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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.

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.

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.

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.

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.

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 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

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.

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.

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.

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.

Context Promoting patient value-concordant end-of-life care is a priority in health care systems but has rarely been examined in randomized clinical trials. Objectives To examine the effectiveness of an advance care planning intervention in facilitating concordance between cancer patients' preferred and received life-sustaining treatment (LST) states and to explore modifiable factors facilitating or impeding such concordance. Methods Terminal cancer patients (N = 460) were randomly assigned 1:1 to the experimental and control arms of a randomized clinical trial, with 430 deceased participants comprising the final sample. States of preferred LSTs (cardiopulmonary resuscitation, intensive care unit care, chest compression, intubation with mechanical ventilation, intravenous nutrition, and nasogastric tube feeding) and LSTs received in the last month were examined by hidden Markov modeling. Concordance and its modifiable predictors were evaluated by kappa and multivariate logistic regression, respectively. Results We identified three LST-preference states (uniformly preferring LSTs, rejecting LSTs except intravenous nutrition support, and mixed LST preferences) and three received LST states (uniformly receiving LSTs, received intravenous nutrition only, and selectively receiving LSTs). Concordance was not significantly higher in the experimental than the control arm (kappa [95% CI]: 0.126 [0.032, 0.221] vs. 0.050 [−0.028, 0.128]; arm difference: odds ratio [95% CI]: 1.008 [0.675, 1.5001]). Preferred-received LST-state concordance was facilitated by accurate prognostic awareness, better quality of life, and more depressive symptoms, whereas concordance was impeded by more anxiety symptoms. Conclusions Our advance care planning intervention did not facilitate concordance between terminally ill cancer patients' preferred and received LST states, but patient value-concordant end-of-life care may be facilitated by interventions to cultivate accurate prognostic awareness, improve quality of life, support depressive patients, and clarify anxious patients' overexpectations of LST efficacy.

Context Postloss depressive symptom trajectories are heterogeneous and predicted by preloss psychosocial resources, but this evidence was from one old study on caregivers of patients with terminal cancer for whom these issues are highly relevant. Objectives To identify depressive symptom trajectories among cancer patients' bereaved caregivers and examine if they are predicted by preloss psychosocial resources while considering caregiving burden. Methods Preloss psychosocial resources (sense of coherence and social support) were measured among 282 caregivers. Depressive symptoms were measured by the Center for Epidemiological Studies–Depression scale at one, three, six, 13, 18, and 24 months after loss (Center for Epidemiological Studies–Depression scores ≥16 indicate severe depressive symptoms). Distinct depressive symptom trajectories and their predictors were identified by latent-class growth analysis. Results We identified five depressive symptom trajectories (prevalence): endurance (47.2%), resilience (16.7%), transient reaction (20.2%), prolonged symptomatic (11.7%), and chronically distressed (4.2%). Over two years after loss, the endurance group never experienced severe depressive symptoms. Severe depressive symptoms lasted six, seven to 12, and 18 months for the resilience, transient-reaction, and prolonged-symptomatic groups, respectively. The chronically distressed group's severe depressive symptoms persisted. The endurance and chronically distressed groups had the best and weakest psychological resources, respectively. Endurance-group caregivers perceived the greatest social support, whereas the resilience and transient-reaction groups had higher social support than the prolonged-symptomatic group. Conclusions Most (84.1%) caregivers' depressive symptoms subsided within one year after loss. Preloss psychosocial resources predicted depressive symptom trajectories for bereaved caregivers. Health care professionals can help caregivers adjust their bereavement by providing support to enhance their sense of coherence and encouraging social contacts while they are providing end-of-life care.

Context/Objective Half of advanced cancer patients do not have accurate prognostic awareness (PA). However, few randomized clinical trials (RCTs) have focused on facilitating patients' PA to reduce their life-sustaining treatments at end of life (EOL). To address these issues, we conducted a double-blinded RCT on terminally ill cancer patients. Methods Experimental-arm participants received an individualized, interactive intervention tailored to their readiness for advanced care planning and prognostic information. Control-arm participants received a symptom-management educational treatment. Effectiveness of our intervention in facilitating accurate PA and reducing life-sustaining treatments received, two secondary RCT outcomes, was evaluated by intention-to-treat analysis using multivariate logistic regression. Results Participants (N = 460) were randomly assigned 1:1 to experimental and control arms, each with 215 participants in the final sample. Referring to 151–180 days before death, experimental-arm participants had significantly higher odds of accurate PA than control-arm participants 61–90, 91–120, and 121–150 days before death (adjusted odds ratio [95% CI]: 2.04 [1.16–3.61], 1.94 [1.09–3.45], and 1.93 [1.16–3.21], respectively), but not one to 60 days before death. Experimental-arm participants with accurate PA were significantly less likely than control-arm participants without accurate PA to receive cardiopulmonary resuscitation (CPR) (0.16 [0.03–0.73]), but not less likely to receive intensive care unit care and mechanical ventilation in their last month. Conclusion Our intervention facilitated cancer patients' accurate PA early in their dying trajectory, reducing the risk of receiving CPR in the last month. Health care professionals should cultivate cancer patients' accurate PA early in the terminal-illness trajectory to allow them sufficient time to make informed EOL-care decisions to reduce CPR at EOL.

Context/Objectives Our study addressed important knowledge gaps about trajectories of distinct conjoint symptom-functional states, that is, patterns for different levels of combined symptom distress and functional impairment, over cancer patients' last year and their ability to predict survival. Methods We identified distinct symptom-functional states and explored their changes over 317 terminally ill cancer patients' last year by a transition model using hidden Markov modeling. These distinct symptom-functional states' ability to predict current survival probability, measured in the previous assessment, was evaluated by multivariate Cox regression models. Results We identified five worsening, conjoint symptom-functional states: 1) mild symptom distress with high functioning, 2) moderate symptom distress with mild functional impairment, 3) severe symptom distress with moderate functional impairment, 4) moderate symptom distress with severe functional impairment, and 5) profound symptom distress and functional impairment. Trajectories of these five states differed substantially by direction (downward vs. upward) and speed. Participants in States 1–4 had substantially lower risk of subsequent death than those in State 5 (adjusted hazard ratios [95% CI] ranged from 0.048 [0.028–0.081] to 0.434 [0.316–0.579]). The risk of subsequent death differed significantly between patients in any two distinct symptom-functional states, except between those in States 3 and 4. Conclusion Our identification of five distinct symptom-functional states and their unique transition patterns and prediction of mortality provides all stakeholders with guides for end-of-life care. Goals of end-of-life care should change toward palliative care and effective symptom management for patients with at least moderate symptom distress and substantial functional impairment.

Few studies have evaluated completely the changes in quality of life (QOL) that occur from pretreatment through the first four consecutive cycles of chemotherapy or determined its determinants in patients with advanced non-small-cell lung cancer (NSCLC). The aim of this study was to explore the changes to and determinants of QOL in patients with advanced NSCLC under initial chemotherapy from pretreatment through Cycle 4 of chemotherapy. The QOL of 139 patients with advanced NSCLC was assessed from prechemotherapy through Cycle 4 of chemotherapy. Changes to and determinants of QOL were evaluated using multivariate linear regression, which used generalized estimation equation models. No significant changes were observed in the global QOL or the physical, role, emotional, or cognitive functional domains of QOL during the course of chemotherapy. However, the social functional domain of QOL improved significantly at Cycle 3 in comparison with the prechemotherapy values. Better global QOL was determined as better performance status, less frequent physical symptoms, and less severe anxiety and depressive symptoms. Important determinants of better QOL in the five functional domains included younger age, better performance status, less frequent physical symptoms, less severe anxiety and depressive symptoms, and weaker perceived social support. Furthermore, patients who achieved a partial response after chemotherapy enjoyed stronger improvements in global QOL and the QOL emotional functional domain than those who did not. To help patients with advanced NSCLC optimize their QOL, healthcare professionals should enhance their ability to identify patients who are at elevated risk of poor QOL throughout the course of chemotherapy and to appropriately detect and manage the related physical symptoms and side effects, strengthen patients' social support, and lessen the anxiety and depressive symptoms of patients.

Context Emotional preparedness for death is a distinct but related concept to prognostic awareness (PA). Both allow patients to prepare psychologically and interpersonally for death, but they have primarily been examined in cross-sectional studies. Objectives To 1) explore the courses of change in good emotional preparedness for death and accurate PA and 2) evaluate their associations with severe anxiety symptoms, severe depressive symptoms, and quality of life in cancer patients' last year. Methods For this prospective, longitudinal study, we consecutively recruited 277 terminally ill cancer patients. Aims 1 and 2 were examined by univariate and multivariate generalized estimating equation analyses, respectively. Results The prevalence of good emotional preparedness for death was 54.43%–65.85% in the last year, with a significant decrease only 91–180 vs. 181–365 days before death (odds ratio [95% CI] = 0.67 [0.47, 0.97]). Good emotional preparedness for death was associated with a lower likelihood of severe anxiety symptoms (adjusted odds ratio [95% CI] = 0.47 [0.27, 0.79]) and severe depressive symptoms (0.61 [0.39, 0.95]), but not with quality of life (β [95% CI] = 0.49 [−2.13, 3.11]). However, accurate PA improved substantially (55.12%–70.73%) as death approached and accurate PA was positively associated with severe depressive symptoms (2.63 [1.63, 4.25]). Conclusion Good emotional preparedness for death and accurate PA remained largely stable and improved substantially, respectively, in cancer patients' last year. Both measures were significantly associated with psychological distress. Health care professionals should not only cultivate accurate PA but also promote cancer patients' emotional preparedness for death, which may improve their psychological well-being.

The effect of caring for a dying cancer patient on caregiving burden has been explored primarily in Western-based studies with small samples or in studies that did not follow up until the patient's death, but has not yet been investigated in Taiwan.The study's goals were (1) to identify the trajectory of caregiving burden for family caregivers (FCs) of terminally ill cancer patients in Taiwan, and (2) to investigate the determinants of caregiving burden in a large sample and with longitudinal follow-ups, until the patient's death.A prospective, longitudinal study was conducted among 193 FCs. The trajectory and determinants of caregiving burden were identified by a generalized estimation equation approach.Caregiving burden did not change as the patient's death approached. FCs experienced heavy caregiving burden when their relative suffered from greater symptom distress or if they were spousal caregivers; provided high intensity of assistance to the patient while spending fewer hours providing care; reported financial insufficiency; or had lower social support, fewer psychological resources, or less confidence in caregiving.Taiwanese family caregivers' carry moderate caregiving burden which did not change significantly as the patients' death approached. The effects of caregiving burden while providing EOL care to terminally ill cancer patients may be tempered substantially by enhancing family caregivers caregiving confidence, social support, and psychological resources.

The availability of new chemotherapeutic agents has lengthened the treatment timeline for advanced cancers and increases the likelihood of receiving chemotherapy near death. Use of chemotherapy near the end of life may not benefit cancer patients. However, no population-based study has examined the determinants for continuing chemotherapy at the end of life for all ages and cancer groups as well as for a whole country. This population-based study assessed the association between continuation of chemotherapy in the last month of life and patient demographics, disease characteristics, primary physician's specialty, hospital characteristics, and healthcare resource availability at the hospital and regional levels.Retrospective population-based cohort study using administrative data among 204 850 Taiwanese cancer decedents in 2001-2006.Rates of continued chemotherapy in the last month of life for each study year were 17.5%, 17.4%, 17.3%, 19.0%, 20.0%, and 21.0%, respectively and have remained steady since 2001. Taiwanese cancer patients had greater odds for continuation of chemotherapy in the last month of life if they were male [adjusted odds ratio (AOR) 1.19, 95% confidence interval (CI) 1.13-1.25], younger, single [1.21 (1.09-1.35)], had lower comorbidity levels, were diagnosed with hematologic malignancies [1.90 (1.09-1.35)] and breast cancer [1.24 (1.08-1.43)], had metastatic disease [1.36 (1.27-1.46)], and survived1 year but longer than two months post-diagnosis. The odds for continued chemotherapy in patients' last month was significantly increased by being cared for by a medical oncologist [3.49 (3.04-3.99)] or in a teaching hospital [1.39 (1.11-1.74)] and with the highest intensity of total inpatient hospital beds [1.63 (0.99-2.68)], but was not influenced by regional healthcare resources (total hospital and hospice beds).The relative risk for continuation of chemotherapy in the last month of life was determined by patient demographics and disease characteristics, physician specialty, and healthcare resources at the primary hospital level.

Context High-quality end-of-life (EOL) care depends on thoroughly assessing terminally ill patients' preferences for EOL care and tailoring care to individual needs. Studies on predictors of EOL-care preferences were primarily cross-sectional and assessed preferences for multiple life-sustaining treatments (LSTs), making clinical applications difficult. Objective/Methods We examined factors predisposing cancer patients (N = 303) to specific LST-preference states (life-sustaining preferring, comfort preferring, uncertain, and nutrition preferring) derived from six LSTs (cardiopulmonary resuscitation, intensive care unit care, chest compression, intubation with mechanical ventilation, intravenous nutrition, and tube feeding) in patients' last six months by multilevel multinomial logistic regression. Results Participants with accurate prognostic awareness and physician-patient EOL-care discussions were less likely to be in life-sustaining-preferring, uncertain, and nutrition-preferring states than in the comfort-preferring state. Better quality of life (QOL) and more depressive symptoms predisposed participants to be less likely to be in the uncertain than in the comfort-preferring state. Membership in the nutrition-preferring rather than the comfort-preferring state was significantly higher for participants in the state of moderate symptom distress with severe functional impairment than in the state of mild symptom distress with high functioning. Conclusion Accurate prognostic awareness, physician-patient EOL-care discussions, QOL, depressive symptoms, and symptom-functional states predisposed terminally ill cancer patients to distinct LST-preference states. Clinicians should cultivate patients' accurate prognostic awareness and facilitate EOL-care discussions to foster realistic expectations of LST efficacy at EOL. Clinicians should enhance patients' QOL to reduce uncertainty in EOL-care decision making and provide adequate psychological support to those with more depressive symptoms who prefer comfort care only.

Context/Objective The extent to which patients' preferences for end-of-life (EOL) care are honored may be distorted if preferences are measured long before death, a common approach of existing research. We examined the concordance between cancer patients' states of life-sustaining treatments (LSTs) received in their last month and LST preference states assessed longitudinally over their last six months. Methods We examined states of preferred and received LSTs (cardiopulmonary resuscitation, intensive care unit care, chest compression, intubation with mechanical ventilation, intravenous nutrition, and nasogastric tube feeding) in 271 cancer patients' last six months by a transition model with hidden Markov modeling (HMM). The extent of concordance was measured by a percentage and a kappa value. Results HMM identified four LST preference states: life-sustaining preferring, comfort preferring, uncertain, and nutrition preferring. HMM identified four LST states received in patients' last month: generally received LSTs, LSTs uniformly withheld, selectively received LSTs, and received intravenous nutrition only. LSTs received concurred poorly with patients' preferences estimated right before death (39.5% and kappa value: 0.06 [95% CI: −0.02, 0.13]). Patients in the life-sustaining–preferring, uncertain, and nutrition-preferring states primarily received no LSTs, and patients in three of four states received intravenous nutrition against their preferences. Concordance was strongest for comfort-preferring patients. Conclusions Concordance was poor between patients' preferred and received LST states. Interventions are needed to clarify patients' EOL care goals and to facilitate their understanding about LST's ineffectiveness in prolonging life at EOL. Such interventions might increase patients' comfort preference and ensure concordance between their preferred and received EOL care.

Context The discrepancy between patients' preferred and actual place of death highlights the dilemma inherent in achieving their preferences for home death. Research on determinants of home death has been limited largely by focusing on individual-level factors and somewhat on health care resources at the primary hospital and regional levels. Objectives To investigate factors associated with home death, specifically, services received by cancer patients at the end of life (EOL). Methods This was a retrospective cohort study using administrative data from 201,201 Taiwanese cancer decedents in the period 2001–2006. Results Rates of home death decreased significantly over time (from 35.67% to 32.39%). Dying at home was associated with patient demographics (gender, age, and marital status) and disease characteristics (cancer type, metastatic status, postdiagnosis survival time, and comorbidity level). Taiwanese cancer patients were less likely to die at home if they received care from a medical oncologist and in hospitals or regions with abundant health care resources. Furthermore, Taiwanese cancer patients were less likely to die at home if they used life-sustaining treatments (intensive care unit care, cardiopulmonary resuscitation, intubation, and mechanical ventilation) in the last month of life. However, multiple emergency room visits in the last month of life and receiving hospice care increased Taiwanese cancer patients' propensity to die at home. Conclusion Despite the causal ambiguity in interpreting our research findings, they indicate that using life-sustaining treatments at EOL not only exacts a substantial toll from patients, family members, and society, but also decreases the likelihood of dying at home.

Context Evidence for the association of hospice exposure with lower health care expenditures at end of life (EOL) remains inconclusive and neglects EOL care being concentrated in patients' last few months. Objective The association between hospice exposure and health care expenditures in cancer patients' last one, three, six, and 12 months was evaluated. Methods In this population-based, retrospective cohort study, Taiwanese cancer decedents in 2001–2010 (N = 195,228) were matched 1:1, with proportions of matched hospice users reaching 87.8%, by a hospice-utilization propensity score. For each matched pair, exposure to hospice (time from hospice enrollment to death) was matched to equivalent periods for hospice nonusers before death. Hospice-care associations with health care expenditures were evaluated by hospice use/exposure interactions with multilevel linear regression modeling using generalized estimating equations. Results The unadjusted main effect showed lower total mean health care expenditures for hospice users than for hospice nonusers only in the last one and three months (rate ratio [95% CI]: 0.86 [0.81, 0.90] and 0.93 [0.89, 0.96], respectively). However, after accounting for exposure time, hospice care was significantly associated with lower health care expenditures at exposures of ≤30, ≤60, and ≤180 days for health care expenditures measured in the last one and three months, six months, and 12 months, respectively. Savings for patients with lengthy hospice stays were neutralized or even disappeared. Conclusion Hospice care was associated with lower health care expenditures when it could actively intervene in EOL care. Hospice philosophy should be applied not only shortly before death but also throughout the dying trajectory to achieve maximum cost savings.

Learning Objectives After completing this course, the reader will be able to: Assess indicators for poor quality end-of-life cancer care in the last month of life.Compare the differing perspectives of physicians of various specialties regarding palliative chemotherapy and the use of life-sustaining treatments for terminally ill cancer patients.Evaluate the benefits and detriments of administering chemotherapy close to death. This article is available for continuing medical education credit at CME.TheOncologist.com Background. Oncologists play a significant role in cancer care throughout the cancer trajectory and have traditionally emphasized underuse of procedures/treatments with well-established effectiveness as the source of poor care quality with little attention to overusing end-of-life (EOL) care. The purpose of this population-based study was to compare the quality of EOL care between medical oncologists and other physician specialists. Methods. This retrospective cohort study compared indicators of poor quality EOL care by examining administrative data for 204,850 Taiwanese cancer decedents in 2001–2006. Results. Taiwanese cancer patients whose primary physician was a medical oncologist were significantly more likely than patients of other physician specialists to receive chemotherapy and to spend >14 days in a hospital in the last month of life. However, they were significantly less likely than patients of other physician specialists to visit the emergency room (ER) more than once and to use intensive care unit (ICU) care, cardiopulmonary resuscitation (CPR), intubation, and mechanical ventilation in the last month of life. Conclusion. The quality of EOL cancer care in Taiwan varied significantly by physician specialty. Cancer decedents cared for by medical oncologists were more likely to receive chemotherapy and prolonged hospitalization but less likely to have multiple ER visits, ICU care, or undergo CPR, intubation, or mechanical ventilation in the last month of life than patients of other physician specialists.

Background/Purpose: To investigate the quality of care (QOC) for lung cancer in Taiwan, as measured by pattern of care (POC) variation. Methods: Based on core measures in the Taiwan Cancer Database (TCDB) registry, QOC for lung cancer was measured as variation in POC for 16 selected core measures for different hospital characteristics. Statistical significance in variation was evaluated by the χ2 test. Results: Among the 26 participating hospitals (one excluded as an outlier), 6624 cases of lung cancer were reported in 2004. Among the 16 core measures (6 in the diagnostic and 10 in the therapeutic domain), no significant variation in POC was noted in 12 in northern and non-northern hospitals. However, significant variation in POC was noted for most (5/6) of the core measures in the diagnostic domain for other hospital characteristics (large vs. small, medical center vs. regional hospital, public vs. private). Increasing utilization of tissue diagnosis, diagnostic computed tomography (CT), and CT or magnetic resonance imaging for staging advanced non-small cell lung cancer was noted in the four participating hospitals from 2002 to 2004. Conclusion: It is very likely that significant variation in QOC for lung cancer in Taiwan exists among different types but not locations of hospitals, at least in the diagnostic domain. The introduction of internal benchmarking (TCDB and core measures) was associated with some changes, at least in some diagnostic domains, which may lead to improvement in QOC for lung cancer in Taiwan.

Family caregiving is common and important in Taiwanese culture. However, the combination of anticipated loss, prolonged psychological distress, and the physical demands of caregiving can seriously compromise the quality of life (QOL) of a family caregiver (FC). The effect of caring for a dying cancer patient on a FC's QOL has been explored in western countries--primarily with small sample sizes or short-term follow-ups--but has not yet been investigated in Taiwan. Therefore, the purposes of this study were to: (1) identify the trajectory of the QOL of FCs of terminally ill cancer patients in Taiwan; and (2) investigate the determinants of the QOL of FCs, in a large sample and with longer follow-ups, until the patient dies.A prospective, longitudinal study was conducted among 167 FCs. Trajectory and determinants of FCs' QOL were identified by a generalized estimation equation (GEE).Caregiving for a terminally ill cancer patient extracts a toll from a FC's QOL and causes it to deteriorate significantly over time. The results from the multivariate GEE analysis indicated that this deterioration of a FC's QOL reflects the patient's increasing distress from symptoms, the gradual loss of confidence in caregiving and an increased subjective caregiving burden on the FC as the patient's death approaches, and a weaker psychological resource (i.e., sense of coherence) of the FC.Taiwanese FCs' QOL deteriorated significantly as the patient's death approached. This study contributes to the family caregiving literature by using longitudinal data to confirm that the available psychological resource of a FC and the 'appraisals of caregiving' are more salient in determining a FC's QOL than the patient's/FC's characteristics and the caregiving demands.

The use of family caregivers to report patients' dying experiences has been suggested as a way of resolving the problem of non-response bias and missing data in end-of-life research. There is a dearth of information in the literature about the predictors of the extent of agreement for quality of life (QOL) assessments between patients and family informants outside of Western countries. In addition, to date there has been little progress made in deciphering meaningful influencing factors on the levels of agreement between patient and family QOL assessments. The purpose of this study was to identify the impact of the demographics and disease characteristics of patients and families, relationships of the patient to family caregiver, and caregiving burden on the extent of agreement for QOL assessments between Taiwanese terminally ill cancer patients and their family caregivers. Results from assessments by 114 dyads of Taiwanese terminally ill cancer patients and their family caregivers indicated that the extent of agreement between patient and family assessments of patient QOL was negatively influenced by the caregiving burden (amount of care needed and the impact of caregiving on caregiver's health), positively influenced by the patient's poorer health status, and there were a mixed effect of the demographics and the relationship between the patient and the family. Providing clinical care tailored at empowering families and aimed at reducing their unmet caregiving needs may improve family caregivers' abilities to assess patient QOL sensitively.

There is a dearth of information in the literature about the concordance of preferences for end-of-life care between terminally ill patients and their family surrogates outside the Western countries. The purpose of this study was to examine the extent of concordance in preferences for end-of-life care goals and life-sustaining treatments between Taiwanese terminally ill cancer patients and their primary family caregivers. A total of 617 dyads of patients-family caregivers across 21 hospitals throughout Taiwan were surveyed. Overall agreements on the goals for end-of-life care and preferences for initiating life-sustaining treatments ranged from 62.4% to 96.9% (average: 71.0%). Kappa values for the extent of concordance ranged from 0.13 to 0.46 (average: 0.29), indicating poor to moderate consistency in personal preferences. Family caregivers had a significantly more aggressive attitude toward each examined life-sustaining treatment for their ill family members than the patients' own stated preferences. In societies, such as in Asian countries, where physicians' respect for patient autonomy is frequently subordinate to the power of family, disagreements between a patient and family about end-of-life care may result in the patient's preferences being overridden at the end of life. To effect real change and to gain increased agreement on preferences for end-of-life care, an open dialogue between patients and their primary family caregivers should become standard.

Context Factors influencing pediatric cancer patients' place of death may have evolved with advances in medical and hospice care since earlier studies were done. Objectives To comprehensively analyze factors associated with hospital death in an unbiased population of pediatric cancer patients in Taiwan. Methods This was a retrospective cohort study using administrative data for 1603 Taiwanese pediatric cancer patients who died in 2001–2010. Place of death was hypothesized to be associated with 1) patient sociodemographics and disease characteristics, 2) primary physician's specialty, 3) characteristics and health care resources at both the hospital and regional levels, and 4) historical trends. Results Most Taiwanese pediatric cancer patients (87.4%) died in an acute care hospital. The probability of dying in hospital increased slightly over time, reaching significance only in 2009 (adjusted odds ratio [AOR], 95% CI: 2.84 [1.32–6.11]). Children were more likely to die in an acute care hospital if they resided in the most urbanized area, were diagnosed with leukemia or lymphoma (2.32 [1.39–3.87]), and received care from a pediatrician (1.58 [1.01–2.47]) in a nonprofit proprietary hospital (1.50 [1.01–2.24]) or large hospital, reaching significance for the third quartile (2.57 [1.28–5.18]) of acute care hospital beds. Conclusion Taiwanese pediatric cancer patients predominantly died in an acute care hospital with a slightly increasing trend of shifting place of death from home to hospital. Propensity for hospital death was determined by residential urbanization level, diagnosis, primary physician's specialty, and the primary hospital's characteristics and health care resources. Clinical interventions and health policies should ensure that resources are allocated to allow pediatric cancer patients to die in the place they and their parents prefer to achieve a good death and promote their parents' bereavement adjustment.

Longitudinal research has been recommended as the most appropriate research design to ensure the validity of quality of life assessments. However, high attrition and non-random missing data in quality of life studies for terminal cancer patients raise questions about generalizability of the study, and at worst they may jeopardize interpretation of the results. Appropriate time frames for eliciting information directly from terminal cancer patients can ensure the internal and external validity of quality of life research in end-of-life care, allow health care professionals to detect sensitively the effects of end-of-life care within the shortest intervention period, and make comparisons across studies possible. From a review of the literature, it is recommended that the appropriate time frame for interviewing terminal cancer patients about their quality of life be a weekly assessment schedule based on the following factors: (a) the median survival of terminal cancer patients enrolling in a hospice/palliative care program is approximately 30 days and there are substantial number of patients who die in each week; (b) at the final weeks of life, quality of life and symptoms of some terminal cancer patients change dramatically; and (c) the shortest intervention period that is likely to give a clinically significant effect of end-of-life care management is 1 week after the enrollment in end-of-life care.

Context/Objective Temporal changes have not been examined in patient-caregiver agreement on life-sustaining treatment (LST) preferences at end of life (EOL). We explored the extent of and changes in patient-caregiver agreement on LST-preference patterns for two independent cohorts of Taiwanese cancer patient-family caregiver dyads recruited a decade apart. Methods We surveyed preferences for cardiopulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, tube feeding, and dialysis among 1049 and 1901 dyads in 2003–2004 and 2011–2012, respectively. LST-preference patterns were examined by multi-group latent class analysis. Extent of patient-caregiver agreement on LST-preference patterns was determined by percentage agreement and kappa coefficients. Results For both patients and family caregivers, we identified seven distinct LST-preference classes. Patient-caregiver agreement on LST-preference patterns was poor to fair across both study cohorts, indicated by 24.4%–43.5% agreement and kappa values of 0.06 (95% CI: 0.04, 0.09) to 0.27 (0.23, 0.30), and declined significantly over time. Agreement on LST-preference patterns was most likely when both patients and caregivers uniformly rejected LSTs. When patients disagreed with caregivers on LST-preference patterns, discrepancies were most likely when patients totally rejected LSTs but caregivers uniformly preferred LSTs or preferred nutritional support but rejected other treatments. Conclusion Patients and family caregivers had poor-to-fair agreement on LST-preference patterns, and agreement declined significantly over a decade. Encouraging an open dialogue between patients and their family caregivers about desired EOL care would facilitate patient-caregiver agreement on LST-preference patterns, thus honoring terminally ill cancer patients' wishes when they cannot make EOL-care decisions.

We agree with Drs. Peterson and Groenvold that use of the overall scores of the McGill Quality of Life Questionnaire (MQOL), the Symptom Dis tress Scale (SDS), and the Enforced Social Dependency Scale (ESDS), when investigating the extent of agreement between terminally ill cancer patients and their family caregivers, cannot eluci date the whole picture of concordance between the two respondents. We recognize that collapsing information on different symptoms or different subscales into an overall score will forfeit the dis tinct characteristics of each symptom and subscale within an instrument. However, the following two reasons led Dr Tang to conduct the analyses for identifying predictors of the extent of agreement between QOL assessments made by terminally ill cancer patients and their family caregivers solely by the absolute differences in overall scores of the three selected instruments rather than analyses for individual symptoms or domains. Firstly, the primary interest of the article [1] is to understand which factors will facilitate or impede the extent of agreement between "QOL" assess ments, over and above individual symptoms or psycho-social-spiritual concerns, made by termi nally ill cancer patients and their family caregivers. There is mounting evidence that, at the end of life, cancer patients suffer from multiple physical symptoms [2] and diverse psycho-social-spiritual distress [3]. The concept of "symptom cluster" further illustrates the phenomenon that different symptoms may intertwine together [4]. Researchers have also indicated that there are strong associa tions among a loss of meaning, depression, anxiety, feeling of being a burden on others, hopelessness, and even desire for death [5-6]. One specific symptom or psycho-social-spiritual concern could not adequately represent the overall suffering that cancer patients experience at the end of life. Quality of life, with its multidimensional characteristics, addresses the aforementioned important experi ences integratively. Correspondingly, achieving the best quality of life for terminally ill cancer patients by control of pain and other symptoms and satis fying patients' psychological, social, and spiritual needs has been recognized as the main goal of end of-life care [7]. In order to identify predictors for the extent of agreement between patients' and family caregiv ers' QOL assessments, the author adopts other scholars' [8-9] conceptualization of QOL as a multidimensional construct, encompassing physi cal function, distress resulting from diseaseand/ or treatment-related symptoms, and psycho social-spiritual concerns. The author therefore chose the SDS, the ESDS, and the MQOL to measure the aforementioned three discrete dimensions of QOL, respectively. The high inter nal consistency (Cronbach's alphas of the MQOL: 0.90 and 0.92 for patients and family caregivers, respectively, of the SDS were 0.850 and 0.846; and of the ESDS were 0.948 and 0.953) and high proportion of significant item-item correlations (SDS: 93.6% and 77% for patients and family caregivers (average correlation coefficient for pa tients and family caregivers: 0.33 and 0.30), respectively; ESDS: 100% and 100% (average correlation coefficient: 0.67 and 0.70); and MQOL: 93.9% and 100% (average correlation coefficient: 0.40 and 0.47)) of the three instruments indicate that items on the SDS, the ESDS and the MQOL all measure unique dimensions, namely symptom distress, functional dependency, and psycho-so cial-spiritual concerns.

Background: Studies worldwide have shown that most patients with cancer prefer to die at home. Few studies have directly explored the determinants of preference for home death in patients with cancer living in Asia, and none has been conducted in Taiwan.Objectives: This study was designed to identify determinants of home-death preference among terminally ill patients with cancer in Taiwan.Methods: A convenience sample of 2,188 terminally ill patients with cancer from 24 hospitals nationwide was surveyed. This study used multivariate logistic regression analysis to identify the determinants of preference for home death in the realms of patient demographics and disease characteristics, awareness of prognosis, and family support.Results: Slightly more than half of the participants expressed the preference to die at home (n=1,114, 54.7%). The adjusted odds of preferring to die at home were greater for participants described by one or more of the following: (1) family members knew the participant's preference for place of death (p＜.001), (2) participant knew his or her prognosis (p=.032), (3) participant had greater functional dependency (p＜.001), (4) participant was diagnosed with either liver/pancreatic (p=.028) or head/neck (p=.012) cancer, and (5) participant had less than a junior high school education (p＜.001).Conclusions/Implications for Practice: This study supports the argument that most terminally ill patients with cancer in Taiwan prefer to die at home. To achieve patient preferences for home death, healthcare professionals should provide prognostic information and initiate end-of-life care discussions among patients and their family to facilitate family understanding of their ill relative's place-of-death preference. Developing clinical interventions to alleviate physical symptoms and providing hospice homecare services for terminally ill patients with cancer, especially those with lung cancer and greater functional dependency, may facilitate a preference for and actualization of home death.

Context Temporal changes in different family caregiver cohorts' preferences for life-sustaining treatments (LSTs) at end of life (EOL) have not been examined nor have the concept of whether caregivers' LST preferences represent a homogeneous or heterogeneous construct. Furthermore, LST preferences are frequently assessed from multiple treatments, making clinical applications difficult/infeasible. Objectives To identify parsimonious patterns and changes in the pattern of LST preferences for two independent cohorts of family caregivers for terminally ill Taiwanese cancer patients. Methods Preferences for cardiopulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, tube feeding, and dialysis were assessed among 1617 and 2056 family caregivers in 2003–2004 and 2011–2012, respectively. Patterns and changes in LST preferences were examined by multigroup latent class analysis. Results Five distinct classes were identified: uniformly preferring, uniformly rejecting, uniformly uncertain, and favoring nutritional support but rejecting or uncertain about other treatments. Class probability significantly decreased from 29.3% to 23.7% for the uniformly rejecting class, remained largely unchanged for the uniformly preferring (16.9%–18.6%), and favoring nutritional support but rejecting (37.1%–37.5%) or uncertain about other treatments (8.0%–10.4%) classes, but significantly increased from 7.0% to 11.5% for the uniformly uncertain class over time. Conclusion Family caregivers' LST preferences for terminally ill cancer patients are a heterogeneous construct and shifted from uniformly rejecting all LSTs toward greater uncertainty. Surrogate EOL-care decision making may be facilitated by earlier and thorough assessments of caregivers' LST preferences and tailoring interventions to the unique needs of caregivers in each class identified in this study.

Aggressive life-sustaining treatments have the potential to be continued beyond benefit, but have seldom been systematically/nationally explored in pediatric cancer patients. Furthermore, factors predisposing children dying of cancer to receive life-sustaining treatments at end of life (EOL) have never been investigated in a population-based study. This population-based study explored determinants of receiving life-sustaining treatments in pediatric cancer patients' last month of life. For this retrospective cohort study, we used administrative data on 1603 Taiwanese pediatric cancer patients who died in 2001 to 2010. Individual patient-level data were linked with encrypted identification numbers from the National Register of Deaths Database, Cancer Registration System database, National Health Insurance claims datasets, and Database of Medical Care Institutions Status. Life-sustaining treatments included intensive care unit (ICU) care, cardiopulmonary resuscitation (CPR), and mechanical ventilation. Associations of patient, physician, hospital, and regional factors with receiving ICU care, CPR, and mechanical ventilation in the last month of life were evaluated by multilevel generalized linear mixed models. In their last month of life, 22.89%, 46.48%, and 61.45% of pediatric cancer patients received CPR, mechanical ventilation, and ICU care, respectively, with no significant decreasing trends from 2001 to 2010. Patients were more likely to receive all three identified life-sustaining treatments at EOL if they were diagnosed with a hematologic malignancy or a localized disease, died within 1 year of diagnosis, and received care from a pediatrician. Receipt of ICU care or mechanical ventilation increased with increasing EOL-care intensity of patients' primary hospital, whereas use of mechanical ventilation decreased with increasing quartile of hospice beds in the patients' primary hospital region. Taiwanese pediatric cancer patients received aggressive life-sustaining treatments in the month before death. Healthcare policies and interventions should aim to help pediatricians treating at-risk pediatric cancer patients and hospitals with a tendency to provide aggressive EOL treatments to avoid the expense of life-sustaining treatments when chance of recovery is remote and to devote resources to care that produces the greatest benefits for children, parents, and society.