Introduction: It has been suggested that palliative care integrated into standard cancer treatment from the early phase of the disease can improve the quality of life of patients with cancer. In this paper, we present the protocol for a multicentre randomised controlled trial to examine the effectiveness of a nurse-led, screening-triggered, early specialised palliative care intervention programme for patients with advanced lung cancer.
Methods and analysis: A total of 206 patients will be randomised (1:1) to the intervention group or the control group (usual care). The intervention, triggered with a brief self-administered screening tool, comprises comprehensive need assessments, counselling and service coordination by advanced-level nurses. The primary outcome is the Trial Outcome Index of the Functional Assessment of Cancer Therapy (FACT) at 12 weeks. The secondary outcomes include participants’ quality of life (FACT-Lung), depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder-7), illness perception (Prognosis and Treatment Perceptions Questionnaire), medical service use and survival. A mixed-method approach is expected to provide an insight about how this intervention works.
Ethics and dissemination: This study has been approved by the Institutional Review Board of the National Cancer Center Japan (approval number: 2016-235). The findings will be disseminated through peer-reviewed publications and conference presentations and will be reflected on to the national healthcare policy.
Trial registration number UMIN000025491.
BACKGROUND: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed.
METHODS: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings.
RESULTS: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly.
CONCLUSIONS: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.
Amid the ongoing ethical and societal debate, there has been a growing global movement toward the legalization of medical assistance in dying (MAID). In patients with terminal cancer and comorbid depression, the contributing role of depression in the decision-making processs to pursue MAID can be challenging to determine.
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STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms.
DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale).
RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms.
CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.
Objectives: Evidence linking end-of-life-care quality in ICUs to bereaved family members’ psychologic distress remains limited by methodological insufficiencies of the few studies on this topic. To examine comprehensively the associations of family surrogates’ severe anxiety and depressive symptoms with end-of-life-care quality in ICUs over their first 6 months of bereavement.
Design: Prospective, longitudinal, observational study.
Setting/Participants: Family surrogates (n = 278) were consecutively recruited from seven medical ICUs at two academically affiliated medical centers in Taiwan.
Measurements and Statistical Analysis: Family surrogates’ anxiety and depressive symptoms were assessed 1, 3, and 6 months postloss using the Hospital Anxiety and Depression Scale. Family satisfaction with end-of-life care in ICUs was assessed 1-month postloss by the Family Satisfaction in the ICU questionnaire. Patients’ end-of-life care was documented over the patient’s ICU stay. Associations of severe anxiety and depressive symptoms (scores = 8 for each subscale) with end-of-life-care quality in ICUs (documented by patient care received and family satisfaction with end-of-life care in ICUs) were examined by multivariate logistic regression models with generalized estimating equation.
Main Results: Prevalence of severe anxiety and depressive symptoms decreased significantly over time. Surrogates’ lower likelihood of severe anxiety or depressive symptoms 3–6 month postloss was associated with death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and higher family satisfaction with end-of-life care in ICUs. Bereaved surrogates’ higher likelihood of these symptoms was associated with physician-surrogate prognostic communication and conducting family meetings before patients died.
Conclusions: End-of-life-care quality in ICUs is associated with bereaved surrogates’ psychologic well-being. Enhancing end-of-life-care quality in ICUs by improving the process of end-of-life care, for example, promoting death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and increasing family satisfaction with end-of-life care, can lighten bereaved family surrogates’ severe anxiety symptoms and severe depressive symptoms.
Dignity has gained increasing attention as a vital component of quality of life and quality of end-of-life care. This article reviews psychological, spiritual, existential, and physical issues facing patients at the end of life as well as practical considerations in providing therapy for this population. The authors reviewed several evidence-based treatments for enhancing end-of-life experience and mitigating suffering, including a primary focus on dignity therapy and an additional review of meaning-centered psychotherapy, acceptance and commitment therapy, and cognitive-behavioral therapy. Each of these therapies has an emerging evidence base, but they have not been compared to each other in trials. Thus, the choice of psychotherapy for patients at the end of life will reflect patient characteristics, therapist orientation and expertise with various approaches, and feasibility within the care context. Future research is needed to directly compare the efficacy and feasibility of these interventions to determine optimal care delivery.
Limited longitudinal studies have hindered the understanding of family adaptation after loss of a loved one in an intensive care unit (ICU). Based on the Double ABCX Model, this study examined changes in adaptation to bereavement for family members in the first year after the ICU death, with special attention to the effects of race/ethnicity. A repeated-measures design was used to conduct the investigation using 3 time points (1-3, 6, and 12 months) after the ICU death. Data were analyzed using linear mixed modeling. Family members (n = 30) consisted of 60% non-Hispanic Whites and 40% African Americans (AAs). During the first 1 to 3 months, moderate to severe symptoms of posttraumatic stress disorder, depression, anxiety, and stress were found (60%, 40%, 30%, and 26.7%, respectively). Initially, non-Hispanic Whites had higher depression scores than African Americans. The change in depression and posttraumatic stress disorder symptoms over 1 year differed by race/ethnicity. Many family members tended to be at risk of psychological sequelae in the early months after a patient's death in an ICU. Racial/ethnic differences in bereavement process need further exploration to understand the broader context within family members grieve and effectively offer support over the course of the first year.
Les auteurs décrivent les différents aspects du processus de deuil périnatal afin de faciliter l'accompagnement des familles touchées par ce drame. Ils citent notamment les risques psychopathologiques qui peuvent découler de cet événement bouleversant l'ordre des générations, tels que la dépression, les troubles anxieux ou le stress post-traumatique.
Background: Ongoing assessment of psychological reaction to illness in palliative and end of life care settings is recommended, yet validated tools are not routinely used in clinical practice. The Distress Thermometer is a short screening tool developed for use in oncology, to detect individuals who would benefit from further psychological assessment. However the optimal cut-off to detect indicative psychological morbidity in patients with advanced cancer receiving specialist palliative care is unclear.
Aim: To provide the first validation of the Distress Thermometer in an advanced cancer population receiving specialist palliative care in a UK hospice setting.
Design: Receiver Operating Characteristics analysis was used to compare the sensitivity and specificity of cut-offs indicative of psychological morbidity on the Distress Thermometer in comparison to the Hospital Anxiety and Depression Scale.
Setting/Participants: Data were derived from 202 patients with advanced cancer who were approached on admission to inpatient or day hospice care, with 139 patients providing complete data on both measures.
Results: The area under the curve was optimal using a Distress Thermometer cut-off score of >=6 for total distress and for anxiety, and a cut-off score of >=4 optimal when screening for depression.
Conclusions: The Distress Thermometer is a valid, accurate screening tool to be used in advanced cancer but with caution in relation to the lack of specificity. With little variation between the area under the curve scores, arguably a Distress Thermometer cut-off score of >=5 is most appropriate in screening for all types of psychological morbidity if sensitivity is to be prioritised.
Objectives: Comparison of the effects of reflexology and relaxation on pain, anxiety, and depression, and quality of life (QoL) of patients with cancer.
Design: A stratified random sample was selected, using an experimental design.
Location: An outpatient Palliative Care Unit in Attica, Greece.
Subjects: 88 patients suffering with cancer.
Interventions: The sample was randomly divided into two equal groups, a reflexology and a relaxation group. The number of interventions for both groups was six 30-min weekly sessions.
Outcome measures: The Greek Brief Pain Inventory (G-BPI) was used to measure pain, the Greek Hospital Anxiety and Depression Scale for screening anxiety and depression, and finally the Short Form Health Survey was used to measure QoL. Measurements of the above tools were taken three times in both groups as follows: preintervention, at fourth and at sixth week of intervention.
Results: Anxiety and depression for both groups exhibited a statistically significant decrease during the observation period (p < 0.001, 2 > 0.25) but at the sixth week, there was a more significant decrease in the reflexology group compared with the relaxation group (p = 0.062, 2 = 0.044 vs. p = 0.005, 2 = 0.096 for anxiety), (p = 0.006, 2 = 0.094 vs. p = 0.001, 2 = 0.138 for depression). QoL physical and mental component measurements were significantly greater for the reflexology group (p < 0.001, 2 = 0.168 and p = 0.017, 2 = 0.071, respectively). The baseline-to-sixth week G-BPI measurements were markedly decreased for the reflexology group (p = 0.207, 2 = 0.020).
Conclusions: Both interventions, relaxation and reflexology, seemed to be effective in decreasing anxiety and depression in patients with cancer. However, reflexology was found to be more effective in improving QoL (physical component) and to have a greater effect on pain management than relaxation.
Background: This study compares a longitudinal population-based sample of spouses bereaved by suicide and those bereaved by other sudden deaths to determine if suicide-bereaved spouses (SBS) experience greater rates of physician-diagnosed mental disorders.
Methods: First, married individuals whose spouse died by suicide, sudden natural death (SND) and unintentional injury (UI) were compared to non-bereaved matched cohorts to determine if there were differences in mental disorder rates between bereavement groups and non-bereaved matches. Second, SBS (n = 365), spouses bereaved by SND (n = 1000), and spouses bereaved by UI (n = 270), were compared using inverse probability treatment weighting and generalized estimating equations to calculate relative rates of mental disorders 5 years before/after death.
Outcomes: All bereaved cohorts had higher rates of mental disorders compared to non-bereaved cohorts. SBS had the greatest rate of depression post-bereavement (50·96%), followed by UI (38·52%) and SND (33·70%) spouses. When comparing bereavement cohorts, a significant group-by-time interaction (P = 0·047) revealed the rate change for depression was significantly different between suicide and UI-bereaved spouses, with SBS having higher rates of depression before bereavement. SBS had increased rates of any mental disorder both pre (ARR = 1·35, 95% CI = 1·03-1·18, P<·05) and post spousal death (ARR = 1·24, 95% CI = 1·03-1·45, P<·05) when compared to UI spouses signifying pre-existing mental disorders. Post-bereavement, SBS had greater rates of depression only when compared to SND-bereaved spouses (ARR = 1·31, 95% CI = 1·10-1·55, P<·01). Interpretation: SBS have the greatest rates of depression and any mental disorder before the death of their spouse, suggesting suicide bereavement may be unique. Sudden spousal bereavement is a vulnerable time for mental disorders.
Effective communication is the foundation of quality care in palliative nursing. As frontline palliative home care providers, nurses could foster more effective bereavement coping skills through therapeutic conversations. The purpose of this study was to evaluate the impact of a nursing intervention offered to bereaved family cancer caregivers. This was a quasi-experimental design, with a posttest-only comparison of the intervention and control groups receiving usual care. Bereaved caregivers (n = 51) receiving services from a specialized palliative home care unit participated and completed measures of depression, anxiety, stress, and grief reactions 3, 5, and 6 months after their close relative had died.
There was a significant decrease in anxiety symptoms in the intervention group compared with the control group across all 3 time points. Anxiety and stress symptoms also decreased over time in the 2 groups combined, but this decrease was not observed for depression. When evaluating grief reactions, the intervention group had a lower mean of controlled grief responses, across the posttest period, than the control group.
Results demonstrate that providing bereaved family caregivers the opportunity to participate in a therapeutic conversation intervention might reduce distressing symptoms in early bereavement.
OBJECTIVES: Family conflict and family functioning were regarded as changeable factors associated with complicated grief (CG) and major depressive disorder (MDD) in the bereaved families of patients with advanced cancer, although the evidence is limited. We explored the family functioning associated with CG and MDD developing either independently or co-morbidly in the bereaved families of patients with advanced cancer who died in palliative care units (PCUs).
METHODS: This study comprised a nationwide cross-sectional questionnaire survey of bereaved family members of cancer patients who died in Japanese PCUs participating in evaluation of the quality of end-of-life care.
RESULTS: A total of 529 questionnaires (69.2%) were returned, and we analyzed a total of 458 responses. A total of 14.2% of participants were considered as having CG, 22.5% as having moderate to severe depression, and 9.6% as having co-morbid symptoms. Multivariate logistic regression analysis revealed that many family members insulted or yelled at one another (odd ratio (OR): 2.99, p=0.046; OR:2.57, p=0.033), and conflict regarding what is meant by a good death (OR:3.60, p=0.026; OR:4.06, p=0.004) was significantly positively associated with CG, MDD, and co-morbid symptom.
CONCLUSIONS: Specific family conflicts may increase the incidence of CG, MDD, and co-morbid symptoms in the bereaved families of patients with advanced cancer. Our results may encourage health care providers to approach discussions about end-of-life issue with the patient and their family in advance, especially focusing on what is considered a good death for the patient, which may prevent or resolve the family conflict.
BACKGROUND: Individuals caring for patients with advanced cancer ("caregivers") experience psychological distress during the patient's illness course. However, data on the prevalence of bereaved caregivers' psychological distress and its relationship with the quality of patient's EOL care are limited.
METHODS: We conducted a secondary analysis of 168 caregivers enrolled in a supportive care trial for patients with incurable lung and gastrointestinal cancers and their caregivers. We used the Hospital Anxiety and Depression Scale (HADS) to assess caregivers' depression and anxiety symptoms at three months after the patient's death. Caregivers also rated the patient's physical and psychological distress in the last week of life on a 10-point scale three-months after the patient death. We used linear regression adjusting for caregiver age, sex, randomization, and cancer type to explore the relationship between bereaved caregivers' depression and anxiety symptoms and their ratings of physical and psychological distress in patients at the EOL.
RESULTS: Of the 168 bereaved caregivers, 30.4% (n=51) and 43.4% (n=73) reported clinically significant depression and anxiety symptoms, respectively. Caregiver ratings of worse physical (B=0.32, P=0.009) and psychological (B=0.50, P<0.001) distress experienced by the patient at the EOL were associated with worse depression symptoms in bereaved caregivers. Only caregiver rating of worse psychological distress experienced by the patient at the EOL (B=0.42, P<0.001) was associated with worse bereaved caregivers' anxiety symptoms.
CONCLUSION: Many bereaved caregivers of patients with advanced cancer experience symptoms of depression and anxiety, which are associated with their perceptions of distress in their loved ones at the EOL.
Both non-rapid eye movements and rapid eye movements sleep facilitate the strengthening of newly encoded memory traces, and dream content reflects this process. Numerous studies evaluated the impact of diseases on dream content, with particular reference to cancer, and reported the presence of issues related to death, negative emotions, pain and illness. This study investigates death and illness experiences in 13 consecutive patients with sarcoma compared to paired controls, early after diagnosis, evaluating dream contents, fear of death, mood and anxiety, distress, and severity of disease perception (perceived and communicated). Ten patients and 10 controls completed the study. Dream contents were significantly different between patients and normative data (DreamSat) and patients and controls (higher presence of negative emotions, low familiar settings and characters and no success involving the dreamer). Illness and death were present in 57% of patients' dreams (0% among controls), but no differences emerged between patients and controls in regard to anxiety and depression, distress and fear of death, even if the severity of illness was correctly perceived. The appearance of emotional elements in dreams and the absence of conscious verbalization of distress and/or depressive or anxious symptoms by patients could be ascribed to the time required for mnestic elaboration (construction/elaboration phase) during sleep.
Background: Patients with advanced cancer commonly report depressive symptoms. Examinations of gender differences in depressive symptoms in patients with advanced cancer have yielded inconsistent findings.
Aim: The objective of this study was to investigate whether the severity and correlates of depressive symptoms differ by gender in patients with advanced cancer.
Design: Participants completed measures assessing sociodemographic and medical characteristics, disease burden, and psychosocial factors. Depressive symptoms were examined using the Patient Health Questionnaire, and other measures included physical functioning, symptom burden, general anxiety, death related distress, and dimensions of demoralization. A cross-sectional analysis examined the univariate and multivariate relationships between gender and depressive symptoms, while controlling for important covariates in multivariate analyses.
Setting/participants: Patients with advanced cancer (N = 305, 40% males and 60% females) were recruited for a psychotherapy trial from outpatient oncology clinics at a comprehensive cancer center in Canada.
Results: Severity of depressive symptoms was similar for males (M = 7.09, SD = 4.59) and females (M = 7.66, SD = 5.01), t(303) = 1.01, p = 0.314. Greater general anxiety and number of cancer symptoms were associated with depressive symptoms in both males and females. Feeling like a failure (ß = 0.192), less death anxiety (ß = –0.188), severity of cancer symptoms (ß = 0.166), and older age (ß = 0.161) were associated with depressive symptoms only in males, while disheartenment (ß = 0.216) and worse physical functioning (ß = 0.275), were associated with depressive symptoms only in females.
Conclusions: Males and females report similar levels of depressive symptoms but the pathways to depression may differ by gender. These differences suggest the potential for gender-based preventive and therapeutic interventions in this population.
OBJECTIVE: This study sought to compare the Hospital Anxiety and Depression Subscale (HADS-D) and Brief Edinburgh Depression Scale (BEDS) as case-finding tools of major depressive disorder in patients with advanced cancer in a palliative care service.
METHODS: An observational study was performed which included patients with advanced cancer who attended the palliative care service at the National Institute of Cancer in Mexico. Patients were asked to fill out the Hospital Anxiety and Depression Scale (HADS) and BEDS and were then assessed by a psychiatrist to evaluate major depressive disorder (MDD) as per the DSM-5 criteria. The case-finding capability of each scale was determined using receiver operating characteristic curves, assessing the area under the curve (AUC) in comparison to the clinical diagnosis.
RESULTS: Eighty-nine patients were included; median age was 57 years, and 71% were female. Among these, 19 patients were diagnosed with MDD during the interview. When comparing the self-reported scales, BEDS had a better performance compared with HADS-D (AUC 0.8541 vs. 0.7665). Limitations include a heterogeneous population and a limited sample size.
SIGNIFICANCE OF RESULTS: The BEDS outperformed the HADS-D tool in discriminating patients with and without depression. A BEDS cutoff value of =5 is suggested as a case-finding score for depression in this population.
PURPOSE: Depression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death). The purpose of this study was to examine the impact that mortality communication has on family caregiver's depression after bereavement, and to translate into Danish and examine the construct validity of the caregiver communication with patients about illness and death scale (CCID; Bachner et al. Omega 57(4):381-397, 2008).
METHODS: A total of 1475 Danish family caregivers (partners and adult children) of terminal cancer patients, in both general and specialized palliative care settings, participated in the study. Respondents completed questionnaires twice: during caregiving and 6 months after the death of their relative.
RESULTS: Results of the hierarchical regression analyses showed that discussing illness and death with one's ill relative was associated with fewer depressive symptoms after bereavement, adjusted for depressive symptoms in the final year of caregiving and socio-demographic characteristics. For both partners and adult children, each of the five CCID items contributed significantly to measurement of a mortality communication latent construct. Moreover, the relative contribution of all five items was consistent across caregiver groups supporting the reliability of measurement.
CONCLUSION: As in Hebrew, Arabic, and English, the CCID can be used with confidence among Danish family caregivers. Mortality communication is a significant factor that may predict depressive symptoms while caregiving and also after the care recipient's death. This factor should be considered for inclusion in early family caregiver interventions.
Automne 1977 : Harry, trente-quatre ans, meurt dans des circonstances tragiques, laissant derrière lui sa fille de quinze mois. Avril 2019 : celle-ci rencontre une femme qui a connu Harry enfant, pendant la guerre d’Algérie. Se déploie alors le roman de ce père amoureux des étoiles, issu d’une grande lignée de médecins. Exilés d’Algérie au moment de l’indépendance, ils rebâtissent un empire médical en France. Mais les prémices du désastre se nichent au coeur même de la gloire. Harry croise la route d’une femme à la beauté incendiaire. Leur passion fera voler en éclats les reliques d’un royaume où l’argent coule à flots. À l’autre bout de cette légende noire, la personne qui a écrit ce livre raconte avec férocité et drôlerie une enfance hantée par le deuil, et dévoile comment, à l’image de son père, elle faillit être engloutie à son tour.
Roman du crépuscule d’un monde, de l’épreuve de nos deuils et d’une maladie qui fut une damnation avant d’être une chance, Saturne est aussi une grande histoire d’amour : celle d’une enfant qui aurait dû mourir, mais
qui est devenue écrivain parce que, une nuit, elle en avait fait la promesse au fantôme de son père.
CONTEXT: Currently, systematic evidence of prevalence of clinically significant depressive symptoms in people with extremely short prognoses is not available to inform its global burden, assessment, and management.
OBJECTIVES: To determine the prevalence of clinically significant depressive symptoms in people with advanced life-limiting illnesses and extremely short prognoses (range of days to weeks).
METHODS: A systematic review and meta-analysis (random effects model) were performed (PROSPERO: CRD42019125119). MEDLINE, Embase, PsycINFO, CINAHL, and CareSearch were searched for studies (1994-2019). Data were screened for prevalence of clinically significant depressive symptoms (assessed using validated depression-specific screening tools or diagnostic criteria) of adults with advanced life-limiting illnesses and extremely short prognoses (defined by survival or functional status). Quality assessment was performed using the Joanna Briggs Institute Systematic Reviews Checklist for Prevalence Studies for individual studies, and Grading of Recommendations Assessment, Development and Evaluation (GRADE) across studies.
RESULTS: Thirteen studies were included. The overall pooled prevalence of clinically significant depressive symptoms in adults with extremely short prognoses (n = 10 studies; extremely short prognoses: N = 905) using depression-specific screening tools was 50% (95%CI: 29%-70%; I2 = 97.6%). Prevalence of major and minor depression were 10% (95%CI: 4%-16%) and 5% (95%CI: 2%-8%), respectively. Major limitations included high heterogeneity, selection bias and small sample sizes in individual studies.
CONCLUSIONS: Clinically significant depressive symptoms were prevalent in people with advanced life-limiting illnesses and extremely short prognoses. Clinicians need to be proactive in the recognition and assessment of these symptoms to allow for timely intervention.