Family caregiver descriptions of stopping chemotherapy and end-of-life transitions.

PURPOSE: The purpose of this study was to describe family caregivers' perspectives of the final month of life of patients with advanced cancer, particularly whether and how chemotherapy was discontinued and the effect of clinical decision-making on family caregivers' perceptions of the patient's experience of care at the end of life (EOL). METHODS: Qualitative descriptive design using semi-structured interviews collected from 92 family caregivers of patients with end-stage cancer enrolled in a randomized clinical trial. We used a phased approach to data analysis including open coding, focused coding, and within and across analyses. RESULTS: We identified three patterns of transitions characterizing the shift away from active cancer treatment: (1) "We Pretty Much Knew," characterized by explicit discussions about EOL care, seemingly shared understanding about prognosis and seamless transitions from disease-oriented treatment to comfort-oriented care, (2) "Beating the Odds," characterized by explicit discussions about disease-directed treatment and EOL care options, but no shared understanding about prognosis and often chaotic transitions to EOL care, and (3) "Left to Die," characterized by no recall of EOL discussions with transitions to EOL occurring in crisis. CONCLUSIONS: As communication and palliative care interventions continue to develop to improve care for patients with advanced cancer, it is imperative that we take into account the different patterns of transition and their unique patient and caregiver needs near the end of life. Our findings reveal considerable, and potentially unwarranted, variation in transitions from active treatment to death.

Cognition, structural brain changes and complicated grief. A population-based study.

BACKGROUND: Several psychosocial risk factors for complicated grief have been described. However, the association of complicated grief with cognitive and biological risk factors is unclear. The present study examined whether complicated grief and normal grief are related to cognitive performance or structural brain volumes in a large population-based study. METHOD: The present research comprised cross-sectional analyses embedded in the Rotterdam Study. The study included 5501 non-demented persons. Participants were classified as experiencing no grief (n = 4731), normal grief (n = 615) or complicated grief (n = 155) as assessed with the Inventory of Complicated Grief. All persons underwent cognitive testing (Mini-Mental State Examination, Letter-Digit Substitution Test, Stroop Test, Word Fluency Task, word learning test - immediate and delayed recall), and magnetic resonance imaging to measure general brain parameters (white matter, gray matter), and white matter lesions. Total brain volume was defined as the sum of gray matter plus normal white matter and white matter lesion volume. Persons with depressive disorders were excluded and analyses were adjusted for depressive symptoms. RESULTS: Compared with no-grief participants, participants with complicated grief had lower scores for the Letter-Digit Substitution Test [Z-score -0.16 v. 0.04, 95% confidence interval (CI) -0.36 to -0.04, p = 0.01] and Word Fluency Task (Z-score -0.15 v. 0.03, 95% CI -0.35 to -0.02, p = 0.02) and smaller total volumes of brain matter (933.53 ml v. 952.42 ml, 95% CI -37.6 to -0.10, p = 0.04). CONCLUSIONS: Participants with complicated grief performed poorly in cognitive tests and had a smaller total brain volume. Although the effect sizes were small, these findings suggest that there may be a neurological correlate of complicated grief, but not of normal grief, in the general population.

Negative religious coping as a correlate of suicidal ideation in patients with advanced cancer.

OBJECTIVE: The purpose of this study is to examine the relationship between negative religious coping (NRC) and suicidal ideation in patients with advanced cancer, controlling for demographic and disease characteristics and risk and protective factors for suicidal ideation. METHODS: Adult patients with advanced cancer (life expectancy ≤6 months) were recruited from seven medical centers in the northeastern and southwestern USA (n = 603). Trained raters verbally administered the examined measures to patients upon study entry. Multivariable logistic regression analyses regressed suicidal ideation on NRC controlling for significant demographic, disease, risk, and protective factors. RESULTS: Negative religious coping was associated with an increased risk for suicidal ideation (OR, 2.65 [95% CI, 1.22, 5.74], p = 0.01) after controlling for demographic and disease characteristics, mental and physical health, self-efficacy, secular coping, social support, spiritual care received, global religiousness and spirituality, and positive religious coping. CONCLUSIONS: Negative religious coping is a robust correlate of suicidal ideation. Assessment of NRC in patients with advanced cancer may identify patients experiencing spiritual distress and those at risk for suicidal ideation. Confirmation of these results in future studies would suggest the need for interventions targeting the reduction of NRC to reduce suicidal ideation among advanced cancer patients.

Correlates of social support in young adults with advanced cancer.

OBJECTIVE: This study examined the relationship between perceived social support, quality of life (QoL), and grief in young adults with advanced cancer. METHODS: Seventy-one young adults (20-40 years) with advanced cancer were administered measures of social support, QoL, and grief. Regression analyses examined the relationship between social support and QoL and grief. RESULTS: Higher levels of total social support were associated with better psychological and existential QoL and less severe grief. Availability of someone to talk to about problems was also associated with better psychological and existential QoL and less severe grief. Tangible support was associated with better psychological and existential QoL. Availability of someone to engage in activities with was only associated with better existential QoL. CONCLUSIONS: These results suggest that enhancing social support may improve psychological well-being in this population. In addition, specific types of social support may be particularly relevant to the psychological well-being of young adults with advanced cancer.

[Incidence of prolonged grief disorder in relatives of patients who die during or after admission in Intensive Care Unit]. / Incidencia del trastorno por duelo prolongado en los allegados de pacientes fallecidos durante o tras ingreso en la Unidad de Cuidados Intensivos.

OBJECTIVES: To determine the incidence of «Prolonged Grief Disorder¼ from one year after the death of a relative admitted to the Intensive Care Unit. MATERIAL AND METHODS: A cross-sectional, longitudinal follow-up study was conducted in a general ICU of a reference hospital. The relatives were evaluated approximately one year after the death using the «Consensus Criteria for Prolonged Grief Disorder¼ as a tool. The prevalence between the first and second years was determined. RESULTS: A total of 151 relatives of patients who died in ICU were included. The follow-up was carried out 22.1±5.3 months after the death. Eleven relatives (10.3%) fulfilled the «Consensus Criteria for Prolonged Grief Disorder¼. Of all the grieving relatives, those identified with prolonged grief disorder are the ones who most often require psychological/psychiatric support. CONCLUSIONS: In a sample of close relatives of patients who died in ICU, a significant minority fulfilled the criteria for «Prolonged Grief Disorder¼ 1-2 years after the death. This condition, which is often overlooked, and could require some kind of psychological treatment, should be taken into consideration.

Do we all grieve the same? A multigroup test of the dimensional structure of prolonged grief disorder among Danish bereaved partners and children.

Prolonged Grief Disorder (PGD) is a newly recognized mental disorder in ICD-11 and DSM-5-TR. Several studies using exploratory factor analysis have found a unidimensional structure of the Prolonged Grief-13 (PG-13) measure of PGD. The recently published ICD-11 proposal proposes a distinction between two clusters of symptoms: Separation distress symptoms and associated cognitive, emotional and behavioral symptoms. The aim of the current study is to test competing factor structures of PGD in Danish samples of bereaved. Confirmatory factor analysis was used to test competing models of PGD among two samples of in total 1093 adults that completed the questionnaires 6 months post loss of either a parent or a partner. Convergent and divergent validity was tested via the relationship to depression, anxiety, post-traumatic stress disorder (PTSD) and general wellbeing using regression analysis. The Danish version of the PG 13 appeared to be both valid and reliable. A two-factor model reflecting the division of core- and associated symptoms of prolonged grief disorder provided the best description of the PG-13 among Danish bereaved adults and there was evidence of partial structural invariance of the latent structure of PGD across bereavement types. Convergent and divergent validity analysis supported the validity of the two-factor model of PGD. SIGNIFICANT OUTCOMES: : A latent variable model differing between core- and associated symptomatology of grief is supported. The Danish translation of PG-13 is a valid measure of prolonged grief symptomatology.

The neurobiological reward system in Prolonged Grief Disorder (PGD): A systematic review.

Prolonged Grief Disorder (PGD) is a debilitating condition affecting between 7% and 10% of bereaved individuals. Past imaging and psychological studies have proposed links between PGD's characteristic symptoms - in particular, profound yearning - and the neural reward system. We conducted a systematic review to investigate this connection. On December 19, 2019, we searched six bibliographic databases for data on the neurobiology of grief and disordered grief. We excluded studies of the hypothalamic-pituitary-adrenal (HPA) axis, animal studies, and reviews. After abstract and full-text screening, twenty-four studies were included in the final review. We found diverse evidence for the activation of several reward-related regions of the brain in PGD. The data reviewed suggest that compared to normative grief, PGD involves a differential pattern of activity in the amygdala and orbitofrontal cortex (OFC); likely differential activity in the posterior cingulate cortex (PCC), rostral or subgenual anterior cingulate cortex (ACC), and basal ganglia overall, including the nucleus accumbens (NAc); and possible differential activity in the insula. It also appears that oxytocin signaling is altered in PGD, though the exact mechanism is unclear. Our findings appear to be consistent with, though not confirmative of, conceptualizing PGD as a disorder of reward, and identify directions for future research.

Sleep in the wake of complicated grief symptoms: an exploratory study.

Our aim was to explore the concept that the symptoms of complicated grief may be a form of posttraumatic distress, rather than depression, and thus may have different effects on sleep. Sixty-five recently bereaved elders with varying levels of symptoms of complicated grief and depression were stratified by high versus low levels of symptoms; a two-way analysis of variance examined main effects of level of complicated grief symptoms and depressive symptoms on selected sleep measures, as well as interactions. Complicated grief symptoms were independently associated with mild subjective sleep impairment but showed no main effects on electroencephalographic (EEG) sleep measures. In a multiple regression analysis, complicated grief symptoms interacted with depressive symptoms to increase REM sleep percent. Thus, it appears that complicated grief symptoms do not entail the changes of EEG sleep physiology seen in depression, with the possible exception of an interaction with coexisting depression to enhance REM sleep percent.

Traumatic grief as a risk factor for mental and physical morbidity.

OBJECTIVE: The aim of this study was to confirm and extend the authors' previous work indicating that symptoms of traumatic grief are predictors of future physical and mental health outcomes. METHOD: The study group consisted of 150 future widows and widowers interviewed at the time of their spouse's hospital admission and at 6-week and 6-, 13-, and 25- month follow-ups. Traumatic grief was measured with a modified version of the Grief Measurement Scale. Mental and physical health outcomes were assessed by self-report and interviewer evaluation. Survival analysis and linear and logistic regressions were used to determine the risk for adverse mental and physical health outcomes posed by traumatic grief. RESULTS: Survival and regression analyses indicated that the presence of traumatic grief symptoms approximately 6 months after the death of the spouse predicted such negative health outcomes as cancer, heart trouble, high blood pressure, suicidal ideation, and changes in eating habits at 13- or 25-month follow-up. CONCLUSIONS: The results suggest that it may not be the stress of bereavement, per se, that puts individuals at risk for long-term mental and physical health impairments and adverse health behaviors. Rather, it appears that psychiatric sequelae such as traumatic grief are of critical importance in determining which bereaved individuals will be at risk for long-term dysfunction.

Complicated grief and bereavement-related depression as distinct disorders: preliminary empirical validation in elderly bereaved spouses.

OBJECTIVE: This study sought to determine whether a set of symptoms interpreted as complicated grief could be identified and distinguished from bereavement-related depression and whether the presence of complicated grief would predict enduring functional impairments. METHOD: Data were derived from a study group of 82 recently widowed elderly individuals recruited for an investigation of physiological changes in bereaved persons. Baseline data were collected 3-6 months after the deaths of the subjects' spouses, and follow-up data were collected from 56 of the subjects 18 months after the baseline assessments. Candidate items for assessing complicated grief came from a variety of scales used to evaluate emotional functioning (e.g., the Hamilton Depression Rating Scale, the Brief Symptom Inventory). The outcome variables measured were global functioning, medical illness burden, sleep, mood, self-esteem, and anxiety. RESULTS: A principal-components analysis conducted on intake data (N = 82) revealed a complicated grief factor and a bereavement-depression factor. Seven symptoms constituted complicated grief: searching, yearning, preoccupation with thoughts of the deceased, crying, disbelief regarding the death, feeling stunned by the death, and lack of acceptance of the death. Baseline complicated grief scores were significantly associated with impairments in global functioning, mood, sleep, and self-esteem in the 56 subjects available for follow-up. CONCLUSIONS: The symptoms of complicated grief may be distinct from depressive symptoms and appear to be associated with enduring functional impairments. The symptoms of complicated grief, therefore, appear to define a unique disorder deserving of specialized treatment.

Complicated grief as a disorder distinct from bereavement-related depression and anxiety: a replication study.

OBJECTIVE: This study sought to confirm in an independent, nonclinical study group previous work which demonstrated that the symptoms of complicated grief were distinct from the symptoms of bereavement related depression and anxiety. METHOD: Data used in the analyses were derived from a group of 150 widowed individuals who were interviewed 6 months after their deceased spouses' hospital admission (study entry). Complicated grief was measured with a modified version of the Grief Measurement Scale. Principal axis factoring was used to determine the distinctiveness of complicated grief, depression, and anxiety. RESULTS: The principal axis factoring showed that the symptoms of complicated grief loaded quite highly on the first (complicated grief) factor and loaded very poorly on the anxiety and depression factors. CONCLUSIONS: The results confirmed the authors' previous findings demonstrating the distinction between symptoms of complicated grief and symptoms of bereavement-related depression and anxiety.

Influence of traumatic grief on suicidal ideation among young adults.

OBJECTIVE: The purpose of this study was to examine the influence of traumatic grief on suicidal ideation. METHOD: The Beck-Kovacs Scale for Suicidal Ideation was administered to 76 young adult friends of suicide victims. RESULTS: Traumatic grief was associated with a 5.08 times greater likelihood of suicidal ideation, after control for depression. Comorbid traumatic grief and depression were not associated with a greater likelihood of suicidal ideation. CONCLUSIONS: Syndromal traumatic grief heightens vulnerability to suicidal ideation.

A post hoc comparison of paroxetine and nortriptyline for symptoms of traumatic grief.

BACKGROUND: This report presents the results of an open-trial pilot study of paroxetine for symptoms of traumatic grief, compared with the effects of nortriptyline in an archival contrast group. METHOD: Data are presented on 15 subjects (4 men, 11 women), ranging in age from 40 to 79 years (mean age = 57 years), who experienced the loss of a spouse (N = 8), child (N =5), grandchild (N = 1), or parent (N = 1). Subjects were required to have a baseline score on the Inventory of Complicated Grief (ICG) of > or = 20. Treatment with paroxetine began at a median of 17 months (range, 6-139 months) after the loss. Paroxetine-treated subjects received a psychotherapy tailored for traumatic grief. Depressive symptoms were assessed by using the Hamilton Rating Scale for Depression (HAM-D). The ICG and the HAM-D were administered weekly over 4 months of paroxetine treatment (median dose = 30 mg/day). The group receiving paroxetine were then compared with a group (N = 22) participating in a separate trial of nortriptyline (median dose = 77.5 mg/day) for treatment of bereavement-related major depressive episodes. RESULTS: Level of traumatic grief symptoms (ICG) decreased by 53%, and depression ratings (HAM-D) decreased by 54% in paroxetine-treated subjects. Nortriptyline showed clinical effects comparable to those of paroxetine. CONCLUSION: Paroxetine may be an effective agent in the treatment of traumatic grief symptoms. A comparison of the paroxetine-treated group with a nortriptyline-treated group suggests that both agents have comparably beneficial effects on the symptoms of traumatic grief (as well as those of depression). However, the higher rate of diagnostic comorbidity in the paroxetine-treated group, together with the greater chronicity of their symptoms and the greater safety of paroxetine in overdose, leads us to favor paroxetine over nortriptyline for traumatic grief symptoms in general psychiatric practice. Further controlled evaluation of paroxetine for traumatic grief is necessary.

Factors associated with symptomatic improvement and recovery from major depression in primary care patients.

This article describes a post-hoc analysis of clinical and psychosocial factors and beliefs about health associated with treatment outcome in a sample of depressed primary care patients (N=181) randomly assigned to a standardized treatment or physician's usual care (UC). Different factors were found to predict clinical outcomes for treatment modality [UC vs. interpersonal psychotherapy (IPT) or nortriptyline (NT)] and the type of outcome evaluated (i.e., depressive symptoms at 8 months or symptomatic and functional recovery at 8 months). Factors associated with treatment-specific outcomes are also described. Consistent with prior studies, lower depressive symptom severity at 8 months was associated with higher baseline functioning, minimal medical co-morbidity, race, and standardized pharmacologic or psychotherapeutic treatment. Additionally, an interaction between treatment modality and health locus of control indicated that individuals perceiving more self-control of their health and who received a standardized treatment experienced greater depressive symptom reduction at 8 months. Factors associated with symptomatic and functional recovery from the depressive episode were also examined. Patients who received a standardized treatment (IPT or NT) perceived greater control of their health and lacked a lifetime generalized anxiety disorder or panic disorder were more likely to recover by month 8 than those who received usual care. While clinical severity and treatment adequacy play an important role in both symptomatic improvement and full recovery from a depressive episode, other key factors such as health beliefs and non-depressive psychopathology also influence recovery.

Phenomenology and treatment of bereavement-related distress in the elderly.

While brief periods of bereavement-related distress should be neither pathologized nor treated, periods of distress lasting several months that meet criteria for major depressive episode and, in particular, for what we now refer to as traumatic grief reactions, are strongly associated with considerable psychiatric and physical morbidity and deserve careful clinical attention. Our current efforts at treatment development for traumatic grief come directly from treatment for Post-Traumatic Stress Disorder. We conceptualize this as a nine-session intervention with an emphasis on reliving the moment of the death, saying goodbye to the deceased, and in vivo exposure to situations that the subject has come to avoid since the death. As yet, we have no objective data on the outcome of this procedure in traumatic grievers, but clinical outcomes have been consistent with Foa's theory that re-experiencing the trauma and exposure to avoided situations under controlled conditions ultimately leads to reductions in subjective distress. We are currently planning an open treatment development trial of this form of traumatic grief therapy. Assuming outcomes are positive, we plan to test it in a randomized controlled trial comparing the efficacy of this intervention with a more standard form of non-behavioral psychotherapy and with pharmacotherapy.

Stressful life events, social rhythms, and depressive symptoms among the elderly: an examination of hypothesized causal linkages.

This study sought to determine possible causal linkages among stressful life events, social rhythms, and levels of depressive symptomatology for 81 elderly subjects (51 recently widowed, 30 healthy controls). We examined the associations among stressful life events (i.e., bereavement status at baseline or a severely threatening event occurring between baseline and followup), social rhythm stability, and the level of depressive symptoms. Results indicated that while stressful life events were not associated with significant changes in social rhythm stability, social rhythm stability was a significant negative correlate of both baseline and followup levels of depressive symptomatology; that is, lower levels of social rhythm stability at baseline were associated with high levels of depressive symptoms at baseline (rho = -0.33, n = 81, p < 0.001) and at followup (rho = -0.23, n = 81, p < 0.05). Bereavement was also a significant positive correlate of depressive symptomatology both at baseline (rho = 0.79, n = 81), p < 0.0001) and at followup (rho = 0.55, n = 81, p < 0.0001). It is likely that future research will benefit from social rhythm assessment obtained temporally closer to major life events and from the use of structured interviews to ascertain the presence of syndromal major depression at followup as well as the inclusion of subjects with a wider range of functional impairments. Nevertheless, these results represent a first step in disentangling possible causal connections among stressful life events, social rhythms, and depressive symptomatology.

Inventory of Complicated Grief: a scale to measure maladaptive symptoms of loss.

Certain symptoms of grief have been shown (a) to be distinct from bereavement-related depression and anxiety, and (b) to predict long-term functional impairments. We termed these symptoms of "complicated grief" and developed the Inventory of Complicated Grief (ICG) to assess them. Data were derived from 97 conjugally bereaved elders who completed the ICG, along with other self-report scales measuring grief, depression, and background characteristics. Exploratory factor analyses indicated that the ICG measured a single underlying construct of complicated grief. High internal consistency and test-retest reliabilities were evidence of the ICG's reliability. The ICG total score's association with severity of depressive symptoms and a general measure of grief suggested a valid, yet distinct, assessment of emotional distress. Respondents with ICG scores > 25 were significantly more impaired in social, general, mental, and physical health functioning and in bodily pain than those with ICG scores < or = 25. Thus, the ICG, a scale with demonstrated internal consistency, and convergent and criterion validity, provides an easily administered assessment for symptoms of complicated grief.

Social rhythm stability following late-life spousal bereavement: associations with depression and sleep impairment.

The aim of this study was to investigate changes in social rhythm stability and sleep in spousally bereaved subjects (n = 94) and in nonbereaved elderly control subjects (n = 45). Social rhythm stability and activity level were measured with a diary-like instrument, the Social Rhythm Metric (SRM). We observed that spousal bereavement, per se, was not associated with a lower social rhythm stability or activity level except in the presence of a major depressive episode. We also observed an inverse correlation between severity of depression and social rhythm stability, and a positive correlation between depression and both subjective and objective measures of sleep impairment. Higher social rhythm stability was correlated with better sleep in subjects with high activity levels, but not in subjects with low activity levels. Longitudinal data, including pre-bereavement assessment of social rhythm stability, are necessary to ascertain directional effects, i.e., whether loss of spouse occasions disruption of social rhythms or whether such disruption precedes sleep impairment and depression.

Preliminary explorations of the harmful interactive effects of widowhood and marital harmony on health, health service use, and health care costs.

This study examined effects of widowhood and marital harmony on health, health service use, and health care costs. The Americans Changing Lives data set contains 694 subjects who remained married and 61 subjects who became widowed between 1986 and 1989. Estimated annual mean 1989 health costs, adjusting for 1986 costs, age, sex, socioeconomic status, mental/physical health, 1989 health insurance, and selection biases are: $2,384 for widowed, $1,498 for married subjects. Adjusted annual 1989 estimates are: $2,766 for those widowed after harmonious marriages; $2,100 for those widowed after discordant marriages; $1,790 for spouses in discordant marriages; $1,228 for spouses in harmonious marriages. Harmonious marriages appear protective until widowhood, after which higher health costs result.

Socialization to dying: social determinants of death acknowledgement and treatment among terminally ill geriatric patients.

Although the vast majority of deaths occur among terminally ill geriatric patients, little is known about the etiology of these patients' death acknowledgement and ultimate type of treatment. Based on interviews with 76 triads composed of physicians, terminally ill patients, and primary caregivers, this study uses the socialization perspective to identify the actors and actions that most strongly affect the patient's death acknowledgment and receipt of exclusively palliative care (i.e., socialization to the dying role). Whereas patient preferences and sociodemographic characteristics do not influence significantly the patient's odds of death acknowledgment, these odds are increased if their primary caregivers accept death, their physicians are not affiliated with a teaching hospital, and the terminal prognosis is disclosed to them and disclosed "matter-of-factly." Patients who acknowledge death, whose agents value pain alleviation over life-prolongation, and whose physicians are not affiliated with a teaching hospital, are substantially more likely to receive exclusively palliative rather than curative terminal treatment.