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Objective: To examine the association between a multi-item measure of religiousness and major depressive disorder (MDD) in bereaved family caregivers of patients with cancer., Design: A prospective longitudinal study of primary caregivers of consecutive patients (n = 175) with cancer enrolled in the largest hospice in Connecticut., Results: Caregivers with a high religiousness summary score were significantly less likely to have MDD at the 13-month follow-up interview (OR = 0.79, 95% CI: 0.68-0.91). This finding remained significant (OR = 0.74, 95% CI: 0.59-0.91) after adjustment for caregiver MDD at baseline, caregiver age, caregiver burden, and number of activities restricted due to caregiving roles., Conclusions: Family caregivers who reported greater religiousness at baseline had lower rates of depression in the 13-month follow up after their loss. Collaboration with religious support groups or community groups during bereavement could offer an effective mechanism for speeding the process of recovery for some caregivers.

Objective: Although more people are using hospice than ever before, the average length of hospice enrollment is decreasing. Little is known about the effect of hospice length of enrollment on surviving family caregivers. The authors examine the association between patient length of hospice enrollment and major depressive disorder (MDD) among the surviving primary family caregivers 13 months after the patient's death., Methods: The authors conducted a three-year longitudinal study of 175 primary family caregivers of patients with terminal cancer who consecutively enrolled in the participating hospice from October 1999 through September 2001. Interviews were conducted with the primary family caregiver when the patient first enrolled with hospice and again 13 months after the patient's death. The authors used multivariate logistic regression models to estimate caregivers' adjusted risk at 13 months postloss for MDD, assessed using the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (SCID)., Results: The effect of very short hospice length of enrollment (three days or less) compared with longer lengths of enrollment on caregiver MDD 13 months after their loss was nonsignificant in unadjusted analyses. The adjusted risk of MDD was significantly elevated for caregivers of patients who had very short hospice enrollments (adjusted odds ratio: 8.76, 95%confidence interval: 1.09-70.19) only after adjusting for baseline MDD, caregiver gender, caregiver age, kinship relationship to patient, caregiver education, caregiver chronic conditions, and caregiver burden. The adjustment for caregiver burden resulted in the greatest increase in odds ratio for very short hospice length of enrollment on risk of caregiver MDD 13 months after the loss., Conclusions: This study identifies a potential target group of family caregivers, characterized by hospice length of enrollment and several caregiver features, who might be most in need of mental health interventions.

Purpose: To examine changes in patients' and caregivers' understanding of prognosis with progression of the patient's illness., Subjects and Methods: Community-dwelling persons 60 years of age and older who were seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers were interviewed every 4 months and more frequently with a decline in the patient's status for up to one year. We examined responses to, "If you had to take a guess, how long do you think that (you/the patient) might have to live?" at baseline and at the interview closest to death., Results: Among 218 patients, 87 died within 1 year. At their initial interview 46% were uncertain about their life expectancy (LE) and 9% believed LE was 1 year or less; at their final interview, 55% were uncertain and 17% believed LE was 1 year or less. At the caregiver's initial interview, 29% were uncertain about the patient's LE and 20% believed LE was 1 or less; at their final interview, 30% were uncertain and 34% believed LE was 1 year or less. Among those interviewed within 30 days of the patient's death, 31% of patients and 52% of caregivers believed LE was 1 year or less. Patients' estimates of the LE did not differ according to their diagnosis., Conclusions: There was little change in prognostic awareness over time. Even close to death, a large proportion of patients and caregivers were uncertain about prognosis, and few believed the patient had a limited life expectancy. Whether or not patients should know their prognosis is the subject of active debate; the persistence of prognostic misperception suggests that prognostic awareness may be difficult to change.

Background: Few studies have examined physician-family caregiver communication at the end of life, despite the important role families have in end-of-life care decisions. We examined family caregiver reports of physician communication about incurable illness, life expectancy, and hospice; the timing of these discussions; and subsequent family understanding of these issues., Design: Mixed methods study using a closed-ended survey of 206 family caregivers and open-ended, in-depth interviews with 12 additional family caregivers., Setting/subjects: Two hundred eighteen primary family caregivers of patients with cancer enrolled with hospice between October 1999 and June 2002., Measurements: Family caregiver reports provided at the time of hospice enrollment of physician discussions of incurable illness, life expectancy, and hospice., Results: Many family caregivers reported that a physician never told them the patient's illness could not be cured (20.8%), never provided life expectancy (40% of those reportedly told illness was incurable), and never discussed using hospice (32.2%). Caregivers reported the first discussion of the illness being incurable and of hospice as a possibility occurred within 1 month of the patient's death in many cases (23.5% and 41.1%, respectively). In open-ended interviews, however, family caregivers expressed ambivalence about what they wanted to know, and their difficulty comprehending and accepting "bad news" was apparent in both qualitative and quantitative data., Conclusion: Our findings suggest that ineffective communication about end-of-life issues likely results from both physician's lack of discussion and family caregiver's difficulty hearing the news. Future studies should examine strategies for optimal physician-family caregiver communication about incurable illness, so that families and patients can begin the physical, emotional, and spiritual work that can lead to acceptance of the irreversible condition.

Objectives: To examine the adequacy of caregiver-patient communication in serious illness and its relationship to caregiver burden., Design: Cross-sectional cohort study., Setting: Participants' homes., Participants: One hundred ninety-three persons aged 60 and older seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers., Measurements: Communication concerns, measured in terms of agreement with statements regarding desire for and difficulty with communication about the patient's illness. Caregiver burden, measured using a 10-item subset of the Zarit Burden Inventory, with scores ranging from 0 to 40 and higher scores indicating greater burden., Results: Of caregivers, 39.9% desired more communication, and 37.3% reported that communication was difficult. Of patients, 20.2% desired more communication, and 22.3% reported that communication was difficult. Disagreement regarding communication concerns was frequent in caregiver-patient pairs; of caregivers who desired more communication, 83.1% of patients did not, and of patients who desired more communication, 66.7% of caregivers did not. Caregivers who desired more communication had significantly higher caregiver burden scores than did caregivers who did not (9.2 vs 4.7, P<.001), even after adjusting for patient's diagnosis, income, and functional status and caregivers' age, sex, and relationship to the patient., Conclusion: A large proportion of caregivers and seriously ill older persons had an unmet desire for increased communication, although they frequently disagreed with each other about this desire. Caregivers' desire for increased communication may be a modifiable determinant of caregiver burden.

Objective: Many terminally ill patients enroll in a hospice late in their illness, and recent data indicate decreasing lengths of hospice enrollment, yet we know little about the impact of hospice enrollment length on surviving caregivers. This is the first study the authors know of that examines the association between hospice enrollment length and subsequent major depressive disorder among surviving caregivers., Method: The authors conducted a prospective cohort study with 174 primary family caregivers of consecutively enrolled hospice patients with cancer between October 1999 and September 2001. Using data from in-person interviews at the time of enrollment and 6-8 months after the patient's death, they estimated with logistic regression the adjusted risk of major depressive disorder with the Structured Clinical Interview for the DSM-IV axis I modules based on the number of days of hospice care before death., Results: Caregivers of patients enrolled with hospice for 3 or fewer days were significantly more likely to have major depressive disorder at the follow-up interview than caregivers of those with longer hospice enrollment (24.1% versus 9.0%, respectively), adjusted for baseline major depressive disorder and other potential confounders., Conclusions: The findings identify a target group for whom bereavement services might be most needed. The authors also suggest that earlier hospice enrollment may help reduce the risk of major depressive disorder during the first 6-8 months of bereavement, which raises concerns about recent trends toward decreasing lengths of hospice enrollment before death.

Objective: To identify factors associated with caregiver burden among those caring for terminally ill patients with cancer., Design: Cross-sectional study of interviews with primary caregivers (n = 206) of consecutive patients with cancer enrolled in the largest hospice in Connecticut., Methods: Data were collected on the caregivers' sociodemographic characteristics, social network index, and number of restrictions in their own activities due to their caregiving role. The outcome was a nine-item questionnaire adapted from the Zarit Burden Inventory., Results: The highest burden was reported among caregivers with more limited social networks (OR 1.38, Cl 1.02-1.87), more restrictions in their daily activities (OR 1.35, Cl 1.13-1.61), and who were younger (OR 1.46, Cl 1.10-1.93)., Conclusions: Variations exist in the intensity of caregiver burden based on subjective experiences and social support, rather than on the amount of assistance provided. Clinicians should consider factors such as these when targeting caregivers for interventions to alleviate burden.

Objectives: To determine predictors of recommendation adherence and goal attainment of family caregivers of patients at a geriatric assessment center., Design: One-year prospective cohort study., Setting: Outpatient geriatric assessment center in Connecticut., Participants: Two hundred consecutive new patients and their family caregivers., Measurements: : Family caregivers were interviewed after geriatric assessment to ascertain their treatment goals for the patient. Medical records were reviewed to identify treatment recommendations. Family caregivers were interviewed 1 year later to assess adherence to recommendations and attainment of goals., Results: Follow-up interviews were completed with 176 (88%) family caregivers. Common recommendations pertained to physician referral (71%), medications (46%), counseling/education (31%), diagnostic tests (30%), residential planning (26%), healthcare planning (21%), and community services (21%). Goal attainment was reported in 44% to 67% of the patient cases, depending on goal category. Caregiver agreement with recommendations predicted adherence to recommendations (adjusted relative risk (ARR)=1.99, 95% confidence interval (CI)=1.04-5.92) after adjusting for available clinical and demographic factors. In addition, adherence to recommendations predicted goal attainment in adjusted analyses (ARR=1.70, 95% CI=1.09-2.64)., Conclusion: This study revealed a broad range of treatment recommendations in geriatric assessment and suggests that agreeing with recommendations can promote adherence and that adherence can promote goal attainment. Taken together, the results imply that articulating shared treatment recommendations may improve the quality of health care.

Objectives: To examine agreement between patients, caregivers, and clinicians regarding prognosis communication and to examine patients' and caregivers' desire for prognostic information., Design: Cross-sectional survey., Setting: Participants' homes., Participants: Two hundred fourteen persons aged 60 and older with a limited life expectancy secondary to cancer, congestive heart failure, or chronic obstructive pulmonary disease; caregivers; and clinicians., Measurements: Patient-clinician and caregiver-clinician agreement about the occurrence of prognosis discussions and patient and caregiver desire for prognostic information., Results: In 46% of patient/clinician and 34% of caregiver/clinician pairs, the clinician reported saying that the patient could die of the underlying disease, whereas the patient or caregiver reported no discussion. In 23% of patient/clinician and 30% of patient/caregiver pairs, the clinician reported discussing an approximate life expectancy, whereas the patient or caregiver reported no discussion. Of 205 patients who reported no life expectancy discussion, 40% did not want this discussion. Whereas 83% of those believing they had 1 year or less to live wanted to discuss prognosis, 79% of those believing they had 1 to 2 years, 53% of those believing they had 2 to 5 years, and 50% of those believing they had more than 5 years or who were unwilling to answer wanted this discussion (P=.007)., Conclusion: Although clinicians report that they are discussing prognosis, patients and caregivers frequently do not corroborate these reports. Furthermore, many patients do not want prognostic information. Despite previous reports concluding that patients want full disclosure about their illness, many seriously ill older persons and caregivers may not be ready or able to receive prognostic information.

Background: Treatment outcomes are an important determinant of patients' treatment preferences. Although studies have examined how well surrogates agree with patients' preferences for specific treatment interventions, agreement regarding the valuation of health states as treatment outcomes is unknown., Methods: Cross-sectional cohort study consisting of in-home interviews with 193 persons 60 years or older and seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers. Patients were asked whether, facing an exacerbation of illness, they would find a series of health states acceptable as a result of treatment (a rating of "unacceptable" meant they would prefer to die than to receive treatment). Caregivers were asked whether they would find these states acceptable for the patient., Results: There was 80% or greater agreement for health states that were overall rated either acceptable (current health, mild memory impairment, mild pain, or other symptoms) or unacceptable (coma). There was 58% to 62% agreement (kappa = 0.10-0.25) about states with more severe physical or cognitive impairment. When disagreement occurred, caregivers were more likely to rate the state as acceptable. There was 61% to 65% agreement (kappa = 0.20-0.28) about states with severe pain or other symptoms. When disagreement occurred, caregivers and patients were equally likely to rate the state as acceptable., Conclusions: Patient-caregiver agreement about the acceptability of health states with functional or cognitive impairment, severe pain, or other symptoms was poor. Caregivers making surrogate decisions based on considerations of treatment outcomes may not effectively represent patients' preferences.

Objective: The authors evaluated the performance of the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) scale, a new tool to assess caregiver exposure to patient distress, and the fear and helplessness evoked by these experiences., Methods: The SCARED was administered to 76 hospice-patient caregivers (e.g., family members). Major depressive disorder (MDD) was diagnosed with the Structured Clinical Interview for the DSM-IV; complicated grief (CG) "caseness" was diagnosed with the Inventory of Complicated Grief-Caregiver items, and quality-of-life domains were assessed with the Medical Outcomes Survey Short Form-36., Results: Respondents endorsed frequent exposure to each SCARED experience-from 30.3% who mistakenly thought the patient had died, to 80.3% who witnessed the patient in severe pain. Adjusted analyses revealed that the odds of MDD increased by 3.08 for each standard-deviation increase in the SCARED event frequency score and that higher SCARED scores were positively associated (p <0.05) with social and role impairment, less energy, and more negative health perceptions., Conclusion: The SCARED may be a clinically useful tool for identifying caregivers at risk for MDD and quality-of-life impairments, as well as potential aspects of caregiving to target for treatment.

In 2015 an estimated 2.7 million people in the United States (1 percent of the population) died. Although decedents' illness experience varies substantially, important trends in care at the end of life are evident. To identify the most pressing health care policy issues related to end-of-life care, we present a comprehensive picture of the epidemiology and care patterns of people in the last stage of life. We identify three key trends in end-of-life care: increasing diversity in the primary diagnoses of decedents, increases in multimorbidity and illness complexity among people with terminal illnesses, and shifts in patterns of care at the end of life and in sites of death. This changing epidemiology of those in the last phase of life puts new pressures on the Medicare hospice benefit to ensure the availability of high-quality end-of-life care. In addition, health care policy makers must grapple with the fact that even with increasing use of hospice care, care intensity increases at the end of life. We highlight and discuss tensions that must be managed to ensure that high-quality care is accessible for people at the end of life. [ABSTRACT FROM AUTHOR]

Background: Treatment outcomes are an important determinant of patients' treatment preferences. Although studies have examined how well surrogates agree with patients' preferences for specific treatment interventions, agreement regarding the valuation of health states as treatment outcomes is unknown. Methods: Cross-sectional cohort study consisting of in-home interviews with 193 persons 60 years or older and seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers. Patients were asked whether, facing an exacerbation of illness, they would find a series of health states acceptable as a result of treatment (a rating of "unacceptable" meant they would prefer to die than to receive treatment). Caregivers were asked whether they would find these states acceptable for the patient. Results: There was 80% or greater agreement for health states that were overall rated either acceptable (current health, mild memory impairment, mild pain, or other symptoms) or unacceptable (coma). There was 58% to 62% agreement (κ = 0.10-0.25) about states with more severe physical or cognitive impairment. When disagreement occurred, caregivers were more likely to rate the state as acceptable. There was 61% to 65% agreement (κ = 0.20-0.28) about states with severe pain or other symptoms. When disagreement occurred, caregivers and patients were equally likely to rate the state as acceptable. Conclusions: Patient-caregiver agreement about the acceptability of health states with functional or cognitive impairment, severe pain, or other symptoms was poor. Caregivers making surrogate decisions based on considerations of treatment outcomes may not effectively represent patients' preferences. [ABSTRACT FROM AUTHOR]

Presents information on a study which identified goals for geriatric care as described by patients and family caregivers. Methodology of the study; Results; Discussion.