Glioblastoma multiforme (GBM) is the most common and aggressive form of brain cancer. Family caregivers of individuals with GBM must navigate a wide range of their care recipients’ physical, cognitive, and psychosocial deficits to provide effective care, which is both mentally and physically demanding. This study aimed to investigate the perspectives of family caregivers of GBM patients about the barriers and challenges they encounter when providing care to their care recipients.

Nineteen current and former family caregivers for individuals with GBM participated in semi-structured interviews from October 2023 through January 2024. We conducted interviews virtually and used applied thematic analysis to code transcripts to determine themes among participant responses.

Three themes emerged from the interview analysis: (1) overwhelming caregiver burden, (2) difficulties coping with the caregiver role, and (3) gaps in caregiver support. These themes demonstrated a significant physical and mental toll on caregivers and a lack of time for engaging in coping strategies. The family caregivers described a lack of resources, minimal education, and limited time with their medical providers left them feeling ill-prepared for their role. Most family caregivers indicated their care recipients did not use rehabilitation services and the family caregivers expressed confusion about hospice and palliative care.

Family caregivers for individuals with GBM desire more straightforward and proactive information and education about their care recipients from their medical providers. There is an opportunity for more utilization of hospice, palliative, and rehabilitation services to provide necessary training to GBM patients and their caregivers.

Naldemedine is a peripherally acting μ-opioid receptor antagonist used to treat opioid-induced constipation. As this drug does not cross the blood–brain barrier, it is believed that patients without brain metastases do not experience opioid withdrawal symptoms.

Here, we experienced a case in which a cancer patient without brain metastasis presented with anxiety and restlessness that was severe enough to interfere with daily life. The patient was diagnosed with naldemedine-induced opioid withdrawal syndrome.

The patient was a 66-year-old male with liver cancer metastasizing to the chest wall, but without brain metastasis. Oxycodone was started at 10 mg/day 2 months prior to his visit to our department to treat pain related to the chest wall metastasis, and was increased to 100 mg/day 1 month later and maintained at that dose. Naldemedine was administered as a countermeasure against opioid-induced constipation. The patient developed anxiety and restlessness 10 days prior to his initial visit to our department.

After detailed examination, naldemedine-related opiod withdrawal syndrome was suspected on the basis of anxiety, agitation, and episodes of sudden onset sweating, and these symptoms disappeared within 2 days after the discontinuation of naldemedine, with no recurrence observed thereafter. In addition, head MRI revealed no brain metastasis.

Even in patients without brain metastasis, naldemedine can induce opioid withdrawal symptoms, so caution is required with patients receiving this drug. In addition, when psychiatric symptoms are pronounced, as in this case, withdrawal symptoms may be underdiagnosed.

Dignity Therapy (DT) is a brief psychotherapeutic intervention designed to address the psychosocial and spiritual needs of terminally ill patients. Research demonstrates DT’s efficacy in reducing dignity-related distress and alleviating psychosocial symptoms like depression and anxiety in terminally ill patients. Its application has been extended to nonterminal patients with chronic conditions, mental health challenges, and children nearing the end of life, with promising results. DT also benefits families and caregivers, promoting emotional resilience and facilitating grieving. However, the potential for proxy applications, such as posthumous DT (p-DT) – conducted by relatives after a patient’s death or on behalf of individuals unable to participate – remains underexplored.

A case series report.

This case series examines 3 relatives who engaged in p-DT, highlighting its feasibility and potential benefits.

Findings suggest p-DT may serve as a valuable tool for bereavement support, warranting further research to expand its scope and accessibility.

The link between opioids and peripheral edema has been discussed in the literature, though scarcely, especially in case reports involving patients using transdermal fentanyl for pain management.

We present a case of a 51-year-old man with advanced head and neck cancer who developed severe, asymmetrical left-sided hemifacial edema following the initiation of transdermal fentanyl for pain management, which subsequently subsided after switching to transdermal buprenorphine.

We reduced the fentanyl patch from 75 to 62.5 mcg/h. At a follow-up visit within 48 hours there was some improvement in the swelling of the eyelids and tongue, but no significant change was noted in the lips, chin, and cheek region; and the patient experienced facial pain and discomfort due to swelling. It was then decided to rotate the opioid to buprenorphine transdermal patch 52.5mcg/h every 3 days; and a rapid improvement in the patient’s face, particularly in the eyelids and cheek region was observed. The remaining edema with the buprenorphine patch could be due to cancer progression.

The final diagnosis of edema as a side effect of transdermal fentanyl was reached through careful knowledge of the frequent and non-frequent side effects of opioid drugs, clinical observation and, importantly, by listening to the patient and his wife, whose insights and observations were integrated with the medical team’s knowledge and assessments. Our report enhances the benefit of paying close attention to the input and observations of patients and caregivers, as they are the ones most familiar with the disease’s impact on daily life and the subtle changes and details that may go unnoticed in the clinical setting.‡

This study aimed to explore situations where caregivers and patients are likely to collude, from the perspective of caregivers of advanced cancer patients in Bangladesh.

This study took place in 2 different tertiary care hospitals in Bangladesh. The study design included both quantitative and qualitative components. In this study, we focused on situations in which caregivers choose not to disclose the truth, regardless of their patients’ desire to know it. This may include instances of mutual withholding or cases of deliberate withholding by caregivers, even when patients express a desire to know the truth. While collusion may occur in some instances, not all situations qualify as collusion; nonetheless, all of these situations were broadly considered as collusion-prone. The intensity of enactment was assessed using the “Caregiver Collusion Questionnaire,” and in-depth exploration of collusion-prone situations was conducted through key person interviews with the caregivers.

The intensity of enactment was medium to high among two-thirds (83.1%) of caregivers. This intensity was significantly associated with the caregivers’ relationship with the patients and their intention to disclose the truth (p < 0.01). Higher intensity of enactment has been observed among the children who are tending to their terminally ill parents. Four major themes regarding collusion-prone situation were generated by the qualitative analysis: (1) Reasons for nondisclosure; (2) Time of disclosure; (3) Selective disclosure; and (4) Discloser of truth.

The nature of collusion-prone situations is shaped by culture and social values. By gradually and indirectly addressing these situations, healthcare professionals can assist families in navigating through difficult conversations and ensure that the patient’s wishes and values are respected.

Objectives: Severe forms of acute and chronic graft-versus-host disease (GvHD) are life-threatening complications after adjusted to allogeneic hematopoietic bone marrow or peripheral blood stem cell transplantation (allo-HSCT) and are a major cause of non-relapse mortality. Little is known about the burden, needs, and resources of this specific patient group. This qualitative interview study aimed to explore the experiences of patients with severe forms of GvHD and their perception of palliative care (PC).

Methods: Semi-structured interviews were conducted among 13 participants at a tertiary university hospital and were evaluated by qualitative content analysis.

Results: The participants described a high psychological and physical symptomatic burden resulting in severely impaired physical function up to loss of independence, which all substantially limited their quality of life (QoL). Frequent long-term hospitalizations highly impacted their social life including the ability to work. A desire to die was frequently experienced, particularly when participants suffered from peaks of burden and uncertainty about the future. Dying was either feared or perceived as relief. Not all participants received PC and the term was sometimes associated with fear or remained unclear to them.

Significance of results: Patients with severe forms of GvHD described a multifactorial, high overall burden, and permanently impaired QoL, which needs special support. Next to depressive symptoms, the frequently reported desire to die has not yet been thoroughly studied and requires further research. The infrequent use of PC in this context implicates a need for structural improvement and education in the German healthcare system.

In the UK, access to dignified and compassionate palliative care is increasingly being reported as inadequate. This is a particular issue in South-West England, where there is an ageing population, historical lack of research, and particular challenges due to its rural and coastal location. The aim of this study was to provide a holistic view of patient and family experiences of care toward the end-of-life in this location and to collaboratively identify the challenges they face.

Six qualitative focus groups were held with people who were toward the end of their life, family/carers, and people who were bereaved. Participants were recruited via hospice networks. Most focus groups were face-to-face, and all were facilitated by two researchers.

A range of challenges were identified at different stages of the patient and family carer journey near the end-of-life. These included issues related to the delivery of care, such as communication challenges, a lack of out of hours care, and also a lack of personalized care. Patients and families also experienced everyday challenges due to the impact of living with a life-shortening condition and altered family dynamics as family members became carers. There were also some traumatic experiences of death and a sense of abandonment when care could not be accessed.

This study provides a core first step in developing partnership working with members of the public, which can be built upon to develop future research agendas. This work has identified areas for improvement, so that ultimately, end-of-life experience for the individual, their carers, and families can be improved.

This review aimed to chart existing literature and identify gaps in the evidence base concerning palliative and end-of-life care perspectives and experiences among different generations of African migrants residing outside the continent.

This review adhered to a predefined protocol, utilizing the Arksey and O’Malley 5-stage framework, as refined by Danielle Levac and colleagues. A systematic search of 5 bibliographic databases (from inception to December 2022) yielded 79 published studies. After title, abstract, and full-text screening using Covidence®, 7 studies met the inclusion criteria. Data extraction was guided by a conceptual framework tailored to the research topic and questions, with results presented in the narrative form.

Cultural and religious beliefs and practices significantly shaped African migrants’ perspectives on end-of-life care. A nuanced boundary between palliative and curative care emerged, with the former often stigmatized and stereotypically associated with death and dying. Common barriers to accessing end-of-life care included limited awareness, low literacy, and perceived inadequacy of culturally sensitive care, resulting in disparities in both access and outcomes. Additionally, reluctance to discuss death and dying, along with mistrust of Western healthcare systems, constituted significant obstacles. The studies underscored the necessity of enhancing provider–patient communication by engaging with migrants to raise awareness of services and fostering inclusive healthcare environments for improved care outcomes.

Existing research on racial and ethnic disparities underscores the unequal quality and outcomes of end-of-life care across various racial groups. However, there is still insufficient understanding of these diverse end-of-life care needs, particularly in host countries. Bridging this knowledge gap is crucial for reducing health disparities and enhancing the delivery of culturally sensitive care within Western healthcare systems.

This study explored bereaved relatives’ experiences of end-of-life care (EoL care) in the last 3 days in an acute private hospital in Australia.

An interpretative qualitative study was conducted. Semi-structured interviews with 8 bereaved relatives whose family member had died at an acute private hospital shared their experiences of the EoL care during the last 3 days of life. The transcribed interviews were analyzed using inductive thematic analysis.

Bereaved family members had mixed experiences, and their primary concerns related to the need for improvements in support for the family; communication; and clinicians partnering with families. The need for family support encompassed care for the person dying and the bereaved relatives, before and during the last days of life, and after death. Bereaved relatives perceived that hospital based EoL care could be positive when the care was collaborative with health professionals, patients, and relatives and there was effective communication.

A patient- and family-centered approach to EoL care should be provided in hospitals, and it requires understanding of the needs of both patients and family members, including informational requirements, communication approaches, and care delivery. Health-care organizations have a responsibility to care for families and this must be considered as part of organizational readiness and ongoing assessment to determine if the standards for EoL care are met. The findings serve as a guide for evidence-informed practice and may contribute to the development of resources and guidelines for delivery of quality EoL care.

People living with HIV experience an elevated risk of serious medical illnesses as they age, but access palliative care (PC) at lower rates than individuals without HIV. HIV psychiatrists provide longitudinal psychosocial care to individuals living with HIV. As such, HIV psychiatrists can play an important role in providing PC to people living with HIV (PLWH). This qualitative study was conducted to explore the perspectives and experiences of HIV psychiatrists in addressing the PC of PLWH.

We conducted semi-structured interviews with HIV psychiatrists. Data were analyzed using thematic analysis.

Nineteen HIV psychiatrists were interviewed. Three core themes with several subthemes were identified. These were: (1) lack of an operationalized role for HIV psychiatrists in supporting PC provision, (2) heterogeneity in engagement with PC among HIV psychiatrists, and (3) HIV psychiatrists have valuable skills to address patients’ PC needs but also face unique challenges in doing so.

Overall, we found that there is significant heterogeneity in how HIV psychiatrists provide PC. Psychiatrists were interested in engagement with PC but felt their roles and scope were poorly defined. This study points to the possibility for greater integration of HIV psychiatrists in the provision of PC for patients with HIV through improvements in PC training for psychiatrists who work with patients with medical illness and through a more operationalized role and scope of practice in this domain of care.

Patients with advanced cancer and their caregivers experience a substantial amount of anxiety and distress. The purpose of this study was to assess the feasibility, acceptability, and preliminary effects of an 8-week, remotely delivered Resilient Living Program (RLP) for adult patients with advanced cancer and their caregivers.

Eligible patients included adults (≥18 years) with advanced cancer. Their caregiver had the option to participate. The RLP components included online modules, a print journal, and 4 video-telehealth-delivered sessions. Content focused on techniques for managing stress and building resilience (mindful presence, uplifting emotions, reframing experiences through practicing principles of gratitude, compassion, acceptance, meaning, and forgiveness). Feasibility and acceptability were assessed quantitatively and with semi-structured interviews conducted with a subset of participants. Effectiveness measures (anxiety, stress, quality of life [QOL], sleep, resiliency, and fatigue) were administered at baseline, week 5, week 9, and week 12.

Of the eligible patients, 33/72 (46%) were enrolled. In all, 15 caregivers enrolled. Thirty participants (21 patients/9 caregivers) completed at least 3 video-telehealth sessions (63% adherence). For patients, there were statistically significant improvements in anxiety and fatigue at week 12 (p = 0.05). Other effectiveness measures (stress, QOL, sleep, resiliency) showed positive trends. Eleven participants were interviewed and qualitative analysis revealed 4 themes: Easy to Use, Learning Key Principles, Practice is Essential, and Examples of Benefits.

Participation in the RLP was feasible and acceptable for patients with advanced cancer and their caregivers. Participants tended to indicate that the practices were easy to integrate into their everyday lives, engendered their ability to focus on the positive, and would recommend the RLP to other individuals living with advanced cancer. Preliminary effectiveness data suggest the program may positively impact anxiety, stress, QOL, sleep, resiliency, and fatigue. A larger randomized clinical trial is warranted to confirm these preliminary findings.

This study aimed to examine the extent to which mindfulness, self-compassion, and body image distress are associated with peaceful acceptance or struggle with illness in terminally ill cancer patients, after controlling for psychological distress, sociodemographic characteristics (age, gender, education, marital status), and clinical characteristics (body mass index, Karnofsky Performance Status, time since diagnosis).

A cross-sectional study was conducted with 135 terminally ill cancer patients. Participants were consecutively sampled. Two five-step hierarchical regression models were performed, one for peaceful acceptance and the other for struggle with illness. The models included sociodemographic (step 1), clinical characteristics (step 2), psychological distress (step 3), mindfulness and self-compassion (step 4), and body image distress (step 5).

Body image distress was negatively associated with peaceful acceptance after controlling for the other variables. Both body image distress and self-compassion were uniquely associated with struggle with illness, in a positive and negative direction, respectively. The overall models explained 33% of the variance in peaceful acceptance and 61% in struggle with illness.

Targeting body image distress may be important for both enhancing peaceful acceptance and reducing struggle with one’s terminal condition. Addressing self-compassion, however, may help patients alleviate the struggle alone. These findings suggest that peaceful acceptance and struggle with illness may follow different clinical pathways with partly different underlying mechanisms. This study provides a foundation for future research to develop interventions for body image and self-compassion specifically tailored to the needs of terminally ill cancer patients.

Up to 40% of severely ill patients report at least an occasional desire to die, opening up not only to professionals but also to hospice volunteers and patients’ informal caregivers. Based on an existing, evaluated 2-day desire to die training for professionals, we intend to adapt the training for hospice volunteers and informal caregivers, both face-to-face and online and provide a preliminary evaluation.

Multi-method approach to (1) assess needs regarding content and form for (online) trainings for hospice volunteers and formats for informal care givers using online focus groups and (additional) individual interviews, (2) adapt existing training materials for both groups accompanied by expert discussion, and (3) pilot and evaluate the (online) trainings and formats through (online) surveys.

In an online focus group with n = 4 informal caregivers and n = 2 additional online interviews, participants reported wishes for form (e.g. short formats in plain language) and content (e.g. needs in relation to health professional and patient). The n = 6 hospice volunteers also wished for form (e.g. plain language) and content (e.g. volunteer role). Results were implemented in (a) a volunteer adaptation of the training, e.g. with target-group-specific case studies and (b) the development of an online format for informal caregivers. For evaluation, we conducted (a) 2 face-to-face trainings for hospice volunteers (n = 14 and n = 20) and (b) 2 online formats for informal caregivers (n = 7 and n = 13). Both groups benefited strongly from participation.

Hospice volunteers and informal caregivers deal with patients’ desires to die – often without being adequately prepared. Through (online) trainings and formats, their awareness and self-confidence regarding desire to die can increase. It is therefore of high relevance to meet the demand for easily accessible and target group specific (online) trainings on dealing with desire to die.

We previously developed a 24-item Terminal Delirium-Related Distress Scale (TDDS) to evaluate patient and family distress due to terminal delirium. However, a scale with fewer evaluation items was needed to reduce the burden on terminally ill patients and their families. Thus, the TDDS Shortform (TDDS-SF) was developed, and the validity and reliability of the scale were evaluated.

The aim of this study is to evaluate the validity and reliability of TDDS-SF.

Items with insufficient loading (<0.6) based on factor analysis were removed from the TDDS. Palliative care experts reviewed each item and checked the structure of the scale. Based on their feedback, we developed the TDDS-SF, a 15-item questionnaire consisting of 4 subscales, including “Care for the family,” “Ability to communicate,” “Psychiatric symptoms,” and “Adequate information and discussion about treatment for delirium.” A cross-sectional, self-completed questionnaire survey of bereaved families of cancer patients who were admitted to a hospice/palliative care unit was conducted in August 2018. The survey included the TDDS-SF, Good Death Inventory (GDI), Care Evaluation Scale (CES), and distress score in the Delirium Experience Questionnaire. The validity, including construct validity, convergent validity, discriminant validity, and internal consistency, and reliability, including the Cronbach’s alpha coefficient for internal consistency, of the TDDS-SF were evaluated.

The study included 366 bereaved family members. Factor analysis revealed good construct validity. Convergent validity was demonstrated based on good correlations with the CES (r = − 0.54, P < 0.001) and the GDI (r = − 0.54, P < 0.001). Discriminant validity was demonstrated by a low correlation (r = 0.23, P < 0.001) with the distress scores of bereaved families. The internal consistency was also good (Cronbach’s alpha = 0.70–0.94).

The TDDS-SF is a valid and feasible tool for assessing irreversible terminal delirium-related distress. A study targeting patients and their families with end-of-life delirium is planned for the near future.

To evaluate the prognostic utility of Palliative Prognostic Index (PPI) scores in predicting the death of adults with advanced cancer.

A systematic review and meta-analysis were conducted. Six databases were searched for articles published from inception till 16 February 2024. Observational studies reporting time-to-event outcomes of PPI scores used in any setting, timing and score cutoffs were eligible. Participants were adults with advanced cancer residing in any setting. Random effects meta-analysis was used to pool hazard, risk, or odds ratios. Findings were narratively synthesized when meta-analysis was not possible.

Twenty-three studies (n = 11,235 patients) were included. All meta-analyses found that higher PPI scores or risk categories were significantly associated with death and, similarly, in most narratively synthesized studies. PPI > 6 vs PPI ≤ 4 (pooled adjusted HR = 5.42, 95% confidence intervals [CI] 2.01–14.59, p = 0.0009; pooled unadjusted HR = 5.05, 95% CI 4.10–6.17, p < 0.00001), 4 < PPI ≤ 6 vs PPI ≤ 4 (pooled adjusted HR = 2.04, 95% CI 1.30–3.21, p = 0.002), PPI ≥ 6 vs PPI < 6 (pooled adjusted HR = 2.52, 95% CI 1.39–4.58, p = 0.005), PPI ≤ 4 vs PPI > 6 for predicting inpatient death (unadjusted RR = 3.48, 95% CI 2.46–4.91, p < 0.00001), and PPI as a continuous variable (pooled unadjusted HR = 1.30, 95% CI 1.22–1.38, p < 0.00001) were significant predictors for mortality. Changes in PPI scores may also be useful as a prognostic factor.

A higher PPI score is likely an independent prognostic factor for an increased risk of death, but more research is needed to validate the risk groups as defined by the original development study. Meta-analysis results need to be interpreted cautiously, as only 2–4 studies were included in each analysis. Clinicians and researchers may find this useful for guiding decision-making regarding the suitability of curative and/or palliative treatments and clinical trial design.

To evaluate and synthesize research that has investigated interventions to train registered health professionals to effectively communicate with patients in acute settings who are establishing their goals of care, to develop an understanding of current practices and their effectiveness.

Integrative review.

Medline, Embase, PsycINFO, SCOPUS, CINAHL, and ProQuest, searched from the date each database was available to December 2023. Forty-seven (n = 47) research studies investigating interventions to train registered health professionals to effectively communicate with patients in acute settings who are establishing their goals of care were critically appraised for methodological quality using the Joanna Briggs Institute Quality Appraisal Framework. Minimum essential criteria and scores were agreed prior to appraisal.

Twenty-eight studies were excluded due to methodological quality. The 19 studies included comprised quasi experimental (n = 9), qualitative (n = 4), RCT (n = 2), text and opinion (n = 1), and mixed methods (n = 3). From these included studies 4 themes with embedded sub-themes were derived: (a) delivery of training programs, (b) clinician outcomes, (c) patient outcomes, and (d) system outcomes.

Communication training is essential and beneficial however its effectiveness depends on overcoming existing barriers, providing continuous learning opportunities, and embedding these into clinical practice. Addressing these factors will ensure that clinicians and healthcare organizations can improve patient and system outcomes. When clinicians and organizations prioritize regular, context-specific communication training, which promotes the use of conversation guides and available technologies, Goals of Patient Care conversations are more likely to be embedded in practice, promoting effective and patient-centered communication.