There is no tool to appropriately assess terminal delirium, including the natural terminal course. The objective of this study was to develop an evaluation scale to assess distress from irreversible terminal delirium and to examine the validity of the scale.

Based on previous qualitative analysis and systematic literature searches, we carried out a survey regarding the views of bereaved families and developed a questionnaire. We extracted items that bereaved families regarded as important and constructed an evaluation scale of terminal delirium. Then, we applied the questionnaire in a cross-sectional questionnaire survey of bereaved relatives of cancer patients who were admitted to a hospice or a palliative care unit.

We developed the Terminal Delirium-Related Distress Scale (TDDS), a 24 item questionnaire consisting of five subscales (support for families and respect for a patient, ability to communicate, hallucinations and delusions, adequate information about the treatment of delirium, and agitation and restlessness). Two hundred and eighty-one bereaved relatives participated in the validation phase. The construct validity was shown to be good by repeated factor analysis. Convergent validity, confirmed by the correlation between the TDDS and the Care Evaluation Scale (r = 0.651, P < 0.001), was also good. The TDDS had good internal consistency (Cronbach's alpha coefficient for all 24 items = 0.84).

This study showed that the TDDS is a valid and feasible measure of irreversible terminal delirium.

The suffering experienced by some patients at the end of their lives can lead to a wish to hasten death (WTHD). It is sometimes an existential suffering, refractory to palliative care even if well conducted, which leads to this desire. Since several years, in psychiatry, the rapid anti-suicidal effects of a single injection of ketamine have been proven. WTHD and suicidal ideation have similarities. The injection of a single dose of ketamine could have an efficiency on the desire to hasten death.

We report the case of a woman with advanced breast cancer expressing a WTHD, treated by ketamine.

A 78-year-old woman expressed a WTHD (request for euthanasia) because of existential suffering following a loss of autonomy related to cancer. The suicide item was 4 on the Montgomery–Åsberg Depression Rating Scale (MADRS). She had no associated pain or depression. A single dose of intravenous ketamine 1 mg/kg over 40 min plus 1 mg of midazolam was injected. She had no adverse effects. From D1 post-injection to D3, the WTHD disappeared completely with a MADRS suicide item at 0. At D5, the WTHD started to reappear, and at D6, the previous speech was completely back.

These results suggest an effect of ketamine on WTHD. This opens up the possibility of treating existential suffering at the end of life. The optimal dosage of this treatment would have to be determined as well as a maintenance of efficacy scheme.

To evaluate sleep disturbances and to verify the accuracy of three screening tests to detect them in patients at the end-of-life admitted in a hospital palliative care unit.

The level of sleep disturbances was evaluated through the Pittsburgh Sleep Quality Index (PSQI) in 150 palliative patients. This questionnaire was the criterion variable for testing the three screening tests used: Edmonton Symptom Assessment System (ESAS-Sleep subscale); the single question “How much do you worry about your sleep problems?” which is answered on a scale of 0–10 (Sleep-Worry-Q) and another single question: “Do you think you have sleep problems?” with two response categories, Yes/No (Sleep-Problem-Q).

According to the PSQI (cut-off point: 8), 87% of patients presented sleep disturbances. The ESAS-Sleep (cut-off point: 3) showed a sensitivity of 0.87, a specificity of 0.58, and an AUC of 0.729; the Sleep-Worry-Q (cut-off point: 4) showed a sensitivity of 0.95, a specificity of 0.68, and an AUC of 0.854; the Sleep-Problem-Q obtained a sensitivity of 0.92 and a specificity of 0.65.

Patients at the end-of-life, near the time of death, have high levels of sleep disturbances that can be detected early, with better diagnostic accuracy, with the Sleep-Worry-Q. Although from a clinical point of view, the application of the Sleep-Problem-Q may be more advantageous, as it presents good diagnostic accuracy, greater simplicity, and brevity.

Adherence plays a vital role in the effectiveness of non-pharmacological interventions. The disappearance of interventions’ effects at follow-up was caused by inadequate self-practice beyond intervention period. The purpose of this study is to examine the factors associated with adherence to aerobic exercise and Tai Chi and the impact of adherence on the short- and long-term effectiveness in improving sleep in patients with advanced lung cancer.

This study analyzed data collected in a clinical trial that evaluated the effects of aerobic exercise and Tai Chi in patients with advanced lung cancer. Two types of exercises were maintained at the same intensity but with different dosage. A total of 99 patients with advanced lung cancer who were recruited between 2018 and 2020 were included. Data were collected using self-report questionnaires.

Fifty participants were randomly assigned to aerobic exercise and 49 to Tai Chi intervention. Higher levels of satisfaction and lower levels of depression were significantly associated with higher attendance and compliance in both groups. Low fatigue levels contributed to higher attendance in Tai Chi. Both attendance and compliance were significantly associated with long-term sleep improvement.

Higher levels of satisfaction and lower levels of depression were important characteristics of attendance and compliance with home-based practice in both groups, whereas lower levels of fatigue uniquely contributed to higher attendance in Tai Chi. Better exercise adherence improves long-term effectiveness of sleep in patients with advanced lung cancer. Adopting strategies is imperative to promote exercise adherence in patients with greater levels of depression and fatigue.

The growing demand for palliative care has been accelerated due to the COVID-19 pandemic. However, providing community-based palliative care was also more difficult to do safely and faced several challenges. The goal of this integrative review was to identify, describe, and synthesize previous studies on the challenges for health professionals delivering palliative care in the community during the COVID-19 pandemic.

Searches were carried out on the Ovid MEDLINE, CINAHL, PsycINFO, Social Care Online, PubMed, Embase, and Expanded Academic databases. Journals typically reporting palliative care and community health studies were also searched (Palliative Medicine, Journal of Pain and Symptom Management, and Health & Social Care in the Community). All articles were peer-reviewed and published in English between December 2019 and September 2022.

Database and hand searches identified 1231 articles. After duplicates were removed and the exclusion criteria applied, 27 articles were included in the final review. Themes in the research findings centered on 6 interconnected categories. The challenges imposed by the pandemic (lack of resources, communication difficulties, access to education and training, and interprofessional coordination), as well as the varying levels of success of the health-care responses, impacted the well-being of health professionals and, in turn, the well-being and care of patients and families.

The pandemic has provided the impetus for rethinking flexible and innovative approaches to overcome the challenges of delivering community palliative care. However, existing governmental and organizational policies require revision to improve communication and effective interprofessional collaboration, and additional resources are needed. A blended model of virtual and in-person palliative care delivery may provide the best solution to community palliative care delivery moving forward.

This study aims to provide an in-depth understanding of the content and process of decision-making about palliative sedation for existential suffering (PS-ES) as perceived by Belgian palliative care physicians.

This Belgian nationwide qualitative study follows a grounded theory approach. We conducted semistructured interviews with 25 palliative care physicians working in 19 Belgian hospital-based palliative care units and 4 stand-alone hospices. We analyzed the data using the Qualitative Analysis Guide of Leuven, and we followed the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ).

Analysis of the data identified several criteria that physicians apply in their decision-making about PS-ES, namely, the importance of the patient’s demand, PS-ES as a last resort option after all alternatives have been applied, the condition of unbearable suffering combined with other kinds of suffering, and the condition of being in a terminal stage. Regarding the process of decision-making itself, physicians refer to the need for multidisciplinary perspectives supported by an interpretative dialogue with the patient and all other stakeholders. The decision-making process involves a specific temporality and physicians’ inner conviction about the need of PS-ES.

Belgian palliative care physicians are not sure about the criteria regarding decision-making in PS-ES. To deal with complex existential suffering in end-of-life situations, they stress the importance of participation by all stakeholders (patient, relatives, palliative care team, other physicians, nurses, social workers, physiotherapists, occupational therapists, chaplains, etc.) in the decision-making process to prevent inadequate decisions being made.

To assess the factors associated with desire for hastened death and depression in early-stage dementia as well as the association between them. Also, to explore the mediator and moderator role of age in the relationship between depression and desire for hasten death.

A prospective cross-sectional study including 100 patients diagnosed with early-stage dementia from a rehabilitation center between December 2018 and July 2019. Measurement tools used were the Mini-Mental State Examination, the Greek Montreal Cognitive Assessment, the Greek Schedule of Attitudes toward Hastened Death, and the Geriatric Depression Scale-15 item. Patients diagnosed with dementia as a result of Stroke history were excluded.

Factors of multifactorial analysis significantly associated with desire for hastened death were as follows: age (p = 0.009), marital status (p = 0.001), and depression (p < 0.001). The factor significantly associated with depression was age (p = 0.001). Also, a mediation/moderation analysis has shown that depression and age are significant predictors of desire for hasten death.

The desire for hastened death and depression in people diagnosed with early-stage dementia includes many components. Younger patients, men, higher educated patients, single, childless, and those with higher depression scores had higher desire for hastened death, while men and older patients had higher scores of desire for depression. Our study provides important information about the desire for hastened death and depression in early-stage dementia, their risk factors, and their association.

Cancer-related dyspnea is a common symptom in patients with cancer. It has also been reported to be a predictor of poorer prognosis, which can then change clinical treatment and advance care planning. Currently, no definitive recommendation for pharmacologic agents for cancer-related dyspnea exists. The aim of this systematic review and network meta-analysis is to compare pharmacologic agents for the prophylaxis and treatment of cancer-related dyspnea.

A search was conducted in the databases of PubMed, Embase, and Cochrane CENTRAL through May 2021. Standardized mean differences (SMDs), as reported by studies or calculated from baseline and follow-up dyspnea scores, were amalgamated into a summary SMD and 95% confidence interval (CI) using a restricted maximum likelihood multivariate network meta-analysis.

Twelve studies were included in this review; six reported on prophylaxis of exertional dyspnea, five on treatment of everyday dyspnea, and one on treatment of episodic dyspnea. Morphine sulfate was better at controlling everyday dyspnea than placebo (SMD 1.210; 95% CI: 0.415–2.005). Heterogeneity in study design and comparisons, however, led to some concerns with the underlying consistency assumption in network meta-analysis design.

Optimal pharmacologic interventions for cancer-related dyspnea could not be determined based on this analysis. Further trials are needed to report on the efficacy of pharmacologic interventions for the prophylaxis and treatment of cancer-related dyspnea.

End-of-life care (EOLC) communication is beneficial but underutilized, particularly in conditions with a variable course such as chronic obstructive pulmonary disease (COPD) and congestive heart failure (CHF). Physicians’ emotional distress intolerance has been identified as a barrier to EOLC communication. However, studies of emotional distress intolerance in EOLC have largely relied on anecdotal reports, qualitative data, or observational studies of physician–patient communication. A free-standing measure of multiple dimensions of distress tolerance is warranted to enable the identification of individuals experiencing distress intolerance and to facilitate the effective targeting of interventions to improve distress tolerance.

This study provides preliminary data on the reliability and validity of the Physician Distress Intolerance (PDI) scale. We examine potential subdimensions of emotional distress intolerance.

Family medicine and internal medicine physicians completed the PDI, read vignettes describing patients with COPD or CHF, and indicated whether they initiated or delayed EOLC communication with their patients with similar conditions.

Exploratory and confirmatory factor analyses were performed on separate samples. Confirmatory factor analysis confirmed that a three-factor solution was superior to a two- or one-factor solution. Three subscales were created: Anticipating Negative Emotions, Intolerance of Uncertainty, and Iatrogenic Harm. The full scale and subscales had adequate internal consistency and demonstrated evidence of validity. Higher scores on the PDI, indicating greater distress intolerance, were negatively associated with initiation and positively associated with delay of EOLC communication. Subscales provided unique information.

The PDI can contribute to research investigating and addressing emotional barriers to EOLC communication.

This systematic review considers interventions designed to improve the psychological well-being (PWB) of carers of people with motor neuron disease (MND) using quantitative, qualitative, or mixed-methods studies, and aimed to (1) summarize current research, (2) assess the quality of evidence, and (3) evaluate the effectiveness of interventions.

Mixed-methods systematic review (MMSR) was conducted based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Thirteen papers met the inclusion criteria, including 12 studies (six mixed-methods, four quantitative, and two qualitative). Four studies described randomized controlled trials, seven detailed uncontrolled longitudinal studies with a single treatment group and a pre-post design, and one was an observational survey. Critical appraisal of the studies revealed a wide range of weaknesses in the quantitative and/or qualitative methodologies. Due to the heterogeneity of interventions, outcomes, and measurements, a narrative and convergent approach to data synthesis was employed. While a minority of studies demonstrated some benefits to hedonic and eudaimonic aspects of PWB, the interpretability of these data was limited by methodological problems.

This MMSR highlighted a paucity of quality research regarding interventions for the PWB of MND carers. Although some benefits to PWB were demonstrated, most studies suffered from substantial methodological problems, rendering the overall evidence base low. High-quality and carefully designed studies are a priority to enable effective development and testing of much-needed interventions targeting the PWB for MND carers.

This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.

Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5–19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child’s cancer as a family.

Saturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processing styles of family members; (B) parents withholding poor prognosis information and emotions to maintain positivity; (C) lack of personal and familial emotion sharing; and (D) emotion sharing among their family and externally. Both parents and youth endorsed themes A, C, and D, but only parents endorsed theme B. Adolescents endorsed more themes than children. Parents of children (as opposed to adolescents) endorsed theme A more.

Although both parents and youth with advanced cancer were generally willing to talk about treatment, emotions were not consistently shared. Perspectives varied depending on the child’s developmental stage. Clinicians should assess parent and child information and emotion-sharing needs and provide individualized support to families regarding communication about advanced cancer.

Given the rising burden of palliative care and the limited human resources for its facilitation in China, volunteers are becoming increasingly indispensable. In particular, there is a high demand for volunteers who can serve as spiritual caregivers. However, a volunteer’s ability to provide good spiritual care in a palliative setting may be influenced by their attitude toward palliative care. To uncover the current state of spiritual caregiving in palliative settings in China and insights into best practices for its improvement, this study measured spiritual care competence and identified its influencing factors and explored its relationship with attitudes toward palliative care among volunteers. Notably, this study is the first to consider spiritual care competence alongside attitudes toward palliative care.

A descriptive cross-sectional study using online survey methods was conducted with 385 volunteers in Shanghai, China. Data were collected using a structured questionnaire.

Volunteers demonstrated relatively low levels of spiritual care competence (58.50 ± 10.92). Statistically significant correlations were found between spiritual care competence and the following variables: age, educational background, marital status, religious beliefs, occupational status, and relevant training and practical experience. Attitude toward palliative care significantly correlated with spiritual care competence (r = 0.49, p < 0.001).

To continually improve volunteers’ spiritual care competence, diversified education and training programs about spiritual care should be designed for different kinds of volunteers; moreover, because attitude toward palliative care significantly impacted spiritual care competence, such programs should encourage positive attitudes toward palliative care.