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.

Coping styles can be improved by dyadic palliative care interventions and may alleviate patients’ and family caregivers’ distress. Moreover, family caregivers’ preloss resilience protects against depression after bereavement. This study aimed to determine the types of coping styles can be encouraged to increase resilience.

A self-reported questionnaire survey was administered to family caregivers at the 4 palliative care units, and their resilience was assessed using the Connor–Davidson Resilience Scale (CD-RISC) and their coping styles were assessed using the Brief Coping Orientation to Problem Experienced, as well as their background characteristics.

Among 291 caregivers with a mean CD-RISC score of 56.2 (standard deviation: 16.13), internal locus of control, educational level, and history of psychotropic drug use were associated with resilience. After adjusting for the aforementioned factors, more frequent use of positive coping styles such as active coping (Spearman’s ρ = 0.29), acceptance (ρ = 0.29), positive reframing (ρ = 0.29), planning (ρ = 0.24), and humor (ρ = 0.18), was found to be associated with higher resilience. On the contrary, more frequent use of negative coping styles such as behavioral disengagement (ρ = −0.38), self-blame (ρ = −0.27), and denial (ρ = −0.14) was found to be associated with less resilience.

By assessing internal locus of control, educational level, and history of psychotropic medication use of family caregivers, as factors associated with their respective resilience, may help identify less resilient family caregivers who are at risk for developing major depression after bereavement. In addition, coping skill-based educational interventions targeting patients and their family caregivers that focus on specific coping styles associated with resilience may increase family caregivers’ resilience, resulting in less emotional distress and a lower risk of major depression after bereavement.

Patient dignity is a key concern during end-of-life care. Dignity Therapy is a person-centered intervention that has been found to support patient dignity interviews focused on narrating patients’ life stories and legacies. However, mechanisms that may affect utility of the Dignity Therapy have been little studied. In this study, we evaluate whether the extent to which patients are more communal in their interviews acts as a mechanism for increased patient dignity.

We analyzed the written transcripts from Dignity Therapy interviews with 203 patients with cancer over the age of 55 receiving outpatient palliative care (M = 65.80 years; SD = 7.45 years, Range = 55–88 years; 66% women). Interviews followed core questions asking patients about their life story and legacy. We used content-coding to evaluate the level of communion narrated in each interview, and mediation analyses to determine whether communion affected dignity impact.

Mediation analyses indicated that the extent to which patients narrated communion in their interview had a significant direct effect on post-test Dignity Impact. Communion partially mediated the effect of pre-test on post-test Dignity Impact. For both the life story and legacy segments of the session, narrating communion had a direct effect on post-test Dignity Impact.

Narrating communion serves as a mechanism for enhancing patient dignity during Dignity Therapy. Providers may consider explicitly guiding patients to engage in, elaborate on, communal narration to enhance therapeutic utility. In addition, encouraging patients with advanced illness to positively reflect on relationships in life may improve patient dignity outcomes in palliative and end-of-life care.

Dignity Therapy (DT) is a brief form of psychotherapy that helps people with life-threatening illnesses and their loved ones cope with emotional pain and demoralization. Unfortunately, not everyone has the opportunity to receive DT during their lifetime. Posthumous Dignity Therapy (PDT) was then devised to be administered to bereaved family members. However, PDT has not yet been validated or studied in the specific cultural and linguistic context of Portuguese-Brazilians. This study aims to fill this gap by validating PDT for the Portuguese (Brazilian) context.

Using Beaton’s methodology, including the processes of translation, synthesis, back-translation, evaluation by an expert committee, and pre-testing, the PDT Schedule of Questions underwent validation and cultural adaptation. The research was conducted in a Palliative Care Unit at a tertiary cancer hospital in Brazil.

The questionnaire was translated, back-translated, and evaluated by the panel of experts, obtaining a Content Validity Index of 0.97. During the pretest phase, it was observed that the participant’s interview method needed to be changed from remote (telephone or videoconference) to in-person. Additionally, it was necessary to modify some terms related to death and dying, as they caused discomfort to the participants. As a result of this process, the PDT was modified, and adapted to the Brazilian cultural and linguistic reality.

This validation study will be significant for future DT research from the caregivers’ perspective and for projects aiming to implement this therapeutic modality in palliative care units, in addition to helping participants remember their loved ones better by providing a tangible legacy document that assists them emotionally and materially in coping with the grieving process.

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.

To identify the prevalence of depression, anxiety, and psychosocial distress among Ugandan palliative care providers during the COVID-19 pandemic, measure providers’ perceived levels of social support, and identify factors affecting a provider’s likelihood of being depressed, anxious, distressed, or perceiving various levels of social support.

Data was collected from 123 palliative care providers using an online survey. Depression, anxiety, and psychological distress were measured using the Patient Health Questionnaire-9, the Generalized Anxiety Disorder-7, and the Self-Reporting Questionnaire, respectively. Information on perceived level of social support was gathered through the Multidimensional Scale of Perceived Social Support. The survey also asked about mental health resources available to providers at their place of work and what resources are still needed.

Participants ranged in age, gender, religion, marital status, clinical position, and years of experience in palliative care. Results indicate that 20% of respondents show signs of moderate to severe depression, 14% show signs of moderate to severe anxiety, and 33% show signs of psychological distress. Additionally, 50% of respondents reported a low total level of social support. Depression, anxiety, and psychological distress scores were all negatively correlated with perceived social support scores. Over 50% expressed a desire for additional mental health resources at their place of work.

In 2021–2022, the severity of depression, anxiety, and psychological distress varied among palliative care providers in Uganda, with some experiencing moderate to severe mental health effects. Higher degrees of depression, anxiety, and psychological distress were correlated with lower levels of perceived social support, highlighting the importance of social support during times of crisis. The results highlight a desire for improved access to mental health resources and will help providers and organizations provide better support and better prepare for future crises.

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.

In 2022, assisted suicide (AS) was legalized in Austria. We aimed to investigate the experiences and attitudes of palliative care (PC) and hospice nurses toward AS in Austria after the first year of implementation of the new law.

A cross-sectional survey was distributed online to nurses in every known specialized and general hospice and PC units in Austria (n = 255 units). The questionnaire included sociodemographic characteristics, the Assisted Suicide Attitude Scale, the Comfort Discussing Assisted Suicide Scale, and questions on recent experiences with AS requests. We used Spearman’s correlation coefficient for determining associations between sociodemographic characteristics and attitudes toward AS, as well as comfort discussing AS. For comparison of frequencies, we applied ꭓ2 tests. We computed a linear regression model to examine predictors for attitudes toward AS.

The total sample were N = 280 nurses. More than half (61.2%) indicated that they had cared for a patient who expressed a wish for AS within the first year of implementation. Though responses varied widely, more nurses expressed support for AS than those were opposed (50.36% and 31.75%, respectively). Factors that statistically contributed to more reluctance toward AS in the regression model were older age, religiousness, and experience of working with patients expressing a wish for AS.

This work provides valuable insight into nurses’ perceptions toward the legislation of AS in the first year since the new law was passed. The results can inform the future development of the AS system and support for nurses in end-of-life care, and critically contribute to international discussions on this controversial topic.

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.

Current recommendations do not separate adult and pediatric palliative care (PC) in terms of the personnel needed, or the distribution of care between community and hospital-based services. We evaluated the differences in the utilization of pediatric and adult hospital PC services for non-oncological patients.

Retrospective study. Parameters included demographics, underlying diagnoses, number of consultations per patient, duration of PC involvement, and follow-up. All non-oncology patients seen by the adult or pediatric PC teams between June 2021 and July 2023 at a single tertiary hospital.

A total of 445 adults and 48 children were seen by the adult and pediatric palliative teams, respectively. Adults were primarily seen in the terminal stages of common chronic diseases, with a high mortality rate. Children were mainly seen at a very young age with rare and complicated diseases. Children needed longer duration of follow-up (114 vs. 5 days, p < 0.001), more consultations (8.5 vs. 4, p < 0.001), and died less while hospitalized (25% of patients vs. 61.6%, p < 0.001).

Adult patients had relatively common diseases, seen and treated often by primary care practitioners, whereas children had rare life-limiting diseases, which primary care pediatricians may have limited experience with, and which require involvement of multiple specialized hospital-based services. Future healthcare PC planning should consider these factors in planning the primary setting for PC teams, specifically more training of adult general practitioners in PC skills, and earlier referral of pediatric patients to hospital-based PC.

This paper reviews the existing literature to identify specific challenges that may arise in the context of providing palliative and end-of-life (EOL) care for Hindu patients in the physical, psychological, and spiritual domains. We offer practical strategies where appropriate to mitigate some of these challenges. We review how the Hindu faith impacts EOL decision-making, including the role of the family in decision-making, completion of advance directives, pain management, and decisions around artificial nutrition and hydration (ANH) and cardiopulmonary resuscitation (CPR).

The PubMed, MEDLINE Complete, Cochrane, and Embase databases were searched for articles using the search strings combinations of keywords such as Palliative care, Hindu, Hinduism, End of Life Care, India, Spirituality, and South Asian. Once inclusion criteria were applied, 40 manuscripts were eligible for review.

Our results are organized into the following 4 sections – how Hindu religious or spiritual beliefs intersect with the physical, psychological, and spiritual domains: and decision-making at the EOL.

Hindu beliefs, in particular the role of karma, were shown to impact decision-making regarding pain management, ANH and CPR, and advance directive completion. The complexity of Hindu thought leaves a significant role for interpretation and flexibility for individual factors in decision-making at the EOL.