Effective communication during specialist palliative care (PC) referral is linked to improved health outcomes. Initiating a conversation about PC is difficult and poor communication can lead to stigma. The aim of this descriptive phenomenological study was to explore the communication experiences of persons referred to specialist PC services and their carers and explore strategies to improve such experiences.

Purposive sampling was used to recruit 17 participants who were either receiving specialist PC and/or caring for someone who was receiving specialist PC. Participants were recruited from a hospice. Inductive thematic analysis was conducted.

Four themes were identified: (i) The why, who, what, when, where, and how of PC referral; (ii) initial thoughts and feelings about referral to PC; (iii) enhancing the communication of PC referral; and (iv) addressing practical needs during PC referral. Participants were referred either through their general practitioner or oncologist. Initially, participants linked PC referral to death. This perception changed when participants started availing of the services. Compassion, empathy, hope, privacy, in-person communication, individualized referral, and information dosing were identified as building blocks for effective communication. Participants stressed the importance of raising public awareness of PC and addressing the practical needs of individuals being referred.

The communication of PC referral should be tailored to meet the individual needs of patients and carers. Delivering clear and simple information is important to help patients and carers understand and accept the referral.

Patients with cancer benefit greatly from receiving palliative care (PC), improving their overall survival and quality of life. Despite its benefits, PC is underutilized among patients with hematologic malignancies (HMs), particularly among Black patients, who face higher symptom burdens and lower survival rates compared to White patients. The purpose of this review was to identify and describe what is known about PC use among Black HM patients in the United States.

This review was conducted using the Joanna Briggs Institute approach for scoping reviews and included a search of the databases MEDLINE (PubMed), Embase (Elsevier), Scopus and Web of Science (Clarivate). The search was developed and conducted by a professional medical librarian in consultation with the author team and focused on keywords such as Black/African American patients, HM, and PC. Articles were screened and selected based on predefined inclusion criteria and carried out using Covidence software for systematic review management.

Seven publications were included in the final sample and most used quantitative methods and data from large national databases such as the National Cancer Database. Four of the studies reported that Black patients with HM were less likely to receive or use PC compared to White patients. Access to PC was associated with better outcomes, such as lower hospital charges and a reduced likelihood of dying within 30 days of initiating palliative radiotherapy.

This scoping review highlights ongoing inequities in the use of PC among Black patients with HM which mirrors trends in patients with solid cancers. Future studies should be conducted to understand the determinants of these disparities and to also build testable interventions to improve PC use within this underserved population.

To describe the frequency of prognostic awareness (PA) in a population of advanced cancer patients in a Latino community and to explore the relationship between accurate PA with emotional distress and other covariates.

In this cross-sectional study performed in Puente Alto, Chile, advanced cancer patients in palliative care completed a survey that included a single question to assess PA (Do you believe your cancer is curable? yes/no). Patients reporting that their cancer was not curable were considered as having accurate PA. Demographics, emotional distress, quality of life, and patient perception of treatment goals were also assessed. Analyses to explore associations between PA and patient variables were adjusted.

A total of 201 patients were included in the analysis. Mean age was 65, 50% female. One hundred and three patients (51%) reported an accurate PA. In the univariate analysis, accurate PA was associated with not having a partner (p = 0.012), increased emotional distress (p = 0.013), depression (p = 0.003), and were less likely to report that the goal of the treatment was to get rid of the cancer (p < 0.001). In the multivariate analysis, patients with accurate PA had higher emotional distress or depression, were less likely to have a partner, and to report that the goal of the treatment was to get rid of the cancer.

Half of a population of Latino advanced cancer patients reported an accurate PA. Accurate PA was associated with increased emotional distress, which is similar to what has been reported in other countries. Weaknesses in prognostic disclosure by clinicians, local cultural factors, or higher motivation to seek prognostic information among distressed cancer patients could explain this association. Strategies to emotionally support patients when discussing prognostic information should be implemented.

This study aimed to examine the impact of perceived caregiver burden and associated factors on the anger levels and anger expression styles of family caregivers for patients receiving palliative care at home.

This cross-sectional and exploratory correlational type study was conducted with 343 family caregivers. Data were collected face-to-face between March and September 2022 using a Caregiver and Care Recipient Information Form, the Burden Interview, and the Trait Anger and Anger Expression Scale.

There was a significant from very weak to weak correlation between the caregiver burden scores and trait anger, anger-in, anger-out, and anger control scores. The caregiver burden increased trait anger, anger-in, and anger-out while decreasing anger control. The caregiver burden, daily caregiving hours, presence of another dependent at home, presence of a separate room for the care recipient, income level, chronic illness of caregiver, duration of caregiving per month, and care recipient gender explained 17.2% of the total variation in anger control scores.

The caregiver burden levels and anger expression styles of family caregivers vary depending on the characteristics of both the caregiver and the care recipient. Family members may experience an increase in perceived caregiver burden, which can lead to elevated levels of trait anger, suppression of anger, and reduced anger control. Healthcare professionals should monitor the family caregivers’ caregiver burden and anger levels. Family caregivers should be encouraged and given opportunities to express their feelings and thoughts about caregiving. Strategies aimed at reducing the caregiver burden and coping with feelings of anger should be planned for the family members of patients receiving palliative care at home.

Palliative care services are unavailable for the vast majority of children in Bhutan. Children’s palliative care has not been incorporated into training programs for health professions, leading to limited knowledge and awareness of how best to support children facing serious or life-threatening conditions.

To describe the impact of the Project ECHO children’s palliative care course on participants’ knowledge, comfort, and attitudes and to evaluate the overall acceptability of an online training to support palliative care training in Bhutan.

Before-and-after surveys of program participants were conducted, assessing changes in knowledge, comfort, and attitudes. Participants’ overall experiences and acceptability of the learning program were assessed through an end-of-program survey.

Participants were primarily nurses (49%) or physicians (34%). Most participants (68%) worked in pediatric and/or neonatal care. Participants’ knowledge of core palliative care concepts improved significantly between the beginning and end of the course. Participants’ comfort and attitudes toward palliative care also improved, with significance effect sizes in most domains (11/18). Satisfaction with the program was high, with 100% of participants agreeing that the training was applicable to their clinical practice. Although most participants (56%) identified a personal need for additional clinical training to support practice change.

Project ECHO can be used to deliver palliative care education, with improved palliative care knowledge, comfort, and attitudes among program participants. A short online training program can generate interest in palliative care, which can be leveraged to further develop palliative care services in settings where palliative care is currently unavailable.

Research on grief among family caregivers of individuals with dementia has seen a notable increase. Our objective was to synthesize the relationship between coping factors and pre-death grief (PDG).

(Prospero protocol: CRD42024560208) We conducted a systematic review of literature from PubMed, Web of Science, Scopus, PsycInfo, and Medline up to July 2024. Included studies encompassed quantitative, qualitative, and mixed methods approaches. During the study selection process, we excluded data on intervention effectiveness and studies not published in English. The quality of the studies was evaluated using the Mixed Methods Appraisal Tool. Evidence was summarized narratively.

Participants in this study are family caregivers who take care of dementia patients.

We included data from 12 studies in our analysis. The majority of these investigations were carried out in Western countries. The research primarily involved spousal or adult child caregivers and centered on PDG. We included validated measures of PDG in each study.

Among the reviewed studies, five reported on coping strategies, while seven addressed coping resources. Overall, the findings indicated that the application of coping strategies, specifically positive coping strategies, is effective in alleviating PDG and mitigating the effects of caregiving burden on PDG. Coping resources – including self-efficacy, sense of coherence, and support from friends and family – appear to have a beneficial impact in reducing PDG. Additionally, the quality of relationships with friends and family members was found to be a significant factor. Moreover, spiritual and religious beliefs, along with community faith, have been identified as crucial elements in alleviating grief experienced by caregivers.

Knowing what coping strategies and resources are beneficial to decrease PDG experiences among dementia caregivers.

The use of palliative care (PC) services from people of Islamic faith is seen limited. There are a fundamental lack of PC services appropriate to the target group and a lack of knowledge and acceptance. The transition from curative to PC is often perceived as problematic. Factors influencing PC use and end-of-life (EOL) decisions and preferences among people of Islamic faith are largely unclear.

A scoping review was carried out using the methodology of the Joanna Briggs Institute. Studies of any design, published in English, German, or Arabic, and published by the end of August 2022, were eligible for inclusion. The systematic literature search was conducted in MEDLINE via PubMed, CINAHL, Cochrane Library, and Web of Science. Study statements were analyzed with a clear distinction between PC as EOL care and other EOL decisions, such as euthanasia, withdrawal, or withholding of one or more life-sustaining treatments or medications.

Sixty studies published between 1998 and 2022 were included. Only a few studies made statements about EOL care. The majority of studies focused on forms of euthanasia and indicated negative attitudes toward euthanasia, assisted suicide, and some other EOL decisions. Reasons for rejection include theological arguments, ethical and moral considerations, and others. Reasons for acceptance were principles of good death and dying, medical justifications, and others. The following barriers to the use of PC were identified laws and policies, lack of necessary resources, cultural norms and values, structure of the health-care system, communication and interaction between patients, relatives, and health-care staff, and others.

This review identifies the preferences for and difficulties in making EOL decisions and identifies barriers to specific PC for the Muslim population. Findings suggest how these barriers might be overcome.

Up to 40% of seriously ill patients develop a (temporary) desire to die which can lead to requests for assisted dying. Health professionals often feel uncertain about addressing these topics, while informal caregivers may feel guilty and left out. Open and respectful communication proves beneficial. It remains unclear how this communication ideal realizes within the lived experience of all 3 parties. Therefore, we conducted in-depth analysis of communication strategies about desire to die from triangulated perspectives of patients, informal caregivers, and health professionals.

We conducted semi-structured interviews with purposefully sampled triads consisting of seriously ill patients, their respective informal caregivers and health professionals. Interviews were part of the qualitative evaluation of a 3-phase mixed-methods study on the effects of communication about desire to die on seriously ill patients. We followed a framework analysis approach to build communication types.

From the N = 13 patients, 54% suffered from oncological diseases. Health professionals (N = 13) were multiprofessional. Informal caregivers (N = 13) were partners, children, or another relation. All in all, we conducted N = 14 interview triads (n = 3 incomplete; N = 39 individual interviews).

Four key themes emerged from analysis: (a) how open communication was perceived, (b) whether participants reported shared reality, (c) how they talked about death, and (d) their communication strategies.

Ultimately, 3 communication types were inductively derived at from these key themes. Type 1 “Between the Lines,” type 2 “Past each Other” and type 3 “Matter of Fact” show differing expressions on the key themes, especially on (b) shared reality. Specific type characteristics produce suggestions for health professionals’ communicative practice.

Awareness of typical communication strategies is necessary to foresee potential pitfalls such as loss of information or acting on unchecked assumptions. To reduce distress and increase information flow, health professionals should actively approach informal caregivers for desire to die conversations.

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.

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.

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.

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 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.

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.

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.

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.

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.