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.
Background: Cognitive prognostic awareness (PA) and emotional preparedness for a loved one's death are distinct but related phenomena. However, the distinction between these two concepts has not been studied in family caregivers.
Objective: To examine whether these two concepts are distinct by comparing their evolution and predictors over cancer patients' last year.
Methods: Agreement between emotional preparedness for death and cognitive PA was longitudinally evaluated for 309 family caregivers by percentages and kappa coefficients. Predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation.
Results: Agreement between family caregivers' emotional preparedness for death and cognitive PA decreased slightly (54.73%-43.64%) from 181-365 to 1-30 days before the patient's death, with kappa values (95% confidence interval) from -0.060 (-0.123 to 0.003) to 0.050 (-0.074 to 0.174), indicating poor agreement. Participants were more likely to report adequate emotional preparedness for death if they had financial sufficiency, more contact/communication with the patient, lower caregiving burden, and stronger perceived social support. Family caregivers were more likely to have accurate PA if they were 56-65 years old, the patient's adult child, and had more contact/communication with the patient and greater subjective caregiving burden.
Conclusions/Implications: Family caregivers' emotional preparedness for death and cognitive PA were distinct, as supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should facilitate family caregivers' accurate PA and cultivate their emotional preparedness for death by enhancing patient-family contact/communication and easing their caregiving burden to improve quality of end-of-life care.
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.
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 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 postloss 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 (P-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: GD 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.
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: 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 preparation for death. However, the distinction between these two concepts has never been investigated.
OBJECTIVE: To evaluate the distinction between death preparedness and accurate PA by examining their agreement over cancer patients' last year and the similarity of their predictors.
METHODS: For this secondary analysis of a longitudinal study of death preparedness for 277 cancer patients, 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 to 1-30 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. Healthcare 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.
BACKGROUND: 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.
OBJECTIVE: 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 (QOL) 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 (ß [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]).
CONCLUSIONS: 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. Healthcare professionals should not only cultivate accurate PA but also promote cancer patients' emotional preparedness for death, which may improve their psychological well-being.
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: 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 (ß, -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.
CONTEXT: Postloss depressive-symptom trajectories are heterogeneous and predicted by preloss psychosocial resources, but this evidence was from one old study on terminal cancer patients' caregivers 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 [SOC] and social support) were measured among 282 caregivers. Depressive symptoms were measured by the Center for Epidemiological Studies-Depression [CES-D] scale 1, 3, 6, 13, 18, and 24 months postloss (CES-D 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 2 years postloss, the endurance group never experienced severe depressive symptoms. Severe depressive symptoms lasted 6, 7-12, 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 1-year postloss. Preloss psychosocial resources predicted depressive-symptom trajectories for bereaved caregivers. Healthcare professionals can help caregivers adjust their bereavement by providing support to enhance their SOC and encouraging social contacts while they are providing end-of-life care.
PURPOSE: To examine the effectiveness of an advance care planning (ACP) 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 ACP 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' over-expectations of LST efficacy.
Background: Terminally ill cancer patients' worsening symptom distress and functional impairment may signal disease deterioration, thus facilitating their accurate prognostic awareness (PA). However, the joint roles played by symptom distress and functional impairment in association with cancer patients' accurate PA remain unexplored.
Methods: We used hierarchical generalized linear modeling to assess associations between our five identified worsening conjoint symptom-functional states and accurate PA in a convenience sample of 317 terminally ill cancer patients over their last six months.
Results: The majority of our participants (70.1%-76.3%) had accurate PA in their last six months. This proportion did not increase as death approached but varied significantly by the five identified distinct symptom-functional states. Participants in the four worst symptom-functional states (moderate/profound symptom distress with mild/profound functional impairment) had a higher likelihood of accurate PA than those in the best state (mild symptom distress with high functioning). Participants with severe or profound symptom distress (states 3 and 5) had a substantially higher likelihood of accurate PA than those with moderate symptom distress (states 2 and 4).
Conclusion/Clinical Implications: Terminally ill cancer patients' five distinct conjoint worsening symptom-functional states were differentially associated with their likelihood of accurate PA. Health care professionals should cultivate these patients' accurate PA when they are still free from severe symptom distress and functional impairment, effectively manage symptoms for those suffering from severe/profound symptom distress, and facilitate their psychological-spiritual adjustment to acknowledge their poor prognosis and the accompanying challenges of end-of-life care decisions to maximize quality of life and achieve a good death.
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 (LSTs) 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. Intervention effectiveness in facilitating accurate PA and reducing LSTs 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 (AOR [95% CI]: 2.04 [1.16-3.61], 1.94 [1.09-3.45], and 1.93 [1.16-3.21], respectively), but not 1-60 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.
CONCLUSIONS: Our intervention facilitated cancer patients' accurate PA early in their dying trajectory, reducing the risk of receiving CPR in the last month. Healthcare 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.
BACKGROUND: High-quality EOL care depends on thoroughly assessing terminally ill patients' preferences for end-of-life (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 (cardio-pulmonary resuscitation, intensive care unit care, chest compression, intubation with mechanical ventilation, intravenous nutrition, and tube feeding) in patients' last 6 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 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.
BACKGROUND: Family caregivers constitute a critical component of the end-of-life (EOL) 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.
OBJECTIVE: /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 2-4 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.
CLINICAL IMPLICATIONS: Targeting at-risk patient-caregiver dyads, rather than individuals, to adequately manage terminally ill cancer patients' symptom distress and functional impairment not only benefits patients, but also facilitates caregivers' psychological well-being and QOL while providing EOL caregiving.
BACKGROUND: Patient-caregiver concordance on end-of-life (EOL) care preferences is poor, but changes in this concordance have not been longitudinally explored as patient death approaches, potentially distorting the extent of concordance. Cross-sectional studies cannot disentangle whether the extent of concordance is facilitated or hindered by dyads' specific preferences, prognostic awareness, physical and psychological well-being, and quality of life, or whether these variables were enhanced or worsened by patient-caregiver concordance on EOL care preferences.
OBJECTIVE: To examine the evolution of and factors facilitating or hindering patient-caregiver concordance on life-sustaining treatment (LST) preferences over cancer patients' last six months.
DESIGN: Longitudinal study design.
METHODS/SUBJECTS: Patient-caregiver concordance on LST preference states (patterns) was examined among 215 cancer patient-caregiver dyads in patients' last six months by hidden Markov modeling. Concordance on LST preference states was determined by percent agreement and kappa coefficients. Predictors of concordance on LST preference states were tested by hierarchical generalized linear modeling with logistic regression, with concordance and time-varying, modifiable independent variables arranged in a distinct time sequence.
RESULTS: Patient-caregiver concordance on LST preference states was poor and improved only slightly over cancer patients' last six months. Concordance on LST preference states was significantly more likely in patients with greater physical symptom distress. Caregivers were more likely to concur with their relative's LST preference states if caregivers uniformly rejected all LSTs or accepted nutritional support while rejecting other aggressive LSTs for their relative.
DISCUSSION/CONCLUSION: Patient symptom distress and caregiver rejection of aggressive LSTs predicted greater patient-caregiver concordance on LST preference states in patients' last six months. To encourage patients and caregivers to discuss LST preferences, clinicians should facilitate caregivers' understanding of patients' LST preferences and LST efficacy at EOL and adjustment to their beloved's inevitable death when his/her physical symptoms still wax and wane, thus providing personalized and value-concordant EOL care for dying cancer patients.
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.
BACKGROUND: Quality of life (QOL) and psychological distress at end of life (EOL) heavily depend on symptom distress and functional impairment, which may not deteriorate synchronously at EOL.
OBJECTIVE/METHODS: Using multivariate hierarchical linear modeling (MHLM), we simultaneously evaluated the differential association of five previously identified, worsening conjoint symptom-functional states with QOL, anxiety symptoms, and depressive symptoms over 317 terminally ill cancer patients' last year of life. QOL, anxiety symptoms, and depressive symptoms were measured by the McGill Quality of Life Questionnaire and the Hospital Anxiety and Depression Scale, respectively.
RESULTS: QOL, anxiety symptoms, and depressive symptoms deteriorated significantly more for patients in the four worst symptom-functional states (states 2-5) than in the best state (state 1). QOL did not differ significantly among patients in states 2-5. However, patients in state 4 had significantly lower anxiety-symptom levels than patients in states 2, 3, and 5, whose anxiety-symptom levels did not differ significantly. In contrast, depressive-symptom levels differed significantly between participants in any two of the worst symptom-functional states, except between participants in states 3 and 5 as well as between those in states 2 and 4.
CONCLUSION: The five distinct symptom-functional states contributed to worsening QOL, anxiety symptoms, and depressive symptoms, but each was negatively and uniquely associated with psychological well-being in terminally ill cancer patients' last year of life.
CLINICAL IMPLICATIONS: The psychological well-being and QOL of high-risk patients in states 3 and 5 may be improved at EOL by targeting them with appropriate symptom-management interventions and facilitating their functioning.
CONTEXT/OBJECTIVES: Our study addressed important knowledge gaps about trajectories of distinct conjoint symptom-functional states, i.e., 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% confidence interval] 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 provide all stakeholders with guides for end-of-life care. Goals of end-of-life care should change towards palliative care and effective symptom management for patients with at least moderate symptom distress and substantial functional impairment.
CONTEXT: Terminally ill cancer patients do not engage in end-of-life (EOL) care discussions or do so only when death is imminent, despite guidelines for EOL care discussions early in their disease trajectory. Most studies on patient-reported EOL care discussions are cross sectional without exploring the evolution of EOL care discussions as death approaches. Cross-sectional studies cannot determine the direction of association between EOL care discussions and patients' prognostic awareness, psychological well-being, and quality of life (QOL).
OBJECTIVES/METHODS: We examined the evolution and associations of accurate prognostic awareness, functional dependence, physical and psychological symptom distress, and QOL with patient-physician EOL care discussions among 256 terminally ill cancer patients in their last six months by hierarchical generalized linear modeling with logistic regression and by arranging time-varying modifiable variables and EOL care discussions in a distinct time sequence.
RESULTS: The prevalence of physician-patient EOL care discussions increased as death approached (9.2%, 11.8%, and 18.3% for 91-180, 31-90, and 1-30 days before death, respectively) but only reached significance in the last month. Accurate prognostic awareness facilitated subsequent physician-patient EOL care discussions, whereas better patient-reported QOL and more anxiety symptoms hindered such discussions. The likelihood of EOL care discussions was not associated with levels of physical symptom distress, functional dependence, or depressive symptoms.
CONCLUSION: Physician-patient EOL care discussions for terminally ill Taiwanese cancer patients remain uncommon even when death approaches. Physicians should facilitate EOL care discussions by cultivating patients' accurate prognostic awareness early in their cancer trajectory when they are physically and psychologically competent, with better QOL, thus promoting informed and value-based EOL care decision making.