The aim of this study is to culturally adapt and validate the Frommelt Attitude Toward Care of the Dying Scale Form B (FATCOD-B) in Spanish health professionals.

A cultural adaptation and scale validation was carried out to evaluate the validity of appearance, content and construct, reliability and feasibility. The psychometric validation of the FATCOD-B was carried out on a sample of 2,446 Spanish physicians, nurses, psychologists, and social workers and students of these disciplines, between January 2017 and December 2018. This sample was selected by intentional sampling. Descriptive statistics were used to characterize the sample. An exploratory multi-group factor analysis was performed, internal consistency was evaluated by calculating Cronbach's α and stability by test–retest.

A total of 2,446 people participated in the study, 1,134 students and 1,312 professionals. The exploratory multi-group factor analysis revealed a two-dimensional factor structure, with a total of 17 items retained in the model from the 30 of the original scale. The results showed that this version has adequate reliability (α = 0.79) and for each subscale, and stability (ICC = 0.843, p < 0.001).

FATCOD has been used with physicians and nurses from different countries. However, no reports have been found in the literature of its use with psychologists and social workers. It is important to have an instrument that allows us to know the attitudes of these professionals since they are all directly involved in the care of patients at the end of their lives and their families. The Spanish version of FATCOD-B has proven to be a reliable and valid instrument for its use in Spanish health professionals while allowing comparisons between disciplines.

Considering the ethnic, racial, and cultural diversity in the U.S., we aim to explore the experiences of healthcare chaplains as they provide culturally sensitive care to diverse patients and their families.

This is a qualitative study. Individual interviews were conducted with 14 healthcare chaplains recruited from 3 U.S. chaplaincy organizations.

Thematic analysis with constant comparison yielded 6 themes in the chaplains’ experiences: (1) the diverse roles of chaplains; (2) their high levels of comfort in working with diverse populations, attributed to cultural sensitivity and humility training; (3) cues for trust-building; (4) common topics of diversity, equity, and inclusion discussed; (5) gaps in chaplaincy training; and (6) the importance of collaboration and negotiation with healthcare professionals to accommodate cultural needs.

This research highlights the valuable role of chaplains in providing culturally sensitive care and suggests areas for improving chaplaincy training and education to better serve diverse patient populations.

Caregivers are critical in advanced care planning (ACP) discussions, which are difficult but necessary to carry out patients’ goals of care. We developed and evaluated the feasibility and acceptability of a communication training to equip caregivers of patients with malignant brain tumors with skills to navigate ACP conversations.

Caregivers completed a 2-h virtual training addressing ACP Discussions with Your Loved One and ACP Discussions with the Medical Team. A pre-training assessment was completed at baseline and a training evaluation was completed one day post-training. A subset of participants completed semi-structured interviews 2 months post-training.

Of 15 caregivers recruited, 9 attended the training and 4 completed qualitative interviews. Post-training, 40% felt confident in discussing ACP with loved ones and 67% felt confident doing so with healthcare professionals; 100% reported feeling confident in using skills learned in the training to facilitate these conversations. Data from qualitative interviews highlighted additional benefits of the training in empathic communication skills and fostering social support.

Our communication skills training shows promise in supporting caregivers’ skills and confidence in engaging in ACP discussions with patients and healthcare providers. A future randomized controlled trial with a larger and more diverse caregiving sample is needed to determine training efficacy.

The number of patients treated with prolonged mechanical ventilation (PMV) is steadily rising. Traditionally treated within specialized long-term care facilities (LTCFs), healthcare providers are increasingly promoting homecare as a technologically safe, humane, and cheaper alternative. Little is known concerning their informal caregivers (ICGs), despite their crucial role in facilitating care. This study examines caregiver strain among the primary ICG of PMV patients treated at home vs. LTCF.

This study was an observational cross-sectional study. The study enrolled 120/123 PMV patients ≥18 years within the study region (46 treated with homecare/74 treated at the LTCF) and 106 ICGs (34 ICGs/46 homecare patients and 72 ICGs/74 LTCF patients). Caregiver assessment included the 13-item Modified Caregiver Strain Index (Mod CSI) (0–26 maximum); patient assessment included symptom burden (the revised Edmonton Symptom Assessment System).

The mean age of ICGs was 58.9 years old; 60.4% were females; 82.1% were married; 29.2% were patient's spouses; and 40.6% were patient's children. The total Mod CSI was 13.58 (SD 6.52) and similar between home vs. LTCF (14.30 SD 7.50 vs. 13.26 SD 6.03, p = 0.50), or communicative vs. non-communicative patients (13.50 SD 7.12 vs. 13.64 SD 6.04, p = 0.93). Hierarchical analysis identified three clusters of caregiver strain, with ICGs at home vs. LTCF reporting significantly lower mood strain, higher burden, and similar levels of lifestyle disturbance. In adjusted models, homecare was significantly associated with reduced mood strain and increased burden, while increased patient symptomatology was significantly associated with total strain, mood, and burden strain clusters.

Recognizing the different patterns of caregiver strain at home or LTCF is a prerequisite for addressing their palliative care needs and improving the wellbeing and resilience of informal caregivers, who often play a critical role in deciding whether to treat the PMV patient at home or LTCF.

Planning for end-of-life (EOL) and future treatment and care through advance care planning (ACP) is being increasingly implemented in different healthcare settings, and interest in ACP is growing. Several studies have emphasized the importance of relatives participating in conversations about wishes for EOL and being included in the process. Likewise, research has highlighted how relatives can be a valuable resource in an emergency setting. Although relatives have a significant role, few studies have investigated their perspectives of ACP and EOL conversations. This study explores relatives’ experiences of the benefits and disadvantages of having conversations about wishes for EOL treatment.

Semi-structured telephone interviews were held with 29 relatives who had participated in a conversation about EOL wishes with a patient and physician 2 years prior in a variety of Danish healthcare settings. The relatives were interviewed between September 2020 and June 2022. Content analysis was performed on the qualitative data.

The interviews revealed two themes: “gives peace of mind” and “enables more openness and common understanding of EOL.” Relatives found that conversations about EOL could help assure that patients were heard and enhance their autonomy. These conversations relieved the relatives of responsibility by clarifying or confirming the patients’ wishes, and they also made the relatives reflect on their own wishes for EOL. Moreover, they helped patients and relatives address other issues regarding EOL and made wishes more visible across settings.

The results indicate that conducting conversations about wishes for EOL treatment and having relatives participate in those conversations were perceived as beneficial for both relatives and patients. Involving relatives in ACP should be prioritized by physicians and healthcare personnel when holding conversations about EOL.

This pilot study aimed to assess the feasibility and impact of a narrative medicine group for patients receiving palliative care.

This pilot study aimed to assess the feasibility of a six-session, physician-led narrative medicine group for patients receiving palliative care. Ten patients were recruited by their outpatient providers. Symptom severity and patient dignity scores were collected pre-intervention, at the mid-point, and post-intervention using the Patient Dignity Inventory (PDI) and Edmonton Symptom Assessment Survey (ESAS). Qualitative reports of pain, expectations, and anticipated challenges were collected before the intervention. Participant interviews were conducted after the intervention to assess overall experience in the group, challenges experienced, recommendations for future endeavors, and general feedback.

No significant changes in PDI or ESAS scores were observed at baseline, 3 weeks, and 6 weeks. Participants reported overall satisfaction, with 8 of 9 participants stating they “strongly agree” they would participate in the group again and recommend the group to others. Qualitative responses indicated benefits in the realms of relating to other patients, subjective reduction in pain, and relieving feelings of isolation.

A narrative medicine group for ambulatory patients receiving palliative care appeared to be both beneficial and feasible when delivered through a virtual format. A randomized trial with a larger sample is needed to fully assess the impacts of engaging in narrative work on symptom burden, survival, and quality of life.

Final conversations (FCs) go beyond how patients want to be cared for at the end of life (EOL) and focus on messages of love, identity specific, and unique to an individual and relationship that requires self-examination, everyday talk that normalizes a difficult situation, religious/spiritual messages, and if needed, difficult relationship talk to heal broken relationships. The purpose of the Catalyzing Relationships at the End of Life (CAREol) program was to provide interdisciplinary education to nursing and medical students and clinical faculty about facilitating FCs among patients and families.

This two-part, quasi-experimental program consisted of a cognitive (online) and experiential (live simulation) curriculum experience. Program curriculum, including video vignettes, readings, and live simulation (utilizing actors), was developed by the study team. Reflective journaling and researcher designed pre- and post-tests were used to assess comfort, confidence, importance, and distress regarding FCs and collaboration with other disciplines.

The pre-/post-test questions demonstrate statistical significance based on a paired t-test with effect sizes supporting the practical importance of the findings for effect size. Preliminary content and thematic analysis of qualitative responses describe categories of the mock team meeting experience and interaction with the actors to change patient and family outcomes.

Early intervention with the CAREol program provides a framework to help students and clinical faculty facilitate FCs that may result in peace and comfort for patients and families during a difficult time.

To develop and validate an English and Kannada version of the questionnaire to assess awareness and knowledge of advance care planning (ACP) among end-stage kidney disease (ESKD) patients, caregivers, and healthcare providers.

The questionnaire was developed from the published literature on ACP use in ESKD setting after a literature search. An expert panel consisting of nephrologists, palliative medicine physicians, ESKD patients, and their family caregivers participated in the content validity of the questionnaire using the Delphi process. The study was conducted between August 2021 and July 2022 at a tertiary care hospital in India. A validated questionnaire was administered to eligible 30 ESKD patients, 30 caregivers, and 10 health care professionals. A retest was carried out 1 week after the first administration.

The content validity ratio of patient, caregiver, and health care professions questions ranged from 0.6 to 1 and Cronbach’s α value was 0.737 to 0.925. The intraclass correlation coefficient values for the test–retest of all three sections of this questionnaire varied from 0.879 to 0.972.

The developed questionnaire is a reliable and valid method for assessing the preference and knowledge of ACP in ESKD patients, family caregivers, and kidney care providers both in English and Kannada.

Psychological consequences of grief among relatives are insufficiently known. We reported incidence of prolonged grief among relatives of deceased patients with cancer.

Prospective cohort study of 611 relatives of 531 patients with cancer hospitalized for more than 72 hours and who died in 26 palliative care units was conducted. The primary outcome was prolonged grief in relatives 6 months after patient death, measured with the Inventory Complicated Grief (ICG > 25, range 0–76, a higher score indicates more severe symptoms) score. Secondary outcomes in relatives 6 months after patient death were anxiety and depression symptoms based on Hospital Anxiety and Depression Scale (HADS) score (range 0 [best]–42 [worst]), higher scores indicate more severe symptoms, minimally important difference 2.5. Post-traumatic stress disorder symptoms were defined by an Impact Event Scale-Revised score >22 (range 0–88, a higher score indicates more severe symptoms).

Among 611 included relatives, 608 (99.5%) completed the trial. At 6 months, significant ICG scores were reported by 32.7% relatives (199/608, 95% CI, 29.0–36.4). The median (interquartile range ICG score) was 20.0 (11.5–29.0). The incidence of HADS symptoms was 87.5% (95% CI, 84.8–90.2%) at Days 3–5 and 68.7% (95% CI, 65.0–72.4) 6 months after patient’s death, with a median (interquartile range) difference of −4 (–10 to 0) between these 2 time points. Improvement in HADS anxiety and depression scores were reported by 62.5% (362/579) relatives.

These findings support the importance of screening relatives having risk factors of developing prolonged grief in the palliative unit and 6 months after patient’s death.

To evaluate the effectiveness of spiritual care training on medical students’ self-reported competencies.

This is a quasi-experimental (controlled and non-randomized) study including 115 Brazilian medical students. Participants were enrolled into 2 groups: fourth-year students (n = 64) who received spiritual care training and sixth-year students (n = 51) who did not receive this training – control group (i.e., usual teaching). Participants answered a self-reported Spiritual Care Competence Scale. Comparisons between groups were performed and effect sizes were reported.

Providing a spiritual care training resulted in significantly higher self-reported scores for the dimensions of “Assessment” (d = 0.99), “Improvement of care” (d = 0.69), “Counseling (d = 0.88),” “Referral” (d = 0.75), and “Total Spiritual Care” (d = 1.044) as compared to the control group. Likewise, 21 out of 27 items of the Spiritual Care Competence Scale were significantly higher for the intervention group, presenting effect sizes (d) ranging between 0.428 and 1.032.

Medical students receiving spiritual care training showed greater self-reported competencies as compared to those in the usual teaching. These results reinforce the importance of promoting spirituality teaching in medical schools.

Accurate prognostic understanding among patients with advanced cancer and their caregivers is associated with greater engagement in advance care planning (ACP) and receipt of goal-concordant care. Poor prognostic understanding is more prevalent among racial and ethnic minority patients. The purpose of this study was to examine the feasibility, acceptability, and impact of a patient–caregiver communication-based intervention to improve prognostic understanding, engagement in ACP, and completion of advance directives among a racially and ethnically diverse, urban sample of patients and their caregivers.

Patients with advanced cancer and their caregivers (n = 22 dyads) completed assessments of prognostic understanding, engagement in ACP, and completion of advance directives at baseline and post-intervention, Talking About Cancer (TAC). TAC is a 7-session intervention delivered remotely by licensed social workers that includes distress management and communication skills, review of prognosis, and information on ACP.

TAC met a priori benchmarks for feasibility, acceptability, and fidelity. Prognostic understanding and engagement in ACP did not change over time. However, patients showed increases in completion of advance directives.

TAC was feasible, acceptable, and delivered with high fidelity. Involvement of caregivers in TAC may provide added layers of support to patients facing advanced cancer diagnoses, especially among racial and ethnic minorities. Trends indicated greater completion of advance directives but not in prognostic understanding or engagement in ACP. Future research is needed to optimize the intervention to improve acceptability, tailor to diverse patient populations, and examine the efficacy of TAC in a randomized controlled trial.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that, so far, is considered always fatal. Treatments mainly consist in increasing survival and aim to improve the quality of life of people with ALS (pwALS). Social support and spirituality have been shown to play a key role in pwALS’ quality of life. Our study explored it in depth by investigating the underlying mechanisms linking social support, spirituality, and emotional well-being.

Thirty-six pwALS underwent a battery of tests evaluating emotional well-being (emotional well-being scale of the 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire), social support (6-item Social Support Questionnaire), and spiritual well-being (12-item Functional Assessment of Chronic Illness Therapy – Spiritual well-being). Our recruitment was web-based through the FILSLAN and the ARSLA websites as well as through Facebook® advertisements (ALS groups). Data were analyzed by Pearson correlation analysis and Process macro was used in an SPSS program to analyze the mediator variable effect.

Availability of social support, spiritual well-being, and 2 of its dimensions, i.e., meaning and peace, were positively correlated with emotional well-being. The mediational analyses showed that spiritual well-being, meaning, and peace act as mediators in the association between availability of social support and good emotional well-being.

Availability of social support and spirituality are essential for the emotional well-being of pwALS. Spirituality as a mediator between availability of social support and emotional well-being appears as real novel finding which could be explored further. Spiritual well-being, meaning, and peace appear as coping resources for pwALS. We provide practical guidance for professionals working with pwALS.

Accurate prognostication is important for patients and their families to prepare for the end of life. Objective Prognostic Score (OPS) is an easy-to-use tool that does not require the clinicians’ prediction of survival (CPS), whereas Palliative Prognostic Score (PaP) needs CPS. Thus, inexperienced clinicians may hesitate to use PaP. We aimed to evaluate the accuracy of OPS compared with PaP in inpatients in palliative care units (PCUs) in three East Asian countries.

This study was a secondary analysis of a cross-cultural, multicenter cohort study. We enrolled inpatients with far-advanced cancer in PCUs in Japan, Korea, and Taiwan from 2017 to 2018. We calculated the area under the receiver operating characteristics (AUROC) curve to compare the accuracy of OPS and PaP.

A total of 1,628 inpatients in 33 PCUs in Japan and Korea were analyzed. OPS and PaP were calculated in 71.7% of the Japanese patients and 80.0% of the Korean patients. In Taiwan, PaP was calculated for 81.6% of the patients. The AUROC for 3-week survival was 0.74 for OPS in Japan, 0.68 for OPS in Korea, 0.80 for PaP in Japan, and 0.73 for PaP in Korea. The AUROC for 30-day survival was 0.70 for OPS in Japan, 0.71 for OPS in Korea, 0.79 for PaP in Japan, and 0.74 for PaP in Korea.

Both OPS and PaP showed good performance in Japan and Korea. Compared with PaP, OPS could be more useful for inexperienced physicians who hesitate to estimate CPS.