The HOPE spiritual assessment tool (HOPE tool), developed by Anandarajah and Hight, is a clinician-administered tool used to support the identification of patients’ existential, spiritual, and religious concerns. In Sweden, a foundational translation exists, but a culturally adapted version suited to a secular and multicultural context is lacking. This study aimed to develop a culturally adapted Swedish version (HOPE-SE) and assess its comprehensibility (face validity) and perceived relevance and coverage (content validity) among specialized palliative care professionals.

Building on an earlier Swedish translation of the original 18-item HOPE, we conducted an observational cross-sectional development and expert evaluation study, in accordance with the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) guidelines, to simplify wording, improve item focus, streamline flow, and add prompts addressing non-religious existential concerns, resulting in a 16-item draft (HOPE-SE). Expert evaluation was conducted by 18 interdisciplinary experts in specialized palliative care (nurses, n = 6; physicians, n = 9; social workers, n = 3) who provided structured written feedback and participated in cognitive debriefing interviews. The written evaluation was summarized descriptively. The interviews were analyzed using descriptive content analysis of transcripts of the digitally recorded interviews.

Experts generally perceived HOPE-SE as understandable, acceptable, and clinically useful for initiating conversations about existential, spiritual, and religious concerns. Feedback led to minor wording refinements, clarification of potentially sensitive formulations, and the addition of a brief consent-based introduction to support timing and patient autonomy. The final HOPE-SE was approved by all experts and by the original HOPE author.

HOPE-SE provides the first expert-reviewed Swedish conversation guide addressing existential, spiritual, and religious needs, intended to support spiritual history-taking in a multicultural healthcare context. Patient studies are needed to evaluate content validity and implementation in Swedish settings.

Older adults with cancer frequently experience high symptom burden, psychological distress, and reduced quality of life. Integrating palliative nursing interventions into routine oncology care has the potential to improve these outcomes, yet evidence examining their measurable effects remains limited. This study aimed to examine the effects of integrated palliative nursing interventions on quality of life, psychological outcomes, and symptom burden among older adults with cancer.

A quasi-experimental one-group pre-test–post-test design was conducted at King Khaled Hospital, Al-Kharj, Saudi Arabia, including 80 older adults (≥60 years) with confirmed cancer diagnosis. Participants received a structured 6-week integrated palliative nursing intervention comprising 12 sessions (2 sessions/week) addressing physical, psychological, social, functional, and spiritual needs. Outcome measures included the Functional Assessment of Cancer Therapy-General (FACT-G) for quality of life, the National Comprehensive Cancer Network (NCCN) Distress Thermometer for psychological outcomes, and the Edmonton Symptom Assessment System (ESAS-r) for symptom burden. Pre- and post-intervention assessments were conducted, and data were analyzed using paired t-tests, Pearson correlations, and multiple linear regression.

All 80 participants completed the study, and no attrition was observed during the 6-week intervention period. Post-intervention, participants demonstrated significant improvements in overall quality of life (FACT-G total: 39.65 ± 5.51 → 66.41 ± 6.25, p < .001) and all subscales. Distress scores (NCCN) decreased from 21.93 ± 2.49 to 6.99 ± 2.37 (p < .001), and total symptom burden (ESAS) declined from 63.56 ± 6.31 to 41.09 ± 6.88 (p < .001). Regression analysis identified baseline scores as significant predictors of post-intervention outcomes: pre-intervention FACT-G scores and cancer type for quality of life [R2 = 0.660, F (8, 71) = 17.199, p < .001), pre-intervention NCCN scores for distress (R2 = 0.219, F (8, 71) = 2.487, p = .019), and pre-intervention ESAS scores for symptom burden (R2 = 0.757, F (8, 71) = 27.697, p < .001). These results indicated that baseline status strongly predicts post-intervention outcomes, while demographic and clinical variables had minimal impact.

Structured integrated palliative nursing interventions significantly enhance quality of life and reduce psychological distress and symptom burden in older adults with cancer. Incorporating multidimensional, patient-centered palliative care within routine oncology practice can improve clinical outcomes, with baseline status serving as an important determinant of intervention effectiveness.

Integration of home-based palliative care (PC) enables patients to receive care at home, fosters family involvement, and reduces healthcare costs. Despite its benefits, nurses report challenges in delivering competent PC, and limited research has explored how home care nurses perceive their own competence and self-efficacy within this context.

The study aimed to explore Ontario nurses’ perceived competence and self-efficacy in home-based PC delivery. It also examined the relationship between both constructs, perceived competence and self-efficacy.

A cross-sectional design was used with 2 validated survey tools: the 10-domain Palliative Care Nursing Self-Competence scale and the 2-domain Palliative Care Self-Efficacy scale. Ontario home care and nursing organizations were contacted to assist with recruitment by disseminating a Qualtrics survey link via mass email to nurses who had provided home-based PC. A minimum of 219 participants was required based on a G*Power analysis. Data were collected over 2 months with 2 reminder emails. Descriptive analysis and Spearman’s rank correlation were conducted to address the research questions.

Seventy-two registered nurses and 38 registered practical nurses reported the highest levels of perceived competence in addressing functional care, while spiritual care emerged as the most challenging domain. Self-efficacy was higher in psychosocial care than in symptom management. A strong positive correlation was found between perceived competence and self-efficacy (ρ = .69, p <.001), highlighting the interconnected nature of these constructs in home-based PC.

Nurses’ low perceived competence and self-efficacy in spiritual care and symptom management highlight gaps in meeting patients’ holistic care needs. Nurses must be better equipped to manage the psychosocial and spiritual care needs of patients and families. Strengthening training and resources can enhance holistic PC delivery and nurses’ preparedness, thereby supporting nurse retention and the quality and sustainability of home-based PC.

Patients hospitalized with a life-limiting illness, along with their loved ones, frequently experience anxiety, stress, and pain. Legacy building through storytelling and music may alleviate emotional strain and provide comfort. Musical Rounds is a novel music medicine program designed to reduce distress and support legacy building for adult patients receiving palliative care and their loved ones.

This multisite, mixed-methods, pre–post feasibility study was conducted across 3 hospitals in California, USA. Participants engaged in live bedside recording sessions in which personal stories were shared with real-time musical improvisation provided by a clinician-musician. Afterward, participants received a personalized edited recording combining voice and improvised music. Pain, stress, anxiety, and comfort were assessed before and after each session using a 0–10 numeric rating scale. Perceived mood changes were assessed through directed qualitative content analysis.

We invited 100 adult patients hospitalized with a life-limiting illness and their loved ones to participate. If patients were unable to respond, loved ones participated on their behalf. Patients (n = 79) demonstrated statistically significant within-group differences between pre- and post-session assessments, including lower pain (−1.58, p < .001), stress (−2.89, p < .001), and anxiety (−2.73, p < .001), and higher comfort (+1.61, p < .001). Loved ones (n = 42) reported lower stress (−3.14, p < .001) and anxiety (−2.86, p < .001), and higher comfort (+1.83, p = .004). Directed content analysis indicated perceived mood improvement in 59% (47/80) of patients and 68% (30/44) of loved ones.

Musical Rounds, a personalized music and storytelling session for hospitalized patients with life-limiting illness and their loved ones, was associated with lower self-reported stress, pain (patients only), and anxiety, and higher comfort and perceived mood across 3 hospitals. Findings demonstrate the feasibility and suggest potential benefits of music medicine–supported legacy building in palliative care. Controlled studies with independent assessors are needed to further evaluate efficacy.

The increasing presence of artificial intelligence (AI), electronic patient-reported outcomes (ePROMs), and digital infrastructures in palliative care is transforming how clinical encounters are organized and how suffering is interpreted. These technological shifts heighten the risk of relational compression and a reduction of dignity to measurable outputs. This paper proposes the DiRePal model (Relational–Temporal Dignity in Palliative Care) as a philosophical framework to re-examine dignity beyond coherent narrative identity or autonomy-centered ethics, emphasizing relational presence, temporal sensitivity, and structural conditions of care.

A philosophical–ethical analysis informed by narrative identity (P. Ricoeur), ethics of alterity (E. Levinas), capabilities theory (M. Nussbaum), and care ethics (J. Tronto). Critical readings of dignity frameworks, AI ethics, and digital health literature were synthesized to develop a relational–temporal account of dignity and 2 operational concepts: the temporal dignity indicator and the architecture of prudence.

While digital tools can enhance communication and support anticipatory care, they also risk reducing patients to data profiles, narrowing listening practices, and eroding opportunities for narrative, silence, and relational presence. The DiRePal model reframes dignity as a fluctuating, co-constructed achievement that depends on temporal attentiveness, ethical listening, institutional conditions, and prudent integration of AI and ePROMs. It further expands dignity to include post-biographical dimensions such as memory, grievability, and digital legacy.

End-of-life care in the algorithmic age requires an ethics that recognizes dignity as relational, temporal, and structurally mediated. The DiRePal model offers clinicians and institutions a conceptual grammar to resist technological reductionism, protect time for presence, and safeguard the narrative and post-biographical continuity of persons whose voices may be fragmented, vulnerable, or digitally extended.

There is a growing need to enhance healthcare providers’ spiritual care competence, including for people receiving palliative care. A preceding study of predictors of spiritual care competence in a general group of nurses found that more competent nurses rated significantly higher in spiritual training adequacy, frequency of spiritual care provision, and personal spirituality than other nurses; like the demographic variables of level of education, length of nursing experience, and sex, confidence and comfort in providing spiritual care were not related to spiritual care competence. The current study aimed to replicate these relationships in a sample of palliative care nurses. This sample also allowed the testing of a hypothesis that palliative care nurses will tend to subscribe to more competent understandings of spiritual care.

Data were collected from a convenience sample of Australian palliative care nurses who completed an anonymous, online survey. The survey provided qualitative data about what spiritual care means for them and quantitative data regarding nurse characteristics. The qualitative data were used to create sub-groups of nurses based on their understanding of spiritual care and the quantitative data were used to construct a profile of nurse characteristics for each sub-group. The replication analysis determined whether a statistical difference in nurse characteristics existed across sub-groups. The hypothesis testing compared levels of spiritual care understanding across the general and palliative care samples of nurses.

While the results of the palliative care sample are largely concordant with those obtained in the general sample, the current study amends “training adequacy” as a predictor of spiritual care competence to “experience (whether on-the-job or training) in caring for the dying.” The study hypothesis was supported.

The results can be used to assess and develop competence in spiritual care for palliative care nurses.

This White Paper by the European Association for Palliative Care addresses the imperative to integrate spiritual care into the support of individuals living with neuro-oncological and neurodegenerative conditions. These diseases present complex biomedical, social, psychological, and existential challenges that demand a whole-person approach to care. Various initiatives have progressed the understanding of spirituality as a dimension of well-being, yet the systemic delivery of spiritual care remains inconsistent and inequitable.

This study adopts a narrative umbrella review approach. We provide a synthesized framework highlighting current knowledge and models of care, educational needs, and future priorities for research, while advocating for the formal integration of spiritual care into all stages of illness.

Our exploration highlights the importance of early integration of dynamic and multidimensional spiritual care for people with neuro-oncological or neurodegenerative diseases. The implementation of spiritual care in this context should address the unique challenges that arise with these diseases, such as changes in spiritual needs and in the ability to communicate spiritual needs across disease progression. Spiritual care should be carried out by the whole care team, offering regular spiritual screenings and referring care to specialists when needed, and it should be offered across all stages of care. Spiritual care should be culturally safe, offering multilingual access, and multi-faith chaplaincy services.

Spiritual care is not a luxury or an optional extra; it is a fundamental aspect of palliative care. There is a need to implement spiritual care across all stages of care, taking into consideration the patient’s evolving needs. Sufficient time should be allocated to spiritual care education for social and healthcare professionals. More research is needed to develop validated screening tools and effective interventions.

Early engagement in palliative and supportive care is widely promoted as a marker of insight, acceptance, and readiness for shared decision-making. Clinicians, however, frequently observe a paradoxical longitudinal pattern in which patients who initially demonstrate high emotional, cognitive, and decisional engagement later become withdrawn or fatigued despite preserved insight. This case report illustrates such a pattern and interprets it using the concept of capacity debt.

A longitudinal case description is presented, integrating clinical observation with interpretive analysis informed by literature on patient capacity, emotional labor, cumulative complexity, and serious illness communication.

The patient demonstrated high early engagement in goals-of-care discussions, advance care planning, and emotionally demanding conversations. Over time, she developed marked conversational fatigue and withdrawal without evidence of depression, demoralization, denial, or cognitive impairment. Disengagement appeared temporally related to cumulative engagement demands rather than disease progression alone.

This case illustrates how early intensive engagement may contribute to later disengagement through cumulative depletion of patient capacity. Interpreting this pattern as capacity debt provides a non-pathologizing and ethically grounded explanation, highlighting pacing as a core clinical skill in palliative care.

Understanding trends in end-of-life care for bladder cancer patients is essential in improving palliative care planning. This study analyzes trends in preferred place of death among bladder cancer patients in the United States from year 2000 to 2020.

Data from the CDC WONDER database were used to identify 293,906 deaths caused by bladder cancer. Further data on patient place of death, age, demographics, census geographic region, and year of death were recorded. Place of death was used as a proxy for preferred place of death. A multivariable binary logistic regression analysis was performed to determine associations between preferred place of death and other variables.

At-home deaths were most common among individuals aged 75–84 years of age (42,644 deaths) and 85+ years of age (32,806 deaths). Hospice use was highest among the 75–84 age group (8,754 deaths) and 85+ age group (7,358 deaths). Nursing home deaths were highest in the 85+ age group (26,216 deaths), with significant age-related differences (p < 0.001). In terms of racial variations, White individuals accounted for 93.6% of all deaths. Black individuals were less likely to utilize hospice care (p < 0.001). Overall, race differences were significantly associated with place of death (p < 0.001). The number of home deaths rose from 4,281 in 2000 to 8,554 in 2020, and hospice deaths also rose significantly during this time period. Interestingly, younger individuals were more likely to die in hospice compared to those aged 85 years or older, though the odds decreased with age. Black individuals had significantly lower odds of hospice use than White patients (OR = 0.699, p < 0.001) and hospice use increased annually by an average of 13.4% (p < 0.001).

The results indicate that utilization of hospice care and home-based end-of-life care have risen in prominence though disparities are present across racial and regional groups. Further studies are needed to better understand potential barriers to end-of-life care among bladder cancer patients.

Hospices represent the cornerstone of modern palliative services. However, population-level data on hospice utilization and characteristics of patients dying in hospice remain limited to examine national temporal trends in hospice deaths in Italy from 2011 to 2022, with a focus on the underlying causes of death.

We performed a nationwide, population-based retrospective study using official mortality data from the Italian National Institute of Statistics. All deaths registered in Italy between 2011 and 2022 were included. Hospice deaths were identified as those occurring in licensed hospice facilities.

Hospice beds increased from 1,681 in 2011 to 3,419 in 2022, while hospice deaths more than doubled from 19,179 (3.2% of all deaths) to 43,972 (6.2%). The mean age of hospice deaths rose from 74.0 to 76.6 years. Among patients dying in hospice, neoplasms remained the leading cause of death but declined from 87.0% in 2011 to 73.8% in 2022, while cardiovascular deaths increased from 6.2% to 9.5%, neurological from 1.2% to 3.4%, and respiratory from 1.0% to 2.5%. The proportion of national neoplasm deaths occurring in hospice reached approximately 20% in 2022. Similarly, the proportion of non-neoplasm hospice deaths tripled (0.6–2.1%).

Between 2011 and 2022, hospice deaths in Italy more than doubled, reflecting substantial progress in expanding access to palliative care. The gradual increase in non-neoplasm hospice deaths suggests a shift toward greater inclusivity, although neoplasm remains predominant.

Spiritual care is a core element of palliative care, addressing religious, spiritual and existential concerns and enhancing quality of life. In Finland, systematic assessment of patients’ spiritual needs is limited due to the lack of a validated instrument. This study aimed to develop and psychometrically validate the Spiritual Needs in Palliative Care (SNPC) questionnaire for Finnish palliative care patients.

A prospective, multi-phase validation study, included item generation, expert review, pilot testing, and psychometric evaluation. Content and construct validity, as internal consistency and Cronbach’s alpha values were assessed using explorative factor analysis (EFA). For convergent and divergent, validity Pearson’s correlations were calculated for Edmonton Symptom Scale (ESAS), WHO Performance Status Scale, and the Spiritual Well-being Questionnaire (EORTC QLQ-SWB32).

The SNPC included 28 items covering existential, emotional, religious, and spiritual distress domains, with sections for importance and fulfillment of each need. A total of 116 patients (mean age 71 years; 61.2% female; 88.8% with cancer)), were recruited from 10 oncology and palliative care units across Finland. EFA supported an 8-factor structure – Communication and Preparation for Death; Meaning and Continuity; Emotional and Inner Peace; Artistic and Quiet Comfort; Religious Needs; Ritual Participation; Freedom from Guilt and Shame; Fear and Survival – explaining 71% of variance, with good reliability (Cronbach’s α = 0.63–0.93). The most important needs were safety in care, peace of mind, and participation in care decisions, while religious rituals and visits by clergy were less important. Significant gaps emerged between perceived importance and fulfilment of needs, regarding being heard, hope, peace, and the presence of loved ones. Fulfilled spiritual needs correlated well with SWB32 but not with ESAS.

The SNPC is a valid and reliable instrument for assessing the spiritual needs of Finnish palliative care patients. It could support systematic identification of unmet spiritual needs of palliative care patients.

Early integration of pediatric palliative care (PPC) offers significant benefits for children with cancer, yet referrals often occur late in the child’s cancer trajectory.

As part of a larger project looking at barriers and facilitators to early integration of PPC, this study explored the perspectives of healthcare providers (HCPs) on the pros and cons of a universal referral system where all children with cancer are referred to PPC at diagnosis.

Using the grounded theory method, semi-structured interviews were conducted with 66 oncology and PPC providers across 4 tertiary cancer centers in Canada. Interviews were coded line-by-line to explore patterns and themes across the dataset.

Three key benefits emerged that included: reducing stigma and normalizing PPC as standard care, fostering early relationship building with patients and families, and minimizing HCP subjectivity in making PPC referrals. Cons included the idea that universal referral was a poor use of resources, particularly for children with curable cancers, and that this system lacked usefulness for patients and families.

Universal referral can promote equitable, timely, and family-centered integration of PPC in pediatric oncology. However, these types of referral systems face substantial challenges, particularly around resources. There was also wide variation of opinions and acceptability of universal referral among providers. The adoption of standardized or tiered referral criteria, guided by disease risk, prognosis, or symptom burden, may represent a practical middle ground. Future work should evaluate the impact of such criteria-based referral models on patient and family outcomes, provider experiences, and healthcare resource use.

The effective integration of palliative care along the hospital–home trajectory remains a challenge, with digital technologies representing a promising strategy to improve continuity and coordination of care. This study aimed to validate, through expert consensus, the objectives, functionalities, clinical content, organizational requirements, and barriers and facilitators of a technological resource to support the integration of palliative care from hospital to home.

A methodological consensus study using a modified Delphi technique was conducted over two rounds. A multidisciplinary panel of experts with experience in palliative care, digital health, and healthcare organization participated. In the first round, experts evaluated an initial set of items derived from the literature and clinical practice. Items were analyzed for consensus and, based on qualitative comments, linguistically refined. In the second round, experts reassessed the items to confirm consensus and evaluate the stability of responses. A 4-point Likert scale was used. Consensus was defined as ≥75% of responses indicating “Agree” or “Strongly agree,” with calculation of the Item Content Validity Index (I-CVI) and the coefficient of variation.

Thirty-three experts participated in both rounds, corresponding to a 100% retention rate. All items reached consensus in the first round and maintained consensus and high stability in the second round. Agreement levels were high across all domains, with I-CVI values ≥0.78 and coefficients of variation below 0.25, confirming the content validity of the final set of items. No items were excluded throughout the Delphi process.

This study validated a comprehensive and structured set of essential components for the development of a technological resource to support the integration of palliative care from hospital to home. The high levels of consensus and stability achieved support the clinical and organizational relevance of the resource, providing a solid foundation for its development, implementation, and future evaluation.

Palliative psychiatry is an approach that aims to prevent and/or alleviate suffering and improve the quality of life of patients and their families through timely assessment and treatment when faced with physical, psychological, social, and spiritual problems associated with serious life-threatening mental illness. However, the need for psychiatric palliative care for individuals with serious mental illness has remained in the background and only became possible in the early 21st century. Therefore, it is essential that nurses, one of the most important actors of patient-centered care, assume the responsibility of providing palliative psychiatric care as a requirement of their patient advocacy role. The aim of this study was to determine the perception of palliative psychiatric care by psychiatric nurses in a country where palliative psychiatry has not yet emerged.

A study in qualitative descriptive design with semi-structured interviews. Fifteen psychiatric nurses participated in individual interviews. The data were analyzed using thematic analysis.

Four themes (Perception of palliative psychiatric care, Palliative psychiatric care practices, Barriers to palliative psychiatric care, and Recommendations for providing palliative psychiatric care) and 14 sub-themes were identified.

Psychiatric nurses are not familiar with the concept of palliative psychiatric care and associate it with holistic and individualized care. Nurses stated that palliative psychiatric care targets serious psychiatric disorders, treatment-resistant conditions, comorbidities and end-of-life care. In order to overcome barriers to palliative psychiatric care, suggestions were made for reorganizing the health system, establishing palliative care centers, training professionals in this field, and efforts to combat stigma.

In the Netherlands, around 750 children (0–21 year) die annually from potentially palliative conditions. The majority of these children reside at home, receiving care from hospital services and primary care. This study aims to examine general practice utilization for pediatric palliative care patients in the last 2 years of life.

A retrospective cohort study was performed using the routine healthcare database of the Julius General Practitioners’ Network. The main outcome for general practitioner (GP) utilization was the number of GP consultations for children in the last 3 months of life. Participants were included who were children (0–21 years), and deceased in the period 01-01-2013 to 31-12-2022 from an underlying chronic condition. Data were analyzed using descriptive statistics and tested for differences in provided care between children who died in hospital and who died at home.

Forty-eight children from 32 GP practices met inclusion criteria. Median age was 10.0 years (interquartile range [IQR] 1.5–17.1). Common diagnoses were oncological (29%), congenital (29%), and metabolic conditions (23%). Ninety-six percent of children had contact with their GP in the last 3 months (median 7 consultations, IQR 3.0–10.0), i.e. 26 children who died in hospital had median 3.5 GP consultations compared to 20 children who died at home median 9.5 GP consultations (p < 0.001). Thirty-five percent of children were documented as being palliative, with 54% having some form of advance care planning discussions documented.

These results demonstrate that GPs are highly involved in providing pediatric palliative care. The palliative nature of these children and advance care planning discussions are not routinely documented and/or performed by GPs. Further insights into guidance that supports GPs, in collaboration with other healthcare professionals, in providing palliative care for children at home and their families are needed.

Palliative and end-of-life (EOL) care is gaining increasing importance in Saudi Arabia due to the rising burden of chronic and life-limiting illnesses. Nurses play a central role in delivering comprehensive, culturally appropriate palliative care; however, their practices are influenced by educational preparation, institutional support, and sociocultural and religious contexts. To date, evidence on palliative nursing care in Saudi Arabia remains fragmented and insufficiently synthesized.

This systematic review aimed to synthesize existing evidence on palliative and EOL nursing care in Saudi Arabia, with a focus on nursing practices, challenges, cultural and spiritual influences, and patient and family outcomes.

A systematic literature search was conducted in January 2025 using PubMed, Scopus, CINAHL, Web of Science, Google Scholar, and Saudi grey literature sources. Empirical qualitative, quantitative, and mixed-methods studies addressing palliative or EOL nursing care in Saudi Arabia were included. Study selection followed PRISMA guidelines, and methodological quality was appraised using appropriate critical appraisal tools. A narrative thematic synthesis was undertaken due to heterogeneity among studies.

Fourteen studies met the inclusion criteria. Findings indicated that nurses are actively involved in symptom management, therapeutic communication, psychosocial support, spiritual care, and family-centered care. However, substantial barriers were identified, including gaps in knowledge and training, limited formal palliative education, emotional burden, ethical challenges related to nondisclosure, and inconsistent institutional policies. Cultural and religious norms strongly influenced communication practices and decision-making processes. Studies also showed that structured palliative care services, particularly home-based and multidisciplinary programs, were associated with improved patient comfort, dignity, and family satisfaction, although access to such services varied across regions.

Palliative and EOL nursing care in Saudi Arabia demonstrates commitment and potential but is constrained by educational, emotional, cultural, and systemic challenges. Strengthening nursing education, enhancing culturally sensitive communication and spiritual care training, expanding home-based palliative services, and providing institutional support for nurses’ emotional well-being are essential to improving the quality and equity of palliative care nationwide.