The Demoralization Scale (DS) is the most widely used measure for assessing demoralization. Following the recent clamor for brief assessment tools, and taking into account that demoralization has proved to be a symptom that needs to be controlled and treated in the palliative care setting, a shorter scale is needed. The aim of the present research is to introduce and evaluate the Short Demoralization Scale (SDS).

We employed a cross-sectional design that included a survey of 226 Spanish palliative care patients from the Hospital General Universitario de Valencia. We employed the SDS, the DS, and the Hospital Anxiety and Depression Scale (HADS).

The confirmatory factor analysis supported the one-factor structure of the SDS (χ2(5) = 12.915; p = 0.024; CFI = 0.999; RMSEA = 0.084; CI95% = [0.028, 0.141]). The reliability was found to be appropriate, with a value of Cronbach's alpha (α) equal to 0.920. A cutoff criterion of 10 was established, which favored the interpretability of the instrument.

The SDS corrects previous limitations, has a simple scoring system, is cost-effective, and is widely and fully available. In addition, our findings demonstrate that the SDS can be employed effectively in the clinical context.

The purpose of this study was to develop a reliable and valid scale that broadly measures knowledge about palliative care among non-healthcare professionals.

An initial item pool of 38 true/false questions was developed based on extensive qualitative and quantitative pilot research. The preliminary items were tested with a community sample of 614 adults aged 18–89 years as well as 30 palliative care professionals. The factor structure, reliability, stability, internal consistency, and validity of the 13-item Palliative Care Knowledge Scale (PaCKS) were assessed.

The results of our study indicate that the PaCKS meets or exceeds the standards for psychometric scale development.

Prior to this study, there were no psychometrically evaluated scales with which to assess knowledge of palliative care. Our study developed the PaCKS, which is valid for assessing knowledge about palliative services in the general population. With the successful development of this instrument, new research exploring how knowledge about palliative care influences access and utilization of the service is possible. Prior research in palliative care access and utilization has not assessed knowledge of palliative care, though many studies have suggested that knowledge deficits contribute to underutilization of these services. Creating a scale that measures knowledge about palliative care is a critical first step toward understanding and combating potential barriers to access and utilization of this life-improving service.

The management of and prognosis for delirium are affected by its subtype: hypoactive, hyperactive, mixed, and none. The DMSS–4, an abbreviated version of the Delirium Motor Symptom Scale, is a brief instrument for the assessment of delirium subtypes. However, it has not yet been evaluated in an intensive care setting.

We performed a prospective/descriptive cohort study in order to determine the internal consistency, reliability, and validity of the relevant items of the DMSS–4 versus the Delirium Rating Scale–Revised-98 (DRS–R-98) and the original DMSS in a surgical intensive care setting.

A total of 289 elderly, predominantly male patients were screened for delirium, and 122 were included in our sample. The internal consistency of the DMSS–4 items was excellent (Cronbach's α = 0.92), and between the DMSS–4 and DRS–R-98 the overall concurrent validity was substantial (Cramer's V = 0.67). Within individual motor subtypes, concurrent validity remained at least substantial (Cohen's κ = 0.65–0.81) and sensitivity high (69.8 to 82.2%), in contrast to those of the no-motor subtype, with less validity and sensitivity (κ = 0.28, 22%). Similarly, total concurrent validity between the DMSS–4 and the original DMSS reached perfection (Cramer's V = 0.83), as did agreement between the subtypes (κ = 0.83–0.92), while sensitivity remained high (88.2–100%). Only in those with delirium with no-motor subtype was agreement moderate (κ = 0.56) and sensitivity lower (67%). Specificity was high across all subtypes (91.2–99.1%). The DMSS–4 yielded very sensitive ratings, particularly for hypoactive and hyperactive motor symptoms, and interrater agreement was excellent (Fleiss's κ = 0.83).

We found the DMSS–4 to be a most reliable and valid brief assessment of delirium in characterizing the subtypes of delirium in an intensive care setting, with increased sensitivity to hypoactive and hyperactive motor alterations.

This study aimed to contribute to the validation of the Portuguese version of the Prolonged Grief Disorder Questionnaire–Predeath (PG–12), examining its psychometric properties, including factorial, discriminant, and predictive validity. The prevalence of predeath prolonged grief disorder (PGD) and its psychosocial correlates were also analyzed.

The PG–12 was assessed in a sample of family caregivers (FCs) of oncological patients in palliative care. The factorial and discriminant validity of the PG–12 were evaluated by confirmatory factor analysis. The prevalence of predeath PGD was calculated and correlated with sociodemographic characteristics, perception of illness, intensity of care, coping, and caregiver burden. Prospective data were used to assess predictive validity.

The sample was composed of 94 FCs, mostly female (78.8%) and daughters (61.3%), with a mean age of 52.02 (SD = 12.87). The PG–12 has been shown to be reliable, to have high internal consistency, to be monofactorial in structure, and to be independent from depression, anxiety, and burden, although predeath grief influences these symptoms. In our sample, 33% met the criteria for predeath PGD. The circumstances and coping mechanisms are also correlated with predeath grief. The PG–12 has also been shown to be predictive of postdeath outcome.

The PG–12 can be a useful screening tool for early identification of risk for maladjustment to loss among family caregivers.

Our aim was to explore preparation for the end of life (EoL) and life closure among persons with advanced metastatic lung cancer. Understanding quality of life through the lens of preparation and completion is important since the trajectory of lung cancer can be relatively short, often leading to application of cancer-directed therapies near death without the opportunity for advance planning or palliative care. Clinical research is needed to understand the kinds of distress specific to older adults with advanced lung cancer that are amendable to palliative care interventions.

We employed an exploratory cross-sectional design to examine psychosocial and existential concerns among a purposive sample (N = 30) of advanced lung cancer patients using the “end-of-life preparation” and “life completion” subscales of the Quality of Life at the End of Life (QUAL–E) questionnaire. Nonparametric methods were employed to analyze preparation, completion, global quality of life (QoL), and the associations among depressive symptoms, preparation, completion, and global QoL.

Higher scores on life completion were associated with better global QoL, and with items related to transcendence, communicative acts, and interpersonal relationships demonstrating important contributions. The perception of being a future burden on family members was the greatest concern within the preparation domain. Depressive symptoms were not associated with preparation, completion, or global QoL.

Psychosocial and existential issues contribute to QoL at the EoL among older adults with late-stage lung cancer during cancer-directed therapy, concurrent care, and hospice. The role of preparation, especially self-perceived burden, merits further research early on in the oncological setting. The preparation and life completion subscales of the QUAL–E are feasible clinical tools for facilitating dyadic communication about sensitive topics in the palliative care setting.

The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement strategies are available. The present study aims to describe the domains of QoL in the context of PPC in oncology, according to the perceptions of professional caregivers.

Semistructured interviews were conducted with a random sample of 20 professional caregivers from the Division of Hematology/Oncology at Le Centre Hospitalier Universitaire Sainte-Justine (Montréal, Canada). The caregivers were asked about their perceptions about the QoL of the children they have cared for in this context. The data were analyzed using inductive thematic content analysis.

The analysis allowed us to identify seven domains of QoL: “physical comfort,” “alleviation of psychological suffering,” “fun and the present moment,” “sense of control,” “feeling valued and appreciated,” “feeling that life goes on,” and “meaningful social relationships.”

Caregivers recount the regard that should be accorded to maintaining well-being and a sense of fun, as well as fostering the child's abilities, taking account of the progression of the disease, and to fulfilling his or her needs, especially social ones. Our results also demonstrate that all domains were positively referred to by professional caregivers. The data from our study will lead to better assessment of QoL according to the trajectory of a child with advanced cancer while undergoing PPC.

Although support programs for children whose parents have cancer have been described and evaluated, formal research has not been conducted to document outcomes. We adapted a group intervention called CLIMB®, originally developed in the United States, and implemented it in Tokyo, Japan, for school-aged children and their parents with cancer. The purpose of this exploratory pilot study was to examine the feasibility, acceptability, and impact of the Japanese version of the CLIMB® Program on children's stress and parents' quality of life and psychosocial distress.

We enrolled children and parents in six waves of replicate sets for the six-week group intervention. A total of 24 parents (23 mothers and 1 father) diagnosed with cancer and 38 school-aged children (27 girls and 11 boys) participated in our study. Intervention fidelity, including parent and child satisfaction with the program, was examined. The impact of the program was analyzed using a quasiexperimental within-subject design comparing pre- and posttest assessments of children and parents in separate analyses.

Both children and parents experienced high levels of satisfaction with the program. Children's posttraumatic stress symptoms related to a parent's illness decreased after the intervention as measured by the Posttraumatic Stress Disorder–Reaction Index. No difference was found in children's psychosocial stress. The Functional Assessment of Chronic Illness Therapy scores indicated that parents' quality of life improved after the intervention in all domains except for physical well-being. However, no differences were found in parents' psychological distress and posttraumatic stress symptoms.

Our results suggest that the group intervention using the CLIMB® Program relieved children's posttraumatic stress symptoms and improved parents' quality of life. The intervention proved the feasibility of delivering the program using manuals and training. Further research is needed to provide more substantiation for the benefits of the program.

Our aim was to describe physicians' perceptions of the suffering of their patients who are dying with dementia, many of whom are incompetent with regard to decision making and have difficulty with communicating about the source of their distress and with identifying related factors.

We analyzed data from the nationally representative observational Dutch End-of-Life in Dementia (DEOLD) cohort study (2007–2011), which involved 34 long-term care facilities. A total of 103 physicians completed questionnaires about 330 patients with dementia who had died in a participating facility. Suffering during the last six hours of life was defined as “a patient being disturbed by or aware of symptoms,” “suffering until the end or death was a struggle”—all related to objective indicators of lack of comfort. We employed generalized estimating equation models to assess associations of suffering with the characteristics of physicians and patients, the patient's death, and the decision-making process.

In 13.8% of cases, the physician felt that the patient had suffered. An unexpected death and death with pneumonia were strongly (an odds ratios close to 6) associated with suffering, and suffering was also independently associated with the physician's perception of worse quality of end-of-life care, death with cardiovascular disease, a less experienced physician, no palliative sedation, and a younger patient.

Most patients with dementia did not suffer during their final hours of life, according to their physicians. There are a number of factors associated with suffering, among them death with pneumonia and unexpected death. We may not be able to have much influence on death from pneumonia, but quality of care and an unexpected death are reasonable targets for intervention. Earlier identification of the beginning of the dying process would allow time to better prepare for approaching death, which would provide a source of comfort.

The experience of caregiving in the context of motor neurone disease (MND) is extremely challenging. Over the past 15 years, quantitative and qualitative studies have delineated the psychosocial aspects of this experience, exploring its impact on caregivers' quality of life, rates of depression, distress, anxiety, and burden. Our paper aimed to provide an overview of the lived experience of MND caregivers, identifying the variables that can influence MND caregiver functioning that are relevant to the development of an intervention.

A narrative review was conducted, synthesizing the findings of literature retrieved from 2000 to early 2016.

A total of 37 articles were included in the review. The articles varied considerably in terms of methodology and quality. The main influential aspects reported and identified were factors pertaining to the patient, factors intrinsic to the caregiver, relationship factors, and social support factors.

There is evidence to support the fact that caregivers have poorer outcomes when they care for patients with a more severe clinical profile, poorer emotional health or neurobehavioral concerns, or when the caregivers themselves struggle with adaptive problem-solving and coping skills. The availability and use of social support are also likely to be important for caregiver psychosocial outcomes. Further investigation is required to clarify the influence of changes in the relationship with the patient. Significant factors affecting the caregiver experience are considered in relation to their amenability to psychosocial intervention. Recommendations are made regarding the optimal features of future psychosocial intervention research.

The objective of this study was to examine the religious/spiritual beliefs of followers of the five major world religions about frequently encountered medical situations at the end of life (EoL).

This was a systematic review of observational studies on the religious aspects of commonly encountered EoL situations. The databases used for retrieving studies were: Ovid MEDLINE In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus. Observational studies, including surveys from healthcare providers or the general population, and case studies were included for review. Articles written from a purely theoretical or philosophical perspective were excluded.

Our search strategy generated 968 references, 40 of which were included for review, while 5 studies were added from reference lists. Whenever possible, we organized the results into five categories that would be clinically meaningful for palliative care practices at the EoL: advanced directives, euthanasia and physician-assisted suicide, physical requirements (artificial nutrition, hydration, and pain management), autopsy practices, and other EoL religious considerations. A wide degree of heterogeneity was observed within religions, depending on the country of origin, level of education, and degree of intrinsic religiosity.

Our review describes the religious practices pertaining to major EoL issues and explains the variations in EoL decision making by clinicians and patients based on their religious teachings and beliefs. Prospective studies with validated tools for religiosity should be performed in the future to assess the impact of religion on EoL care.