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Family caregivers of terminally ill cancer patients prepare for a patient's death. Nursing-care for preparedness is effective for their psychological health. This study aims to structuralize nursing-care for preparedness and extract related factors while presenting the implications for improved quality of care. Data from a cross-sectional survey of general ward and palliative care unit nurses in designated cancer care hospitals (n=561) was analyzed with exploratory factor analysis and multiple regression analyses. The results of the analysis, the structure was classified into "Nurse-centered support" and "Support through inter-professional work." Both supports were practiced significantly more frequently in palliative care units than general wards. Related factors in general wards were; communication skills, cooperation with doctors, the existence of certified nurse/certified nurse specialists as consultants, attitudes toward care of the dying, frequency of death conferences, and cooperation with specialist cancer counselors. Therefore, the results can help improve the quality of family care in palliative care, especially in general wards.

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The COVID-19 pandemic imposed changes upon the capacity of healthcare systems, with significant repercussions on healthcare provision, particularly at end-of-life. This study aims to analyze the concept map of death unpreparedness due to the COVID-19 pandemic, capturing the relationships among the attributes, antecedents, consequences, and empirical indicators. Walker and Avant's method was used to guide an analysis of this concept. A literature search was performed systematically, between May 2022 and August 2023, using the following electronic databases on the Elton Bryson Stephens Company (EBSCO) host platform: Medical Literature Analysis and Retrieval System Online (Medline), Psychological Information Database (PsycINFO), Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete, Cochrane Library, and Nursing and Allied Health Collection. Thirty-four articles were retrieved. The unexpected and unpredictable impositions associated with inexperience and unskillfulness in dealing with COVID-19 configured challenges for healthcare professionals, family/caregivers, and even the dying person. Nine key attributes emerged in three main domains: (1) Individual: (a) disease-related conditions, (b) separation distress, and (c) scarcity of death and grief literacy; (2) Relational: (a) Dying alone, (b) poor communication, and (c) existential issues; and (3) Contextual: (a) disrupted collective mourning and grieving, (b) disrupted compassionate care and, (c) pandemic social stigma. This study contributed a full definition of death unpreparedness in a global pandemic scenario such as COVID-19. In this sense, feeling unprepared or unready for death brought new challenges to the bioecological resources of those affected. It is essential to embrace strategies capable of providing emotional and spiritual support in the dying process and to respect patient wishes. The lessons learned from COVID-19 should be applied to events with a comparable impact to minimize their consequences.

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OBJECTIVE: Preparing family surrogates for patient death and end-of-life (EOL) decision making may reduce surrogate decisional conflict and regret. Preparedness for patient death involves cognitive and emotional preparedness. We assessed the associations of surrogates' death-preparedness states (that integrate both cognitive and emotional preparedness for patient death) with surrogates' decisional conflict and regret. METHODS: Associations of 173 surrogates' death-preparedness states (no, cognitive-only, emotional-only, and sufficient preparedness states) with decisional conflict (measured by the Decision Conflict Scale) and heightened decisional regret (Decision Regret Scale scores >25) were evaluated using hierarchical linear modeling and hierarchical generalized linear modeling, respectively, during a longitudinal observational study at a medical center over cancer patients' last 6 months. RESULTS: Surrogates reported high decisional conflict (mean [standard deviation] = 41.48 [6.05]), and 52.7% of assessments exceeded the threshold for heightened decisional regret. Surrogates in the cognitive-only preparedness state reported a significantly higher level of decisional conflict (ß = 3.010 [95% CI = 1.124, 4.896]) than those in the sufficient preparedness state. Surrogates in the no (adjusted odds ratio [AOR] [95% CI] = 0.293 [0.113, 0.733]) and emotional-only (AOR [95% CI] = 0.359 [0.149, 0.866]) preparedness states were less likely to suffer heightened decisional regret than those in the sufficient preparedness state. CONCLUSIONS: Surrogates' decisional conflict and heightened decisional regret are associated with their death-preparedness states. Improving emotional preparedness for the patient's death among surrogates in the cognitive-only preparedness state and meeting the specific needs of those in the no, emotional-only, and sufficient preparedness states are actionable high-quality EOL-care interventions that may lessen decisional conflict and decisional regret.

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BACKGROUND/OBJECTIVE: Preparing family caregivers, cognitively, emotionally, and behaviorally, for their relative's death is an actionable component of high-quality end-of-life care. We aimed to examine the never-before-examined associations of conjoint cognitive prognostic awareness and emotional preparedness for death with caregiving outcomes and end-of-life care received by cancer patients. DESIGN/SETTING/PARTICIPANTS/MAIN MEASURES: For this longitudinal study, associations of death-preparedness states (no-death-preparedness, cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) with subjective caregiving burden, depressive symptoms, and quality of life (QOL) and patients' end-of-life care (chemotherapy and/or immunotherapy, cardiopulmonary resuscitation, intensive care unit care, intubation, mechanical ventilation support, vasopressors, nasogastric tube feeding, and hospice care) were evaluated using multivariate hierarchical linear and logistic regression modeling, respectively, for 377 caregivers in cancer patients' last 6 months and 1 month, respectively. KEY RESULTS: Caregivers in the cognitive-death-preparedness-only state experienced a higher level of subjective caregiving burden than those in the sufficient-death-preparedness state. Caregivers in the no-death-preparedness and cognitive-death-preparedness-only states reported significantly more depressive symptoms and worse QOL than those in the sufficient-death-preparedness state. Cancer patients with caregivers in the sufficient-death-preparedness state were less likely to receive chemotherapy and/or immunotherapy, intubation, mechanical ventilation, and nasogastric tube feeding than patients with caregivers in other death-preparedness states. However, patients' receipt of hospice care was not associated with their caregivers' death-preparedness states. CONCLUSION: Family caregivers' death-preparedness states were associated with caregiving outcomes and their relative's end-of-life care. Cultivating caregivers' accurate prognostic awareness and improving their emotional preparedness for their relative's death may facilitate more favorable end-of-life-caregiving outcomes and may limit potentially nonbeneficial end-of-life care.

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BACKGROUND: Cancer is one of the most common causes of death. The period of time between receiving a terminal diagnosis of cancer and the death of a loved one has been operationalized as pre-loss grief and, more recently, as preparedness for death. Originally, grief before loss was thought to have positive effects on the bereavement outcome, but some studies have revealed contradictory findings. This systematic review investigates definitions and measurement tools of pre-loss grief and preparedness for death, as well as the associations of both constructs with caregiver characteristics, pre-loss psychological aspects and post-loss adjustment among caregivers of people living with terminal cancer. METHODS: PubMed/Medline, PsycINFO and Web of Science were searched for studies published up until October 2020. Quantitative empirical studies from peer reviewed journals were included if a measurement tool for pre-loss grief or preparedness for death was used and if they focused on adult caregivers of adult people with cancer in an end-of-life trajectory and were excluded when they were not written in English or were descriptive/qualitative studies. Quality assessment of all studies was performed. RESULTS: Most studies used convenience samples and had a mean number of 725 participants. Overall, 16,326 participants in 35 articles were included and narratively synthesized. High levels of pre-loss grief, as well as low levels of perceived preparedness for death, were associated with poor post-loss adjustment (e.g., prolonged grief, depressive symptoms, etc.). CONCLUSIONS: Caregivers with high levels of pre-loss grief and low levels of preparedness for the death of their loved one would benefit from targeted support for post-loss adjustment. Results are limited by an inconsistent operationalization of both constructs.

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CONTEXT: To identify caregivers' death-preparedness states by combining cognitive and emotional preparedness for their loved one's death as well as their evolution over cancer patients' last 6 months, which have never been explored. METHODS: Death-preparedness states and their evolution were examined by hidden Markov modeling among 393 caregivers of cancer patients. RESULTS: Four death-preparedness states were identified: no death preparedness, cognitive death preparedness only, emotional death preparedness only, and sufficient death preparedness. Caregivers in the no-death-preparedness state had neither accurate cognitive prognostic awareness (PA) nor adequate emotional preparedness for death. Caregivers in the sufficient-death-preparedness state reported accurate PA and adequate emotional preparedness for death. In the cognitive- and emotional-death-preparedness-only states, caregivers were accurately aware of the patient's prognosis and adequately emotionally prepared for his/her forthcoming death only, respectively. Prevalence of the sufficient-death-preparedness state fluctuated within a narrow range (40.8%-43.2%) over the patient's last six months. Proportions of caregivers decreased in the emotional-death-preparedness-only (19.5%-6.5%) and no-death-preparedness (21.0%-8.2%) states, whereas prevalence of the cognitive-death-preparedness-only state increased substantially (16.3%-44.4%) to become the most prevalent state as death approached. CONCLUSION: Caregivers of cancer patients heterogeneously experienced combined cognitive and emotional preparedness for death. About 40% of caregivers consistently had sufficient death preparedness over their loved one's dying process. Evaluating these different aspects of death preparedness could be an important approach in high-quality end-of-life care by not only cultivating caregivers' cognitive PA, but also facilitating their emotional preparedness for the patient's death, thus helping caregivers prepare well for their loved one's forthcoming death.

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Background: Cognitive prognostic awareness (PA) and emotional preparedness for a loved one's death are distinct but related phenomena. However, the distinction between these two concepts has not been studied in family caregivers. Objective: To examine whether these two concepts are distinct by comparing their evolution and predictors over cancer patients' last year. Methods: Agreement between emotional preparedness for death and cognitive PA was longitudinally evaluated for 309 family caregivers by percentages and kappa coefficients. Predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation. Results: Agreement between family caregivers' emotional preparedness for death and cognitive PA decreased slightly (54.73%-43.64%) from 181-365 to 1-30 days before the patient's death, with kappa values (95% confidence interval) from -0.060 (-0.123 to 0.003) to 0.050 (-0.074 to 0.174), indicating poor agreement. Participants were more likely to report adequate emotional preparedness for death if they had financial sufficiency, more contact/communication with the patient, lower caregiving burden, and stronger perceived social support. Family caregivers were more likely to have accurate PA if they were 56-65 years old, the patient's adult child, and had more contact/communication with the patient and greater subjective caregiving burden. Conclusions/Implications: Family caregivers' emotional preparedness for death and cognitive PA were distinct, as supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should facilitate family caregivers' accurate PA and cultivate their emotional preparedness for death by enhancing patient-family contact/communication and easing their caregiving burden to improve quality of end-of-life care.

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BACKGROUND/OBJECTIVE: Cognitive prognostic awareness (PA) and emotional preparedness for death are distinct but related concepts that have rarely been investigated conjointly and without considering the dynamic nature of death preparedness. To fill this gap, this secondary-analysis study identified distinct patterns/states of death preparedness and their changes within cancer patients' last 6 months. METHODS: Distinct death-preparedness states, determined by conjoint cognitive PA and emotional preparedness for death, as well as their changes between consecutive times were identified and estimated, respectively, by latent transition modeling with hidden Markov modeling among 383 cancer patients within their last 6 months. RESULTS: Four death-preparedness states (prevalence) were initially identified: no death preparedness (17.1%), cognitive death preparedness only (23.3%), emotional death preparedness only (39.9%), and sufficient death preparedness (19.7%). Patients in the no-death-preparedness state had neither accurate PA nor adequate emotional preparedness for death. The sufficient-death-preparedness state was characterized by both accurate PA and adequate emotional preparedness for death. In the cognitive- and emotional-death-preparedness-only states, patients were accurately aware of their prognosis and adequately emotionally prepared for their forthcoming death only, respectively. As death approached, state prevalence fluctuated within a narrow range for the no- and sufficient-death-preparedness states, whereas prevalence of cognitive- and emotional-death-preparedness-only states increased and decreased substantially, respectively. CONCLUSION: Cancer patients heterogeneously experienced conjoint cognitive PA and emotional preparedness for death, and prevalence of death-preparedness states changed substantially as death approached. Effective interventions are warranted to cultivate cognitive PA and facilitate emotional death-preparedness to improve end-of-life-care quality, thereby helping patients achieve a good death.

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CONTEXT: Many family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasize the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers' perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes. OBJECTIVES: The objective was to explore family caregivers' preparations for death. METHODS: A total of 16 family caregivers of people in receipt of palliative care participated in semi-structured, face-to-face interviews. Transcripts were coded and analyzed using grounded theory techniques. RESULTS: Analysis yielded two overarching themes: Here and Now centered on the caregivers' focus on the multidimensional and all-consuming nature of caregiving for someone who is near death. Negotiating the Here/After described the tension the caregivers faced in vacillating between focusing on the care during the illness trajectory (Here) and worries and plans for the future (After). CONCLUSION: This exploratory study is the first to focus solely on family caregivers' experiences of preparing for a death. The caregivers described the complexities of trying to prepare while feeling overwhelmed with demands of caregiving throughout an unpredictable illness trajectory. The caregivers in the present study were cognitively prepared, some were behaviorally prepared, but emotional preparedness was challenging. Services should not assume that all family caregivers are well-prepared for the death. Caregivers would likely benefit from the assessment and promotion of their death preparedness.

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