Palliative care enhances life, but rural Australia faces significant inequities, and psychosocial distress, an important yet often overlooked aspect, is under-recognized in these settings. This study examines how psychosocial distress evolves in rural palliative patients using the Death and Dying Distress Scale (DADDS).

A longitudinal study was conducted with palliative care patients in rural hospitals on Australia’s east coast. Distress levels were measured using DADDS at multiple timepoints. Mixed-effects models assessed distress trajectories, while survival analyses (Weibull model) examined whether average distress changes predicted survival duration. For comparability, DADDS scores in mixed-effects models were standardized (0–100%), whereas survival analyses used raw total score changes.

Adjusted mean total DADDS was 37.14 ± 22.67, with highest distress in fear of suffering and pain (49.95 ± 26.56) and lowest in fear of sudden death (30.26 ± 30.24). Distress followed a U-shaped trajectory: peaking early (52.68), declining mid (29.85) and late stages (28.26), then rising near death (53.05) (EMMs). Statistically significant changes included declines from early to mid-stage (β = −22.84, p = 0.007) and increases from late to near-death (β = 24.79, p = 0.003). Distress increased most from late to near-death in fear of suffering and death (β = 27.38, p = 0.006) and declined most from early to mid-stage in fear of dying (β = 28.01, p = 0.007). Higher distress correlated with shorter survival; each one-point increase in distress linked to a 6.97% survival reduction (time ratio = 0.930, β = −0.070, p < 0.001).

Psychosocial distress peaks in early palliative care and near death and is associated with reduced survival. Support should prioritize fears of suffering and pain during these stages, address fear of the dying process earlier, and remain attentive to persistent concerns such as loss of time and opportunity.

The growing integration of artificial intelligence (AI) and patient-reported digital tools (ePROMs and ePREMs) in palliative care offers new opportunities for personalised care yet also raises profound ethical and philosophical concerns. This paper examines how emerging technologies intersect with the concept of human dignity at the end of life, proposing an expanded notion of post-biographical dignity.

Ethical-philosophical analysis based on critical readings of AI ethics, narrative medicine, and the philosophy of technology.

While digital tools such as ePROMs and ePREMs offer potential for richer, more person-centred care, they also risk reducing patients to data points and predictive profiles. Digital processes increasingly shape the narrative, vulnerability, and memory of the dying person. Post-biographical dignity calls for a reconceptualization of care that includes memory, relational continuity, and ethical engagement with digital remains.

End-of-life care in the age of AI must move beyond autonomy-focused ethics to encompass the narrative, relational, and posthumous dimensions of dignity. A critical, philosophically informed ethics is essential to prevent depersonalisation in digitally mediated care.

Psychospiritual distress affects many patients with cancer, contributing to diminished quality of life, decreased survival and a desire for hastened death. The current standard of care, which primarily consists of antidepressants and psychotherapy, has demonstrated only modest benefits. Psilocybin-assisted therapy (PAT) has shown evidence of rapid, durable, and significant effects on measures of both depression and anxiety in this patient population.

A 51-year-old man diagnosed with metastatic lung cancer, referred to palliative care (PC) with a prognosis of less than 6 months, experienced depression and anxiety in the context of demoralization and existential distress. His suffering persisted despite psychotherapy and treatment with 100 mg of sertraline. He was granted access to PAT through Health Canada’s Special Access Program (SAP) and was treated with 25 mg of oral psilocybin in a homecare setting, with preparative and integrative therapy prior to and following the PAT session.

PAT was well tolerated, with significant decreases in both anxiety and depression. The patient subjectively reported a sustained reduction in suffering and improved well-being at 2 months post-intervention.

PAT, when utilized within an appropriate therapeutic framework, may be safely delivered at home and may serve as an effective and long-lasting treatment for symptoms of anxiety and depression associated with psychospiritual symptoms of existential distress in PC. Future studies should examine differences in outcomes between clinical and homecare settings for PAT, and could include creating practice guidelines and protocols for home-based PAT.

The LGBTQIA+ community faces pervasive discrimination, including in healthcare settings. This discrimination can be particularly detrimental during hospice and palliative care, where patients are especially vulnerable and may have distinct needs related to their sexual orientation or gender identity.

This study aimed to identify the barriers and enablers to accessing equitable and inclusive palliative care for LGBTQIA+ individuals.

A self-administered online survey was conducted in November 2023 among LGBTQIA+ adults residing in Portugal. Thematic analysis was applied to identify barriers and enablers, mapped using an adapted socioecological framework.

Fifty-five respondents participated, primarily cisgender women (49.1%) identifying as homosexual (50.9%), with most aged 18–34 (76.4%). Barriers included caregiver homophobia, lack of LGBTQIA+-specific knowledge among professionals, fear among patients, misaligned care priorities, exclusion of partners from decision-making, and limited access to care. Enablers involved professional LGBTQIA+-specific training, psychological support, integration of partners or chosen families in care, workforce diversity, dissemination of palliative care information, community engagement, and inclusive societal values.

Inclusive and responsive palliative care is essential to addressing the unique needs of LGBTQIA+ individuals. The findings highlight the need for systemic reforms to advance equity in care. The study calls for mandatory LGBTQIA+-focused training for healthcare providers, recognition of chosen families in care decisions, and public health campaigns that promote inclusivity. Collaboration with LGBTQIA+ organizations to improve outreach and access is vital, along with legislative measures to ensure equitable and inclusive care.

While many siblings of children with cancer demonstrate resilient outcomes, they also face their own unique experiences that increase their risk for acute and long-term psychosocial difficulties. It is accepted that children undergoing cancer treatment experience suffering, the alleviation of which is a main goal of palliative care, yet research has not yet explored whether siblings experience their own suffering. This work aimed to determine whether parents perceive that their child(ren) without cancer suffered throughout the illness course and how that suffering would be described.

Using literature and expert input, a survey was developed to elicit caregivers’ perceptions of suffering in their children with and without cancer and was disseminated through the American Childhood Cancer Organization. Responses regarding sibling suffering were analyzed, considering differences in accounts between bereaved caregivers and those whose child with cancer remains living.

A total of 202 parents (81 bereaved, 121 whose child with cancer remains alive) responded. Themes of sibling suffering include disconnection and/or displacement, lack of stability and certainty, emotional consequences, bearing witness, and lasting impact. One distinct theme, suffering as continued loss, emerged from bereaved parents’ responses.

Both parental groups described sibling suffering similarly despite different outcomes for their child with cancer. The idea of sibling suffering by bearing witness to what the child with cancer experienced is unique and worthy of further understanding. This work highlights the need for sibling and parent psychosocial assessment and palliative intervention throughout cancer treatment. Gaining longitudinal input from siblings and parents regarding the experience of suffering is a critical next step to develop tailored interventions.

The diagnosis of an advanced life-threatening illness brings with it existential challenges that activate the attachment system and different attachment styles influence coping with advanced illness.

The objective of this work were (a) to analyze the influence of attachment styles of patients with advanced disease and their relatives on emotional distress and other psychological and existential aspects, and (b) to identify the most used assessment instruments to measure it, highlighting those with better psychometric properties in palliative care contexts.

Articles on attachment published from October 2005 to February 2025 using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guide (PRISMA) were identified by searching PubMed, PsycINFO, Google Scholar, SCOPUS, Dialnet, and the Web of Science databases.

Of 1847 studies identified, 24 were included (21 quantitative and 53 qualitative). Quality assessment revealed low risk of bias and high methodological quality. The main results indicated that a secure attachment style was associated with better coping, adaptation and adjustment strategies to the experience of illness, causing a buffering effect on suffering at the end of life. In contrast, patients with insecure attachment styles presented higher levels of emotional distress, demoralization, existential loneliness, death anxiety and showed a poorer psychological adaptation to cancer. Almost two-thirds of the studies (65.1%) used some version of Experiences in Close Relationships (ECR) scale.

The attachment theory appears to offer a valuable conceptual framework for understanding how individuals may respond to the emotional and relational demands associated with advanced illness and end-of-life care. Its contributions have been increasingly considered in literature addressing psychosocial adjustment and coping in palliative contexts

For the assessment of attachment styles in a palliative context, the most used instrument is the original ECR-M16 scale or its iderived versions.

Duloxetine is the only agent for chemotherapy-induced peripheral neuropathy (CIPN) recommended by the American Society of Clinical Oncology. As a moderate inhibitor of cytochrome P450 isoenzyme 2D6, duloxetine is theorized to decrease the efficacy of tamoxifen, which may be used to treat estrogen receptor–positive breast cancer. A case prompted our team to review the literature to elucidate the risks and benefits of duloxetine use in patients with this cancer.

We present the case of a patient with estrogen receptor–positive breast cancer who was doing well on duloxetine for CIPN. Due to concern for the possible future need for tamoxifen, she was switched to multiple other agents, including venlafaxine, without success.

Ultimately, the patient was switched back to duloxetine due to persistent CIPN symptoms. The theoretical risk of tamoxifen interaction with duloxetine has not been demonstrated to be clinically significant in the literature.

While emerging evidence suggests venlafaxine may prove an effective alternative, duloxetine remains the agent with the strongest evidence of benefit in patients with CIPN and must remain an option in this patient population.

Dignity Therapy (DT) helps reframe and give meaning to the illness process of the terminally ill individual. This study aims to evaluate the effect of DT on meaning in life scores and, additionally, to assess how much DT can alleviate physical and emotional symptoms in cancer patients undergoing palliative care.

This was a before-and-after clinical trial, involving the recruitment of 30 patients hospitalized in a palliative care unit, who filled out the Edmonton Symptom Assessment Scale (ESAS) and the Meaning in Life Scale (MiLS) both before and after the implementation of DT.

Of the 40 patients invited to participate in the study, DT was completed by 30 (75%) participants: 22 (73%) women and 8 (27%) men. Eighteen (60%) patients died during hospitalization, while 12 (40%) were discharged. When analyzing the factors correlated with the MiLS scores, a positive association was identified between the emotional and physical domains of the ESAS, and a negative association with the total ESAS score, spiritual ESAS score, male gender, higher educational level, and a cancer diagnosis duration (>6 years).

DT contributed to clinically relevant improvement, albeit not statistically significant, observed in emotional and spiritual well-being, as well as in the meaning of life. This underscores the importance of considering DT for palliative care patients nearing death.

The purpose of this study is to examine the existing literature on end-of-life dream experiences and bucket list fulfillments among terminally ill individuals receiving hospice and/or palliative care.

A scoping review registered on Open Science Framework was conducted in accordance with the guidelines for Scoping reviews (PRISMA-ScR). An electronic search of literature was generated from EBSCO databases published until June 2024. Studies were included if they described and evaluated the effects of bucket lists and/or end-of-life wish fulfillment.

This review identified 2,234 studies, and 11 of these were included in the review. Four major themes were established using thematic content analysis: (1) impact on holistic well-being, (2) role of family in wish fulfillment, (3) cultivation of gratitude, and (4) collaborative leadership in wish fulfillment. In wish fulfillment, the results significantly pointed to the need for more intricate evaluation among patients and interventions that cover beyond the physical aspect.

Palliative and hospice care settings should work toward securing sustainable funding for structured wish-fulfillment programs to address existing accessibility gaps and further enhance the holistic nature of care in these settings. Wish-fulfillment interventions represent a powerful tool in enhancing dignity and holistic experiences for terminally ill patients. Future research efforts could strengthen programs ensuring every individual is able to achieve a sense of peace, fulfillment, and closure during their care trajectory.

This study aimed to investigate healthcare professionals’ experiences with using the PRO Palliative Care questionnaire (PRO-Pall) to identify palliative care symptoms and problems in non-specialized palliative care settings among patients with heart, lung, and kidney disease, and cancer. The study also investigated the PRO-Pall’s potential to ensure further initiatives and care.

A national, multicenter, observational study employing a mixed-methods approach. It includes quantitative analysis using an evaluation survey (n = 286) and qualitative analysis from workshops (n = 11). Quantitative data were analyzed descriptively, while qualitative data were analyzed thematically.

Quantitative and qualitative data were organized according to 3 a priori-defined themes: Theme 1: Assessment of palliative symptoms, Theme 2: Support for dialogue, and Theme 3: Timely initiation of initiatives and care. The evaluation survey and qualitative interviews with healthcare professionals indicated that it was valuable to use PRO-Pall in a non-specialist palliative context to screen for symptoms and problems, as well as to initiate actions. PRO-Pall helped to structure the dialogue and had a positive effect on the quality of the conversation.

The findings highlight that it can be valuable to utilize the PRO-Pall in general palliative care settings for patients with heart, lung, or kidney diseases as well as cancer. When implementing PRO-Pall in practice, it is crucial to carefully consider the entire process, from administering the questionnaire to planning initiatives informed by patients’ PRO responses.

Carers are critical to support discharge home from hospital at end of life yet remain under-represented in health service initiatives to assist this transition. A carer-focused intervention embedded into practice may facilitate hospital discharge. This open-labeled, single-arm phase 2 study aimed to determine the feasibility of (1) delivering a multi-staged intervention (CARENET) to carers of advanced cancer patients in a hospital setting and (2) the study design to inform a phase 3 trial.

CARENET, delivered before and after discharge to address carer support needs, was tested in an Australian specialist cancer hospital. Eligible participants included carers of advanced cancer inpatients with planned discharge home. The primary outcome was intervention and trial feasibility (recruitment and adherence). Secondary outcomes were eligibility and effects of intervention on outcomes including carer preparedness.

Of the 382 potential patient–carer dyads, 25 were recruited within required time frames. The intervention adherence outcome feasibility threshold of 80% of carer participants completing all 3 core components of CARENET was not achieved (60% completion). Trends in improvement in overall carer levels of preparedness were observed from baseline to discharge home (n = 12; mean [95% CI]) 0.5 [−0.0007, 1.007]). However, a downward trend in preparedness to provide emotional care after discharge was observed (n = 12; mean [95% CI] 0.25 [−0.30, 0.80]).

Delivering all elements of the CARENET intervention to address carers’ needs in the discharge planning context was not feasible. However, some elements were feasible, including identifying and responding to carer need, whilst completing elements after discharge were less feasible. Findings can be explained by problems with adherence, eligibility, and clinician barriers to fitting a multi-staged carer intervention into an acute healthcare setting. Future research should test a more adaptable intervention and delivery model that is accessible to all carers across and compatible with acute care settings.

Family caregivers (FCGs) may experience numerous psychosocial and practical challenges with interpersonal relationships, mental health, and finances both before and after their care recipient (CR) dies. The specific challenges affecting rural FCGs who often have limited access to palliative care services, transitional care, and other community resources are not well understood. The purpose of this paper is to quantify the challenges rural FCGs experienced immediately before the death of a CR and continuing into the bereavement period.

A secondary analysis of data from a randomized controlled trial was conducted. The 8-week intervention included video visits between a palliative care research nurse and FCGs caring for someone with a life-limiting illness. Data were from structured interviews during nurse visits with FCGs in the intervention arm whose CR died during the intervention period.

Ninety (41.8%) of the 215 FCGs experienced the death of their CR. The majority of FCGs were female (58.9%), White (97.5%), spouses or partners (55.6%) and lived with the CR (66.7%). Most FCGs (84%) continued with intervention visits by the study nurse after the CR’s death. Visits resumed on average 7.2 days post-death. The majority of FCGs experienced challenges with grief/coping skills (56%) and interpersonal relationships/support systems (52%) both pre- and post-death of the CR. FCGs also experienced practical challenges with income/finance, housing, and communication with community resources both pre-and post-death.

Bereavement support should extend beyond a focus on grief to include practical challenges experienced by FCGs. Because challenges experienced in the bereavement period often begin before a CR’s death, there is benefit in continuity of FCG support provided by a known clinician from pre- to post-death. When given an option, many rural FCGs are open to bereavement support as early as a week after the death of a CR.

This study explored Australian palliative care clinicians’ perspectives on the legalization of voluntary assisted dying (VAD), aiming to identify variables associated with clinicians’ views and understand challenges of its implementation.

An online survey exploring support for legalization of VAD was sent to palliative care clinicians in Queensland and New South Wales and followed up with semi-structured interviews. Support was categorized as positive, uncertain, or negative. An ordinal logistic regression model was used to identify variables independently predictive of euthanasia support. Interviews were analyzed using grounded theory to understand key concepts shaping views on VAD.

Of 142 respondents, 53% supported, 10% were uncertain, and 37% opposed legalizing euthanasia for terminal illness with severe symptoms. Support was lower for patients with chronic illness (34%), severe disability (24%), depression (9%), severe dementia (5%), and for any adult with capacity (4%). The model showed lower support among doctors than nurses (38% vs. 69%, p = 0.0001), those in New South Wales compared with Queensland (44% vs. 69%, p = 0.0002), the highly religious versus least religious (24% vs. 79%, p = 0.00002), those politically conservative versus progressive (39% vs. 60%, p = 0.04), and those with more healthcare experience (p = 0.03). Seventeen interviews revealed 2 distinct groups: one focused on the event of death and the need to relieve suffering, providing comfort in the final moments; the second on the journey of dying and the possibility of discovering peace despite suffering. Those in the first group supported legal VAD, while those in the second opposed it. Despite opposing views, compassion was a unifying foundation common to both groups.

There are 2 fundamentally different orientations toward VAD among palliative care clinicians, which will likely contribute to tensions within teams. Acknowledging that both perspectives are rooted in compassion may provide a constructive basis for navigating disagreements and supporting team cohesion.

Although the importance of advance care planning (ACP) for individuals with adult congenital heart disease (ACHD) has been established, there is no consensus regarding the optimal age to initiate ACP discussions. We asked ACHD patients their opinions about the timing of the first ACP discussion.

Adult patients seen in an outpatient ACHD clinic from April to August 2018 completed a self-administered questionnaire that evaluated opinions regarding the content and timing of ACP discussions, end-of-life communication preferences, and anticipated emotional responses to ACP discussions.

Ninety-five patients participated. Median age was 34.8 years (Q1 – Q3: 28.4 - 47.1 years), 53% (n = 50) were female, and 91% (n = 86) had great or moderate disease complexity. Although 75% (n/N = 69/92) thought ACP was important, only 37% (n/N = 35/94) had completed advance directives. Most (79%, n/N = 72/91) preferred ACP conversations early, either before getting sick (44%, n = 40/91) or when first diagnosed with a life-threatening illness (35%, n = 32/91). Responses varied regarding the appropriate age for first ACP conversations: 28% (n/N = 25/88) chose options ≤ 15 years, 23% (n/N = 20/88) 16–17 years, 32% (n/N = 28/88) 18–20 years, and 17% (n/N = 15/88) ≥ 21 years old.

ACHD patients value ACP discussions and think they should occur early in the disease course, before patients face a life-threatening disease complication, yet most think these conversations should wait until later adolescent or young adult years. ACP readiness should be assessed to determine the optimal timing of ACP discussions.

Brain tumors are associated with negative changes in sense of self and increased distress early in the illness trajectory. Dignity Therapy (DT) is a brief 2-session therapeutic intervention for patients at end-of-life (EOL) that helps conserve a patient’s sense of dignity or self. DT has shown positive results for patients at EOL including increased meaning, improved quality of life (QOL), and reduced distress, with limited research to date on patients early in their illness trajectory (non-EOL). This pre-post design pilot study investigated the benefits and feasibility of DT for 2 groups of patients with incurable brain tumors.

A total of 51 participants were recruited, of whom 39 participated. Participants were grouped as EOL (prognosis < 1 year, n = 21) and non-EOL (prognosis > 1 year, n = 18). Participants completed self-report measures to determine changes in QOL, psychosocial well-being (i.e., spiritual well-being, connection, and posttraumatic growth), and death anxiety, at baseline, 1 week, and 5 weeks post-intervention.

The intervention had a high completion rate, with 37 of 39 participants (95%) completing DT. Linear regression models fitted with generalized estimating equations (GEEs) showed within- and between-group significant changes in all domains for both groups, but were particularly beneficial for non-EOL participants.

This study demonstrated that DT effectively enhanced psychosocial well-being in patients with brain tumors, including reductions in death anxiety and dignity-related distress. Non-EOL participants benefited most and had higher completion rates, highlighting the intervention’s feasibility and the need for further research in earlier stages of terminal illness.

Cancer patients often suffer from refractory symptoms near death. The use of sedatives aims to relieve suffering caused by these symptoms. The practice varies broadly. The aim of this study was to evaluate the role and trends of midazolam use in cancer patients dying in a university hospital oncology ward.

The study population of this retrospective registry-based study consists of patients who died in a university hospital oncology ward in Eastern Finland in 2010–2018 (n = 639). Information about treatment decisions, midazolam use, and background factors were gathered.

During the study period, 14.7 % of the patients dying in the ward received midazolam with sedative intent prior to death. 4.7 % (n = 30) of the whole study population had continuous infusion and the rest of the midazolam use was one or multiple single doses. Documented discussion of possible palliative sedation (PS) use was found in almost one third of all patients. Out of those, eventually receiving midazolam with sedative intent, two thirds had had this discussion. The most common symptoms leading to midazolam were dyspnea, pain, and delirium. In continuous use the median midazolam infusion rate was 4.0 mg/h. The continuous infusion started median of 23.25 h and multiple single doses 19 h before death. If only one dose of midazolam was needed, it was given median of 30 minutes prior to death and the most common symptom was dyspnea. Those who received midazolam were more likely to be younger (p = 0.003) and had had a palliative outpatient clinic visit (p = 0.045).

This is the first study to report the trends and practices of midazolam use for refractory symptoms in Finland. Midazolam was used for approximately every 7th dying cancer patient. Applying midazolam was supported by a history of palliative clinic visits and younger age.

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.