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pattern in which patients who initially demonstrate high emotional, cognitive, and decisional engagement later become withdrawn or fatigued despite preserved insight.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.

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.

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.

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.

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.

This study aimed to investigate the mediating role of perceived stigma in the relationship between cancer-related symptoms and social relationships among cancer patients.

This cross-sectional descriptive study was conducted with 250 cancer patients undergoing chemotherapy in an oncology hospital in Ankara, Türkiye. Data were collected using a sociodemographic form, the Nightingale Symptom Assessment Scale, the Cataldo Lung Cancer Stigma Scale, and the Social Relationship Scale. Descriptive analyses, group comparisons, Pearson correlation, and mediation analysis were performed with SPSS v27.0 and DataTab web-based analysis platform.

The findings revealed significant positive correlations between cancer-related symptoms and perceived stigma (r = 0.51, p < .001), and negative correlations between both cancer-related symptoms and social relationships (r = −0.24, p < .001) and stigma and social relationships (r = −0.54, p < .001). The mediation analysis suggested that perceived stigma may play a mediating role in the relationship between cancer–related symptoms and social relationships, as indicated by a non–significant direct effect and a significant indirect effect. Cancer-related symptoms significantly predicted perceived stigma (B = 0.58, p < .001), and stigma was a significant predictor of decreased social relationship quality (B = −0.72, p < .001). The indirect effect of cancer-related symptoms on social relationships via stigma was statistically significant (B = −0.42, p < .001), while the direct effect was not (B = −0.27, p = .182).

Perceived stigma is a critical psychosocial factor that may mediate the adverse impact of cancer-related symptoms on social relationships in this study. Therefore, addressing stigma may play a crucial role in maintaining social functioning in cancer care.

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.