Practitioners in the West care for patients from diverse backgrounds. For Muslim patients who experience end-of-life in a foreign society, it is especially prudent to provide access to cultural and religiously appropriate practices. The Quran, the Islamic Holy book, is a key central aspect in the life of a Muslim. Ruqyah, that is – recitation of the Quran, is an often unrealized and misunderstood facet to a peaceful end-of-life for Muslim patients receiving palliative care. Ruqyah may offer comfort and be a source of relief for some Muslims but may be misunderstood as a lack of acceptance of impending death.

This case report and single patient chart review describes the use of Ruqyah at the end-of-life and the role of Western practitioners as it relates to this practice. A critical analysis was undertaken to address the themes of hope, spirituality, and autonomy at end-of-life followed by a literature review.

Maintaining a sense of hope is a religious duty albeit one in which the outcome is not within the believer’s hands. For Muslims, to hope is to believe – which is to accept death when it arrives. In a varied world with rich cultures, it is fundamental for end-of-life providers to incorporate cultural or religious rituals into their working knowledge of the dying process.

This case demonstrates the importance of the basic understanding of Islamic end-of-life practices in conjunction with Muslim spiritual and chaplaincy resources.

We previously developed a 24-item Terminal Delirium-Related Distress Scale (TDDS) to evaluate patient and family distress due to terminal delirium. However, a scale with fewer evaluation items was needed to reduce the burden on terminally ill patients and their families. Thus, the TDDS Shortform (TDDS-SF) was developed, and the validity and reliability of the scale were evaluated.

The aim of this study is to evaluate the validity and reliability of TDDS-SF.

Items with insufficient loading (<0.6) based on factor analysis were removed from the TDDS. Palliative care experts reviewed each item and checked the structure of the scale. Based on their feedback, we developed the TDDS-SF, a 15-item questionnaire consisting of 4 subscales, including “Care for the family,” “Ability to communicate,” “Psychiatric symptoms,” and “Adequate information and discussion about treatment for delirium.” A cross-sectional, self-completed questionnaire survey of bereaved families of cancer patients who were admitted to a hospice/palliative care unit was conducted in August 2018. The survey included the TDDS-SF, Good Death Inventory (GDI), Care Evaluation Scale (CES), and distress score in the Delirium Experience Questionnaire. The validity, including construct validity, convergent validity, discriminant validity, and internal consistency, and reliability, including the Cronbach’s alpha coefficient for internal consistency, of the TDDS-SF were evaluated.

The study included 366 bereaved family members. Factor analysis revealed good construct validity. Convergent validity was demonstrated based on good correlations with the CES (r = − 0.54, P < 0.001) and the GDI (r = − 0.54, P < 0.001). Discriminant validity was demonstrated by a low correlation (r = 0.23, P < 0.001) with the distress scores of bereaved families. The internal consistency was also good (Cronbach’s alpha = 0.70–0.94).

The TDDS-SF is a valid and feasible tool for assessing irreversible terminal delirium-related distress. A study targeting patients and their families with end-of-life delirium is planned for the near future.

In the UK, access to dignified and compassionate palliative care is increasingly being reported as inadequate. This is a particular issue in South-West England, where there is an ageing population, historical lack of research, and particular challenges due to its rural and coastal location. The aim of this study was to provide a holistic view of patient and family experiences of care toward the end-of-life in this location and to collaboratively identify the challenges they face.

Six qualitative focus groups were held with people who were toward the end of their life, family/carers, and people who were bereaved. Participants were recruited via hospice networks. Most focus groups were face-to-face, and all were facilitated by two researchers.

A range of challenges were identified at different stages of the patient and family carer journey near the end-of-life. These included issues related to the delivery of care, such as communication challenges, a lack of out of hours care, and also a lack of personalized care. Patients and families also experienced everyday challenges due to the impact of living with a life-shortening condition and altered family dynamics as family members became carers. There were also some traumatic experiences of death and a sense of abandonment when care could not be accessed.

This study provides a core first step in developing partnership working with members of the public, which can be built upon to develop future research agendas. This work has identified areas for improvement, so that ultimately, end-of-life experience for the individual, their carers, and families can be improved.

People with life-limiting diseases, who are no longer receiving active or curable treatment, often state their preferred place of care and death as the home. This requires coordinating a multidisciplinary approach, using available health and social care services to synchronize care. Family caregivers are key to enabling home-based end-of-life support; however, the 2 elements that facilitate success – coordination and family caregiver – are not necessarily associated as being intertwined or one and the same. This narrative review explores family caregiver experiences of coordinating end-of-life care in the home setting.

Studies were identified systematically following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A search of 5 databases (CINAHL, AMED, MEDLINE, Joanna Briggs Institute for Systematic Reviews, and the Cochrane Database) was conducted using Medical Subject Headings search terms and Boolean operators. Seven hundred and eighty papers were screened. Quality assessment was conducted using the JBI Critical Appraisal Checklist for Qualitative Research. Characteristics of included studies were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) extraction tool.

Ten qualitative studies were included. A meta-aggregative approach was used to assemble findings and categories extracted from the included papers, which led to identification of 3 overall themes: (1) family caregiver identity, (2) strategies for care, and (3) practicalities of care.

Research suggests there should be a designated care coordinator to support people nearing the end of life at home. However, this review shows that family caregivers intrinsically take on this role. Their experiences, frequently share commonalities across different cultures and regions, highlighting the universal nature of their challenges. Difficulties associated with providing home-based care are evident, but the undertaking of care coordination by relatives highlights a need for a change in approach. Future studies could explore the impact of having a designated “facilitator” or single point of contact for families, as well as the development of tailored communication strategies.

Compassion is acknowledged as a key component of high-quality palliative care, producing positive outcomes for both patients and healthcare providers. The development of the Sinclair Compassion Questionnaire (SCQ) fulfilled the need for a valid and reliable tool to measure patients’ experience of compassion. To validate the Italian version of the SCQ and to evaluate its psychometric properties in a sample of cancer patients with a life expectancy of less than 4 months.

Cronbach’s alpha estimates were computed to evaluate the internal reliability. Exploratory Factor Analysis, Confirmatory Factor Analysis, and Item Response Theory analyses were performed to assess the validity of the construct. Divergent validity was assessed using the Functional Assessment of Chronic Illness Therapy-Treatment Satisfaction-Patient Satisfaction, the revised Edmonton Symptom Assessment Scale, and the Trust in Oncologist Scale-Short Form. Data were collected from 131 patients recruited in either a hospital or a hospice setting.

The analyses confirmed the single factor structure of SCQit, with Confirmatory Factor Analysis factor loadings ranging between 0.81 and 0.92 and satisfactory internal reliability. Hospital setting and high diagnosis/prognosis awareness were associated with significantly lower SCQit scores, whereas practicing a religious faith was associated with greater experiences of compassion.

The Italian version of the SCQ (SCit) is a valid and reliable measure of patient-reported compassion. The SCQit can be used in clinical practice and research to measure the compassion experiences of terminally ill cancer patients and to evaluate the effectiveness of training to promote compassionate care in healthcare professionals.

Many factors influence where people die, but most people prefer to die at home. Investigating the factors affecting death at different locations can enhance end-of-life care and enable more people to die at their preferred place. The aim was to investigate barriers and facilitators affecting place of death and compare facilitators and barriers across different places of death.

A scoping review registered on Open Science Framework was conducted in accordance with the guidelines for Scoping Reviews (PRISMA-ScR). An electronic search of literature was undertaken in MEDLINE, EMBASE, PUBMED, PsycINFO, and CINAHL covering the years January 2013–December 2023. Studies were included if they described barriers and/or facilitators for place of death among adults.

This review identified 517 studies, and 95 of these were included in the review. The review identified the following themes. Illness factors: disease type, dying trajectory, treatment, symptoms, and safe environment. Individual factors: sex, age, ethnicity, preferences, and for environmental factors the following were identified: healthcare inputs, education and employment, social support, economy, and place of residence.

The factors influencing place of death are complex and some have a cumulative impact affecting where people die. These factors are mostly rooted in structural aspects and make hospital death more likely for vulnerable groups, who are also less likely to receive palliative care and advanced care planning. Disease type and social support further impact the location of death. Future research is needed regarding vulnerable groups and their preferences for place of death.

Promising studies show that psilocybin-assisted therapy relieves existential distress in patients with serious illnesses, a difficult condition to treat with current treatment options. There is growing interest in this therapy in palliative care. Canada recently amended its laws to allow physicians to request psilocybin for end-of-life distress. However, barriers to access remain. Since implementing psilocybin-assisted therapy within palliative care depends on the attitudes of healthcare providers willing to recommend it, they should be actively engaged in the broader discussion about this treatment option. We aimed (1) to identify issues and concerns regarding the acceptability of this therapy among palliative care professionals and to discuss ways of remedying them and (2) to identify factors that may facilitate access.

A qualitative study design and World Café methodology were adopted to collect data. The event was held on April 24, 2023, with 16 palliative care professionals. The data was analyzed following an inductive approach.

Although participants were interested in psilocybin-assisted therapy, several concerns and needs were identified. Educational and certified training needs, medical legalization of psilocybin, more research, refinement of therapy protocols, reflections on the type of professionals dispensing the therapy, the treatment venue, and eligibility criteria for treatment were discussed.

Palliative care professionals consider psilocybin-assisted therapy a treatment of interest, but it generates several concerns. According to our results, the acceptability of the therapy and the expansion of its access seem interrelated. The development of guidelines will be essential to encourage wider therapy deployment.

Compassion is essential in palliative care; however, there is a lack of evidence of the association between this construct and patients’ dignity-related distress. The present study aimed to investigate the association between end-of-life cancer patients’ sense of dignity, the level of compassion of the healthcare professionals (HCPs) noticed and perceived by the patients, and levels of compassion that HCPs felt they had toward patients, investigating through specific attitudes and behaviors. Furthermore, the relationship between compassion and patients’ physical and psychological symptoms, such as levels of anxiety and depression, was also investigated.

The study was cross-sectional. The sample consisted of 105 end-of-life cancer patients and 40 HCPs. Patients had a Karnofsky Performance Status of 50 or lower and a life expectancy of less than 4 months. For each patient, sociodemographic data were collected, and a set of rating scales assessing compassion, dignity as well as physical and psychological symptoms were administered.

The results showed significant negative associations between patients’ perception of compassion and dignity-related distress as well as significant negative associations between patients’ perception of compassion and patients’ symptoms.

Compassion seems to be involved in diminishing dignity-related distress and alleviating physical and psychological symptoms. Other studies are needed to understand whether patients’ symptoms or whether specific HCPs’ conditions influence compassion. Exploring compassion and at the end-of-life could encourage a dignity-conserving care.

In Chinese culture, family members are the main decision maker on end-of-life (EoL) issues for patients with advanced cancer. Yet little is known about Chinese families’ confidence in making EoL decisions and its associated factors. This study aims to investigate the status and associated factors of Chinese family members’ confidence in making EoL decisions for patients with advanced cancer.

This cross-sectional study used a convenience sample of 147 family members of patients with stage III or stage IV cancer from a tertiary cancer center in Guangzhou, China. The questionnaires included demographic information of patients and their family members, patients’ EoL preferences, and the Chinese version of the Family Decision-Making Self-Efficacy (FDMSE) Scale.

A total of145 family members (98.64%) completed the questionnaires. The average score of FDMSE was 3.92 ± 0.53. A multiple regression analysis showed that the factors associated with FDMSE included patients’ duration of disease, health insurance, participation in EoL decision-making, the expression of unfilled wishes, and family members’ employment status.

Chinese family members were not confident enough in making EoL decisions for patients with advanced cancer. It is recommended to develop cultural-tailored advanced care planning models to clarify patient preferences and to enhance the family members’ self-efficacy in making EoL decisions with or for patients with advanced cancer.

Patients with terminal cancer receiving home palliative care present differential healthcare utilization trajectories before death. It remains unclear which situational elements influence these trajectories among disparate patient groups. The aim of this study was to compare situational influences on “persistently high” and “low stable” trajectories of healthcare utilization in patients who received palliative care support at home.

Bereaved family caregivers were recruited from our prior quantitative study investigating healthcare utilization trajectories in oncology patients on home-based palliative care. In-depth interviews were conducted with 30 family caregivers. Data were analyzed using thematic analysis.

Analysis of data uncovered how the 2 utilization trajectories were influenced by the interplay of 1 or more of 4 situational elements. Perceived symptom control in patients, influenced by their determination to die at home, shapes the susceptibility to situational contingencies, resulting in differential utilization trajectories. Caregivers’ mental readiness in dealing with unexpected circumstances has a significant impact on the overall manageability of care, ultimately affecting decisions related to healthcare utilization. The concordance between symptom needs and scope of homecare services in a given situation proves to be an important determinant. Lastly, perceived accessibility to informal support in times of need acts as a contextual reinforcement, either preventing or precipitating decisions regarding healthcare utilizations.

Our findings hold important implications for the provision of homecare services, in particular, the need for comprehensive assessment of end-of-life wishes during homecare enrolment and strengthening psychological preparedness of caregivers. Expansion of home-based clinical interventions tailored to high utilizers, and funding for temporary in-home respite should be considered to optimally manage potentially preventable acute healthcare utilization.

This study aims at investigating the current status of death literacy and parent’s death quality among adult children in China. A cross-sectional survey was conducted to explore the associations between death literacy and parent’s death quality and to provide evidence for developing public policies for improving the quality of death and end-of-life care for the population in the Greater Bay Area (GBA) of China.

A cross-sectional design was adopted. Participants who experienced their father’s and/or mother’s death were recruited from 5 cities in the GBA of China in 2022. The Good Death Inventory (GDI) and the Death Literacy Index (DLI) were used to investigate the perceived quality of death of the parents of the participants and the death literacy of the participants.

A total of 511 participants were recruited. Participants with higher GDI scores were positively associated with DLI scores (p < 0.001). Adult children who had close relationships before their parents’ death also had higher levels of DLI.

This study investigated death literacy among bereaved adult children in China, filling a gap in the investigation of death literacy among Chinese residents. It found that parents’ death experience can have a significant impact on the death literacy of adult children, which may affect their understanding and preparation for their own eventual death. Promotion of family discussion on death, development of community palliative care, and improving public death literacy are urgently needed in China.

Patients with cancer at the end of life may suffer from high psychological distress, a sense of demoralization, and a lack of dignity related to their medical condition. The This Is ME (TIME) Questionnaire and the Patient Dignity Question (PDQ) are clinical tools developed to achieve comprehensive and personalized patient care and to deepen our understanding of personhood. The objective of this study was to translate and validate the TIME Questionnaire, which contains the PDQ, into Italian to evaluate patient satisfaction of the Italian version of these tools and to identify essential themes elicited by the tools.

The validation process consisted of a forward and back translation stage, data collection from a sample of 60 patients with terminal cancer, and a final consultation with a panel of experts to identify patient themes using the results of the tool.

Overall, participants felt that the PDQ/TIME questionnaire captured their essence as a person, allowed them to express their values and beliefs, and helped the health care professionals (HCP) to take better care of them. Content analysis identified “family relationships,” “global pain,” and “family roles and accomplishments” as being of most importance to patients.

The Italian versions of the PDQ/TIME Questionnaire are clear, precise, understandable, and focused on understanding personhood in patients with advanced cancer. These tools should be used to proactively enhance patient–caregiver and patient–HCP relationships and to develop new perspectives of patient care focused on the critical dimension of personhood.

People with terminal illnesses often experience psychological distress and associated disability. Recent clinical trial evidence has stimulated interest in the therapeutic use of psychedelics at end of life. Much uncertainty remains, however, mainly due to methodological difficulties that beset existing trials. We conducted a scoping review of pipeline clinical trials of psychedelic treatment for depression, anxiety, and existential distress at end of life.

Proposed, registered, and ongoing trials were identified from 2 electronic databases (ClinicalTrials.gov and the World Health Organization International Clinical Trials Registry Platform). Recent reviews and both commercial and non-profit organization websites were used to identify additional unregistered trials.

In total, 25 studies were eligible, including 13 randomized controlled trials and 12 open-label trials. Three trials made attempts beyond randomization to assess expectancy and blinding effectiveness. Investigational drugs included ketamine (n = 11), psilocybin (n = 10), 3,4-methylenedioxymethamphetamine (n = 2), and lysergic acid diethylamide (n = 2). Three trials involved microdosing, and fifteen trials incorporated psychotherapy.

A variety of onging or upcoming clinical trials are expected to usefully extend evidence regarding psychedelic-assisted group therapy and microdosing in the end-of-life setting. Still needed are head-to-head comparisons of different psychedelics to identify those best suited to specific indications and clinical populations. More extensive and rigorous studies are also necessary to better control expectancy, confirm therapeutic findings and establish safety data to guide the clinical application of these novel therapies.

Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.

In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0–10 visual analog scale. For each child, a health professional also rates the child’s emotional status using the same scale.

The average child’s emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children’s emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children’s emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037).

Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.

A resurgence of research investigating the administration of psychedelic compounds alongside psychotherapy suggests that this treatment is a promising intervention for anxiety, depression, and existential distress in people with cancer. However, psychedelic treatment that induces a mind-altering experience potentially poses barriers to vulnerable cancer patients, and health-care practitioners may have concerns about referring their patients to trials investigating this approach. The aim of the current study was to investigate the perceptions of cancer health-care practitioners based in New Zealand and the USA related to psychedelic-assisted therapy.

This study utilized a cross-sectional survey of cancer health-care practitioners in New Zealand and the USA via convenience sampling to identify their perceptions about the concept of conducting psychedelic-assisted therapy with cancer patients.

Participants perceived that (1) psychedelic-assisted therapy has the potential to provide benefit for cancer patients, (2) research in this area across a variety of domains is important, (3) work should consider spiritual and indigenous perspectives of health, and (4) there was willingness to refer patients to trials in this area, especially patients with advanced disease who were no longer going through curative treatment. Participants in the USA had greater awareness of psychedelics than the New Zealand sample; however, New Zealand participants more strongly believed that spiritual/indigenous factors should be considered in psychedelic-assisted therapy.

Cancer health-care practitioners in our sample considered research investigating the potential for psychedelic-assisted therapies to be important and may be more open to studies that start in palliative and end-of-life contexts.

To determine sociodemographics and caregiver burdens associated with overnight hospitalization, hospice utilization, and hospitalization frequency among persons with dementia (PWD).

Cross-sectional analysis of PWD (n = 899) of the National Health and Aging Trends Study linked to the National Study of Caregiving. Logistic and proportional odds regression determined the effects of caregiver burdens on overnight hospitalization, hospice use, and hospitalization frequency. Differences between PWD alive not-alive groups were compared on overnight hospitalization and frequency.

Alive PWD (n = 804) were 2.36 times more likely to have an overnight hospital stay (p = 0.004) and 1.96 times more likely to have multiple hospitalizations when caregivers found it physically difficult to provide care (p = 0.011). Decedents aged 65–74 (n = 95) were 4.55 times more likely to experience overnight hospitalizations than 85+, hospitalizations were more frequent (odds ratio [OR] = 4.84), and there was a significant difference between PWD alive/not alive groups (p = 0.035). Decedents were 5.60 times more likely to experience an overnight hospitalization when their caregivers had financial difficulty, hospitalizations were more frequent when caregivers had too much to handle (OR = 8.44) and/or no time for themselves (OR = 10.67). When caregivers had no time for themselves, a significant difference between alive/not alive groups (p = 0.018) was detected in hospitalization frequency. PWD whose caregivers had emotional difficulty helping were 5.89 times more likely to utilize hospice than caregivers who did not report emotional difficulty.

Care transitions among PWD at the end of life are impacted by the circumstances and experiences of their caregivers. Subjective caregiver burdens represent potentially modifiable risks for undesired care transitions and opportunities for promoting hospice use. Future work is warranted to identify and address these issues as they occur.

The aim of this article is to review and synthesize the evidence on end-of-life in burn intensive care units.

Systematic scoping review: Preferred Reporting Items for Systemic Reviews extension for Scoping Reviews was used as a reporting guideline. Searches were performed in 3 databases, with no time restriction and up to September 2021.

A total of 16,287 documents were identified; 18 were selected for analysis and synthesis. Three key themes emerged: (i) characteristics of the end-of-life in burn intensive care units, including end-of-life decisions, decision-making processes, causes, and trajectories of death; (ii) symptom control at the end-of-life in burn intensive care units focusing on patients’ comfort; and (iii) concepts, models, and designs of the care provided to burned patients at the end-of-life, mainly care approaches, provision of care, and palliative care.

End-of-life care is a major step in the care provided to critically ill burned patients. Dying and death in burn intensive care units are often preceded by end-of-life decisions, namely forgoing treatment and do-not-attempt to resuscitate. Different dying trajectories were described, suggesting the possibility to develop further studies to identify triggers for palliative care referral. Symptom control was not described in detail. Palliative care was rarely involved in end-of-life care for these patients. This review highlights the need for early and high-quality palliative and end-of-life care in the trajectories of critically ill burned patients, leading to an improved perception of end-of-life in burn intensive care units. Further research is needed to study the best way to provide optimal end-of-life care and foster integrated palliative care in burn intensive care units.