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.

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.