More than 50% of patients with dementia visit the emergency department (ED) each year. Patients with dementia experience frequently unrelieved symptoms that can benefit from palliative care. Response to palliative care needs in the ED can be quite challenging and access to palliative care is generally scarce. The aim of this scoping review is to assess ED use and responsiveness to palliative care needs of patients with dementia in their last year of life.

A scoping literature review following the Joanna Briggs Institute methodology. Electronic search of the literature was undertaken in Medline (PubMed), Web of Science, Scopus, Scielo, and APA PsycInfo, last updated on 19 February 2024.

Twenty-four studies were identified and confirmed that patients with dementia frequently resort to the ED near the end of life, frequently more than once in their last year of life. Eight studies directly addressed palliative care needs, suggesting significant rates of palliative care needs among patients with dementia and in comparison, to other oncological or non-oncological conditions. Infections and neuropsychiatric symptoms were the main reasons of admission to the ED. Access to palliative care was confirmed to be low.

This scoping review indicates that patients with dementia frequently resource to the ED in their last year of life with unmet palliative care needs. Although scarce access to palliative care and the existence of important barriers in the ED, palliative care intervention in this setting can be seen as an opportunity to attend palliative care needs and referral to palliative care services.

Supporting family caregivers (FCs) is a critical core function of palliative care. Brief, reliable tools suitable for busy clinical work in Taiwan are needed to assess bereavement risk factors accurately. The aim is to develop and evaluate a brief bereavement scale completed by FCs and applicable to medical staff.

This study adopted convenience sampling. Participants were approached through an intentional sampling of patients’ FCs at 1 palliative care center in Taiwan. This cross-sectional study referred to 4 theories to generate the initial version of the Hospice Foundation of Taiwan Bereavement Assessment Scale (HFT-BAS). A 9-item questionnaire was initially developed by 12 palliative care experts through Delphi and verified by content validity. A combination of exploratory factor analysis (EFA), reliability measures including items analysis, Cronbach’s alpha and inter-subscale correlations, and confirmatory factor analysis (CFA) was employed to test its psychometric properties.

Two hundred seventy-eight participants conducted the questionnaire. Three dimensions were subsequently extracted by EFA: “Intimate relationship,” “Existential meaning,” and “Disorganization.” The Cronbach’s alpha of the HFT-BAS scale was 0.70, while the 3 dimensions were all significantly correlated with total scores. CFA was the measurement model: chi-squared/degrees of freedom ratio = 1.9, Goodness of Fit Index = 0.93, Comparative Fit Index = 0.92, root mean square error of approximation = 0.08. CFA confirmed the scale’s construct validity with a good model fit.

This study developed an HFT-BAS and assessed its psychometric properties. The scale can evaluate the bereavement risk factors of FCs in clinical palliative care.

To explore the potential of incorporating personally meaningful rituals as a spiritual resource for Western secular palliative care settings. Spiritual care is recognized as critical to palliative care; however, comprehensive interventions are lacking. In postmodern societies, the decline of organized religion has left many people identifying as “no religion” or “spiritual but not religious.” To assess if ritual could provide appropriate and ethical spiritual care for this growing demographic requires comprehensive understanding of the spiritual state and needs of the secular individual in postmodern society, as well as a theoretical understanding of the elements and mechanisms of ritual. The aim of this paper is to provide a comprehensive and theoretically informed exploration of these elements through a critical engagement with heterogeneous literatures.

A hermeneutic narrative review, inspired by complexity theory, underpinned by a view of understanding of spiritual needs as a complex mind–body phenomenon embedded in sociohistorical context.

This narrative review highlights a fundamental spiritual need in postmodern post-Christian secularism as need for embodied spiritual experience. The historical attrition of ritual in Western culture parallels loss of embodied spiritual experience. Ritual as a mind–body practice can provide an embodied spiritual resource. The origin of ritual is identified as evolutionary adaptive ritualized behaviors universally observed in animals and humans which develop emotional regulation and conceptual cognition. Innate human behaviors of creativity, play, and communication develop ritual. Mechanisms of ritual allow for connection to others as well as to the sacred and transcendent.

Natural and innate behaviors of humans can be used to create rituals for personally meaningful spiritual resources. Understanding the physical properties and mechanisms of ritual making allows anyone to build their own spiritual resources without need of relying on experts or institutionalized programs. This can provide a self-empowering, client-centered intervention for spiritual care.

Explore humanitarian healthcare professionals’ (HCPs) perceptions about implementing children’s palliative care and to identify their educational needs and challenges, including learning topics, training methods, and barriers to education.

Humanitarian HCPs were interviewed about perspectives on children’s palliative care and preferences and needs for training. Interviews were transcribed, coded, and arranged into overarching themes. Thematic analysis was performed using qualitative description.

Ten healthcare workers, including doctors, nurses, psychologists, and health-project coordinators, were interviewed. Participants identified key patient and family-related barriers to palliative care in humanitarian settings, including misconceptions that palliative care was synonymous with end-of-life care or failure. Health system barriers included time constraints, insufficient provider knowledge, and a lack of standardized palliative care protocols. Important learning topics included learning strategies to address the stigma of serious illness and palliative care, culturally sensitive communication skills, and pain and symptom management. Preferred learning modalities included interactive lectures, role-play/simulation, and team-based case discussions. Participants preferred online training for theoretical knowledge and in-person learning to improve their ability to conduct serious illness conversations and learn other key palliative care skills.

Palliative care prevents and relieves serious illness-related suffering for children with life-threatening and life-limiting conditions; however, most children in humanitarian settings are not able to access essential palliative care, leading to preventable pain and suffering. Limited palliative care knowledge and skills among HCPs in these settings are significant barriers to improving access to palliative care. Humanitarian HCPs are highly motivated to learn and improve their skills in children’s palliative care, but they require adequate health system resources and training. These findings can guide educators in developing palliative care education packages for humanitarian HCPs.

Communication is essential to medical care and is key in improving patient outcomes. We aimed to understand clinicians’ emotions when communicating with patients in palliative care (PC) and the evolution of their communication skills.

Between October and November 2021, 231 Swiss PC clinicians participated in an online cross-sectional survey (65% nurses, 35% physicians). Three questions invited participants to reflect on the development of their communication skills and on their emotions when communicating with patients in PC. Answers to these questions were analyzed thematically.

Constantly adapting to complex emotions in communication was the overarching theme. Three main themes further allowed for an understanding of different communication challenges: emotions as a dynamic compass, not always under control, and evolving comfort and competence through personal and professional growth. In evolving comfort and competence, 6 strategies helped clinicians overcome fears and improve their confidence in communication: learning by doing and formal training, integrating life experiences and gaining insight from private life, taking time, collaborating and connecting with peers, acknowledging individuality, and connecting with one’s own and patients’ emotions.

Participants described powerful emotional experiences when communicating with patients in PC, underscoring the emotional labor involved in PC communication. Our study highlights the need to re-conceptualize emotions as a valuable resource rather than a hindrance in clinical practice. The interplay between personal and professional identities in shaping communication skills, emphasizes the importance of emotional competence as a core professional skill. As clinicians often develop these skills individually, our findings suggest a need for earlier integration of emotional competence training in medical education, along with ongoing support through collaboration, and improved allocation of time resources, to enhance clinician well-being and patient care.

Cancer is associated with physical, social, spiritual, and psychological changes in patients and their caregivers. However, in sub-Saharan Africa, there is lack of evidence on the impact of gender, social norms, and relationship dynamics in the face of terminal illness. The aim of this paper is to explore how gender identity, social norms, and power relations are impacted when a person is living in Uganda with advanced cancer.

Focus groups with adult men and women living with advanced cancer in Uganda were conducted. Interviews explored the social effects of cancer and common challenges, including how both disease and treatment affect the patient and marital relationships within their families. Participants’ recommendations were sought to improve the social well-being of patients and their families. Data were analyzed using inductive thematic analysis.

Men and women experienced negative changes in their roles and identities, often feeling unable to fulfill their marital duties in terms of intimacy, their social roles and responsibilities based on societal expectations. Men expressed loss of a “masculine” identity when unable to provide economically for the household. This led to tension in the familial power dynamics, contributing to relationship breakdown and gender-based violence (GBV) against spouses. Women noted challenges with parenting, relationship breakdowns, and increased GBV.

Gender impacts the patient and the family dynamic throughout the life course, including during advanced cancer. Patients and caregivers experience a change in their roles and identities while coping with existential distress and end-of-life tasks. Given these results, gender considerations and dynamics should be incorporated into overall palliative care provision. In addition, there is a need to integrate GBV screening and support in cancer services to address social health and safety needs in the context of serious illness.

In home-based care for severely ill patients, family caregivers’ contributions are crucial. This study aimed to explore how a web-based psychoeducational intervention influences family caregivers’ experiences in addressing challenges while caring for a patient with life-threatening illnesses during specialized home care.

This qualitative study undertook semi-structured interviews with family caregivers of patients with life-threatening illness receiving specialized home care. Family caregivers participated in a randomized controlled trial evaluating a psychoeducational intervention delivered through a website. Interviews were performed with 17 family caregivers; 13 spouses, 2 adult children, 1 parent, and 1 sibling, and analyzed using qualitative content analysis.

The results indicate that the intervention resonated with the family caregivers’ situation which gave them comfort and awareness. It inspired self-reflection on the caregiver role that provided new insights and encouraged communication with the patient. The intervention prepared family caregivers for the patient’s progressing illness and death. While preparing was a help for some, others did not feel ready to face this, which led them to avoid parts of the website.

This psychoeducational web-based intervention guided family caregivers as they addressed challenges in caregiving and prepared for the future, and they valued having access to such an intervention. In a time of decreasing healthcare resources, web-based support may be a useful alternative to in-person interventions. It is important to continue developing, evaluating, and implementing web-based interventions to meet the needs of family caregivers.

Wishes to hasten death (WTHDs) are common in patients with serious illness. The Schedule of Attitudes Toward Hastened Death (SAHD) is a validated 20-item instrument for measuring WTHD. Two short versions have also been developed based on statistical item selection. However, all existing versions show some limitations with potential for improvement. This study aims to develop and initially validate a theory-driven and statistically sound SAHD short version based on a large multinational sample to advance the WTHD assessment in different countries and with different legislations.

A 3-step procedure was carried out including (1) theory-driven item selection, (2) exploratory, and (3) confirmatory factor analysis. We used a data set collected between 1998 and 2020 across 3 different countries (Germany, Spain, USA). Participants were N = 1156 complete cases (n = 181 German, n = 101 Spanish and n = 874 US) of severely ill adult in- and outpatients. They had to be ≥18 years and give informed consent.

The exploratory factor analysis revealed that 10 of 11 items previously selected theory-driven loaded on either of 2 factors: (1) WTHD and (2) internal locus of control. These factors showed good to excellent reliability according to Cronbach’s α and McDonald’s Ω, as well as an excellent fit of our data as an overall model for the total sample.

The developed SAHD-10 represents a reliable and valid alternative to the SAHD and an efficient means to measure and further investigate a WTHD in cross-cultural clinical and research settings.

Historically, patients with cancer were referred to palliative care near the end of life. In recent years, the increased integration of palliative care throughout the entire trajectory of illness has helped patients with cancer better manage their symptoms and improve QOL. However, it is unknown how patients think about the presence and role of earlier, integrated palliative care. This study explored how patients and caregivers experience cancer care in the context of palliative care co-management with oncology.

We conducted interviews with 18 patients and 13 caregivers to investigate perspectives, attitudes, and experiences surrounding cancer care, specifically with their experiences of co-management with a palliative care outpatient clinic and oncology. Using grounded theory, we identified a typology of patient and caregiver approaches when discussing the care they received and/or desired.

Our data revealed 3 approaches to thinking about palliative care in cancer care. While some participants embraced the “Cure Centrality” approach, caring only about fighting the disease, others adopted a “Quality-of-Life (QOL) Centrality” approach, desiring their health-care team to prioritize a broader range of concerns. A third approach, The “Dual Centrality” approach, espoused values from both approaches.

While co-management of palliative care and oncology is complementary by design, our data suggest that patients and caregivers take a variety of approaches to their copresence. For some patients, palliative care served as an important legitimizing resource for patients desiring expanded priorities in their care (e.g. higher value on QOL and symptom management) and enabling patient-centered care.

This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the quality and effectiveness of care provided. Our goals included exploring emotional, social, and practical caregiving dimensions within the PPC context to address gaps and find areas for improvement. The objectives encompassed an exploration of the perceived effects on physical, emotional, social, and spiritual dimensions, an investigation into pre-PPC inclusion experiences, and an identification of limitations and potential areas for enhancement within the program.

Using a qualitative descriptive approach with a phenomenological lens, we engaged 6 primary caregivers through semi-structured interviews, employing theoretical convenience sampling. Analysis involved meticulous transcription, alphanumeric coding, and thematic categorization using Atlas.ti 8.0® software.

Consistently echoed across interviews were the positive impacts on family dynamics, characterized by a sense of tranquility, enhanced patient care, and substantial caregiver support. Emotional well-being improvements were marked by elevated mood, reduced anxiety, and a restored sense of normalcy. Noteworthy challenges identified encompassed communication gaps among health-care professionals, limited-service availability, and perceived constraints in home care.

The study underscores the profound positive influence of the PPC program on the perceived quality of life for families navigating the complexities of caring for children with life-limiting illnesses. The findings underscore the paramount importance of holistic, family-centric care and underscore the imperative to address caregiver needs comprehensively to mitigate the risk of burnout. The identified challenges serve as signposts for refining communication strategies, expanding service provisions, and augmenting support structures within the PPC program. Overall, the study highlights the profound positive impact of the PPC program on family well-being, while also identifying areas for program enhancement, particularly in communication and service availability.

This methodological study aimed to establish the validity and reliability of the Turkish version of the Information Concealment Scale for Caregivers of palliative care patients.

The study was conducted between January and June 2023 with 155 caregivers who cared for patients hospitalized in the palliative care units of 2 hospitals in Istanbul, Turkey. Exploratory factor analysis and confirmatory factor analysis were performed for validity analysis. Cronbach’s α, item-total correlation, intraclass correlation coefficient (ICC), and Pearson correlation analysis were used for reliability analysis.

Of the participants, 54.2% were female and 69% were married. The mean age was 37.96 ± 12.25 years. According to the exploratory factor analysis, the scale consisted of 3 subscales and 15 items. The first subscale of the scale was expressed as “misrepresentation of the disease’; the second subscale was defined as “concealment of information”; the third subscale was defined as “misrepresentation of the real situation.” As a result of the modifications made in confirmatory factor analysis, the goodness-of-fit values were as follows: CMIN/DF(X2/Sd) = 175.16/815 = 2.16; GFI = 0.88; CFI = 0.91; RMSEA = 0.079; RMR = .070; NFI = 0.90. The Cronbach’s α values of the subscale were between 0.79 and 0.87. ICC values were between 0.90 and 0.95 at a confidence interval of 95%. A positive correlation was determined between the subscales.

It was determined that the Turkish version of the Information Concealment Scale was a valid and reliable tool for caregivers.

To explore patients’ awareness levels of palliative care (PC) and how this awareness shapes their preferences regarding the timing and approach for discussing it.

The study, conducted at a prominent institution specializing in oncology care, enrolled women aged 18–75 years who had been diagnosed with breast cancer. Patients completed guiding questions: Do you know what PC is?, When is the most appropriate time and the most appropriate way to discuss PC?. The interviews were conducted exclusively via video call and were recorded, transcribed, and then deleted.

The study involved 61 participants, averaging 49 years old. Almost half (47.5%) had completed high school. Qualitative data analysis revealed 9 thematic categories. Regarding the first question, 2 divergent categories emerged: care for life and threatening treatment. For the second question, opinions diverged into 4 categories: At an early stage, mid-course of the disease, as late as possible, and no time at all. For the third question, 3 categories emerged: communication and support, care setting and environment, and improving the PC experience.

This study reveals diverse perspectives on patients’ awareness and preferences for discussing PC, challenging the misconception that it’s only for end-of-life (EOL) situations. Comprehending PC influences when and how patients discuss it. If tied solely to EOL scenarios, discussions may be delayed. Conversely, understanding its role in enhancing advance support encourages earlier conversations. Limited awareness might delay talks, while informed patients actively contribute to shared decision-making. Some patients prefered early involvement, others find mid-treatment discussions stress-relieving. Community support, quiet environments, and accessible resources, underscoring the importance of a calm, empathetic approach, emphasizing the importance of understanding its role in advance support and providing valuable implications for enhancing patient care practices, theories, and policies.

This case highlights the limitations of current prognostication and communication in clinical practice.

We report a case of a 50 year old patient with metastatic melanoma following admission to intensive care unit and later transferred to palliative care unit for end-of-life care.

The patient had clinical improvement despite signs of predictors of death and was later transferred back to care of oncology team.

Physicians frequently overestimate or underestimate survival time which can be distressing to patients and families. There is need for further research to improve the accuracy of these tools for the sake of our patients and their families.