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.

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.

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.

Despite the urgent need for support interventions for families facing parental life-threatening illness, research is limited – particularly in progressive neurological diseases. This scoping review aimed to systematically map existing interventions to inform the development of tailored support in the neurological context.

A scoping review was conducted, including articles published between 2013 and 2025, identified through searches in PubMed, CINAHL, PsycINFO, and Web of Science, along with manual screening of reference lists. Extracted data were systematically charted and descriptively summarized.

Of 5172 articles, 15 were included, describing 6 unique interventions aimed at supporting children (0–25 years) and/or parents in families where a parent had a life-threatening illness. While cancer was the predominant diagnosis among ill parents, progressive neurological diseases, such as amyotrophic lateral sclerosis (ALS) and Huntington’s disease, were represented to a limited extent. The interventions targeted children (n = 4), parents in their parenting role (n = 4), or the entire family (n = 7) and were primarily based on psychosocial, psychoeducational, or peer support. Overall, the interventions were positively received by both children and parents and perceived as helpful in navigating their challenging life situations in various ways.

This review confirms a particular lack of knowledge and tailored support for families affected by progressive neurological diseases. While support interventions for other life-threatening illnesses are also limited, those that exist may offer valuable insights to inform the development of support within neurological care contexts. The findings underscore the need for early, proactive, and accessible approaches that address both individual and family needs across the disease trajectory, aligning with core principles of high-quality palliative care.

Medical assistance in dying (MAID) is a rapidly growing and evolving field. The provision of MAID in Canada has substantially outpaced the number of new providers. While challenges of provision have been well described, little is known about the sustainability of providing this care long term. To fill this gap, we aimed to determine if providing MAID is sustainable while identifying factors that impact provider wellbeing.

We developed a 20-item Likert scale-based questionnaire that focused on themes of sustainability. We performed descriptive analyses for each question and used Fisher’s exact and Kruskal–Wallis tests to assess differences across provider characteristics. The questionnaire was distributed via a network of MAID navigators and providers in Ontario, Canada.

In total, 38 responses were received from well-experienced clinicians in a variety of specialties. A total of 74% of respondents felt their MAID work was sustainable for the long term. Practitioners strongly enjoyed the work and reported little emotional toll and burnout. While some providers felt the compensation and training were sufficient, others felt it could be improved. Nearly all respondents had someone ethically and clinically knowledgeable about MAID they could go to for support.

Our questionnaire has shown clinicians who are well-experienced and connected to supports report very positive experiences providing MAID and view the work as sustainable. While existing literature and media often emphasize the challenges of MAID, the perspectives of providers highlight a positive experience.

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.

Providing care for children with life-limiting conditions(LLCs) is an emotionally challenging experience that often exposes caregivers, particularly mothers, to considerable risk of psychological distress. The purpose of this study was to examine the moderating effect of emotional dysregulation on the relationship between severity of anxiety and depressive symptoms and high caregiving intensity, controlling for sociodemographic characteristics among mothers caring for children diagnosed with life-limiting conditions.

Using a cross-sectional descriptive design, a convenience sample of 192 mothers caring for children with life-limiting conditions was recruited and filled out an online self-administered questionnaire. Data were collected using online self-administered questionnaires regarding the sociodemographic characteristics of mothers and their children, emotional regulation difficulties (DERS), and the levels of anxiety and depressive symptoms among the mothers (DASS-21).

The analysis showed that 21.4% and 7.8% of mothers had moderate and severe depressive symptoms, and 19.3% and 15.6% had moderate and severe anxiety symptoms, respectively. The analysis also showed that emotional dysregulation is associated with high levels of anxiety (β = 0.74, P < 0.001) and depression (β = 0.74, P < 0.001); however, there was no significant moderating effect.

Anxiety and depression are significant psychological distress among mothers caring for children with life-limiting conditions and can be aggravated by emotional dysregulation and caregiving burden. There is a need to integrate interdisciplinary teamwork and family-centered care to provide holistic care and offer early screening, detection, and emotional regulation-focused management programs for psychological distress at healthcare services that care for children with LLCs.

To evaluate the feasibility and preliminary efficacy of a clinical program designed to teach informal caregivers of older Veterans with pain and mild-to-moderate dementia or mild cognitive impairment (MCI), pain management, pain coping and pain communication skills.

Twenty caregivers of older Veterans with pain and dementia or MCI and the Veterans themselves participated in a 5-session program taught by trained Veterans Affairs (VA) clinicians. All sessions were conducted remotely using video-technology, with caregivers and Veterans. Two sessions were conducted with individual Veteran-caregiver dyads, and three sessions were conducted with caregiver groups. Caregivers and Veterans completed baseline and post-intervention measures. Qualitative interviews of 10 caregivers who completed the program were also conducted and focused on identifying themes related to caregiving for their loved ones with pain and dementia and related to participating in the program.

The program was well received and almost all caregivers identified videoconferencing as the preferred venue for participating in such a program. They most valued learning about dementia and participating with other caregivers. Pre-post analyses revealed significant improvements in perceived caregiving competence and self-efficacy for managing pain. Challenges encountered included scheduling related to caregivers’ multiple competing responsibilities and lack of familiarity with tele-conferencing technology.

Patients with pain and mild to moderate dementia or MCI have been relatively ignored in current literature. Our preliminary findings suggest that a program delivered by trained healthcare professionals to caregivers and Veterans using tele-conferencing could benefit caregivers.

Providing psychosocial support to pediatric patients and their families at the end of life represents one of the most challenging yet vital aspects of healthcare practice. Despite the presence of grief and loss training in many pediatric healthcare professionals’ educational backgrounds, opportunities for practical training experience in delivering end-of-life care remain limited. This study explored the use of simulation-based training to enhance the self-reported knowledge, skills, and comfort levels of child life specialists in providing psychosocial care during end-of-life situations.

Forty-three child life specialists participated in the simulation-based training, which was combined with traditional didactic instruction, and the associated research study. Pre- and post-training surveys were used to assess impact of the training on child life specialists’ self-reported knowledge of end-of-life care and comfort in providing this care.

A statistically significant increase was seen in all measured aspects of self-reported knowledge and comfort in providing end-of-life care following the training.

Simulation combined with traditional instruction methods provides an effective way to train healthcare professionals in providing high-stakes psychosocial care while protecting patients and families from the added strain of trainees and excess staff presence during sensitive times.

In this study, we aimed to elucidate the underlying structural mechanisms that generate a desire for hastened death (DHD) in patients with terminal cancer from a whole-person perspective based on insights from palliative-care professionals (PCPs).

We conducted semi-structured interviews with 36 PCPs experienced in caring for patients with terminal cancer and DHD, followed by a thematic analysis based on Boyatzis’ hybrid approach.

We identified 6 themes that characterize the underlying structural mechanisms of DHD. DHD arises from feelings such as loss of self-control, inability to escape adverse circumstances, confronting death and letting go of life, pain of loneliness, being unable to accept living life as it is, and feeling unable to live with the thought of being an inconvenience to others, in addition to physical and psychological pain. In contrast, certain patients who had built good relationships with family members and/or PCPs found new meaning and value in their current lives, expressing a desire to live in the moment and choosing to continue living until the end.

This study provides the first comprehensive analysis of the underlying structural mechanisms of DHD in patients with terminal cancer from a whole-person perspective. DHD with spiritual pain is linked to the loss of future orientation, autonomy, and meaningful relationships through interconnected structural pathways, leading to feelings of worthlessness and existential meaninglessness. The identified framework demonstrates that these underlying mechanisms operate through an interplay of existential, relational, and autonomy-related factors extending beyond physical and psychological symptoms, reflecting an interconnected human experience across physical, psychological, social, and spiritual dimensions. This study established an evidence-based framework enabling healthcare professionals to implement whole-person approaches to recognize the multidimensional nature of DHD and address existential distress across all dimensions of human experience in end-of-life care.

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.