Our aim was to identify possible patterns of change or durability in sources of meaning for family caregivers of terminally ill patients after the onset of support at home by an outreach palliative nursing team during a three-month survey period.

The Sources of Meaning and Meaning in Life Questionnaire (SoMe) was administered to 100 caregivers of terminally ill patients at four measurement timepoints: immediately before the onset of the palliative care (t0), and at 1 week, 1 month, and 3 months after t0. Time-dependent changes were assessed for the completed subsample (n = 24) by means of bivariate linear as well as quadratic regression models. Multivariate regressions with dimensions of meaning in life as dependent variables were performed for the whole sample by means of random-effects models: dependent variables changed over time (four timepoints), whereas regressors remained constant.

No significant differences were found for psychosocial and clinical variables or for sources of meaning between the uncompleted and completed subsamples. Growth curve analyses revealed no statistically significant but tendentiously parabolic changes for any dimensions or for single sources of meaning. In multivariate models, a negative association was found between patient age, psychological burden of family caregivers, and changes in total SoMe score, as well as for the superordinate dimensions.

According to our hypothesis, sources of meaning and meaning in life seem to remain robust in relatives caring for terminally ill family members during the three-month survey period. A parabolic development pattern of single sources of meaning indicates an adjustment process. An important limitation of our study is the small number of participants compared with larger multivariate models because of high dropout rates, primarily due to the death of three-quarters of the participants during the survey period.

Provision of bereavement support is an essential component of palliative care service delivery. While bereavement support is integral to palliative care, it is typically insufficiently resourced, under-researched, and not systematically applied. Our aim was to develop bereavement standards to assist palliative care services to provide targeted support to family caregivers.

We employed a multiple-methods design for our study, which included: (1) a literature review, (2) a survey of palliative care service providers in Australia, (3) interviews with national (Australian) and international experts, (4) key stakeholder workshops, and (5) a modified Delphi-type survey.

A total of 10 standards were developed along with a pragmatic care pathway to assist palliative care services with implementation of the standards.

The bereavement standards and care pathway constitute a key initiative in the evolution of bereavement support provided by palliative care services. Future endeavors should refine and examine the impact of these standards. Additional research is required to enhance systematic approaches to quality bereavement care.

Researchers sought to determine the extent to which burden related to patients' symptom subtypes could predict informal hospice caregiver depression, and to illustrate the differences between caregivers who experience suicidal ideation and those who do not.

Informal caregivers recruited from a not-for-profit community-based hospice agency participated in a cross-sectional survey. Self-report questionnaires assessed caregiver burden associated with patient symptomatology (via a modified version of the Memorial Symptom Assessment Scale–Short Form) and caregiver depressive symptoms, including suicidal ideation (measured by the Patient Health Questionnaire–9). Multiple regressions evaluated the unique predictability of patients' symptom subtypes on caregiver depression. Exploratory analyses examined mean differences of study variables between participants who did and did not endorse suicidal ideation.

Caregiver burden related to patients' psychological symptoms accounted for significant variance in caregiver depression scores when controlling for burden related to physical symptoms. Among 229 caregivers (M age = 61.4 years), 12 reported suicidal ideation, where 6 of the 12 were male, despite male caregivers comprising less than 20% of the total sample.

Burden associated with patients' psychological symptoms uniquely contributed to caregiver depression, further highlighting the clinical utility and necessity for hospice providers to address the emotional needs of patients and their caregivers alike. Developing clinical procedures to identify and respond to such needs would not only behoove hospice agencies, but it would likely enhance the caregiving experience holistically, which might be particularly imperative for male caregivers.

The main objective of this study is to establish emotional benefits of promoting and maintaining meaning in palliative care patients in the final weeks of life and to assess the benefits of including the compassion and self-compassion constructs in the Meaning-Centered Psychotherapy Model (MCP).

Fifty-one cancer inpatients were randomly assigned to one of the three brief interventions for cancer patients in the end of life: the MCP-palliative care version, the MCP-compassionate palliative care (MCP-CPC), or standard counseling. Feasibility, acceptability, and utility were assessed in each condition. Likewise, patients’ opinions about the effectiveness of interventions’ elements were also collected.

Of the 51 patients that began one of the three interventions, 30 completed the three-session interventional program, as well as the pre- and posttreatment questionnaires. No significant differences were found between therapies in terms of the positive feedback of patients regarding the structure, focus, and length of the all three psychotherapeutic interventions. The most helpful elements or constructs reported by patients were meaning, self-compassion, compassion, legacy, and courage and commitment.

An abbreviated version of MCP-CPC tailored to the needs of palliative care patients appears to be feasible, acceptable, and helps patients cope with the process of dying. Further research in bigger samples is needed to establish evidence for the feasibility, acceptability, and utility of a brief MCP-CPC for palliative care patients in their last weeks of life. More proposals of further elements are also needed to improve the results. Such research can create or refine previous treatment approaches which improve the quality of life and psychological distress in patients with advanced cancer.

Similar to delirium, its subsyndromal form has been recognized as the cause of diverse adverse outcomes. Nonetheless, the nature of this subsyndromal delirium remains vastly understudied. Therefore, in the following, we evaluate the phenomenological characteristics of this syndrome versus no and full-syndromal delirium.

In this prospective cohort study, we evaluated the Delirium Rating Scale–Revised, 1998 (DRS–R–98) versus the Diagnostic and Statistical Manual of Mental Disorders, 4th ed., Text Revision (DSM–IV–TR) diagnostic criteria and examined the diagnosis of delirium with respect to phenomenological distinctions in the intensive care setting.

Out of 289 patients, 36 with subsyndromal delirium versus 86 with full-syndromal and 167 without delirium were identified. Agreement with respect to the DSM–IV–TR diagnosis of delirium was perfect. The most common subtype in those with subsyndromal delirium was hypoactive, in contrast to mixed subtype in those with full-syndromal delirium versus no motor alterations in those without delirium. By presence and severity of delirium symptoms, subsyndromal delirium was intermediate. The ability of the DRS–R–98 items to discriminate between either form of delirium was substantial. Between subsyndromal and no delirium, the cognitive domain and sleep–wake cycle were more impaired and allowed a distinction with no delirium. Further, between full- and subsyndromal delirium, the prevalence and severity of individual DRS–R–98 items were greater. Although the differences between these two forms of delirium was substantial, the items were not very specific, indicating that the phenomenology of subsyndromal delirium is closer to full-syndromal delirium.

Phenomenologically, subsyndromal delirium was found to be distinct from and intermediate between no delirium and full-syndromal delirium. Moreover, the greater proximity to full-syndromal delirium indicated that subsyndromal delirium represents an identifiable subform of full-syndromal delirium.

Demoralization is a common problem among medical inpatients with such serious health problems as cancer. An awareness of this syndrome, a knowledge of what defines it, and a plan for how to intervene are limited among nursing teams. Nurses are uniquely poised to efficiently provide brief interventions that address demoralization in their patients. To our knowledge, there are no interventions that train nurses to distinguish and treat demoralization in their patients. The objective of the present study was to determine the acceptability, feasibility, and impact of a novel educational intervention for nurses.

An educational training video was created and delivered to staff nurses (N = 31) at oncology staff meetings to test the feasibility and acceptability of this intervention. Assessments of nurses' knowledge about demoralization and intervention methods were administered immediately before and after the training intervention and through a web-based survey 6 weeks post-intervention. McNemar's test for dependent categorical data was utilized to evaluate change in survey responses at the three timepoints.

Nurses' understanding of the concept of demoralization and appropriate interventions significantly improved by 30.3% from pre- to posttest (p ≤ 0.0001). These improvements persisted at 6 weeks post-intervention (p ≤ 0.0001). At 6-week follow-up, 74.2% of participants agreed or strongly agreed that the training had positively changed their nursing practice, 96.8% reported that this training benefited their patients, and 100% felt that this training was important for the professional development of nurses.

This pilot intervention appeared feasible and acceptable to nurses and resulted in increased understanding of demoralization, improved confidence to intervene in such cases, and an enhanced sense of professional satisfaction among inpatient oncology floor nurses.

Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.

Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.

Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.

Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

The provision of psychological support to caregivers is an important part of the role of the clinical staff working in palliative care. Staff knowledge and attitudes may determine their openness to referring caregivers to a psychological intervention. We recently developed a self-help intervention for grief and psychological distress among caregivers and were interested in exploring the extent to which staff knowledge and attitudes might affect future implementation. The aims of our study were to: (1) examine the acceptability of self-help psychological intervention for caregivers among palliative care clinical staff; (2) examine potential attitudinal barriers toward prolonged grief disorder (PGD) as a diagnosis and interventions for grief; and (3) bolster staff confidence in skills and knowledge in identifying and managing caregiver psychological distress.

An anonymous survey was distributed among clinical staff at two inpatient units and two community health services that assessed the acceptability of self-help interventions for caregivers, attitudes about PGD diagnosis and grief intervention, and staff confidence in skills and knowledge in assessing caregiver psychological distress.

Overall, clinical staff were positively oriented toward self-help for caregivers and intervention for grief. They were also basically confident in their skills and knowledge. While it was positive PGD attitudes that were associated with acceptability of self-help for caregivers, it was both positive and negative PGD attitudes that were associated more specifically with a willingness to refer caregivers to such an intervention.

Our findings are useful in highlighting the issues to be considered in the implementation of a self-help intervention within the healthcare service. Clinical staff seemed positively oriented toward engaging with a psychological intervention for caregivers and likely to act as key allies in implementation.

Our objective was to evaluate long-term altered appearance, distress, and body image in posttreatment breast cancer patients and compare them with those of patients undergoing active treatment and with general population controls.

We conducted a cross-sectional survey between May and December of 2010. We studied 138 breast cancer patients undergoing active treatment and 128 posttreatment patients from 23 Korean hospitals and 315 age- and area-matched subjects drawn from the general population. Breast, hair, and skin changes, distress, and body image were assessed using visual analogue scales and the EORTC BR–23. Average levels of distress were compared across groups, and linear regression was utilized to identify the factors associated with body image.

Compared to active-treatment patients, posttreatment patients reported similar breast changes (6.6 vs. 6.2), hair loss (7.7 vs. 6.7), and skin changes (5.8 vs. 5.4), and both groups had significantly more severe changes than those of the general population controls (p < 0.01). For a similar level of altered appearance, however, breast cancer patients experienced significantly higher levels of distress than the general population. In multivariate analysis, patients with high altered appearance distress reported significantly poorer body image (–20.7, CI95% = –28.3 to –13.1) than patients with low distress.

Posttreatment breast cancer patients experienced similar levels of altered appearance, distress, and body-image disturbance relative to patients undergoing active treatment but significantly higher distress and poorer body image than members of the general population. Healthcare professionals should acknowledge the possible long-term effects of altered appearance among breast cancer survivors and help them to manage the associated distress and psychological consequences.

Caregiver symptom assessment is not part of regular clinical cancer care. The ESAS (Edmonton Symptom Assessment System) is a multidimensional tool regularly used to measure symptom burden in patients but not caregivers. The objectives of the present study were to determine the feasibility of the ESAS in caregiver completion (defined as ≥ 9 of 12 items) and determine its concurrent validity with the Zarit Burden Interview–12 (ZBI–12).

We conducted a prospective study on 90 patient–primary caregiver dyads seen in an outpatient supportive care center in a cancer center. The 12 item ESAS–FS (financial–spiritual) was completed by the dyads along with other clinical and psychosocial measures.

The caregiver ESAS was found to be feasible (90/90 caregivers, 100% completed ≥ 9/12 items) and useful (66/90 caregivers, 73%) by caregivers to report their symptom burden. Some 68 of 90 (76%) caregivers had symptom distress scores ≥ 4 on at least one symptom. A significant association was found between the ESAS scores of caregivers and patients for fatigue (0.03), depression (<0.01), anxiety (<0.01), sleep (0.05), well-being (<0.01), financial distress (<0.01), spiritual pain (<0.01), and total ESAS score (<0.01). Concurrent validity with the ZBI–12 was not achieved (r = 0.53, p = 0.74). A significant correlation was found between caregiver ESAS scores and time spent feeding, housekeeping, total combined caregiver activities, and total ZBI–12 scores.

The caregiver ESAS is a feasible tool and was found useful by our caregivers. Further research is needed to modify the ESAS based on caregivers' recommendations, and further psychometric studies need to be conducted.

Hospice is a favored setting for dignity care. Studies on dignity dimension in end-of-life patients are growing. The Patient Dignity Inventory (PDI) is a tool that can lead to interesting information on dignity-related aspects of suffering. The study aimed to investigate dignity among end-of-life cancer patients, by examining the Italian version of the PDI factor structure and assessing the relationship between dignity and other patients’ psychosocial and spiritual variables to improve a patient-centered clinical practice.

This is a cross-sectional study. Data were collected using a battery of self-administered validated rating scales. The sample included 127 hospice patients with a life expectancy of a few weeks and a Karnofsky Performance Status ≤40. Factor structure and concurrent validity of PDI and correlations between dignity and anxious and depressive symptomatology, quality of life, demoralization, personal coping styles, spiritual well-being, and spiritual daily experience were analyzed.

Factor analysis highlighted a five-factor solution, accounting for 60% of the overall variance. The factors were labeled Psychological Distress, Social Support, Physical Symptoms and Dependency, Existential Distress, and Loss of Purpose/Meaning. Dignity assessment evidenced that self-blame coping style, emotional and physical well-being, and depression were the loss of dignity significant predictors (R2 = 0.605; p < 0.01).

The results point out the intercultural validity of the PDI and empower an accurate detection of dignity-related distress sources in the daily clinical practice. Personality traits seem to have an active role in the loss of dignity, whereas spirituality is confirmed to be positively involved in dignity enhancement.

This paper presents a two-phase cross-sectional study aimed at examining the possible mitigating role of perceived meaning of life and representation of death on psychological distress, anxiety, and depression.

The first phase involved 219 healthy participants, while the second encompassed 30 cancer patients. Each participant completed the Personal Meaning Profile (PMP), the Testoni Death Representation Scale (TDRS), the Hospital Anxiety and Depression Scale (HADS), and the Distress Thermometer (DT). The primary analyses comprised (1) correlation analyses between the overall scores of each of the instruments and (2) path analysis to assess the indirect effect of the PMP on DT score through anxiety and depression as determined by the HADS.

The path analysis showed that the PMP was inversely correlated with depression and anxiety, which, in turn, mediated the effect on distress. Inverse correlations were found between several dimensions of the PMP, the DT, and the HADS–Anxiety and HADS–Depression subscales, in both healthy participants and cancer patients. Religious orientation (faith in God) was related to a stronger sense of meaning in life and the ontological representation of death as a passage, rather than annihilation.

Our findings support the hypothesis that participants who represent death as a passage and have a strong perception of the meaning of life tend to report lower levels of distress, anxiety, and depression. We recommend that perceived meaning of life and representation of death be more specifically examined in the cancer and palliative care settings.

Family caregivers play an important role in end-of-life (EoL) decision making when the patient is unable to make his/her own decisions. While communication about EoL care between patients and family is perhaps a first step toward advance care planning (ACP)/EoL decisions, not every culture puts great value on open communication about this topic. The aims of the present study were to explore EoL communication and the aspects of communication among caregivers of Latino patients in the rural United States (U.S.)–Mexico border region.

This study analyzed data from a hospice needs assessment collected from 189 family caregivers of Latino patients at a home health agency in a rural U.S.–Mexico border region. Bivariate tests and logistic regression were used to address our aims.

About half of the family caregivers (n = 96, 50.8%) reported to have ever engaged in EoL discussion with patients. Significant predictors of EoL discussion included life-sustaining treatment preference (odds ratio [OR] = 0.44, p < 0.05); knowledge of an advance directive (AD) (OR = 5.50, p < 0.01); and distrust of physicians (OR = 0.29, p < 0.01). Caregivers who preferred extending the life of their loved one even if he/she had to rely on life supports were less likely to engage in EoL communication. Also, caregivers who worried that physicians might want to stop treatments (i.e., “pull the plug”) too soon were less likely to do so. Conversely, caregivers who had knowledge about ADs were more likely to engage in EoL communication.

EoL communication is a complex process influenced by individual, social, and cultural values and the beliefs of both the patient and his/her family. Inclusion of family caregivers in the ACP process and facilitating culturally tailored EoL communication between patients and family caregivers is important.

The aim of this study was to determine the factors associated with a feeling of well-being using the Edmonton Symptom Assessment Scale (ESAS)–Feeling of Well-Being item (ESAS–FWB; where 0 = best and 10 = worst) among advanced lung or non-colonic gastrointestinal cancer patients who were referred to an outpatient palliative care clinic (OPCC). We also examined the association of performance on the ESAS–FWB with overall survival (OS).

We reviewed the records of consecutive patients with incurable advanced lung cancer and non-colonic gastrointestinal cancer presenting to an OPCC from 1 January 2008 through to 31 December 2013. Descriptive statistics were employed to summarize patient characteristics. Multivariate regression analysis was used to determine the factors associated with ESAS–FWB severity. We also examined the association of ESAS–FWB scores and survival using Kaplan–Meier survival analysis.

A total of 826 evaluable patients were analyzed (median age = 62 years, 57% male). Median ESAS–FWB scores were five times the interquartile range (5 × IQR; 3–7). ESAS–FWB score was found to be significantly associated with ESAS fatigue (OR = 2.31, p < 0.001); anxiety (OR = 1.98, p < 0.001); anorexia (OR = 2.31, p < 0.001); cut down, annoyed, guilty, eye opener (CAGE) score (hazard ratio [HR] = 1.80, p = 0.008); and family caregiver distress (HR = 1.93, p = 0.002). A worse ESAS–FWB score was significantly associated with decreased OS (r = –0.18, p < 0.001). However, ESAS–FWB score was not independently associated with OS in the final multivariate model (p = 0.35), which included known major clinical prognostic factors.

Worse ESAS–FWB scores were significantly associated with high scores on ESAS fatigue, anorexia, anxiety, CAGE, and family caregiver distress. More research is necessary to understand how palliative care interventions are capable of improving the contributory factors related to ESAS–FWB score.