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Patients can prepare for end of life and their forthcoming death to enhance the quality of dying.We aimed to longitudinally evaluate the never-before-examined associations of cancer patients' death-preparedness states by conjoint cognitive prognostic awareness and emotional preparedness for death with psychological distress, quality of life (QOL), and end-of-life care received.In this cohort study, we simultaneously evaluated associations of four previously identified death-preparedness states (no-death-preparedness, cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) with anxiety symptoms, depressive symptoms, and QOL over 383 cancer patients' last six months and end-of-life care received in the last month using multivariate hierarchical linear modeling and logistic regression modeling, respectively. Minimal clinically important differences (MCIDs) have been established for anxiety- (1.3-1.8) and depressive- (1.5-1.7) symptom subscales (0-21 Likert scales).Patients in the no-death-preparedness and cognitive-death-preparedness-only states reported increases in anxiety symptoms and depressive symptoms that exceed the MCIDs, and a decline in QOL from those in the sufficient-death-preparedness state. Patients in the emotional-death-preparedness-only state were more (OR [95% CI]=2.38 [1.14, 4.97]) and less (OR [95% CI]=0.38 [0.15, 0.94]) likely to receive chemotherapy/immunotherapy and hospice care, respectively, than those in the sufficient-death-preparedness state. Death-preparedness states were not associated with life-sustaining treatments received in the last month.Conjoint cognitive and emotional preparedness for death is associated with cancer patients' lower psychological distress, better QOL, reduced anti-cancer therapy, and increased hospice-care utilization. Facilitating accurate prognostic awareness and emotional preparedness for death is justified when consistent with patient circumstances and preferences.

Background/Objective: Evidence linking process-based, high-quality end-of-life (EOL) care indicators to family satisfaction with EOL care in intensive care units (ICUs) remains limited. This study aimed to fill this gap. Design/Setting/Subjects/Measures/Statistical Analysis: For this exploratory, prospective, longitudinal observational study, 278 family members were consecutively recruited from medical ICUs at two medical centers in Taiwan. Family satisfaction with ICU care was surveyed in the first month after patient death using the Family Satisfaction in the ICU questionnaire (FS-ICU). Associations between FS-ICU scores and process-based quality indicators collected over the patient's ICU stay were examined using generalized estimating equations. Results: Documentation of process-based indicators of high-quality EOL care was generally associated with higher scores for both the FS-ICU Care and FS-ICU Decision-Making domains. Higher family satisfaction with ICU care was significantly associated with physician-family prognostic communication (β [95% confidence interval (CI)]: 3.558 [2.963 to 4.154]), a do-not-resuscitate (DNR) order in place at death (23.095 [17.410 to 28.779]), and death without cardiopulmonary resuscitation (CPR) (13.325 [11.685 to 14.965]). Family members' satisfaction with decision making was positively associated with documentation of social worker involvement (4.767 [0.663 to 8.872]), a DNR order issued (10.499 [0.223 to 20.776]), and withdrawal of life-sustaining treatments (LSTs) before death (2.252 [1.834 to 2.670]). Conclusions: EOL care processes are associated with family satisfaction with EOL care in ICUs. Bereaved family members' satisfaction with EOL care in ICUs may be improved by promoting physician-family prognostic communication and psychosocial support, facilitating a DNR order and death without CPR, and withdrawing LSTs for patients dying in ICUs.

To determine whether distinctive prolonged-grief-disorder- (PGD) and depressive-symptom states emerge among family caregivers of cancer patients over their first 2 years of bereavement. This may extend cross-sectional evidence that PGD and major depressive disorder (MDD) symptoms can co-occur/occur independently and validate their construct distinctiveness.In this secondary-analysis study, PGD symptoms and depressive symptoms were measured over 666 caregivers using 11 grief symptom items of the Prolonged Grief-13 scale and 16 items of the Center for Epidemiologic Studies-Depression scale, respectively. Distinct PGD/depressive-symptom states were identified by latent transition analysis with dichotomous indicators (presence/absence) of PGD or depressive symptoms.Four distinct PGD/depressive-symptom states emerged. The resilient and subthreshold depression-dominant states showed low and moderate probabilities of the presence of majority of depressive symptoms, respectively, with no PGD symptoms having a greater than moderate probability of presence. The depression-dominant state was marked by a high probability of the presence for 9 of 16 depressive symptoms, with moderate probabilities for almost all PGD symptoms. The PGD-depression comorbid state was characterized by a high probability of presence of all PGD symptoms and depressive symptoms, except for moderate probabilities of presence of two depressive symptoms.Our longitudinal identification of a predominantly depressive state but absence of a PGD-dominant state provides further evidence that PGD and MDD are related but distinct constructs that can occur independently or concurrently as the PGD-depression comorbid state. When PGD is suspected, bereaved individuals should be assessed for the potential comorbidity of MDD.

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.

Background Cancer patients may develop prognostic awareness (PA) heterogeneously, but predictors of PA‐transition patterns have never been studied. We aimed to identify transition patterns of PA and their associated factors during cancer patients’ last 6 months. Methods For this secondary‐analysis study, PA was assessed among 334 cancer patients when they were first diagnosed as terminally ill and monthly till they died. PA was categorized into four states: (a) unknown and not wanting to know; (b) unknown but wanting to know; (c) inaccurate awareness; and (d) accurate awareness. The first and last PA states estimated by hidden Markov modeling were examined to identify their change patterns. Factors associated with distinct PA‐transition patterns were determined by multinomial logistic regressions focused on modifiable time‐varying variables assessed in the wave before the last PA assessment to ensure a clear time sequence for associating with PA‐transition patterns. Results Four PA‐transition patterns were identified: maintaining accurate PA (56.3%), gaining accurate PA (20.4%), heterogeneous PA (7.8%), and still avoiding PA (15.6%). Reported physician‐prognostic disclosure increased the likelihood of belonging to the maintaining‐accurate‐PA group than to other groups. Greater symptom distress predisposed patients to be in the still‐avoiding‐PA than the heterogeneous PA group. Patients with higher functional dependence and more anxiety/depressive symptoms were more and less likely to be in the heterogeneous PA group and in the still‐avoiding‐PA group, respectively, than in the maintaining‐ and gaining‐accurate PA groups. Conclusions Cancer patients heterogeneously experienced PA‐transition patterns over their last 6 months. Physicians’ prognostic disclosure, and patients’ symptom distress, functional dependence, and anxiety/depressive symptoms, all modifiable by high‐quality end‐of‐life care, were associated with distinct PA‐transition patterns., Patients with cancer may not develop accurate prognostic awareness (PA) at the same rate or to the same degree and factors associated with PA‐transition patterns are unknown. Here, we identified PA‐transition patterns and their associated factors during the last six months of life for patients with advanced cancer and found that they developed PA in different ways. Four PA‐transition patterns were identified: maintaining accurate PA, gaining accurate PA, heterogeneous PA, and still avoiding PA. Prognostic disclosure by physicians, patient symptom distress, functional dependence, and anxiety/depression symptoms are major factors associated with PA‐transition patterns and can be acted on during high‐quality end‐of‐life care.

ObjectiveThis cohort study identified patterns/classes of surrogates’ assessment of their relative’s quality of dying and death (QODD) and to evaluate their associations with family satisfaction with intensive care unit (ICU) care.MethodsWe identified QODD classes through latent class analysis of the frequency component of the QODD questionnaire and examined their differences in summary questions on the QODD and scores of the Family Satisfaction in the ICU questionnaire among 309 bereaved surrogates of ICU decedents.ResultsFour distinct classes (prevalence) were identified: high (41.3%), moderate (20.1%), poor-to-uncertain (21.7%) and worst (16.9%) QODD classes. Characteristics differentiate these QODD classes including physical symptom control, emotional preparedness for death, and amount of life-sustaining treatments (LSTs) received. Patients in the high QODD class had optimal physical symptom control, moderate-to-sufficient emotional preparedness for death and few LSTs received. Patients in the moderate QODD class had adequate physical symptom control, moderate-to-sufficient emotional preparedness for death and the least LSTs received. Patients in the poor-to-uncertain QODD class had inadequate physical symptom control, insufficient-uncertain emotional preparedness for death and some LSTs received. Patients in the worst QODD class had poorest physical symptom control, insufficient-to-moderate emotional preparedness for death and substantial LSTs received. Bereaved surrogates in the worst QODD class scored significantly lower in evaluations of the patient’s overall QODD, and satisfaction with ICU care and decision-making process than those in the other classes.ConclusionsThe identified distinct QODD classes offer potential actionable direction for improving quality of end-of-life ICU care.

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.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 scores25) 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.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 (β = 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.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.

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.

Family satisfaction with end-of-life care in the intensive care unit constitutes an important outcome for evaluating end-of-life care quality. Research on this topic focuses on linking end-of-life care processes to family-surrogate satisfaction with the patient's end-of-life care but has seldom examined patient- and family-surrogate-based factors. We aimed to comprehensively and simultaneously examine factors facilitating or deterring family satisfaction with end-of-life care in the intensive care unit from patient- and family-surrogate perspectives.For this secondary-analysis study, 278 Taiwanese family surrogates were surveyed one-month post-patient death using the Family Satisfaction in the Intensive Care Unit questionnaire (FS-ICU), which measures care and decision-making. Associations between family satisfaction with end-of-life care and patient and family characteristics, patient disease severity, and length of intensive care stay were examined by multivariate, multilevel linear regression models.Female family surrogates were more satisfied with patients' end-of-life care than male family surrogates when patients had a higher APACHE II but a lower SOFA score. Adult-child surrogates had lower FS-ICU Care scores than other family surrogates. Higher satisfaction with ICU decision-making was associated with patients' higher APACHE II but lower SOFA scores, longer stay and family socio-demographics, including being unmarried, educational attainment above junior high school and reported financial sufficiency to make ends meet.Patient disease severity and family-surrogate characteristics are significantly associated with surrogates' satisfaction with patients' end-of-life care in the intensive care unit. Specific interventions should be tailored to the needs of high-risk family surrogates to increase their satisfaction with this care.

Depression and prolonged grief disorder (PGD) are related but distinct constructs with different risk factors and treatments. We aimed to determine commonality and differences in factors predicting membership in depressive- and PGD-symptom trajectories to highlight uniqueness of each construct to guide further care and treatments.We previously identified four shared trajectories for depressive- and PGD-symptom trajectories (endurance, transient-reaction, resilience, and prolonged-symptomatic) with unique trajectories of chronically distressed and potential recurrence for depressive and PGD symptoms, respectively. This secondary-analysis study examined pre- and postloss factors predisposing 849 bereaved caregivers of cancer patients to membership in depressive- and PGD-symptom trajectories from the integrative framework of predictors for bereavement outcomes by a multinomial logistic regression model (the "endurance" trajectory as reference).Common factors predicted membership in depressive- and PGD-symptom trajectories: higher postloss personal coping capacity protected from more distressing symptom trajectories, spousal relationship with the patient predicted membership in the transient-reaction trajectory, while financial hardship and preloss depressive symptoms predicted for the resilience trajectory. Yet, accurate prognostic awareness protected caregivers from more distressing depressive-symptom trajectories only. Higher preloss subjective caregiving burden protected caregivers from the four more distressing depressive-symptom trajectories but only from the transient-reaction and resilience trajectories for PGD symptoms.Commonality and differences in factors predicting membership in PGD- and depressive-symptom trajectories confirm that PGD and depression are related but distinct constructs. Interventions should be tailored to caregivers' unique risk profile for depressive- and PGD-symptom trajectories to reduce the likelihood of suffering both or individual symptom trajectories.

Cancer patients heterogeneously develop prognostic awareness, and end-of-life cancer care has become increasingly aggressive to the detriment of patients and healthcare sustainability. We aimed to explore the never-before-examined associations of prognostic-awareness-transition patterns with end-of-life care.Prognostic awareness was categorized into four states: (1) unknown and not wanting to know; (2) unknown but wanting to know; (3) inaccurate awareness; and (4) accurate awareness. We examined associations of our previously identified three prognostic-awareness-transition patterns during 334 cancer patients' last 6 months (maintaining accurate prognostic awareness, gaining accurate prognostic awareness, and maintaining inaccurate/unknown prognostic awareness) and end-of-life care (cardiopulmonary resuscitation, intensive care unit care, mechanical ventilation, chemotherapy/immunotherapy, and hospice care) in cancer patients' last month by multivariate logistic regressions.Cancer patients in the maintaining-accurate-prognostic-awareness and gaining-accurate-prognostic-awareness groups had significantly lower odds of cardiopulmonary resuscitation (adjusted odds ratio [95% confidence interval]: 0.22 [0.06-0.78]; and 0.10 [0.01-0.97], respectively) but higher odds of hospice care (3.44 [1.64-7.24]; and 3.28 [1.32-8.13], respectively) in the last month than those in the maintaining inaccurate/unknown prognostic awareness. The maintaining-accurate-prognostic-awareness group had marginally lower odds of chemotherapy or immunotherapy received than the gaining-accurate-prognostic-awareness group (0.58 [0.31-1.10], p = .096]). No differences in intensive care unit care and mechanical ventilation among cancer patients in different prognostic-awareness-transition patterns were observed.End-of-life care received in cancer patients' last month was associated with the three distinct prognostic-awareness-transition patterns. Cancer patients' accurate prognostic awareness should be facilitated earlier to reduce their risk of receiving aggressive end-of-life care, especially for avoiding chemotherapy/immunotherapy close to death.ClinicalTrials.gov:NCT01912846.

Background Family caregivers carry heavy end-of-life (EOL) caregiving burdens, with their physical and psychological well-being threatened from caregiving to bereavement. However, caregiving burden has rarely been examined as a risk factor for bereavement adjustment to disentangle the wear-and-tear vs relief models of bereavement. Objective/Methods Preloss and postloss variables associated with severe depressive symptoms and quality of life (QOL) for 201 terminally ill cancer patients' caregivers over their first 2 years of bereavement were simultaneously evaluated using multivariate hierarchical linear modeling. Severe depressive symptoms (Center for Epidemiological Studies Depression Scale score > 16) and QOL (physical and mental component summaries of the Medical Outcomes Study Short-Form Health Survey) were measured 1, 3, 6, 13, 18, and 24 months postloss. Results Caregivers' likelihood of severe depressive symptoms and mental health-related QOL improved significantly from the second year and throughout the first 2 years of bereavement, respectively, whereas physical health-related QOL remained steady over time. Higher subjective caregiving burden and postloss concurrent greater social support and better QOL were associated with bereaved caregivers' lower likelihood of severe depressive symptoms. Bereaved caregivers' mental health-related QOL was facilitated and impeded by concurrent greater perceived social support and severe depressive symptoms, respectively. Conclusion Severe depressive symptoms and mental health-related QOL improved substantially, whereas physical health-related QOL remained steady over the first 2 years of bereavement for cancer patients' caregivers. Timely referrals to adequate bereavement services should be promoted for at-risk bereaved caregivers, thus addressing their support needs and facilitating their bereavement adjustment.

Background: Terminally ill cancer patients' worsening symptom distress and functional impairment may signal disease deterioration, thus facilitating their accurate prognostic awareness (PA...

Background: This study was conducted to examine whether a longitudinal advance care planning (ACP) intervention facilitates concordance between the preferred and received life-sustaining treatments (LSTs) of terminally ill patients with cancer and improves quality of life (QoL), anxiety symptoms, and depressive symptoms during the dying process. Patients and Methods: Of 795 terminally ill patients with cancer from a medical center in Taiwan, 460 were recruited and randomly assigned 1:1 to the experimental and control arms. The experimental arm received an interactive ACP intervention tailored to participants’ readiness to engage in this process. The control arm received symptom management education. Group allocation was concealed, data collectors were blinded, and treatment fidelity was monitored. Outcome measures included 6 preferred and received LSTs, QoL, anxiety symptoms, and depressive symptoms. Intervention effectiveness was evaluated by intention-to-treat analysis. Results: Participants providing data had died through December 2017. The 2 study arms did not differ significantly in concordance between the 6 preferred and received LSTs examined (odds ratios, 0.966 [95% CI, 0.653–1.428] and 1.107 [95% CI, 0.690–1.775]). Participants who received the ACP intervention had significantly fewer anxiety symptoms (β, −0.583; 95% CI, −0.977 to −0.189; P= .004) and depressive symptoms (β, −0.533; 95% CI, −1.036 to −0.030; P= .038) compared with those in the control arm, but QoL did not differ. Conclusions: Our ACP intervention facilitated participants’ psychological adjustment to the end-of-life (EoL) care decision-making process, but neither improved QoL nor facilitated EoL care honoring their wishes. The inability of our intervention to improve concordance may have been due to the family power to override patients’ wishes in deeply Confucian doctrine–influenced societies such as Taiwan. Nevertheless, our findings reassure healthcare professionals that such an ACP intervention does not harm but improves the psychological well-being of terminally ill patients with cancer, thereby encouraging physicians to discuss EoL care preferences with patients and involve family caregivers in EoL care decision-making to eventually lead to patient value–concordant EoL cancer care.

OBJECTIVE Death preparedness involves cognitive prognostic awareness and emotional acceptance of a relative's death. Effects of retrospectively assessed cognitive prognostic awareness and emotional preparedness for patient death have been individually investigated among bereaved family caregivers. We aimed to prospectively examine associations of caregivers' death-preparedness states, determined by conjoint cognitive prognostic awareness and emotional preparedness for death, with bereavement outcomes. METHODS Associations of caregivers' death-preparedness states (no-death-preparedness, cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) at last preloss assessment with bereavement outcomes over the first two bereavement years were evaluated among 332 caregivers of advanced cancer patients using hierarchical linear models with the logit-transformed posterior probability for each death-preparedness state. RESULTS Caregivers with a higher logit-transformed posterior probability for sufficient death-preparedness state reported less prolonged-grief symptoms, lower likelihoods of severe depressive symptoms and heightened decisional regret, and better mental health-related quality of life (HRQOL). Caregivers with a higher logit-transformed posterior probability for no-death-preparedness state reported less prolonged-grief symptoms, a lower likelihood of severe depressive symptoms, and better mental HRQOL. A higher logit-transformed posterior probability for cognitive-death-preparedness-only state was associated with bereaved caregivers' higher likelihood of heightened decisional regret, whereas that for emotional-death-preparedness-only state was not associated with caregivers' bereavement outcomes. CONCLUSIONS Caregivers' bereavement outcomes were associated with their preloss death-preparedness states, except for physical health-related QOL. Interventions focused on not only cultivating caregivers' accurate prognostic awareness but also adequately preparing them emotionally for their relative's forthcoming death are actionable opportunities for high-quality end-of-life care and are urgently warranted to facilitate caregivers' bereavement adjustment.

Background/Objective Death in intensive care units (ICUs) may increase bereaved family members’ risk for posttraumatic stress disorder (PTSD). However, posttraumatic stress-related symptoms (hereafter as PTSD symptoms) and their precipitating factors were seldom examined among bereaved family members and primarily focused on associations between PTSD symptoms and patient/family characteristics. We aimed to investigate the course and predictors of clinically significant PTSD symptoms among family members of deceased ICU patients by focusing on modifiable quality indicators for end-of-life ICU care. Method In this longitudinal observational study, 319 family members of deceased ICU patients were consecutively recruited from medical ICUs from two Taiwanese medical centers. PTSD symptoms were assessed at 1, 3, 6, and 13 months post-loss using the Impact of Event Scale-Revised (IES-R). Family satisfaction with end-of-life care in ICUs was assessed at 1 month post-loss. End-of-life care received in ICUs was documented over the patient’s ICU stay. Predictors for developing clinically significant PTSD symptoms (IES-R score ≥ 33) were identified by multivariate logistic regression with generalized estimating equation modeling. Results The prevalence of clinically significant PTSD symptoms decreased significantly over time (from 11.0% at 1 month to 1.6% at 13 months post-loss). Longer ICU stays (adjusted odds ratio [95% confidence interval] = 1.036 [1.006, 1.066]), financial insufficiency (3.166 [1.159, 8.647]), and reported use of pain medications (3.408 [1.230, 9.441]) by family members were associated with a higher likelihood of clinically significant PTSD symptoms among family members during bereavement. Stronger perceived social support (0.937 [0.911, 0.965]) and having a Do-Not-Resuscitate (DNR) order issued before the patient’s death (0.073 [0.011, 0.490]) were associated with a lower likelihood of clinically significant PTSD symptoms. No significant association was observed for family members’ satisfaction with end-of-life care (0.988 [0.944, 1.034]) or decision-making in ICUs (0.980 [0.944, 1.018]). Conclusions The likelihood of clinically significant PTSD symptoms among family members decreased significantly over the first bereavement year and was lower when a DNR order was issued before death. Enhancing social support and facilitating a DNR order may reduce the trauma of ICU death of a beloved for family members at risk for developing clinically significant PTSD symptoms.

Background Family caregivers’ distinct depressive-symptom trajectories are understudied and have been examined independently during end-of-life (EOL) caregiving or bereavement, making it difficult to validate two competing hypotheses (wear-and-tear vs. relief) of caregiving effects on bereavement. Existing studies may also miss short-term heterogeneity in depressive symptoms during the immediate postloss period due to lengthy delays in the first postloss assessment. Purpose This secondary-analysis study examined distinct depressive-symptom trajectories for caregivers of advanced cancer patients from EOL caregiving through the first 2 bereavement years with closely spaced assessments. Methods Depressive symptoms were measured monthly during EOL caregiving and 1, 3, 6, 13, 18, and 24 months postloss among 661 caregivers using the Center for Epidemiologic Studies-Depression scale. Depressive-symptom trajectories were identified using latent-class growth analysis while controlling for gender and age. Results We identified seven distinct depressive-symptom trajectories (prevalence) characterized by the timing, intensity, and duration of depressive symptoms: minimal-impact resilience (20.4%), recovery (34.0%), preloss-grief only (21.6%), delayed symptomatic (9.1%), relief (5.9%), prolonged symptomatic (6.5%), and chronically persistent distressed (2.5%). Conclusion Caregivers of advanced cancer patients responded heterogeneously to the stresses of EOL caregiving and bereavement. The majority of caregivers was resilient while providing caregiving and quickly rebounded to healthy levels of psychological functioning during bereavement, whereas a minority experienced delayed-symptomatic, prolonged-symptomatic, or chronically-persistent-distressing depressive-symptom trajectories. Linking caregivers’ psychological experiences from caregiving through bereavement by closely spaced assessments can more comprehensively illustrate their depressive-symptom trajectories, which confirm both the wear-and-tear and relief hypotheses, and help in targeting interventions for distinct depressive-symptom trajectories.

Objectives Evidence linking end-of-life-care quality in ICUs to bereaved family members' psychologic distress remains limited by methodological insufficiencies of the few studies on this topic. To examine comprehensively the associations of family surrogates' severe anxiety and depressive symptoms with end-of-life-care quality in ICUs over their first 6 months of bereavement. Design Prospective, longitudinal, observational study. Setting/participants Family surrogates (n = 278) were consecutively recruited from seven medical ICUs at two academically affiliated medical centers in Taiwan. Measurements and statistical analysis Family surrogates' anxiety and depressive symptoms were assessed 1, 3, and 6 months postloss using the Hospital Anxiety and Depression Scale. Family satisfaction with end-of-life care in ICUs was assessed 1-month postloss by the Family Satisfaction in the ICU questionnaire. Patients' end-of-life care was documented over the patient's ICU stay. Associations of severe anxiety and depressive symptoms (scores ≥ 8 for each subscale) with end-of-life-care quality in ICUs (documented by patient care received and family satisfaction with end-of-life care in ICUs) were examined by multivariate logistic regression models with generalized estimating equation. Main results Prevalence of severe anxiety and depressive symptoms decreased significantly over time. Surrogates' lower likelihood of severe anxiety or depressive symptoms 3-6 month postloss was associated with death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and higher family satisfaction with end-of-life care in ICUs. Bereaved surrogates' higher likelihood of these symptoms was associated with physician-surrogate prognostic communication and conducting family meetings before patients died. Conclusions End-of-life-care quality in ICUs is associated with bereaved surrogates' psychologic well-being. Enhancing end-of-life-care quality in ICUs by improving the process of end-of-life care, for example, promoting death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and increasing family satisfaction with end-of-life care, can lighten bereaved family surrogates' severe anxiety symptoms and severe depressive symptoms.

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.

Preparing family caregivers for a patient's death is an integral component of quality end-of-life care, but temporal changes in emotional preparedness for death and its associations with caregivers' psychological well-being or quality of life (QOL) while providing end-of-life caregiving are under-researched. Our study was conducted to fill this gap.For this prospective, longitudinal study, the course of changes in adequate emotional preparedness for death and its associations with severe depressive symptoms and QOL were examined on 309 consecutive caregivers of terminally ill cancer patients by univariate and multivariate generalized estimating equation analyses, respectively.Prevalence of adequate emotional preparedness for death was 57.2%, 61.3%, 54.4%, and 46.0% at 181-365, 91-180, 31-90, and 1-30 days before the patient's death, respectively, without significant changes as the patient's death approached. Adequate emotional preparedness for death was associated with caregivers' lower likelihood of severe depressive symptoms (adjusted odds ratio [95% CI]: 0.23 [0.16, 0.32], P 0.001) but with their better QOL (adjusted β [95% CI]: 7.65 [6.38, 8.92], P 0.001) in the patient's last year.Without active, effective clinical interventions to promote caregivers' emotional preparedness for death, they cannot automatically become more prepared for the patient's death over time. Adequate emotional preparedness for the patient's death benefits caregivers by its associations with a lower likelihood of depressive symptoms and better QOL. Supportive programs for caregivers of terminally ill cancer patients should focus on not only enhancing caregiving skills but also cultivating emotional preparedness for their relative's death to promote their psychological well-being and QOL.

Context Family caregivers constitute a critical component of the end-of-life care system with considerable cost to themselves. However, the joint association of terminally ill cancer patients' symptom distress and functional impairment with caregivers' subjective caregiving burden, quality of life (QOL), and depressive symptoms remains unknown. Objectives/Methods We used multivariate hierarchical linear modeling to simultaneously evaluate associations between five distinct patterns of conjoint symptom distress and functional impairment (symptom-functional states) and subjective caregiving burden, QOL, and depressive symptoms in a convenience sample of 215 family caregiver–patient dyads. Data were collected every 2 to 4 weeks over patients' last 6 months. Results Caregivers of patients in the worst symptom-functional states (States 3–5) reported worse subjective caregiving burden and depressive symptoms than those in the best two states, but the three outcomes did not differ between caregivers of patients in State 3 and States 4–5. Caregivers of patients in State 5 endured worse subjective caregiving burden and QOL than those in State 4. Caregivers of patients in State 4 suffered worse subjective caregiving burden and depressive symptoms but comparable QOL to those in State 2. Conclusion Patients' five distinct, conjoint symptom-functional states were significantly and differentially associated with their caregivers' worse subjective caregiving burden, QOL, and depressive symptoms while caring for patients over their last 6 months.

Background Prolonged grief disorder (PGD) and depression are recognized as distinct emotional-distress disorders for bereaved family caregivers. However, this distinction has been mostly validated in cross-sectional studies, neglecting the dynamic characteristics of bereaved caregivers' emotional distress. Objective To validate the distinction between symptoms of PGD and depression across the first bereavement year for family caregivers of terminally ill cancer patients. Methods In this descriptive, longitudinal study of 394 bereaved Taiwanese family caregivers, we measured symptoms of PGD and depression by the Prolonged Grief-13 and Center for Epidemiologic Studies Depression (CES-D) scales at 6 and 13 months postloss, respectively. Agreement between cases of PGD and severe depressive symptoms (CES-D score ≥ 16) was analyzed by Cohen's kappa. Structural distinctiveness was longitudinally examined using confirmatory bifactor modeling. Results Agreement was poor between cases of PGD and severe depressive symptoms at 6 and 13 months postloss (kappa = .16 [confidence interval = .09, .22] and .12 [confidence interval = .03, .19], respectively). Symptoms of PGD and depression shared a general factor, but were distinct as shown by their significant specific factor loadings at 6 and 13 months postloss. Confirmatory bifactor models showed structural invariance (confirmatory fit index difference .05) between 6 and 13 months postloss. Conclusion Symptoms of PGD and depression were confirmed as distinct across the first year of bereavement. Health care professionals should recognize early in bereavement that symptoms of PGD and depression are distinct, identify high-risk groups, and provide care tailored to caregivers' unique needs to facilitate recovery from bereavement-related emotional-distress disorders.

Background Developing accurate prognostic awareness, a cornerstone of preference-based end-of-life (EOL) care decision-making, is a dynamic process involving more prognostic-awareness states than knowing or not knowing. Understanding the transition probabilities and time spent in each prognostic-awareness state can help clinicians identify trigger points for facilitating transitions toward accurate prognostic awareness. We examined transition probabilities in distinct prognostic-awareness states between consecutive time points in 247 cancer patients' last 6 months and estimated the time spent in each state. Methods Prognostic awareness was categorized into four states: (a) unknown and not wanting to know, state 1; (b) unknown but wanting to know, state 2; (c) inaccurate awareness, state 3; and (d) accurate awareness, state 4. Transitional probabilities were examined by multistate Markov modeling. Results Initially, 59.5% of patients had accurate prognostic awareness, whereas the probabilities of being in states 1-3 were 8.1%, 17.4%, and 15.0%, respectively. Patients' prognostic awareness generally remained unchanged (probabilities of remaining in the same state: 45.5%-92.9%). If prognostic awareness changed, it tended to shift toward higher prognostic-awareness states (probabilities of shifting to state 4 were 23.2%-36.6% for patients initially in states 1-3, followed by probabilities of shifting to state 3 for those in states 1 and 2 [9.8%-10.1%]). Patients were estimated to spend 1.29, 0.42, 0.68, and 3.61 months in states 1-4, respectively, in their last 6 months. Conclusion Terminally ill cancer patients' prognostic awareness generally remained unchanged, with a tendency to become more aware of their prognosis. Health care professionals should facilitate patients' transitions toward accurate prognostic awareness in a timely manner to promote preference-based EOL decisions. Implications for practice Terminally ill Taiwanese cancer patients' prognostic awareness generally remained stable, with a tendency toward developing higher states of awareness. Health care professionals should appropriately assess patients' readiness for prognostic information and respect patients' reluctance to confront their poor prognosis if they are not ready to know, but sensitively coach them to cultivate their accurate prognostic awareness, provide desired and understandable prognostic information for those who are ready to know, and give direct and honest prognostic information to clarify any misunderstandings for those with inaccurate awareness, thus ensuring that they develop accurate and realistic prognostic knowledge in time to make end-of-life care decisions.

Background: Issuing do-not-resuscitate (DNR) orders has seldom been an outcome in randomized clinical trials of advance care planning (ACP) interventions. The aim of this study was to examine whether an ACP intervention facilitating accurate prognostic awareness (PA) for patients with advanced cancer was associated with earlier use of DNR orders. Patients and Methods: Participants (n=460) were randomly assigned 1:1 to the experimental and control arms, with 392 deceased participants constituting the final sample of this secondary analysis study. Participants in the intervention and control arms had each received an intervention tailored to their readiness for ACP/prognostic information and symptom-management education, respectively. Effectiveness in promoting a DNR order by facilitating accurate PA was determined by intention-to-treat analysis using multivariate logistic regression with hierarchical linear modeling. Results: At enrollment in the ACP intervention and before death, 9 (4.6%) and 8 (4.1%) participants and 168 (85.7%) and 164 (83.7%) participants in the experimental and control arms, respectively, had issued a DNR order, without significant between-arm differences. However, participants in the experimental arm with accurate PA were significantly more likely than participants in the control arm without accurate PA to have issued a DNR order before death (adjusted odds ratio, 2.264; 95% CI, 1.036–4.951; P=.041). Specifically, participants in the experimental arm who first reported accurate PA 31 to 90 days before death were significantly more likely than their counterparts in the control arm who reported accurate PA to have issued a DNR order in the next wave of assessment (adjusted odds ratio, 13.365; 95% CI, 1.989–89.786; P=.008). Both arms issued DNR orders close to death (median, 5–6 days before death). Conclusions: Our ACP intervention did not promote the overall presence of a DNR order. However, our intervention facilitated the issuance of NDR orders before death among patients with accurate PA, especially those who reported accurate PA 31 to 90 days before death, but it did not facilitate the issuance of DNR orders earlier than their counterparts in the control arm.ClinicalTrial.gov Identification: NCT01912846

Objective Grief reactions in bereaved caregivers of cancer patients have been identified individually as distinct prolonged grief disorder (PGD)-and major depressive disorder (MDD)-symptom trajectories, but no research has examined whether the patterns of change (trajectories) for PGD and MDD symptoms synchronize during bereavement. We conducted a secondary analysis study to investigate the construct distinctiveness of PGD and MDD by simultaneously identifying and examining similarities and differences between bereaved caregivers' PGD- and depressive-symptom trajectories from immediately post-loss through 2 years later. Methods PGD and depressive symptoms were measured for 849 cancer patients' caregivers over their first 2 years of bereavement using 11 grief-symptom items of the prolonged grief-13 scale (PG-11) and the center for epidemiologic studies-depression (CES-D) scale, respectively. PGD- and depressive-symptom trajectories were identified using latent class growth analysis with continuous latent-class indicators (total PG-11 and CES-D scores). Concordance of caregiver participants' membership in PGD- and depressive-symptom trajectories was examined by a percentage and a kappa value. Results Five distinct symptom trajectories were identified for both PGD and MDD, with four shared trajectories (endurance, transient-reaction, resilience, and prolonged-symptomatic) having different prevalence rankings. Nonetheless, unique trajectories were identified for PGD (potential recurrence) and depressive symptoms (chronically distressed), respectively. Concordance between membership in PGD- and depressive-symptom trajectories was moderate (61.3%, kappa [95% CI]: 0.49 [0.44, 0.53]). Conclusion PGD and MDD are related but distinct constructs indicated by the unique trajectories identified for each, different prevalence rankings for PGD- and depressive-symptom trajectories, and moderate concordance between membership in PGD- and depressive-symptom trajectories, respectively.

Context Emotional preparedness for death (hereafter called death preparedness) and prognostic awareness (PA), a distinct but related concept, each contributes to patients' practical, psychological, and interpersonal preparations for death. However, the distinction between these two concepts has never been investigated. Objectives To evaluate the distinction between death preparedness and accurate PA by examining their agreement during cancer patients' last year and the similarity of their predictors. Methods For this secondary analysis of a longitudinal study of death preparedness for 277 patients with cancer, agreement between death preparedness and accurate PA was evaluated by percentages and kappa coefficients, and predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation. Results Levels of agreement between reported death preparedness and accurate PA increased slightly (42.44%–52.85%) from 181–365 days to one to 30 days before death, with kappa values from −0.190 (−0.319, −0.061) to −0.006 (−0.106, 0.093), indicating poor agreement. Participants who were male, older, reported financial sufficiency, had fewer distressing symptoms, and perceived higher levels of social support were more likely to report death preparedness. Participants who were female, had greater than high-school educational attainment, and endured higher levels of functional dependence were more likely to report accurate PA. Conclusion The distinction between death preparedness and accurate PA was supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should not only cultivate cancer patients' accurate PA but also facilitate emotional preparation for death to achieve a good death and improve end-of-life care quality.

Context/Objectives To examine whether an advance care planning intervention randomized controlled trial facilitates terminally ill cancer patients' transitions to accurate prognostic awareness (PA) and the time spent in the accurate PA state in patients' last six months. Methods Participants (N = 460) were randomized 1:1 to experimental (interactive intervention tailored to participants' readiness for advance care planning/prognostic information) and control (symptom management education) arms with similar formats. PA was categorized into four states: 1) unknown and not wanting to know; 2) unknown but wanting to know; 3) inaccurate awareness; and 4) accurate awareness. Intervention effectiveness in the two outcomes was evaluated by intention-to-treat analysis with multistate Markov modeling (effect size ≥0.2 as minimal clinically important difference). Results The final sample constituted 188 and 184 experimental arm and control arm participants who died and were repeatedly assessed, respectively. Experimental arm participants in States 1–3 had a higher probability of shifting to accurate PA (23.0%–35.4% vs. 15.2%–26.2%) than control arm participants, and all effect sizes met the minimal clinically important difference criterion (effect sizes 0.22–0.49). In their last six months, experimental arm participants spent more time in States 3 and 4 (0.18 vs. 0.08 and 2.94 vs. 2.38 months, respectively) but less time in States 1 and 2 (2.70 vs. 3.19 and 0.18 vs. 0.36 months, respectively) (effect sizes 0.11–0.19). Conclusion Our intervention meaningfully facilitated participants' transition toward accurate PA and more time spent in the accurate PA state (State 4). Our intervention can help health care professionals foster cancer patients' accurate PA earlier in the terminal illness trajectory to make informed end-of-life care decisions tailored to their readiness for prognostic information.

OBJECTIVE Prolonged grief disorder (PGD) and major depressive disorder (MDD) are common syndromes shaping bereaved caregivers' quality of life (QOL). However, distinctiveness of these syndromes warrants confirmation, and the temporal relationship of PGD and MDD symptoms has not been established. To fill these knowledge gaps, we conducted this longitudinal study. METHODS PGD symptoms, depressive symptoms, and psychological QOL were measured over 398 caregivers' first 2 years of bereavement using the Prolonged Grief-13 (PG-13) scale, Center for Epidemiologic Studies-Depression (CES-D) scale, and Short Form-36 Health Survey mental health summary, respectively. To clarify the distinctiveness of PGD and MDD symptoms, we examined their associations with psychological QOL by incremental validity testing. Distinctiveness and temporal relationship of PGD and MDD symptoms were also examined using longitudinal, lower-level mediation analysis with a lagged approach. RESULTS After the variance in psychological QOL was explained by CES-D scores (pseudo-R2 = 44.19%, P

Background: Factors facilitating/hindering concordance between preferred and received life-sustaining treatments may be distorted if preferences and predictors are measured long before death. Aim: To examine factors facilitating/hindering concordance between cancer patients’ preferred and received life-sustaining-treatment states in their last 6 months. Design: Longitudinal, observational design. Setting/participants: States of preferred and received life-sustaining treatments (cardio-pulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, and nasogastric tube feeding) were examined in 218 Taiwanese cancer patients by a latent transition model with hidden Markov modeling. Multivariate logistic regression modeling was used to examine factors facilitating/hindering concordance between preferred and received life-sustaining-treatment states. Results: Concordance between preferred and received life-sustaining-treatment states was poor (40.8%, kappa value (95% confidence interval): 0.05 [–0.03, 0.14]). Patients who accurately understood their prognosis and preferred comfort care were significantly more likely to receive preferred life-sustaining treatments before death than those who did not know their prognosis but wanted to know, those who were uniformly uncertain about what life-sustaining treatments they preferred to receive, and those who preferred nutritional support but declined other life-sustaining treatments. Patient age, physician–patient end-of-life-care discussions, symptom distress, and functional dependence were not associated with concordance between preferred and received life-sustaining-treatment states. Conclusion: Prognostic awareness and preferred states of life-sustaining treatments were significantly associated with concordance between preferred and received life-sustaining-treatment states. Personalized interventions should be developed to cultivate terminally ill cancer patients’ accurate prognostic awareness, allowing them to formulate realistic life-sustaining-treatment preferences and facilitating their receiving value-concordant end-of-life care.

Background No population-based longitudinal studies on end-of-life (EOL) expenditures were found for cancer decedents. Methods This population-based, retrospective cohort study examined health care expenditures from 2001 to 2010 among 339,546 Taiwanese cancer decedents' last year of life. Individual patient-level data were linked from administrative datasets. Health care expenditures were converted from Taiwan dollars to U.S. dollars by health-specific purchasing power parity conversions to account for different health-purchasing powers. Associations of patient, physician, hospital, and regional factors with EOL care expenditures were evaluated by multilevel linear regression model by generalized estimating equation method. Results Mean annual EOL care expenditures for Taiwanese cancer decedents increased from 2000 to 2010 from U.S. $49,591 to U.S. $68,773, respectively, with one third of spending occurring in the patients' last month. Increased EOL care expenditures were associated with male gender, younger age, being married, diagnosed with hematological malignancies and cancers other than lung, gastric, and hepatic-pancreatic cancers, and dying within 7-24 months of diagnosis. Patients spent less at EOL when they had higher comorbidities and metastatic disease, died within 6 months of diagnosis, were under care of oncologists, gastroenterologists, and intensivists, and received care at a teaching hospital with more terminally ill cancer patients. Higher EOL care expenditures were associated with greater EOL care intensity at the primary hospital and regional levels. Conclusion Taiwanese cancer decedents consumed considerable National Health Insurance disbursements at EOL, totaling more than was consumed in six developed non-U.S. countries surveyed in 2010. To slow increasing cost and improve EOL cancer care quality, interventions to ensure appropriate EOL care provision should target hospitals and clinicians less experienced in providing EOL care and those who tend to provide aggressive EOL care to high-risk patients. The Oncologist 2017;22:460-469Implications for Practice: Cancer-care costs are highest during the end-of-life (EOL) period for cancer decedents. This population-based study longitudinally examined EOL expenditures for cancer decedents. Mean annual EOL-care expenditures for Taiwanese cancer decedents increased from U.S. $49,591 to U.S. $68,773 from the year 2000 to 2010, with one third of spending in patients' last month and more than for six developed non-U.S. countries surveyed in 2010. To slow the increasing cost of EOL-cancer care, interventions should target hospitals/clinicians less experienced in providing EOL care, who tend to provide aggressive EOL care to high-risk patients, to avoid the physical suffering, emotional burden, and financial costs of aggressive EOL care.

Aims/objectives To synthesise concepts of distinct depressive-symptom trajectories in published studies by establishing a measurable standard and estimate the prevalence of recategorised trajectories for bereaved families of chronically ill patients. Background Grieving is a dynamic/individualised process. In studies treating depressive-symptom trajectories as heterogeneous, different criteria were used to identify distinct trajectories, resulting in inconsistent findings. Design A systematic review of research guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria. Methods Five databases were systematically searched since each one's launch through June 2015. Two reviewers independently extracted data and assessed study quality using the QualSyst evaluation tool. Distinct depressive-symptom trajectories were narratively synthesised based on depressive-symptom level, duration, and improvement over time. The prevalence of recategorised depressive-symptom trajectories was recalculated from published data. Results We identified six studies, published in 1994-2012, that followed 56-301 bereaved families from 8 months to 5 years. We synthesised five new distinct trajectories (prevalence in synthesised sample): ‘endurance’ (54.2%), ‘resilience’ (8.8%), ‘transient reaction’ (7.7%), ‘chronic grief’ (19.4%), and ‘chronic depression’ (9.9%). The ‘endurance’ group experienced low depressive symptoms throughout the bereavement process. The ‘resilience’ group had severe depressive symptoms when they first transitioned into bereavement, but quickly recovered. The ‘transient reaction’ group's distress lasted 7-12 months post-bereavement, gradually returning to pre-bereavement levels. After bereavement, the chronic grief and depression groups experienced prolonged periods of depressive symptoms, which improved gradually only in the ‘chronic grief’ group. Conclusions Most bereaved families endured their grief and adjusted, returning to pre-bereavement depressive-symptom levels within 1 year postloss (represented by our synthesised ‘endurance,’ ‘resilience,’ and ‘transient reaction’ groups), with only 9.9% suffering ‘chronic depression.’ Relevance to clinical practice Guided by the synthesised distinct trajectories of depressive symptoms, clinicians should identify bereaved families’ depressive-symptom trajectories and provide suitable interventions to facilitate adjustment of those with chronic depressive symptoms. This article is protected by copyright. All rights reserved.

Background: Hematopoietic stem cell transplantation has prolonged life for children with life-threatening diseases. Quality of life is an essential outcome for evaluating the long-term effects of transplantation. Objective: The aims of this study were to compare the quality of life of children posttransplantation to that of healthy peers and explore the variables associated with the quality of life of posttransplant children. Methods: A cross-sectional study was conducted with 43 pediatric transplantation survivors and 43 age- and sex-matched healthy peers. Results: The mean age of the transplant group was 12.06 years. The mean time since transplant was 3.73 years. After covariate adjustment, there was no difference between posttransplant and healthy children in each domain and overall quality of life, except for physical functioning where the posttransplant children had lower scores than did the healthy group. Chronic graft-versus-host disease was found to be the primary factor associated with poor posttransplant overall quality of life and emotional and social functioning. Sociodemographic variables, symptom distress, and caregiver depression were not correlated with posttransplant quality of life. Conclusions: The quality of life of pediatric transplantation survivors was comparable to that of healthy peers. Implications for Practice: The finding that children after transplant may achieve quality of life similar to their healthy peers is important information for parents to consider as they consider treatment options. For those sick children who cannot regularly attend school, their emotional and social functioning should be closely monitored.

Background: No systematic meta-analysis is available on the prevalence of cancer patients’ accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received. Aim: To examine the prevalence of advanced/terminal cancer patients’ accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received. Design: Systematic review and meta-analysis. Methods: MEDLINE, Embase, The Cochrane Library, CINAHL, and PsycINFO were systematically searched on accurate prognostic awareness in adult patients with advanced/terminal cancer (1990–2014). Pooled prevalences were calculated for accurate prognostic awareness by a random-effects model. Differences in weighted estimates of accurate prognostic awareness were compared by meta-regression. Results: In total, 34 articles were retrieved for systematic review and meta-analysis. At best, only about half of advanced/terminal cancer patients accurately understood their prognosis (49.1%; 95% confidence interval: 42.7%–55.5%; range: 5.4%–85.7%). Accurate prognostic awareness was independent of service received and publication year, but highest in Australia, followed by East Asia, North America, and southern Europe and the United Kingdom (67.7%, 60.7%, 52.8%, and 36.0%, respectively; p = 0.019). Accurate prognostic awareness was higher by clinician assessment than by patient report (63.2% vs 44.5%, p Conclusion: Less than half of advanced/terminal cancer patients accurately understood their prognosis, with significant variations by region and assessment method. Healthcare professionals should thoroughly assess advanced/terminal cancer patients’ preferences for prognostic information and engage them in prognostic discussion early in the cancer trajectory, thus facilitating their accurate prognostic awareness and the quality of end-of-life care decision-making.

Background/objectives Surgery offers the potential to relieve symptoms for patients with cancer at the end of life (EOL) but at significant physiological and economic costs. However, the characteristics and correlates of surgery in last month of life (EOL surgery) of patients with cancer have not been comprehensively explored. This population-based study characterized EOL surgery use and identified its correlates. Methods This retrospective cohort study examined administrative data among 339,546 Taiwanese cancer decedents, 2001 to 2010. We classified procedures according to their likely intent. Results Approximately 1 in 10 (11.44%, range: 11.08%-11.86%) patients underwent EOL surgery with an increasing utilization over time. The intention for EOL surgery was primarily palliative, followed by cancer-directed, nonmalignancy-directed, and diagnostic. EOL surgery for palliative intent increased whereas other intents decreased significantly over time. EOL surgery was more likely among those who were male, younger, and married; not diagnosed with hepatic-pancreatic or lung cancers; had no comorbidity or documented metastatic codes; and survived less than 1 year from diagnosis. The likelihood of EOL surgery use was higher for patients who received care in a teaching hospital with more acute care hospital beds and higher EOL care intensity. Conclusions Rates of EOL surgery are lower in Taiwan than those reported in the United States. The increasing use of EOL surgery in Taiwan is primarily for palliative intent. Appropriateness of EOL surgery should be carefully evaluated to avoid underutilizing potentially beneficial, palliative-intent surgery and overutilizing cancer-directed and other surgical procedures, especially for physicians working in hospitals with abundant health care resources and a tendency to treat at-risk patients with cancer aggressively.

Background Temporal changes in the prevalence of anxiety disorders/symptoms for patients with cancer at the end of life (EOL) remain unclear. This study was undertaken to describe changes in the prevalence of severe anxiety symptoms and to identify its correlates in the last year of life for patients with cancer. Methods A convenience sample of 325 patients with cancer was followed until death. Severe anxiety symptoms were identified as anxiety subscale scores of 11 or greater on the Hospital Anxiety and Depression Scale. Longitudinal changes in and correlates of severe anxiety symptoms were examined from demographics, disease-related characteristics, disease burden, perceived burden to others, and social support using multivariate logistic regression modeling with generalized estimating equations. Results The prevalence of severe anxiety symptoms increased as death approached (18.6%, 21.9%, 26.7%, and 33.4% at 181-365, 91-180, 31-90, and 1-30 days before death, respectively). However, after controlling for covariates, this temporal increase was not significant. The prevalence of severe anxiety symptoms was not associated with fixed demographics and disease-related characteristics, except for diagnosis and metastatic status, but was significantly higher in patients with cancer with high physical symptom distress, severe depressive symptoms, high perceived burden to others, and strong perceived social support. Conclusions Severe anxiety symptoms were not associated with time proximity to death per se but were related to factors modifiable by high-quality EOL care. Clinicians may decrease the likelihood of severe anxiety symptoms at EOL by adequately managing physical and depressive symptoms and lightening perceived burden to others for patients strongly connected with their social network to improve their psychological well-being.

Background/Objective Self-perceived burden to others (SPB) is a major concern of terminally ill cancer patients and is frequently factored into end-of-life (EOL) care decision-making. However, changes in and determinants of SPB and its longitudinal impact on preferences for EOL care over the dying process have not been investigated. Our study was aimed at filling this gap in knowledge. Methods A convenience sample of 325 cancer patients was followed until death. High SPB was identified as scoring >20 on the Self-perceived Burden Scale. Preferences for EOL care included EOL-care goals, life-sustaining treatments, and hospice care. Factors potentially precipitating/minimizing patients' high SPB included demographics, disease characteristics and burden, and social support and were examined by multivariate logistic regression modeling with the generalized estimating equation. Results Prevalence of high SPB increased as death approached (51.78%, 58.26%, 62.66%, and 65.38% for 181–365, 91–180, 31–90, and 1–30 days before death, respectively). High SPB was precipitated by women, younger age, having inadequate financial resources, without religious affiliation, and suffering from severe symptom distress and heavy functional dependence but was independent of time proximity to patient death, disease characteristics, and social support. Furthermore, high SPB was not associated with EOL-care preferences, whether aggressive life-sustaining treatments or hospice care. Conclusions High SPB was prevalent among terminally ill cancer patients but independent of preferences for EOL care. Cancer patients' SPB may be lessened by adequate symptom relief to facilitate functional independence. These strategies to ease SPB may improve the quality of death and dying. Copyright © 2016 John Wiley & Sons, Ltd.

Context/Objective Essential indicators of high-quality end-of-life care in intensive care units (ICUs) have been established but examined inconsistently and predominantly with small samples, mostly from Western countries. Our study goal was to comprehensively measure end-of-life-care quality delivered in ICUs using chart-derived process-based quality measures for a large cohort of critically ill Taiwanese patients. Methods For this observational study, patients with APACHE II score ≥20 or goal of palliative care and with ICU stay exceeding three days (N = 326) were consecutively recruited and followed until death. Results Documentation of process-based indicators for Taiwanese patients dying in ICUs was variable (8.9%–96.3%), but high for physician communication of the patient's poor prognosis to his/her family members (93.0%), providing specialty palliative-care consultations (73.3%), a do-not-resuscitate order in place at death (96.3%), death without cardiopulmonary resuscitation (93.5%), and family presence at patient death (76.1%). Documentation was infrequent for social-worker involvement (8.9%) and interdisciplinary family meetings to discuss goals of care (22.4%). Patients predominantly (79.8%) continued life-sustaining treatments (LSTs) until death and died with full life support, with 88.3% and 58.9% of patients dying with mechanical ventilation support and vasopressors, respectively. Conclusions Taiwanese patients dying in ICUs heavily used LSTs until death despite high prevalences of documented prognostic communication, providing specialty palliative-care consultations, having a do-not-resuscitate order in place, and death without cardiopulmonary resuscitation. Family meetings should be actively promoted to facilitate appropriate end-of-life-care decisions to avoid unnecessary suffering from potentially inappropriate LSTs during the last days of life.