The concept of total suffering is widely recognized in palliative care (PC), encompassing a range of interconnected and complex factors that collectively shape the evolving and individualized experience of a patient’s illness journey. Studies on will to live (WtL) in terminally ill patients have demonstrated its variability over time and various factors that influence these changes.

To objectively investigate the concept of total suffering and WtL; including their fluctuation over time and associations with sociodemographic, clinical, physical, and psychological symptoms in a sample of individuals with life-limiting conditions receiving PC. This multicenter Iberian study involved 3 centers in Portugal and 1 in Spain. A total of 107 individuals with life-limiting conditions consented to participate. To capture the dynamic and multifaceted components of total suffering, we had each participant completed the Edmonton Symptom Assessment Scale (ESAS) along an additional WtL visual analogue once daily over a 30-day period.

WtL demonstrated various patterns over time. While some patterns reflected relative stability, other demonstrated substantive fluctuation during the course of illness. Significant correlations were observed between WtL and all other ESAS items. Moderate positive correlations were found between WtL and total ESAS score and its physical and psychological sub-scores. Spearman’s correlation coefficients between all physical and psychosocial items on the ESAS were statistically significant across all 45 correlations performed, with only 5 showing moderate strength; the remaining correlations were weaker.

Evidence-based understanding of WtL is critical to improving care for patients who experience suffering toward end-of-life and their families. Further research is needed to inform and refine interventions targeting total suffering.

On October 3–4, 2023 and September 30–October 1, 2024, the Memorial Sloan Kettering Cancer Center Department of Psychiatry and Behavioral Sciences and Supportive Care Service hosted the 4th and 5th Annual U.S. Celebration of World Hospice and Palliative Care Day (WHPCD) conferences, respectively. This article describes both events and lessons learned in anticipation of the 6th annual conference to be held October 6–7, 2025.

The 4th and 5th annual events, conference planning team reflection, and attendee evaluation responses are summarized.

Since 2020, the conference has attracted attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. Both the 2023 and 2024 events consisted of 13 unique interactive sessions addressing diverse hospice and palliative care topics delivered by interprofessional experts in palliative care (43 faculty in 2023 and 54 in 2024). Multidisciplinary registrants more than doubled from 764 in 43 countries (2023) to 1678 in 87 countries (2024). Complimentary registration for colleagues in low- and middle-income countries (LMIC), students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event.

The U.S. WHPCD Conference provides a virtual platform to disseminate high-quality science, honor both clinician and patient and caregiver experiences, and celebrate hospice and palliative care delivery during substantial local and global change across practice and policy domains. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary and interprofessional agenda that will draw increased participation worldwide during future annual events.

To develop an effective, targeted educational intervention that can serve as a teaching tool to educate African American (AA) populations, especially the elderly, on end-of-life (EOL) options prior to critical care.

A survey was used to assess the level of preparation and determine deficits in knowledge regarding EOL choices in the AA community of Saginaw, Michigan, before and after educational intervention. We used a paired-sample t-test to assess changes in understanding about EOL planning options, McNemar’s to test changes in intention to use hospice and palliative care, and Spearman correlations to identify demographics influencing change of outcomes. Outcome scores associated with multiple demographic variables were regressed on these demographics.

Our data indicated that the intervention was an effective teaching tool in educating the AA population on EOL choices. Significant changes were observed in understanding of EOL options, concerns about palliative and hospice care, and intention to use palliative and hospice care. Age and education were also associated with selected outcome changes.

AA patients are more likely than other ethnic groups to choose life-sustaining measures at the end of their lives, leading to patients not receiving care to help them die peacefully. This decision is partly based on lack of knowledge of the available EOL care options. This study provides evidence needed for physicians to increase their educational efforts with the AA population regarding EOL options. An educational tool like the one developed in this study may be helpful and lessen the time of education so that physicians can answer questions at the end of the session and empower individuals and communities to take an active role in creating a culture of wellness at the EOL and decreasing morbidity.

Palliative care is a critical component of healthcare, yet its integration into Nigeria’s health system remains limited. Despite the growing burden of life-limiting illnesses, palliative care is underdeveloped, primarily restricted to tertiary institutions. This review examines the evolution of palliative care in Nigeria, key milestones, persistent challenges, and future directions for strengthening its implementation.

This narrative review synthesized historical records, policy documents, and literature on palliative care in Nigeria. It examined leadership roles, institutional efforts, and government policies influencing Palliative care growth, while highlighting implementation gaps and opportunities.

Palliative care in Nigeria has evolved from early grassroots efforts to structured institutional services. Key milestones include the establishment of the Hospice and Palliative Care Association of Nigeria (HPCAN), and policy advancements such as the National Policy and Strategic Plan for Hospice and Palliative Care. Despite these developments, challenges persist, including inadequate funding, workforce shortages, limited opioid access, policy implementation gaps, and socio-cultural barriers. Leadership engagement, targeted policy advocacy, and comprehensive capacity-building are essential to overcoming these barriers.

Sustained efforts are needed to fully integrate palliative care into Nigeria’s healthcare system. Strategic interventions, including enhanced policy implementation, funding mechanisms, workforce development, and community engagement, are critical for ensuring equitable access to PC services. Strengthening collaborations between the government, healthcare institutions, and international partners will accelerate progress, ultimately improving the quality of life for patients with life-limiting illnesses.

To examine the challenges and practical realities of providing end-of-life care in welfare evacuation centers following the Noto Peninsula earthquake in Japan, and to identify lessons for improving disaster preparedness in similar settings.

Case 1: A man in his late 90s was transferred to a welfare evacuation center after contracting COVID-19 in a general shelter. He arrived with fever and marked physical decline. Acetaminophen was administered to relieve his fever and provide comfort. His condition gradually worsened, and eight days after arriving at the evacuation shelter, he died peacefully while being closely observed by medical staff. Case 2: A man in his 60s with a history of smoking and alcohol use was found bedridden and incontinent at home and was subsequently moved to a welfare evacuation center. Two days after evacuation, he complained of leg and back pain, which was suspected to be due to arterial occlusion. He was monitored and provided with supportive care at the center, however, pain control remained inadequate. Four days after evacuation, he was found in respiratory arrest and was confirmed dead.

These cases underscore the need for establishing unified guidelines and external support frameworks for end-of-life care in disaster settings. In a disaster-prone country like Japan, scenario-based training and the integration of trained volunteers are essential to ensuring dignified care for vulnerable evacuees.

This study aims to explore the everyday experiences of people living with Lewy body dementia and their families, to deepen understanding of their care needs. Lewy body dementia is a neurodegenerative condition associated with shorter life-expectancy and poorer quality of life than other forms of dementia. Cognitive fluctuations, visual hallucinations, falls, and motor features of Parkinsonism gives rise to complex and debilitating symptoms. Other prominent features include behavioral and emotional problems, rapid eye movement sleep disorder, and autonomic dysfunction. Improving palliative care for people with dementia continues to be an international priority; however, little is known as to how a palliative care approach could support people living with Lewy body dementia and their families.

Drawing on narrative theory of self and personhood, a qualitative, longitudinal narrative approach provided unique insights into 5 couples’ experiences of living with Lewy body dementia. Analysis was conducted using Murray’s levels of narrative analysis in health psychology to explore stories at the personal, interpersonal, positional, and societal level.

Participants with Lewy body dementia described losses associated with communication, continence, and energy leading to a progressive loss of independence. For their family caregivers a loss of companionship was particularly salient. These losses, compounded by a perceived lack of clinical support, resulted in suffering both for the person with Lewy body dementia, and for those close to them.

There has been a societal and political shift to move beyond loss in dementia, to a focus on abilities and living well. However, acknowledging loss, while supporting symptom management is an important aspect of Lewy body dementia care. Providing person-centered, palliative supportive care throughout the disease trajectory could reduce suffering and enhance well-being.

Objective. Witnessing existential suffering in patients is associated with increased risks of compassion fatigue and burnout in palliative care physicians. Finding meaning is a protective factor for burnout and is associated with increased job satisfaction and a sense of purpose.

While the significance of finding meaning through the doctor-patient relationship is widely recognized, less is known about the subjective experience of palliative care physicians, how they ascribe meaning, and how meaning sustains them. The aim of this study was to describe and interpret how palliative care physicians experience meaning when caring for patients.

Method. Hermeneutic-phenomenology, inspired by the philosophy of Heidegger and Gadamer, informed the methodological approach. Ten palliative care physicians, caring for adult patients, completed semi-structured interviews. Van Manen’s “lifeworld existentials” supported our reflexive hermeneutic analysis to interpret participants’ moments of meaning-making.

Results. Our analysis identified two interpretive concepts for meaning-making: moments of connection and moments of transformation. Meaningful connection occurred when physicians and patients together acknowledged existential suffering in death and dying and experienced it on a personal, human level. Often, experiences were fleeting but had a lasting impact. Experiences of connection had a transformational effect on physicians and were associated with a sense of reward and purpose in palliative care work.

Significance of results. Findings are discussed in relation to philosophical literature on the experience of time, contrasting man-made time with the existential experience of time. Moments of connection and transformation experienced by palliative care physicians fueled their commitment to their profession. At a time when burn-out is rife, identifying, describing, and understanding moments of meaning may offer protective benefits for physicians working in palliative care.

Moral distress affects a significant proportion of clinicians who have received requests and participated in euthanasia or physician-assisted suicide (E/PAS) globally. It has been reported that personal and professional support needs are often unaddressed, with only a minority of those reporting adverse impacts seeking support.

This study aimed to review studies from 2017 to 2023 for the perceived risks, harms, and benefits to doctors of administering E/PAS and the ethical implications for the profession of medicine resulting from this practice.

The search explored original research papers published in peer-reviewed English language literature between June 2017 and December 2023 to extend prior reviews. This included both studies reporting quantitative and qualitative data, with a specific focus on the impact on, or response from, physicians to their participation in E/PAS. The quantitative review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The qualitative review used the Critical Appraisal Skills Programme to assess whether studies were valid, reliable, and trustworthy.

Thirty studies (quantitative n = 5, qualitative n = 22, mixed methods n = 3) were identified and fulfilled acceptable research assessment criteria. The following 5 themes arose from the synthesis of qualitative studies: (1) experience of the request prior to administration; (2) the doctor’s role and agency in the death of a patient; (3) moral distress post-administration; (4) workload and burnout; and (5) professional guidance and support. Both quantitative and qualitative studies showed a significant proportion of clinicians (45.8–80%) have been adversely affected by their involvement in E/PAS, with only a minority of those reporting adverse impacts seeking support.

Participation in E/PAS can reward some and cause moral distress in others. For many clinicians, this can include significant adverse personal and professional consequences, thereby impacting the medical profession as a whole.

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.

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.

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.

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.

Although dementia is a terminal condition, palliation can be a challenge for clinical services. As dementia progresses, people frequently develop behavioural and psychological symptoms, sometimes so severe they require care in specialist dementia mental health wards. Although these are often a marker of late disease, there has been little research on the mortality of people admitted to these wards.

We sought to describe the mortality of this group, both on-ward and after discharge, and to investigate clinical features predicting 1-year mortality.

First, we conducted a retrospective analysis of 576 people with dementia admitted to the Cambridgeshire and Peterborough National Health Service (NHS) Foundation Trust dementia wards over an 8-year period. We attempted to identify predictors of mortality and build predictive machine learning models. To investigate deaths occurring during admission, we conducted a second analysis as a retrospective service evaluation involving mental health wards for people with dementia at four NHS trusts, including 1976 admissions over 7 years.

Survival following admission showed high variability, with a median of 1201 days (3.3 years). We were not able to accurately predict those at high risk of death from clinical data. We found that on-ward mortality remains rare but had increased from 3 deaths per year in 2013 to 13 in 2019.

We suggest that arrangements to ensure effective palliation are available on all such wards. It is not clear where discussions around end-of-life care are best placed in the dementia pathway, but we suggest it should be considered at admission.