95% CI: 1.082-5.948], P = .032, respectively)., Conclusions:: The results of the current study suggest that home is the PPoD for the vast majority of Egyptian patients with incurable cancer and their FCGs. Palliative care interventions that promote home death of patients with incurable cancer are needed in Egypt.

Objective: To identify factors that hinder or facilitate the palliative care consultation team's (PCCT) successful collaboration with other providers from the perspectives of both PCCT and nonpalliative specialists., Methods: Qualitative study, including semistructured interviews with PCCT and nonpalliative care providers from various specialties at 4 Midwestern hospitals. Interviews were audio-recorded and transcribed into written text documents for thematic analysis. Palliative care consultation team (n = 19) and nonpalliative care providers (n = 29) were interviewed at their respective hospital sites or via telephone. Palliative care consultation team providers included physicians, nurse practitioners, registered nurses, social workers, and one chaplain. Specialists included critical care physicians, surgeons, hospitalists, nephrologists, oncologists, and cardiologists., Results: Six themes emerged reflecting barriers to and facilitators of successful collaboration between the PCCT and other providers. Primary barriers included attitudes about palliative care, lack of knowledge about the role of the PCCT, and patient and family resistance. Facilitators included marketing of the palliative care service and education about the expertise of the PCCT., Conclusion: In order to engage in more effective collaboration with other specialty providers, the PCCT may consider strategies including structured educational interventions, increased visibility in the hospital, and active marketing of the utility of palliative care across disciplines.

Objective:: There are no instruments evaluating the processes and outcomes of dying care right before and after death. Therefore, we developed and examined the validity and reliability of 2 scales for evaluating dying care processes and outcomes before and after death., Methods:: A cross-sectional, anonymous questionnaire was administered to bereaved family members of patients with cancer who had died in 5 facilities. We evaluated the Dying Care Process Scale for Bereaved Family Members (DPS-B) and the Dying Care Outcome Scale for Bereaved Family Members (DOS-B) with 345 bereaved family members., Results:: A factor analysis revealed that DPS-B and DOS-B each consisted of 4 subscales. For the DPS-B, they were "symptom management," "respect for the patient's dignity before and after death," "explanation to the family," and "family care." For the DOS-B, they were "peaceful dying process for the patient," "being respected as a person before and after death," "good relationship between the patient and family," and "peaceful dying process for the family." Both DPS-B and DOS-B had sufficient convergent and discriminative validity, sufficient internal consistency (DPS-B: α = 0.91 and subscales' αs = 0.78-0.91; DOS-B: α = 0.91 and subscales' αs = 0.78-0.94), and sufficient test-retest reliability (DPS-B: intraclass correlation coefficient [ICC] of total score = 0.79 and subscales = 0.55-0.79; DOS-B: ICC of total score = 0.88 and subscales = 0.70-0.88)., Significance of Results:: Both DPS-B and DOS-B are valid and reliable scales for evaluating the dying care processes and outcomes before and after death from the bereaved family members' perspectives.

Withdrawal of life-sustaining therapy at the end of life is a complex phenomenon. Intensive care nurses and physicians are faced with caring for patients and supporting families, as these difficult decisions are made. The purpose of this study was to explore and describe the experience of critical care nurses and physicians participating in the process of withdrawal of life-sustaining therapy. A hermeneutic phenomenological approach was used to guide this qualitative investigation. Interviews were conducted with critical care nurses and physicians from 2 medical centers. An inductive approach to data analysis was used to understand similarities between the nurses and the physicians' experiences. Methodological rigor was established, and data saturation was achieved. The main categories that were inductively derived from the data analysis included from novice to expert, ensuring ethical care, uncertainty to certainty, facilitating the process, and preparing and supporting families. The categories aided in understanding the experiences of nurses and physicians, as they worked individually and together to see patients and families through the entire illness experience, withdrawal of life-sustaining therapy decision-making process and dying process. Understanding the perspectives of health-care providers involved in the withdrawal of life-sustaining therapy process will help other health-care providers who are striving to provide quality care to the dying and to their families.

Background:: Patients with dementia may receive suboptimal end-of-life care in hospital settings reflecting broader debate around the palliative status of dementia syndromes., Objectives:: To synthesize literature describing the quality of end-of-life care for patients with dementia dying in hospital., Methods:: An integrative review assessed the quality of 26 articles concerning medical, nursing, and psychosocial care of patients with dementia dying in hospital settings., Results:: Literature reflects a growing awareness of the need to consider a palliative approach to end-of-life care for patients with dementia in hospital. Patients with dementia are less likely to receive aggressive care at the end of life, but provision of palliative care interventions is inconsistent. Health-care professionals highlighted the need for greater education around identification and management of problematic symptoms at the end of life. Engagement of family caregivers is essential in optimizing end-of-life care, and further research is required to ascertain their experiences around decision-making., Conclusion:: Although patients with dementia appear to receive less aggressive treatment at the end of life, the provision of palliative care and symptom management may be inadequate.

Objectives:: Although the experiences of family caregivers have received attention, little research has specifically explored caregivers' confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home., Aim:: We aimed to elicit the views, feelings, and experiences of primary caregivers who provide unpaid care to dying family members in the home setting to better understand what contributes to their confidence during end-of-life care., Design:: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyze the data., Participants:: Sixteen bereaved caregivers (14 individuals and 1 brother/sister dyad) from the midwestern United States who received support from 1 hospice participated in the study., Results:: Four storylines running longitudinally through the interviews were identified as shaping, giving meaning to, and contextualizing caregivers' confidence: values/relationships, stories of terminal illness, needs, and support. Caregivers' confidence is shaped by the terminal illness of the person for whom they care and caregivers' values and relationships. It is also influenced by their needs and the sources and strength of support they receive., Conclusions:: This research developed understanding about family provision of end-of-life care at home. Better comprehension of caregivers' experiences can help professional hospice and palliative care staff to understand what aids caregivers to be more confident.

Background: There are no published studies on notification of death by a next of kin to the treating medical staff., Aim: To explore the content and circumstances of death notifications by next of kin to the treating medical staff in a palliative home care unit., Design: A cross-sectional study that combines qualitative and quantitative analysis., Setting: Assessment of 153 telephone death notifications by a next of kin to the treating medical staff., Results: The qualitative analysis of death notifications revealed 2 themes: direct and indirect death notifications. In direct notifications, death was portrayed by the notifier in direct and specific words such as death, the patient has died, or the patient is not alive. Indirect notifications included nonspecific or general descriptions of death such as breath cessation, it ended, or it's over or finished. Direct notifications tended to include specific requests from the medical staff and expressed acceptance and closure, while indirect notifications tended to include more general requests and expressed more panic, distress, or doubt in death. Although spouses were more likely to serve as the primary caregiver, the children or other family members were more likely to notify the treating staff. In 30% of the notifications, there was an element of doubt or uncertainty. Emotions were expressed in 20% of the notifications. Cessation of breathing was the most common physical sign mentioned., Conclusion: Medical staff members who receive notifications of death should expect and be prepared for the expression of varied emotions and doubts as an integral part of the notification.

African Americans are perceived to be least likely of all racial and ethnic groups to prepare for the end of life. However, verbal plans for the end of life are of particular importance to this population and may help understand why they are less likely to possess a formal end-of-life care planning document. The purpose of this study was to determine the number of formal and/or informal end-of-life care plans that existed among a convenience sample of African American older adults with dementia. For this descriptive study, data were collected from African American family caregivers (N = 65) of older adults with dementia. Descriptive statistics were conducted. Caregivers in this sample reported high rates of formal and/or informal end-of-life plans for their care recipients. Agency forms (power of attorney, health-care surrogate, or guardianship forms) had been obtained by 74% of the care recipients, while 63% of them possessed a formal end-of-life care planning document. All combined, 88% of the caregivers possessed at least 1 document or verbal information concerning end-of-life care for their care recipient or at least there was an assigned surrogate. Although limited, these findings reflect more end-of-life planning in this population than previous studies reported and could improve the quality of end-of-life outcomes in this population by giving health-care providers increased understanding of African American end-of-life planning preferences. This may, in turn, help the providers to inform and educate these care recipients and their family caregivers.

Background: Individuals confronting a terminal illness can experience intense psychological distress. Previous research has shown that hope can enhance one's ability to acknowledge, accept, and fight a terminal illness. Patients can continue to have hope or be hopeful, even in the face of a terminal illness. Can participation in a creative writing practice improve the expression of hope in a hospice setting?, Methods: In this program evaluation, each expressed hope placed on the "Hope Tree" was independently coded by all research team members utilizing inductive content analysis. Overall themes were derived using a constant comparative approach and arranged into overarching themes based on consensus., Results: Eight major themes emerged from the data: "Peace," "Dreams," "Total well-being," "Acknowledgment of loss," "Relationships," "Hospice care," "Spirituality," and "Dichotomies.", Conclusion: The Hope Tree is a creative art project that can be used within a hospice environment to promote hope among family members and the health-care professionals who care for patients.

Background: Health-care providers (HCPs) find facilitating end-of-life (EOL) care discussions challenging, especially with patients whose ethnicities differ from their own. Currently, there is little guidance on how to initiate and facilitate such discussions with older Chinese Americans (≥55 years) and their families., Objective: To explore communication strategies for HCPs to initiate EOL care discussions with older Chinese Americans in the San Francisco Bay Area., Design: This qualitative (focused) ethnographic study included field observations and individual semistructured interviews with 14 community-dwelling older Chinese Americans who lived independently at home, 9 adult children, and 7 HCPs. Responses were analyzed using open coding, memos, and comparison across participants., Results: The study participants emphasized the importance of assessing readiness for early EOL care discussions. All recommended using indirect communication approaches to determine older Chinese Americans' readiness. Indirect communication can be culturally targeted and applied at both system-wide (ie, health-care system) and individual (ie, HCP) levels. To institutionalize the practice, health-care facilities should implement EOL care discussion inquiries as part of routine during check-in or intake questionnaires. In individual practice, using depersonalized communication strategies to initiate the discussion was recommended to determine older Chinese Americans' readiness., Conclusion: Assessing readiness should be an essential and necessary action for early EOL care discussions. Culturally targeted assessment of older Chinese Americans includes using indirect communication approaches to initiate an EOL care discussion to determine their readiness. In addition to health-care system integration, providers should implement and evaluate proposed EOL discussion initiation prompts with their older Chinese American patients.