Sleep problems are common in palliative care patients. In addition, psychological problems can affect sleep quality. The aim of this study was to investigate sleep quality, anxiety, and depression in palliative care patients.

The study was conducted between May 1, 2023 and October 31, 2023 in Turkey. The patient information form, the Pittsburgh Sleep Quality Index (PSQI), and the Hospital Anxiety and Depression Scale (HADS) were used to collect data. The data were analyzed using the Pearson correlation and multiple linear regression test.

A total of 59.3% of patients were male, 76.7% were married, 89.3% had poor sleep quality, 61.3% had anxiety, and 86.7% were at risk of depression. A positive moderate correlation was found between HADS-anxiety, HADS-depression, and HADS total with subjective sleep quality. A positive moderate correlation was found between HADS-anxiety, HADS depression, and HADS total with the PSQI total. Sleep latency, sleep duration, sleep disturbances, use of sleep medication, and daytime dysfunction showed a weak positive correlation with HADS-depression and HADS total. In the regression analysis, anxiety proved to be a statistically significant predictor of sleep quality, while depression was not a significant predictor. These variables were found to explain 22% of the total variance in sleep quality.

The patients’ sleep quality was poor. Anxiety and the risk of depression were high. A positive moderate correlation was found between the total score of sleep quality and anxiety and depression. Anxiety was found to be a statistically significant predictor of sleep quality.

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 non-terminal patients with chronic conditions, mental health challenges, and children nearing the end of life, with promising results. However, the potential for proxy applications, such as posthumous p-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 that examines three relatives who engaged in posthumous p-DT, highlighting its feasibility and potential benefits.

p-DT seems to benefit families and caregivers, promoting emotional resilience and facilitating grieving.

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

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.

Dignity is perceived as being valued and respected. Maintaining dignity throughout illness is a fundamental principle of palliative care. Dignity can be influenced through family caregiver’s communication, support, and acts of empathy or indifference among other factors. The perception of dignity and the practices adopted by family caregivers to preserve the dignity of their ill relative with serious illness in Lebanon are explored in this paper.

This is a part of a larger study that explored the understanding of dignity from patients’ and family caregivers’ perspectives in a palliative care context. Data collection involved in-depth interviews with 15 family caregivers. Interviews were analyzed using reflective thematic analysis.

Four main themes, that explained how family caregivers understand, and uphold their relative’s dignity during illness, were developed:

(a) Familial duty expressed through presence and compassion;

(b) Holistic care and financial stability;

(c) Social connection and family roles;

(d) Compassionate services and communication.

Family caregivers maintained the dignity of their ill relatives through being there, compassionate communication, supporting the personal and medical needs of the patient, and helping them preserve their family role. Family caregiving was often underpinned by religious values and a sense of duty. Compassionate services and effective communication were essential to preserve dignity of the ill relative during hospitalizations.

Family caregivers assume multiple roles in fostering the dignity of relatives with serious illnesses. It is crucial that family caregivers are supported by policies, healthcare systems, and community initiatives as patients cannot thrive nor sustain dignity without their support.

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.

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.

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.

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.

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.

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.

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.