Cross-cultural variation in mental health at end of life in patients with ALS.

OBJECTIVE: To examine mental health at the end of life among patients with ALS in three countries: Israel, Germany, and the United States. METHODS: Patients met criteria for definite or probable ALS and had forced vital capacity (FVC) <60% of predicted. Patients completed nonsomatic items from the Beck Depression Inventory and visual analogue scale ratings. RESULTS: The three sites contributed a total of 92 patients; 60 died during follow-up. Patients at the three sites did not differ significantly in sociodemographic features or ALS Functional Rating Scale-Revised summary disability score; sites differed in use of nasal ventilation but not percutaneous esophageal gastrostomy (PEG) tube placement. In analyses that adjusted for disability and use of nasal ventilation, patients at the three sites differed in reports of pessimism and suffering; American patients reported the least distress and Israeli patients the most. In analyses limited to people who died, similar patterns emerged, with wish to live greatest in Americans and least among Israelis. These models adjusted for disability and days until death. CONCLUSIONS: Cultural factors may affect mental health at the end of life in patients with ALS.

Prevalence of depressive disorders and change over time in late-stage ALS.

OBJECTIVE: To determine the prevalence of depressive disorders and symptoms in patients with late-stage ALS, to identify possible risk and protective factors associated with depression, and to determine whether depression increases as death approaches. METHODS: Semistructured interviews were conducted monthly with hospice-eligible patients with ALS and caregivers until the study endpoints of death or tracheostomy. Standardized measures were administered to assess depressive disorders and symptoms, hopelessness, spiritual beliefs, attitudes toward hastened death, quality of life, and related constructs. RESULTS: Sixty-three percent of eligible patients were enrolled. Of the 80 participants, 17 were seen only once; the number of monthly assessments for the others ranged from 2 to 18. For the 53 patients who died, median interval between last assessment and death was 30 days. At study baseline, 81% had no depressive disorder, 10% had minor depression, and 9% had symptoms consistent with major depression. Diagnoses of depression were made on 16% of 369 monthly assessments. Fifty-seven percent of patients never had a depression diagnosis at any visit, and 8% were depressed at all visits. There was no trend toward increasing depression as death approached. Presumed protective factors including spiritual beliefs, spouse as care partner, financial situation, depression in caregiver, and hospice participation did not distinguish between those who were depressed and those who were not. CONCLUSIONS: Results of multiple measures of depression and distress converged to indicate that major depression in people with late-stage ALS is rare, although transient depressive symptoms may occur, and depression does not generally increase as death approaches.

Wish to die in end-stage ALS.

BACKGROUND: In retrospective studies, estimates of hastened dying among seriously ill patients range from <2% in one national survey to as much as 20% in end-stage disease cohorts. OBJECTIVE: To examine, in prospective studies, dying patients in the months before death, in order to understand the wish to die. METHODS: Patients with advanced ALS with a high likelihood of death or need for tracheostomy within 6 months were identified. Patients were assessed monthly with an extensive psychosocial interview, including a diagnostic interview for depression. Family caregivers were interviewed on the same schedule and also after patient deaths. RESULTS: Eighty patients with ALS were enrolled, 63% of eligible patients; 53 died over follow-up. Ten (18.9%) of the 53 expressed the wish to die, and 3 (5.7%) hastened dying. Patients expressing the wish to die did not differ in sociodemographic features, ALS severity, or perceived burden of family caregivers. They were more likely to meet criteria for depression, but differences were smaller when suicidality was excluded from the depression interview. Patients who expressed the wish to die reported less optimism, less comfort in religion, and greater hopelessness. Compared with patients unable to act on the wish to die, patients who hastened dying reported reduction in suffering and increased perception of control over the disease in the final weeks of life. CONCLUSION: These findings suggest caution in concluding that the desire to hasten dying in end-stage disease is simply a feature of depression.

Disparities in perceptions of distress and burden in ALS patients and family caregivers.

OBJECTIVES: To examine agreement between end-stage ALS patients and their family caregivers on indicators of physical and psychological status at the end of life. METHODS: Patient-caregiver pairs completed monthly interviews in patient homes. Patients were asked to rate their current pain, energy, suffering, depression, control over ALS, optimism, interest in hastened death, weariness from ALS, will to live, and how burdened they thought caregivers were on Visual Analogue Scales. Caregivers completed identical ratings of patients as well as a measure of their own burden. Both independently completed the ALS Functional Rating Scale-Rev. (ALSFRS-R), a measure of patient disability and physical function. RESULTS: A total of 69 patient-caregiver pairs participated. For measures of physical function, kappa ranged from 0.49 to 0.83, indicating moderate to excellent agreement. Patient and caregiver composite ALSFRS-R scores were highly correlated (r = 0.92, p < 0.001). Agreement between patients and caregivers was high for ratings of patient pain, control over ALS, optimism, and will to live, and this level of agreement remained high over multiple assessments. In pairwise analyses, caregivers rated patients as having less energy, greater suffering, and greater weariness than patients indicated for themselves, whereas patients rated caregivers as more burdened than caregivers reported for themselves. CONCLUSIONS: Caregivers can accurately report information about a patient's physical function at the end of life. However, patients and caregivers each overestimated the psychosocial impact of the disease on the other.