Standardized measures to evaluate neurological patients in palliative care are missing. The Integrated Palliative Outcome Scale, a self-report tailored for neurological patients (IPOS Neuro-S8) helps identify symptom burden but lacks validation in German. This study aimed to validate the IPOS Neuro-S8 in severely affected multiple sclerosis (MS) patients.

This validation study is a secondary analysis of data from a clinical phase II intervention study with severely affected MS patients. The original study enrolled German-speaking patients aged 18 with severe MS who receive an escalating immunotherapeutic agent and/or exhibit a high level of disability were recruited from the administrative district Cologne (#DRKS00021783). In this validation study, we evaluated construct, discriminant, and convergent validity, internal consistency, test–retest reliability, and sensitivity to change of the IPOS Neuro-S8, using the “Hamburger Lebensqualitätsmessinstrument” (HALEMS), and the Hospice and Palliative Care Evaluation supplemented by neurological symptoms (HOPE+) as comparison measures.

Data from 80 MS patients (mean age 56, SD = 11) were analyzed. Exploratory and confirmatory factor analyses revealed a 3-factor structure (r = 0.34–0.63), reflecting distinct clinical patterns, i.e., breath-mouth connection, pain-sleep cycle, and nausea-vomiting link. Significant convergent validity to hypothesized total score of the HOPE+ (rs(78) = 0.71, p < 0.001) and good discriminant validity using the HALEMS total score (rs(78) = 0.48, p < 0.001) were observed. Correlation with physical symptoms of the HALEMS was stronger than with nonphysical aspects. Internal consistency (Cronbach’s α = 0.67) and test–retest reliability (intraclass coefficient = 0.75) were acceptable.

IPOS Neuro-S8 displays promising psychometric properties for assessing palliative care symptoms in severe MS, a model for other severe neurological diseases due to MS's broad central nervous involvement, allowing findings to be transferable to other neurological diseases. A criterion for minimal clinically important difference was established to evaluate the sensitivity to change. Additional validation across different neurological conditions and disease severities is warranted to enhance generalizability and clinical utility.

End-of-life care poses significant ethical challenges for nurses, requiring a deep understanding of moral empathy and ethical decision-making. This study examines the impact of these factors on end-of-life decision-making among nurses in oncology and pain management units in Egypt.

A cross-sectional design was employed to gather data from participants at a single point in time, facilitating an analysis of the relationships among ethical principles, moral empathy, and nursing practice. The study involved 246 registered nurses with at least 6 months of experience, selected through stratified random sampling from oncology and pain management units in Damietta, Egypt. These settings were chosen due to their central role in palliative care, as Damietta serves as a regional healthcare hub with specialized units addressing chronic and end-of-life conditions. This selection allows for an in-depth exploration of the ethical dimensions involved in providing palliative care. Informed consent was acquired from all participants, ensuring confidentiality and the right to withdraw from the study at any time.

The findings indicated that 72% of participants reported high levels of moral empathy, which positively correlated with ethical decision-making scores (r = 0.65, p < 0.01). However, 58% of the nurses also reported experiencing moderate to high levels of moral distress in various clinical scenarios. Additionally, nurses in supportive ethical climates experienced significantly lower moral distress than those in less supportive settings (p < 0.05).

This study highlights the importance of integrating ethical training and moral empathy into nursing education and practice. The findings underscore the need for policy reforms to embed ethics and empathy training in nursing curricula and professional development programs, fostering ethical competence and enhancing patient care quality.

To explore the spiritual needs and resources of People with Amyotrophic Lateral Sclerosis (PALS) at different stages of its trajectory and to characterize the experiences of the current state of the disease.

A convergent mixed-methods study was conducted using qualitative and quantitative approaches. Participants were assessed using the clinical and sociodemographic data, ALSFRS-R (function assessment), and the GES Questionnaire to evaluate spiritual needs and resources. Data were collected through in-person or online interviews, transcribed and coded. The qualitative analysis was based on the content analysis method. Statistical analysis was performed using SPSS software. Both datasets were integrated during data analysis.

Twenty-four patients were interviewed, with a duration of the illness ranging from 1 year to 12 years. Participants were at different stages of functional dependence. Analyzing the open questions of the GES questionnaire, six categories were established related to the inner world of PALS: Concern, Nuisance, Help, Support, Safety, and Valorization. Contrary to what was hypothesized, no correlations were found between functionality and the spiritual dimensions. Spiritual needs and resources tend to vary with age, with younger ages presenting a more fragile spiritual dimension overall. Also, the intrapersonal and interpersonal dimension seems to play a central role in the lives of PALS. A negative correlation was identified between the feeling of connection to a supreme/transcendent reality and the level of educational qualifications.

Spirituality often provides crucial emotional support, meaning, and resilience during challenging times. Despite its importance, it is often overlooked in clinical settings. The study emphasizes the need for personalized, holistic care, which should include spiritual care support, regardless of the functional state, highlighting the importance of addressing both intrapersonal and interpersonal domains, resources and needs from early phases. Allowing to create a structured care plan that meets patients’ individual spiritual needs, that can contribute to a better QoL and reduce suffering.

This study aimed to explore what is important for hospice providers to know when a seriously ill parent has adolescent children.

The sample included 18 young adults (18–28 years old) whose parents died in hospice or palliative care while they were adolescents (12–18 years old). Semi-structured interviews were conducted virtually via Microsoft Teams. The interviews were audiotaped, transcribed verbatim, and analyzed using a thematic analysis. Themes emerged from the data and were determined by consensus.

The participants described a variety of skills that are important for hospice providers to know. They provided specific suggestions for hospice providers who seek to help adolescents navigate this critical time when their parents are dying or have recently died.

These results can also be used to inform the development of interventions that assist hospice providers with strategies tailored to an adolescent’s specific needs. Future research should investigate these topics with a larger, more diverse sample.

This study aimed to map the actual care pathways for pediatric and adult palliative care (PC) patients at a hospital in the Region of Murcia (Spain) utilizing Process Mining (PM) techniques. The goal was to identify inefficiencies and areas for improvement in providing comprehensive and coordinated care to enhance patient outcomes.

A retrospective review of anonymized clinical records was conducted, covering data from 2002 to 2021 for adult patients and from 2001 to 2021 for pediatric patients. The final dataset for adults comprised records from 85 patients and 2,696 episodes, and, for pediatric patients, the dataset included 57 individuals with 1,912 episodes. PM techniques (concretely, PMApp) facilitated the visualization and evaluation of actual care pathways, compared to theoretical models, highlighting bottlenecks and variabilities.

The analysis revealed distinct care pathways for adult and pediatric patients. Pediatric pathways showed inconsistencies with theoretical models due to variability in diseases and care needs, while adult pathways aligned better with expectations. Key inefficiencies included delays in shifting to home care and multiple visits to the hospital Emergency Department before referral to specialized teams. Simplified process models provided clearer insights into frequent care pathways and highlighted critical transition points, supporting optimization strategies.

The findings underscore the utility of PM in enhancing care pathway transparency, identifying inefficiencies, and supporting data-driven process redesign. The study advocates for updating theoretical models and adopting structured data collection to reduce variability and improve PC delivery. These measures are critical for achieving consistent, patient-centered care across diverse healthcare settings.

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.

Caregivers play a significant role in the process of Voluntary Assisted Dying (VAD), reporting stances of support, opposition, or ambivalence. Though caregiver vulnerability is recognized, little is understood about how caregivers adjust when patients seek VAD. We sought to appreciate how bereaved caregivers of patients in organizations that did not participate in VAD processed and adapted to the challenges faced.

We purposefully recruited caregivers from cases reviewed in a retrospective study exploring how VAD impacted the quality of palliative care. We further expanded sampling to maximize diverse views. We used qualitative interpretative phenomenological analysis to explore unique caregiver perspectives.

Twenty-three caregivers completed interviews. Most were female, Australian-born, retired, identified with no religion, bereaved for 1–3 years, and in a caregiving role for 1–5 years. Caregivers sought accompaniment and non-abandonment across all stages of VAD. Coping was enhanced through framing and reframing thought processes and reconciling values. Caregivers bore responsibility through heightened emotions and experienced isolation and anticipatory grief as they reconciled perceived societal attitudes. Caregivers additionally failed to understand the rationale behind organizational stances and were unable to articulate the moral conflicts that arose. Impartiality from professionals was valued for caregivers to sustain care for the patient.

Despite feelings of vulnerability and isolation, caregivers demonstrated benevolence, courage, and self-compassion, reframing and accommodating their concerns. Professional accompaniment and non-abandonment necessitate solidarity and empowerment, without necessarily enabling VAD. Findings demonstrated the need for individuals and organizations to clearly articulate their willingness to continue to accompany patients, regardless of their position on VAD.

Recent increases in homophobic and transphobic harassment, hate crimes, anti-lesbian, gay, bisexual, transgender, gender nonconforming, and queer (LGBTQ+) legislation, and discrimination in healthcare toward LGBTQ+ persons require urgent attention.

This study describes seriously ill LGBTQ+ patients’ and partners’ experiences of discriminatory care delivered by healthcare providers.

Qualitative data from a mixed-methods study using an online survey were analyzed using a grounded theory approach. Seriously ill LGBTQ+ persons, their spouses/partners and widows were recruited from a wide range of organizations serving the LGBTQ+ community. Respondents were asked to describe instances where they felt they received poor care from a healthcare provider because they were LGBTQ+.

Six main themes emerged: (1) disrespectful care; (2) inadequate care; (3) abusive care; (4) discriminatory care toward persons who identify as transgender; (5) discriminatory behaviors toward partners; and (6) intersectional discrimination. The findings provide evidence that some LGBTQ+ patients receive poor care at a vulnerable time in their lives. Transgender patients experience unique forms of discrimination that disregard or belittle their identity.

Professional associations, accrediting bodies, and healthcare organizations should set standards for nondiscriminatory, respectful, competent, safe and affirming care for LGBTQ+ patients. Healthcare organizations should implement mechanisms for identifying problems and ensuring nondiscrimination in services and employment; safety for patients and staff; strategies for outreach and marketing to the LGBTQ+ community, and ongoing staff training to ensure high quality care for LGBTQ+ patients, partners, families, and friends. Policy actions are needed to combat discrimination and disparities in healthcare, including passage of the Equality Act by Congress.

Effective communication during specialist palliative care (PC) referral is linked to improved health outcomes. Initiating a conversation about PC is difficult and poor communication can lead to stigma. The aim of this descriptive phenomenological study was to explore the communication experiences of persons referred to specialist PC services and their carers and explore strategies to improve such experiences.

Purposive sampling was used to recruit 17 participants who were either receiving specialist PC and/or caring for someone who was receiving specialist PC. Participants were recruited from a hospice. Inductive thematic analysis was conducted.

Four themes were identified: (i) The why, who, what, when, where, and how of PC referral; (ii) initial thoughts and feelings about referral to PC; (iii) enhancing the communication of PC referral; and (iv) addressing practical needs during PC referral. Participants were referred either through their general practitioner or oncologist. Initially, participants linked PC referral to death. This perception changed when participants started availing of the services. Compassion, empathy, hope, privacy, in-person communication, individualized referral, and information dosing were identified as building blocks for effective communication. Participants stressed the importance of raising public awareness of PC and addressing the practical needs of individuals being referred.

The communication of PC referral should be tailored to meet the individual needs of patients and carers. Delivering clear and simple information is important to help patients and carers understand and accept the referral.

While dying at home is often described as desirable, to our knowledge, no reviews have focused specifically on people’s reasons for wanting to die at home. This review describes the breadth of what is known about motivations, attitudes, ideas, and reasons underlying the decision to choose “home” as one’s preferred placed of death.

This review was guided by a scoping review methodology following a five-stage approach including: (1) identify the research question, (2) identify relevant studies, (3) select studies based on inclusion/exclusion criteria, (4) chart the data, and (5) summarize and report the results.

Seventeen articles were identified that met inclusion/exclusion criteria and discussed motivations underlying people’s desires to die at home. Thirty-five percent of studies were from Canada (n = 6/17), 29% were from Europe (n = 5/17), and 29% were from Asia (n = 5/17). Most studies (n = 11/17) used methods that involved collecting and/or analyzing interview data from participants, while the remaining studies (n = 6/17) used methods that involved administering and analyzing surveys or questionnaires. Characteristics of participants varied, but most commonly, studies included people with advanced illnesses who were nearing death (35% of studies, n = 6/17). Motivations for choosing a home death included desires to preserve a sense of self, factors relating to interpersonal relationships, and topics such as culture, religion, socioeconomic status, living situation, and lived experience.

The many interconnected reasons that lead people to choose a home death vary, as individuals have a range of motivations for choosing to die at home, which are highly influenced by contextual and cultural factors. Ultimately, this review will provide a comprehensive description of factors which may inform end-of-life planning, highlighting needs to be considered when planning the preferred location of a death.

This study aimed to refine the content of a new patient-reported outcome (PRO) measure via cognitive interviewing techniques to assess the unique presentation of depressive symptoms in older adults with cancer (OACs).

OACs (≥ 70years) with a history of a depressive disorder were administered a draft measure of the Older Adults with Cancer – Depression (OAC-D) Scale, then participated in a semi-structured cognitive interview to provide feedback on the appropriateness, comprehensibility, and overall acceptability of measure. Interviews were audio-recorded and transcribed, and qualitative methods guided revision of scale content and structure.

OACs (N = 10) with a range of cancer diagnoses completed cognitive interviews. Participants felt that the draft measure took a reasonable amount of time to answer and was easily understandable. They favored having item prompts and response anchors repeated with each item for ease of completion, and they helped identify phrasing and wording of key terms consistent with the authors’ intended constructs. From this feedback, a revised version of the OAC-D was created.

The OAC-D Scale is the first PRO developed specifically for use with OACs. The use of expert and patient input and rigorous cognitive interviewing methods provides a conceptually accurate means of assessing the unique symptom experience of OACs with depression.

Psychological and existential distress is prevalent among patients with life-threatening cancer, significantly impacting their quality of life. Psilocybin-assisted therapy has shown promise in alleviating these symptoms. This systematic review aims to synthesize the evidence on the efficacy and safety of psilocybin in reducing cancer-related distress.

We searched MEDLINE, APA PsycINFO, Cochrane database, Embase, and Scopus from inception to February 8, 2024, for randomized controlled trials (RCTs), open-label trials, qualitative studies, and single case reports that evaluated psilocybin for cancer-related distress. Data were extracted on study characteristics, participant demographics, psilocybin and psychotherapy intervention, outcome measures, and results. Two authors independently screened, selected, and extracted data from the studies. Cochrane Risk of Bias for RCTs and Methodological Index for Non-Randomized Studies criteria were used to evaluate study quality. This study was registered with PROSPERO (CRD42024511692).

Fourteen studies met the inclusion criteria, comprising three RCTs, five open-label trials, five qualitative studies, and one single case report. Psilocybin therapy consistently showed significant reductions in depression, anxiety, and existential distress, with improvements sustained over several months. Adverse effects were generally mild and transient.

This systematic review highlights the potential of psilocybin-assisted therapy as an effective treatment for reducing psychological and existential distress in cancer patients. Despite promising findings, further large-scale, well-designed RCTs are needed to confirm these results and address existing research gaps.

This study aimed to examine the impact of perceived caregiver burden and associated factors on the anger levels and anger expression styles of family caregivers for patients receiving palliative care at home.

This cross-sectional and exploratory correlational type study was conducted with 343 family caregivers. Data were collected face-to-face between March and September 2022 using a Caregiver and Care Recipient Information Form, the Burden Interview, and the Trait Anger and Anger Expression Scale.

There was a significant from very weak to weak correlation between the caregiver burden scores and trait anger, anger-in, anger-out, and anger control scores. The caregiver burden increased trait anger, anger-in, and anger-out while decreasing anger control. The caregiver burden, daily caregiving hours, presence of another dependent at home, presence of a separate room for the care recipient, income level, chronic illness of caregiver, duration of caregiving per month, and care recipient gender explained 17.2% of the total variation in anger control scores.

The caregiver burden levels and anger expression styles of family caregivers vary depending on the characteristics of both the caregiver and the care recipient. Family members may experience an increase in perceived caregiver burden, which can lead to elevated levels of trait anger, suppression of anger, and reduced anger control. Healthcare professionals should monitor the family caregivers’ caregiver burden and anger levels. Family caregivers should be encouraged and given opportunities to express their feelings and thoughts about caregiving. Strategies aimed at reducing the caregiver burden and coping with feelings of anger should be planned for the family members of patients receiving palliative care at home.

To describe the frequency of prognostic awareness (PA) in a population of advanced cancer patients in a Latino community and to explore the relationship between accurate PA with emotional distress and other covariates.

In this cross-sectional study performed in Puente Alto, Chile, advanced cancer patients in palliative care completed a survey that included a single question to assess PA (Do you believe your cancer is curable? yes/no). Patients reporting that their cancer was not curable were considered as having accurate PA. Demographics, emotional distress, quality of life, and patient perception of treatment goals were also assessed. Analyses to explore associations between PA and patient variables were adjusted.

A total of 201 patients were included in the analysis. Mean age was 65, 50% female. One hundred and three patients (51%) reported an accurate PA. In the univariate analysis, accurate PA was associated with not having a partner (p = 0.012), increased emotional distress (p = 0.013), depression (p = 0.003), and were less likely to report that the goal of the treatment was to get rid of the cancer (p < 0.001). In the multivariate analysis, patients with accurate PA had higher emotional distress or depression, were less likely to have a partner, and to report that the goal of the treatment was to get rid of the cancer.

Half of a population of Latino advanced cancer patients reported an accurate PA. Accurate PA was associated with increased emotional distress, which is similar to what has been reported in other countries. Weaknesses in prognostic disclosure by clinicians, local cultural factors, or higher motivation to seek prognostic information among distressed cancer patients could explain this association. Strategies to emotionally support patients when discussing prognostic information should be implemented.

Patients with cancer benefit greatly from receiving palliative care (PC), improving their overall survival and quality of life. Despite its benefits, PC is underutilized among patients with hematologic malignancies (HMs), particularly among Black patients, who face higher symptom burdens and lower survival rates compared to White patients. The purpose of this review was to identify and describe what is known about PC use among Black HM patients in the United States.

This review was conducted using the Joanna Briggs Institute approach for scoping reviews and included a search of the databases MEDLINE (PubMed), Embase (Elsevier), Scopus and Web of Science (Clarivate). The search was developed and conducted by a professional medical librarian in consultation with the author team and focused on keywords such as Black/African American patients, HM, and PC. Articles were screened and selected based on predefined inclusion criteria and carried out using Covidence software for systematic review management.

Seven publications were included in the final sample and most used quantitative methods and data from large national databases such as the National Cancer Database. Four of the studies reported that Black patients with HM were less likely to receive or use PC compared to White patients. Access to PC was associated with better outcomes, such as lower hospital charges and a reduced likelihood of dying within 30 days of initiating palliative radiotherapy.

This scoping review highlights ongoing inequities in the use of PC among Black patients with HM which mirrors trends in patients with solid cancers. Future studies should be conducted to understand the determinants of these disparities and to also build testable interventions to improve PC use within this underserved population.

Palliative care services are unavailable for the vast majority of children in Bhutan. Children’s palliative care has not been incorporated into training programs for health professions, leading to limited knowledge and awareness of how best to support children facing serious or life-threatening conditions.

To describe the impact of the Project ECHO children’s palliative care course on participants’ knowledge, comfort, and attitudes and to evaluate the overall acceptability of an online training to support palliative care training in Bhutan.

Before-and-after surveys of program participants were conducted, assessing changes in knowledge, comfort, and attitudes. Participants’ overall experiences and acceptability of the learning program were assessed through an end-of-program survey.

Participants were primarily nurses (49%) or physicians (34%). Most participants (68%) worked in pediatric and/or neonatal care. Participants’ knowledge of core palliative care concepts improved significantly between the beginning and end of the course. Participants’ comfort and attitudes toward palliative care also improved, with significance effect sizes in most domains (11/18). Satisfaction with the program was high, with 100% of participants agreeing that the training was applicable to their clinical practice. Although most participants (56%) identified a personal need for additional clinical training to support practice change.

Project ECHO can be used to deliver palliative care education, with improved palliative care knowledge, comfort, and attitudes among program participants. A short online training program can generate interest in palliative care, which can be leveraged to further develop palliative care services in settings where palliative care is currently unavailable.