'I secretly wish. . .' Caregivers' expression of wish for death of persons with severe dementia.

BACKGROUND: Qualitative evidence suggests that caregivers may express a wish for death of persons with severe dementia (PwSD). No study has assessed the extent to which it happens, stability of this wish over time and the factors associated with it. OBJECTIVES: We examined caregivers' wish for death of PwSDs overtime and the factors associated with this wish. METHODS: 215 caregivers of community dwelling PwSDs were surveyed every 4 months for 2 years. Using the mixed-effects multinomial regression model, we assessed the PwSD and caregiver factors associated with caregivers' wish for PwSDs' death. RESULTS: At baseline, 27% caregivers expressed a wish for PwSDs' life to end sooner. Overall, 43% of the caregivers expressed a wish for PwSDs' death at least once during the study period and 11% expressed it consistently. Caregivers' perception of PwSDs' lower quality of life (RRR: 1.05, 95% CI: 1.00, 1.10), higher functional dependency (RRR: 1.1, 95% CI: 1.01, 1.21), eating difficulty (RRR: 2.25, 95% CI: 1.26, 4.04) and suffering (RRR: 1.92, 95% CI: 1.05, 3.52) were associated with this wish. Caregivers who were emotionally close to PwSDs were less likely (RRR: 0.25, 95% CI: 0.11, 0.55) while those who understood that dementia is a terminal illness were more likely (RRR: 2.01, 95% CI: 1.03, 3.92) to express this wish. CONCLUSION: Caregivers' wish for PwSDs' death changed over time and was primarily driven by their perception of PwSDs' poor well-being and awareness of their illness being terminal, indicating a need for increased support in this challenging caregiving context.

Trajectories of negative and positive experiences of caregiving for older adults with severe dementia: application of group-based multi-trajectory modelling.

BACKGROUND: Family caregivers of older adults with severe dementia have negative and positive experiences over the course of caregiving. We aimed to delineate joint trajectories (patterns over time) for negative and positive experiences, identify risk factors associated with membership of joint trajectories, and ascertain the association between joint trajectories and caregivers' outcomes after the death of the older adult. METHODS: Two hundred fifteen family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 2 years, and 6 months after the death of the older adult. Using group-based multi trajectory modelling, we delineated joint trajectories for positive (Gain in Alzheimer Care Instrument) and negative (sub-scales of modified Caregiver Reaction Assessment) experiences of caregiving. RESULTS: We identified four joint trajectories - "very high positive, low negative" (23% of caregivers), "high positive, moderate negative" (28%), "very high positive, moderate negative" (28%), and "high positive, high negative" (21%). Caregivers of older adults with more behavioural symptoms, and who did not receive strong emotional support from family were more likely to have "high positive, moderate negative" or "very high positive, moderate negative" trajectory. Compared to caregivers with "very high positive, low negative" trajectory, caregivers with "very high positive, moderate negative" or "high positive, high negative" trajectories expressed greater grief and distress, with the latter also having lower spiritual well-being and quality of life at 6 months after the death of the older adult. CONCLUSION: The caregiving experiences for older adults with severe dementia vary between caregivers but remain stable over time. Modifiable risk factors identified for trajectories involving negative experiences of caregiving may be targeted in future interventions to improve the experience of caregiving and caregiver quality of life and distress after the death of the older adult. TRIAL REGISTRATION: http://www. CLINICALTRIALS: gov (NCT03382223).

Caregiver coping mediates the relationship between caregivers' understanding of dementia as terminal and their distress.

We assessed which coping strategies (problem-focused, emotion-focused, dysfunctional) mediate the association between caregivers' understanding of dementia as terminal and their distress. A total of 215 caregivers of community-dwelling persons with severe dementia were surveyed every 4 months over 3 years. A generalized structural equation model was used to test mediation. Caregivers who correctly understood dementia as terminal and those unsure (vs incorrect), experienced more distress (correct: ß [95% confidence interval (CI)]: 0.80 [0.00 to 1.60]; unsure: 0.95 [0.04 to 1.87]). Caregivers with correct understanding of dementia as terminal (vs incorrect) employed more dysfunctional (2.01 [0.60 to 3.42]) and problem-focused coping strategies (2.56 [0.08 to 5.05]). Although dysfunctional and problem-focused coping (associated with higher distress) mediated the positive association between caregivers' understanding that dementia is terminal and their distress, emotion-focused coping (associated with lower distress) did not offset this relationship. Results suggest that terminal illness disclosure to caregivers should be accompanied by interventions to promote emotion-focused coping strategies. Highlights Caregivers who understood dementia as terminal experienced more distress. Dysfunctional and problem-focused coping mediated the positive relationship between terminal illness understanding and caregiver distress. Emotion-focused coping did not offset this relationship.

A prospective cohort study of decision-making role preferences of patients with advanced cancer and their family caregivers.

BACKGROUND: This study aimed to examine (1) the evolution of patients-caregiver dyad decision-making role preferences over 3 years and the predictors of these preferences; and (2) discordance in decision-making role preferences among dyads. METHODS: A total of 311 patients with advanced solid cancer and their caregivers in Singapore reported their preferences for decision-making roles every 3 months. The predictors for decision-making role preferences among dyads were identified via the actor-partner interdependence framework using a mixed-effect ordered logistic model. RESULTS: The proportion of patients and caregivers preferring patient-led decision-making was higher at the end of third year compared to baseline (patients: 40% vs. 20%, p value <.01; caregivers: 33% vs. 21%, p value = .03). Patients with female (odds ratio [OR], 1.74; p value <.01) and older (1-year OR, 1.02; p value <.01) caregivers and younger patients (1-year OR, 0.97; p value <.01) preferred higher involvement in decision-making. Caregivers with tertiary education (vs. lower education) (OR, 1.59; p value = .02) and those who accurately understood patients' treatment goals (OR, 1.37; p value = .01) preferred greater patient involvement in decision-making. Conversely, caregivers of female patients (OR, 0.68; p value = .03) and younger patients (1-year OR, 0.98; p value <.01) preferred lesser patient involvement in decision-making. The proportion of patient-caregiver dyads with discordance in preferred decision-making was lower at the end of the third year (51%) compared to baseline (68%) (p value <.01). CONCLUSION: Despite a reduction in the proportion of dyads with discordance toward the end-of-life, the percentage with discordance remained high throughout the illness trajectory. Interventions facilitating open communication between dyads should be pursued in efforts to decrease dyadic discordance.

Asthma exacerbations are associated with a decline in lung function: a longitudinal population-based study.

RATIONALE: Progressive lung function (LF) decline in patients with asthma contributes to worse outcomes. Asthma exacerbations are thought to contribute to this decline; however, evidence is limited with mixed results. METHODS: This historical cohort study of a broad asthma patient population in the Optimum Patient Care Research Database, examined asthma patients with 3+eligible post-18th birthday peak expiratory flow rate (PEF) records (primary analysis) or records of forced expiratory flow in 1 s (FEV1) (sensitivity analysis). Adjusted linear growth models tested the association between mean annual exacerbation rate (AER) and LF trajectory. RESULTS: We studied 1 09 182 patients with follow-up ranging from 5 to 50 years, of which 75 280 had data for all variables included in the adjusted analyses. For each additional exacerbation, an estimated additional -1.34 L/min PEF per year (95% CI -1.23 to -1.50) were lost. Patients with AERs >2/year and aged 18-24 years at baseline lost an additional -5.95 L/min PEF/year (95% CI -8.63 to -3.28) compared with those with AER 0. These differences in the rate of LF decline between AER groups became progressively smaller as age at baseline increased. The results using FEV1 were consistent with the above. CONCLUSION: To our knowledge, this study is the largest nationwide cohort of its kind and demonstrates that asthma exacerbations are associated with faster LF decline. This was more prominent in younger patients but was evident in older patients when it was related to lower starting LF, suggesting a persistent deteriorating phenotype that develops in adulthood over time. Earlier intervention with appropriate management in younger patients with asthma could be of value to prevent excessive LF decline.

Barriers to advance care planning among patients with advanced serious illnesses: A national survey of health-care professionals in Singapore.

OBJECTIVES: To assess the barriers that health-care professionals (HCPs) face in having advance care planning (ACP) conversations with patients suffering from advanced serious illnesses and to provide care consistent with patients' documented preferences. METHODS: We conducted a national survey of HCPs trained in facilitating ACP conversations in Singapore between June and July 2021. HCPs responded to hypothetical vignettes about a patient with an advanced serious illness and rated the importance of barriers (HCP-, patient-, and caregiver-related) in (i) conducting and documenting ACP conversations and (ii) providing care consistent with documented preferences. RESULTS: Nine hundred eleven HCPs trained in facilitating ACP conversations responded to the survey; 57% of them had not facilitated any in the last 1 year. HCP factors were reported as the topmost barriers to facilitating ACP. These included lack of allocated time to have ACP conversations and ACP facilitation being time-consuming. Patient's refusal to engage in ACP conversations and family experiencing difficulty in accepting patient's poor prognosis were the topmost patient- and caregiver-related factors. Non-physician HCPs were more likely than physicians to report being fearful of upsetting the patient/family and lack of confidence in facilitating ACP conversations. About 70% of the physicians perceived caregiver factors (surrogate wanting a different course of treatment and family caregivers being conflicted about patients' care) as barriers to providing care consistent with preferences. SIGNIFICANCE OF RESULTS: Study findings suggest that ACP conversations be simplified, ACP training framework be improved, awareness regarding ACP among patients, caregivers, and general public be increased, and ACP be made widely accessible.

Three distinct symptom profiles among older adults with severe dementia: A latent class analysis.

OBJECTIVES: Older adults with severe dementia experience multiple symptoms at the end of life. This study aimed to delineate distinct symptom profiles of older adults with severe dementia and to assess their association with older adults' and caregiver characteristics and 1-year mortality among older adults. METHODS: We used baseline data from a cohort of 215 primary informal caregivers of older adults with severe dementia in Singapore. We identified 10 indicators representing physical, emotional, and functional symptoms, and responsive behaviors, and conducted latent class analysis. We assessed the association between delineated older adults' symptom profiles and their use of potentially burdensome health-care interventions in the past 4 months; older adults' 1-year mortality; and caregiver outcomes. RESULTS: We delineated 3 profiles of older adults - primarily responsive behaviors (Class 1; 33%); physical and emotional symptoms with responsive behaviors (Class 2; 20%); and high functional deficits with loss of speech and eye contact (Class 3; 47%). Classes 2 and 3 older adults were more likely to have received a potentially burdensome intervention for symptoms in the past 4 months and have a greater hazard for 1-year mortality. Compared to Class 1, caregivers of Class 2 older adults were more likely to experience adverse caregiver outcomes, that is, higher distress, impact on schedule and health, anticipatory grief, and coping and lower satisfaction with care received (p<0.01 for all). SIGNIFICANCE OF RESULTS: The 3 delineated profiles of older adults can be used to plan or optimize care plans to effectively manage symptoms of older adults and improve their caregivers' outcomes.

A prospective cohort study assessing aggressive interventions at the end-of-life among patients with solid metastatic cancer.

BACKGROUND: Many patients with a solid metastatic cancer are treated aggressively during their last month of life. Using data from a large prospective cohort study of patients with an advanced cancer, we aimed to assess the number and predictors of aggressive interventions during last month of life among patients with solid metastatic cancer and its association with bereaved caregivers' outcomes. METHODS: We used data of 345 deceased patients from a prospective cohort study of 600 patients. We surveyed patients every 3 months until death for their physical, psychological and functional health, end-of-life care preference and palliative care use. We surveyed their bereaved caregivers 8 weeks after patients' death regarding their preparedness about patient's death, regret about patient's end-of-life care and mood over the last week. Patient data was merged with medical records to assess aggressive interventions received including hospital death and use of anti-cancer treatment, more than 14 days in hospital, more than one hospital admission, more than one emergency room visit and at least one intensive care unit admission, all within the last month of life. RESULTS: 69% of patients received at least one aggressive intervention during last month of life. Patients hospitalized during the last 2-12 months of life, male patients, Buddhist or Taoist, and with breast or respiratory cancer received more aggressive interventions in last month of life. Patients with worse functional health prior to their last month of life received fewer aggressive interventions in last month of life. Bereaved caregivers of patients receiving more aggressive interventions reported feeling less prepared for patients' death. CONCLUSION: Findings suggest that intervening early in the sub-group of patients with history of hospitalization prior to their last month may reduce number of aggressive interventions during last month of life and ultimately positively influence caregivers' preparedness for death during the bereavement phase. TRIAL REGISTRATION: NCT02850640 .

Experiences with health care practitioners among advanced cancer patients and their family caregivers: A longitudinal dyadic study.

BACKGROUND: Assessing patient and caregiver experiences with care is central to improving care quality. The authors assessed variations in the experiences of advanced cancer patients and their caregivers with physician communication and care coordination by patient and caregiver factors. METHODS: The authors surveyed 600 patients with a stage IV solid malignancy and 346 caregivers every 3 months for more than 2 years. Patients entered the cohort any time during their stage IV trajectory. The analytic sample was restricted to patient-caregiver dyads (n = 299). Each survey assessed patients' experiences with physician communication and care coordination; patients' symptom burden; caregivers' quality of life; and patients' and caregivers' anxiety, financial difficulties, and perceptions of treatment goals. An actor-partner interdependence framework was used for analysis. RESULTS: Patients reported better physician communication (average marginal effect [AME], 6.04; 95% confidence interval [CI], 3.82 to 8.26) and care coordination (AME, 8.96; 95% CI, 6.94 to 10.97) than their caregivers. Patients reported worse care coordination when they (AME, -0.56; 95% CI, -1.07 to -0.05) or their caregivers (AME, -0.58; 95% CI, -0.97 to -0.19) were more anxious. Caregivers reported worse care coordination when they were anxious (AME, -1.62; 95% CI, -2.02 to -1.23) and experienced financial difficulties (AME, -2.31; 95% CI, -3.77 to -0.86). Correct understanding of the treatment goal (vs being uncertain) was associated with caregivers reporting physician communication as better (AME, 3.67; 95% CI, 0.49 to 6.86) but with patients reporting it as worse (AME, -3.29; 95% CI, -6.45 to -0.14). CONCLUSIONS: Patients' and caregivers' reports of physician communication and care coordination vary with aspects of their own and each other's well-being and with their perceptions of treatment goals. These findings may have implications for improving patients' and caregivers' reported experiences with health care practitioners.

A Prospective Cohort Study of Stability in Preferred Place of Death Among Patients With Stage IV Cancer in Singapore.

BACKGROUND: Advance care planning (ACP) involves documentation of patients' preferred place of death (PoD). This assumes that patients' preferred PoD will not change over time; yet, evidence for this is inconclusive. We aimed to assess the extent and correlates of change in patients' preferred PoD over time. MATERIALS AND METHODS: Using data from a cohort study of patients with advanced cancer in Singapore, we analyzed preferred PoD (home vs institution including hospital, hospice, and nursing home vs unclear) among 466 patients every 6 months for a period of 2 years. At each time point, we assessed the proportion of patients who changed their preferred PoD from the previous time point. Using a multinomial logistic regression model, we assessed patient factors (demographics, understanding of disease stage, ACP, recent hospitalization, quality of life, symptom burden, psychologic distress, financial difficulty, prognosis) associated with change in their preferred PoD. RESULTS: More than 25% of patients changed their preferred PoD every 6 months, with no clear trend in change toward home or institution. Patients psychologically distressed at the time of the survey had increased likelihood of changing their preferred PoD to home (relative risk ratio [RRR], 1.02; 95% CI, 1.00-1.05) and to an institution (RRR, 1.06; 95% CI, 1.02-1.10) relative to no change in preference. Patients hospitalized in the past 6 months were more likely to change their preferred PoD to home (RRR, 1.56; 95% CI, 1.07-2.29) and less likely to change to an institution (RRR, 0.50; 95% CI, 0.28-0.88) relative to no change in preference. CONCLUSIONS: The present study provides evidence of instability in the preferred PoD of patients with advanced cancer. ACP documents need to be updated regularly to ensure they accurately reflect patients' current preference.

International severe asthma registry (ISAR): protocol for a global registry.

BACKGROUND: Severe asthma exerts a disproportionately heavy burden on patients and health care. Due to the heterogeneity of the severe asthma population, many patients need to be evaluated to understand the clinical features and outcomes of severe asthma in order to facilitate personalised and targeted care. The International Severe Asthma Registry (ISAR) is a multi-country registry project initiated to aid in this endeavour. METHODS: ISAR is a multi-disciplinary initiative benefitting from the combined experience of the ISAR Steering Committee (ISC; comprising 47 clinicians and researchers across 29 countries, who have a special interest and/or experience in severe asthma management or establishment and maintenance of severe asthma registries) in collaboration with scientists and experts in database management and communication. Patients (≥18 years old) receiving treatment according to the 2018 definitions of the Global Initiative for Asthma (GINA) Step 5 or uncontrolled on GINA Step 4 treatment will be included. Data will be collected on a core set of 95 variables identified using the Delphi method. Participating registries will agree to provide access to and share standardised anonymous patient-level data with ISAR. ISAR is a registered data source on the European Network of Centres for Pharmacoepidemiology and Pharmacovigilance. ISAR's collaborators include Optimum Patient Care, the Respiratory Effectiveness Group (REG) and AstraZeneca. ISAR is overseen by the ISC, REG, the Anonymised Data Ethics & Protocol Transparency Committee and the ISAR operational committee, ensuring the conduct of ethical, clinically relevant research that brings value to all key stakeholders. CONCLUSIONS: ISAR aims to offer a rich source of real-life data for scientific research to understand and improve disease burden, treatment patterns and patient outcomes in severe asthma. Furthermore, the registry will provide an international platform for research collaboration in respiratory medicine, with the overarching aim of improving primary and secondary care of adults with severe asthma globally.

Caregivers' Burden and Anticipatory Grief Increases Acute Health Care Use in Older Adults with Severe Dementia.

OBJECTIVES: To assess the bidirectional association of caregivers' burden and anticipatory grief with acute health care use (inpatient or emergency admission) among older adults with severe dementia. DESIGN: Prospective cohort. SETTING AND PARTICIPANTS: A total of 215 family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 3 years (up to 10 surveys). We measured caregiver burden using the Caregiver Reaction Assessment scale and anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form. METHODS: Using separate multivariable mixed-effects logistic regressions, controlling for relevant confounders, we assessed the association of caregiver burden and anticipatory grief (independent variables measured at time t) with older adults' acute health care use in the next 4 months (outcome measured at time t + 1). We also performed separate multivariable mixed-effects linear regressions to assess the association of older adults' acute health care use in the past 4 months (independent variable measured at time t) with caregiver burden and anticipatory grief (outcomes measured at time t). RESULTS: At baseline, 33% of the older adults had an inpatient or emergency admission in the past 4 months. Regression results showed that higher caregiver burden [odds ratio (OR), 1.58; 95% CI, 1.15-2.16] and anticipatory grief (OR, 1.02; 95% CI, 1.00-1.04) significantly increased the likelihood of older adults experiencing acute health care use in the next 4 months. However, older adults' acute health care use in the past 4 months did not significantly change their caregivers' burden or anticipatory grief. CONCLUSIONS AND IMPLICATIONS: Higher caregiver burden and anticipatory grief increase the likelihood of older adults having acute health care use. Addressing caregivers' well-being has implications for reducing acute health care use in older adults and the economic burden of severe dementia.

Do advanced cancer patients and their caregivers agree on preferred place of patient's death?-a prospective cohort study of patient-caregiver dyads.

BACKGROUND: Greater patient-caregiver concordance for preferred place of death can increase the chances of patients dying at their preferred place, thus improving quality of life at end-of-life (EOL). We aimed to assess changes in and predictors of patient-caregiver concordance in preference for home death at EOL during the last 3 years of life of patients with advanced cancer. METHODS: We used data from the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study of patients with stage IV solid cancer. We interviewed patients and their caregivers every 4 months to assess their preference for home death (for patient), and patient (symptom burden, inpatient usage, financial difficulties) and caregiver (psychosocial distress, spiritual wellbeing, competency and perceived lack of family support) characteristics. We used data from patients' last 3 years of life. We used multivariable multinomial logistic regressions to predict dyad concordance for preference for home death. RESULTS: A total of 227 patient-caregiver dyads were analyzed. More than half of the patient-caregiver dyads observations were concordant in their preference for home death (54%). Concordance for home death declined closer to death (from 68% to 44%). Concordant dyads who preferred home death were less likely to include older patients [relative risk ratio, 0.97; P=0.03]. Dyads who preferred a non-home death (hospital, hospice, nursing home, unsure or others) were more likely to include patients with greater symptom burden (1.08; P=0.007) and with spousal caregivers (2.59; P=0.050), and less likely to include caregivers with greater psychosocial distress (0.90; P=0.003) and higher spiritual wellbeing (0.92; P=0.007). CONCLUSIONS: This study provides evidence of the dynamic changes in preference for home death among patient-caregiver dyads during last 3 years of patients' life. Understanding the EOL needs of older patients, optimizing home-based symptom control and better caregiver support are recommended to increase likelihood of dyad concordance for home death.

Prognostic understanding among advanced heart failure patients and their caregivers: A longitudinal dyadic study.

OBJECTIVES: To examine heart failure patients' and caregivers' prognostic understanding (PU) over time, and patient and caregiver factors associated with their own and each other's PU. METHODS: We used longitudinal dyadic data from Singapore, involving surveys with 95 heart failure patient-caregiver dyads every 4 months for up to 4 years. We assessed the association of PU with patient health status, caregiver psychological distress and caregiving hours using random effects multinomial logistic models, controlling for patient and caregiver characteristics. RESULTS: At baseline, half of patients and caregivers reported correct PU. Patient and caregiver variables were associated with their own and each other's PU. Patients with poorer functional well-being were less likely to report correct PU [Average Marginal Effects (95 % CI) 0.008 (0.002, 0.015)] versus incorrect PU. Greater caregiver psychological distress was associated with a lower likelihood of caregivers reporting a correct PU [- 0.008 (-0.014, -0.002)]. Higher caregiving hours reduced the likelihood of patients reporting correct [- 0.002 (-0.003, -0.001)] and increased the likelihood of patients reporting uncertain [0.001 (0, 0.002)] PU. CONCLUSIONS: We found PU among patients and caregivers was influenced by their own and each other's experience. Our findings highlight the importance of ongoing communication to enhance PU of patients and caregivers.

Multifactorial risk factors for hospital readmissions among patients with symptoms of advanced heart failure.

AIMS: Economic burden of heart failure is attributed to hospital readmissions. Previous studies assessing risk factors for readmissions have focused on single group of risk factors, were limited to 30-day readmissions, or did not account for competing risk of mortality. This study investigates the biological, socio-economic, and behavioural risk factors predicting hospital readmissions while accounting for the competing risk of mortality. METHODS AND RESULTS: In this prospective cohort study, we recruited 250 patients hospitalized with symptoms of advanced heart failure [New York Heart Association (NYHA) Class III and IV] between July 2017 and April 2019. We analysed their baseline survey data and their hospitalization records over the next 4.5 years (July 2017 to January 2022). We used a joint-frailty model to determine the multifactorial risk factors for all-cause and unplanned hospital readmissions and mortality. At the time of recruitment, patients' mean (SD) age was 66 (12) years, majority being male (72%) and NYHA class IV (68%) with reduced ejection fraction (72%). 87% of the patients had poor self-care behaviours, 51% had diabetes and 56% had weak grip strength. Within 2 years of a hospital admission, 74% of the patients had at least one readmission. Among all readmissions during follow-up, 68% were unplanned. Results from the multivariable regression analysis shows that the independent risk factors for hospital readmissions were biologic-weak grip strength [hazard ratio (95% CI): 1.59 (1.06, 2.13)], poor functional status [1.79 (0.98, 2.61)], diabetes [1.42 (0.97, 1.86)]; behavioural-poor self-care [1.66 (0.84, 2.49)], and socio-economic-preference for maximal life extension at high cost for those with high education [1.98 (1.17, 2.80)]. Risk factors for unplanned hospital readmissions were similar. A higher hospital readmission rate increased the risk of mortality [1.86 (1.23, 2.50)]. Other risk factors for mortality were biologic-weak grip strength [3.65 (0.57, 6.73)], diabetes [2.52 (0.62, 4.42)], socio-economic-lower education [2.45 (0.37, 4.53)], and being married [2.53 (0.37, 4.69)]. Having a private health insurance [0.40 (0.08, 0.73)] lowered the risk for mortality. CONCLUSIONS: Risk factors for hospital readmissions and mortality are multifactorial. Many of these factors, such as weak grip strength, diabetes, poor self-care behaviours, are potentially modifiable and should be routinely assessed and managed in cardiac clinics and hospital admissions.

Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life.

Importance: Understanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences. Objectives: To investigate the patterns of goals of care among patient-caregiver dyads over the last years of the patient's life and the associations of the goals of care with patient-caregiver characteristics. Design, Setting, and Participants: This prospective cohort study of 210 patient-caregiver dyads involved surveys every 3 months from July 8, 2016, until the patient's death or February 28, 2022. Data from the last 2 years of the patients' lives were analyzed. Dyads, which comprised patients with stage IV solid cancer and their caregivers, were recruited from outpatient clinics at 2 major cancer centers in Singapore. Main Outcomes and Measures: Goals of care were examined via the tradeoffs between life extension and symptom management and between life extension and cost containment. The actor-partner interdependence framework was implemented using mixed-effects linear regressions. Results: This study included 210 dyads (patients: mean [SD] age, 62.6 [10.5] years; 108 men [51.4%]; caregivers: mean [SD] age, 49.4 [14.6] years; 132 women [62.9%]). On average, 34% of patients (264 of 780 observations; range, 23%-42%) and 29% of caregivers (225 of 780 observations; range, 20%-43%) prioritized symptom management over life extension, whereas 24% of patients (190 of 780 observations; range, 18%-32%) and 19% of caregivers (148 of 780 observations; range, 8%-26%) prioritized life extension. Between cost containment and life extension, on average, 28% of patients (220 of 777 observations; range, 22%-38%) and 17% of caregivers (137 of 780 observations; range, 10%-25%) prioritized cost containment, whereas 26% of patients (199 of 777 observations; range, 18%-34%) and 35% of caregivers (271 of 780 observations; range, 25%-45%) prioritized life extension. Goals of care did not change as patients approached death. Patients prioritized symptom management if they experienced higher symptom burden (average marginal effect [SE], 0.04 [0.01]), worse spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and accurate (vs inaccurate) prognostic awareness (average marginal effect [SE], 0.40 [0.18]) and if their caregivers reported accurate prognostic awareness (average marginal effect [SE], 0.53 [0.18]), lower impact of caregiving on finances (average marginal effect [SE], -0.28 [0.08]), and poorer caregiving self-esteem (average marginal effect [SE], -0.48 [0.16]). Compared with patients, caregivers expressed lower preferences for cost containment (average marginal effect [SE], -0.63 [0.09]). Patients prioritized cost containment if they were older (average marginal effect [SE], 0.03 [0.01]), had higher symptom burden (average marginal effect [SE], 0.04 [0.01]), had poorer spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and their caregivers reported poorer caregiving self-esteem (average marginal effect [SE], -0.51 [0.16]) and more family support (average marginal effect [SE], -0.30 [0.14]). Conclusions and Relevance: In this cohort study of patient-caregiver dyads, findings suggested the importance of interventions aimed at reducing discordance in goals of care between patients and caregivers and helping them develop realistic expectations to avoid costly, futile treatments.

Caregiver-reported use of physical restraints among community-dwelling older adults with severe dementia in Singapore.

BACKGROUND: Older adults with severe dementia are at increased risk of being physically restrained in nursing homes and acute care settings, but little is known about restraint use among those cared for at home. This study explores caregiver-reported use of restraints among community-dwelling older adults with severe dementia. METHODS: Using cross-sectional data from 215 family caregivers, we describe restraint use among older adults with severe dementia living at home. We then use multivariable logistic regression to identify factors associated with restraint use. RESULTS: Nearly half (47%) of caregivers reported on older adults who had been subject to restraints. Most caregivers reporting restraint use suggested safety reasons, such as prevention of falls (68%), wandering (30%), and removal of catheters or feeding tubes (29%); and 44% indicated doctors or other health care providers were involved in the decision to restrain. Feeding tubes (OR = 4.16, 95% CI: 1.27-13.59) and physically aggressive agitation behaviors (OR = 1.93, 95% CI: 1.09-3.40) were associated with higher odds of restraint use among older adults with severe dementia. Caregivers who received strong emotional support from friends (OR = 0.45, 95% CI: 0.21-0.95) were less likely to report restraint use while serving as a caregiver to others (OR = 2.77, 95% CI: 1.36-5.63) increased the odds of restraint use. CONCLUSIONS: The pervasiveness of restraint use is concerning and suggests a lack of evidence-based guidance and support for both caregivers and healthcare providers to prevent restraint use among older adults with severe dementia cared for at home.

Caregiver-Reported Roles in Treatment Decision Making in Advanced Cancer and Associated Caregiving Burden and Psychological Distress: A Longitudinal Study.

OBJECTIVE: To longitudinally examine caregiver-reported treatment decision-making roles and to investigate the associations of these roles with caregiver burden, caregiving esteem, caregiver anxiety, and depression. METHODS: 281 caregivers of patients with stage IV solid cancers were recruited from outpatient clinics in Singapore. Caregivers were eligible if they were aged ≥21 y, primary informal caregiver, and involved in treatment decision making. We used 3 y of longitudinal data. The decision-making roles were grouped into 4 categories: no family involvement, patient/physician-led, joint, and family-led/alone decision making. Mixed-effects linear regressions were used to assess associations between decision-making roles and caregiver outcomes. RESULTS: On average, 72% of caregivers reported family involvement in decision making. Compared with baseline, a higher proportion of caregivers at the 36-mo follow-up reported no family involvement (from 23% to 34%, P = 0.05) and patient/physician-led decision making (from 22% to 34%, P = 0.02), while a lower proportion reported family-led/alone (from 19% to 7%, P = 0.01) decision making. Compared with family-led/alone decision making, caregivers reporting no family involvement reported lower impact on finances (-0.15 [-0.28, -0.01], P = 0.03) while caregivers who reported patient/physician-led decision making reported lower impact on schedule and health (-0.12 [-0.20, -0.03], P = 0.01), and finances (-0.15 [-0.28, -0.03], P = 0.02), and lower anxiety (-0.69 [-1.17, -0.22], P < 0.01), and depressive symptoms (-0.69 [-1.12, -0.26], P < 0.01). Caregivers who reported joint decision making reported higher caregiving esteem (0.07 [0.01, 0.14], P = 0.02). CONCLUSIONS: Higher family involvement in decision making was associated with higher caregiver burden and psychological distress. Help should be given so that family caregivers can support patient decision-making in a meaningful way. HIGHLIGHTS: Compared with baseline, a lower proportion of caregivers at the 36-mo follow-up reported family-led or family-alone decision making, and a higher proportion of caregivers reported patient-led or physician-led decision making.Higher levels of family involvement in decision making were associated with burdens on caregivers' daily life, health, and finances and increased caregiver anxiety and depression.Support must be given so that family members can contribute to making medical decisions in a rewarding manner.

Prognostic awareness and its association with health outcomes in the last year of life.

BACKGROUND: Little research has examined changes in prognostic awareness (PA) in the last year of life and the extent PA change was associated with anxiety, depression, and spiritual well-being among metastatic cancer patients. METHODS: Two surveys were administered in the last year of life to 176 conveniently sampled Singaporean patients with stage 4 solid cancers. PA was assessed by asking patients whether they were aware that their treatments were unlikely to cure their cancer. Multivariable linear regression models were used to investigate the association of PA change with anxiety, depression, and spiritual well-being. RESULTS: The proportion of patients with accurate PA increased (39.2%-45.5%; p < 0.05) from the second-last assessment to the last assessment before death. Those with inaccurate PA decreased (26.1%-20.4%; p < 0.05) while a third of patients remained uncertain at both assessments (34.7% and 34.1%). Compared to patients with inaccurate PA at both assessments, patients who reported accurate PA at both assessments reported worsened anxiety (ß = 2.08), depression (ß = 3.87), and spiritual well-being (ß = -4.45) while patients who reported being uncertain about their prognosis at both assessments reported worsened spiritual well-being (ß = - 6.30) at the last assessment before death (p < 0.05 for all). CONCLUSIONS: Interventions should dually focus on decreasing prognostic uncertainty at the end-of-life while minimising the psychological and spiritual sequelae associated with being prognostically aware. More research is needed to clarify the causes of prognostic uncertainty.

Variation in Patient-Reported Decision-Making Roles in the Last Year of Life among Patients with Metastatic Cancer: A Longitudinal Study.

OBJECTIVE: We investigated the variation in patient-reported decision-making roles in the past year of life among patients with metastatic solid cancer and the associations of these roles with patient quality of life and perceived quality of care. METHODS: We used the last year of life data of 393 deceased patients from a prospective cohort study. Patients reported their decision-making roles, quality of life (emotional well-being, spiritual well-being, and psychological distress) and perceived quality of care (care coordination and physician communication) every 3 months until death. We used mixed effects linear regressions to investigate the associations of decision-making roles with patients' quality of life and perceived quality of care. RESULTS: The most reported roles, on average, were patient-led (37.9%) and joint (23.4%; with physicians and/or family caregivers) decision making, followed by no patient involvement (14.8%), physician/family-led (12.9%), and patient alone (11.0%) decision making. Patient level of involvement in decision making decreased slightly as death approached (P < 0.05). Compared with no patient involvement, joint decision making was associated with better emotional well-being (ß [95% confidence interval] = 1.02 [0.24, 1.81]), better spiritual well-being (1.48 [0.01, 2.95]), lower psychological distress (-1.99 (-3.21, -0.77]), higher perceived quality of care coordination (5.04 [1.24, 8.85]), and physician communication (5.43 [1.27, 9.59]). Patient-led decision making was associated with better spiritual well-being (1.69 [0.24, 3.14]) and higher perceived quality of care coordination (6.87 [3.17, 10.58]) and physician communication (6.21 [2.15, 10.27]). CONCLUSION: Joint and patient-led decision-making styles were reported by 61% of the patients and were associated with better quality of life and quality of care. A decrease in the level of patient involvement over time indicates reliance on family and physicians as death approached. HIGHLIGHTS: Among patients with metastatic cancer, the level of patient involvement in decision making decreased slightly as death approached.Joint decision making of patients with their physicians and/or family caregivers and patient-led decision making were associated with better quality of life and perceived quality of care.Patients with metastatic cancer should be encouraged to be involved in decision making together with their physicians and/or family caregivers to potentially improve their end-of-life experience.