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.

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.

Family caregivers influence realization of home death among advanced cancer patients. However, little is known about the caregiver factors influencing patients’ preferred and actual place of death. We aimed to assess caregiver factors associated with both caregivers’ and patients’ preferred place of death, and the association between their preferred and actual place of death.

From a prospective cohort of 600 patients with stage IV solid malignancy, and 311 caregivers, we analyzed data for 227 patient–caregiver dyads of deceased patients who responded to the question on preferred place of death for patients at least once within the last 3 years before death. We assessed the association of patients’ and caregivers’ preferred place of death for patients with caregivers’ competency, employment, relationship quality with the patient, their relationship with the patient, family support, and the presence of a domestic helper. We controlled for relevant patient factors and utilized the actor–partner interdependence framework for analysis.

Overall, 67% patients and 74% caregivers preferred a home death for patients during the last 3 years prior to patient’s death. Patients whose caregivers reported greater caregiving competency were more likely to prefer a home death (average marginal effect: 0.02; 95% confidence interval, 0.003–0.04). Spousal caregivers were less likely to prefer a home death (−0.10 (−0.19, −0.004)). Caregivers lacking family support were more likely to prefer an institutional death (0.04 (0.002–0.08)). While caregivers’ preferences had a marginally significant association with patients’ actual place of death (p-value < 0.10), we did not find any association between patients’ preferred and actual place of death.

Caregivers play a crucial role in shaping patients’ preferred and actual place of death. Supporting caregivers, particularly spousal caregivers, and enhancing their caregiving competency could potentially help achieve a home death for the patient.

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.

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 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.

Parents’ experiences of loss and grief in the context of caring for a child with life-limiting severe neurological conditions are complex. Supportive interventions delivered by multidisciplinary teams have the potential to mitigate illness-related and anticipatory grief before and after bereavement. To date, the literature on professionals’ discussion of loss and grief with parents has not been synthesized. This systematic review aims to synthesize the evidence to establish what is known about professionals’ experience of these discussions with this population, with particular emphasis on timing, frequency, and the setting in which discussions occur.

A scoping review was developed, informed by the Preferred Reporting Items for Systematic Reviews and Meta analyses – Scoping Extension guidelines and the PCC (Population, Concept, Context) framework. Three electronic databases (PsycINFO, CINAHL, and PubMED) were searched using medical subject heading (MeSH) terms and keywords search strings in January 2023. The search was not limited to year of publication. Overall, 35 articles were analyzed using a combination of descriptive analysis and thematic synthesis.

Two overarching themes were identified, “loss and grief are part of this context” and “lack of recognition of loss and grief,” illustrating that despite the lack of evidence of explicit discussion of these issues, some aspects of loss and grief appeared to guide or implicitly influence healthcare professionals’ practice. Failure to acknowledge loss and grief was associated with an increase in parental distress and had implications for future care planning.

Healthcare professionals are well placed to discuss loss and grief with parents of children with life-limiting severe neurological conditions. However, these discussions are only implicitly reported in the literature. Findings suggest that some professionals avoided discussing loss and grief. Bereavement outcomes are not typically considered in findings of the papers reviewed. Based on these findings, future research should focus on what this means for understanding professionals’ capacity to engage with loss and grief.

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.

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.

Head and neck cancer (HNC) often requires complex management and care. While the primary goal of treatment is curative, some advanced cases require consideration of non-curative pathways to optimize patients’ quality of life (QOL) and survival. This narrative review describes important aspects of palliative care and highlights strategies for employing these non-curative options in HNC.

We identified peer-reviewed articles on the state of palliative care in HNC and its implementation. We searched for articles using terms including “palliative care,” “non-curative care,” “comfort care,” “head and neck cancer,” and “head and neck squamous cell carcinoma.”

HNC is associated with a high disease burden; patients report high levels of pain, and both disease and treatment often compromise ability to carry out activities of daily living. There exist several non-curative routes of treatment, including palliation of symptoms, acute end-of-life (EOL) care, and hospice and home care. These care options provide comfort and optimize QOL of patients. Unfortunately, non-curative care could be misconstrued as withdrawal of treatment, or the provider team “giving up” on patient; these misconception can discourage patients from embracing palliative measures designed to alleviate symptom burden. Proper physician–patient communication, normalization, and early incorporation of these non-curative strategies into mainstream treatment could potentially ease patient concerns, and, eventually in EOL cases, help patients achieve dignified deaths.

Patients with HNC have unique palliative care needs due to their complex treatment and symptom burden. Early incorporation of non-curative plans such as palliative care alongside active treatment could help reduce symptom burden. Clinicians should strive to build trusting relationships with patients with HNC and effectively communicate with them about palliative care options. Guidelines that include such recommendations can help physicians regularly introduce palliation into the realm of active HNC treatment for advanced/incurable disease.

People with advanced cancer express the need for support to balance everyday activities to experience quality of life. The Balance, Activity and Quality of Life Intervention was developed to address this need using a resource- and activity-oriented approach that integrates rehabilitation into palliative care. To inform a future full-scale evaluation, the objective of this feasibility study was to test if the selected outcome measures of health-related quality of life, including physical function and fatigue, and occupational balance could capture any possible changes of the Balance, Activity and Quality of Life Intervention in people with advanced cancer.

Repeated-measurement feasibility study without a control group (ClinicalTrials.gov NCT04772690). Twenty-two home-living adults with advanced cancer participated in the study. The intervention was delivered at the research clinic of REPHA, The Danish Knowledge Centre for Rehabilitation and Palliative Care. Data regarding health-related quality of life, including physical function and fatigue, and occupational balance were collected with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 and the Occupational Balance Questionnaire at baseline, after a 5-day intervention stay and at 6- and 12-week follow-up.

The outcome measure of health-related quality of life captured a statistically significant improvement (p = 0.0046) after the 5-day intervention stay, with 64% of the participants experiencing clinically relevant improvements. No other statistically significant changes were found. Missing data were minor.

Health-related quality of life is a promising outcome measure to capture the possible changes of the Balance, Activity and Quality of Life Intervention. The results indicate that a resource- and activity-oriented approach may be helpful when integrating rehabilitation into palliative care.

Healthcare provider self-disclosures are common although sometimes controversial. Providers have unique opportunities to self-disclose for the purpose of conveying empathic concern during Dignity Therapy sessions. We examine the topics of empathic self-disclosures (ESDs) during Dignity Therapy sessions.

We analyzed 203 audio-recorded, transcribed Dignity Therapy sessions from a stepped-wedge, randomized trial of Dignity Therapy led by 14 nurses and chaplains in outpatient palliative care. We extracted 117 ESDs across sessions and applied thematic analysis guided by the constant comparative method to generate ESD topic themes and properties.

Providers disclosed ESDs referring to topics of Relationships and Family, Personal Experiences and Characteristics, Cohort Communalities, Location and Geography, and Values. Though each provider led multiple Dignity Therapy sessions in this dataset, providers rarely disclosed the same information to more than one patient. Some disclosures subtly shifted the patient’s life review. Providers often acknowledged patients that their self-disclosures were not prescribed elements of Dignity Therapy sessions.

Providers engage in ESD across a range of personal topics in a Dignity Therapy context. Some ESD topics overlapped with those considered appropriate in existing health communication literature. Other topics involved complex or underexamined types of disclosures. While self-disclosures appear to be made with empathic intent, providers undermined the impact of some ESDs by portraying them as unprescribed components of the conversation. More research is needed to assess the positive and negative impacts of ESDs during Dignity Therapy and to support augmentation of Dignity Therapy training protocols to account for providers’ ESDs.

Coping-Together is a self-directed, self-management intervention initially developed for patients in early-stages of cancer and their caregivers. This study evaluated its acceptability among patients with advanced cancer and their caregivers.

Twenty-six participants (patients with advanced cancer n = 15 and their caregivers n = 11) were given the Coping-Together materials (6 booklets and a workbook) for 7 weeks. Participants were interviewed twice during this time to solicit feedback on the intervention’s content, design, and recommended changes. Audio-recorded interviews were transcribed verbatim, and thematic analysis was conducted.

Participants found Coping-Together was mostly relevant. All (n = 26, 100%) participants expressed interest and a desire to improve their self-management skills. Perceived benefits included learning to develop SMARTTER (specific, measurable, attainable, relevant, timely, and done together) self-management plans, normalizing challenges, and enhancing communication within the dyad and with their healthcare team. Most (n = 25, 96%) identified strategies from the booklets that benefited them. Top strategies learned were skills to manage physical health (n = 20, 77%) (e.g., monitoring symptoms), emotional well-being (n = 21, 81%) (e.g., reducing stress by reframing thoughts), as well as social well-being (n = 24, 92%) (e.g., communicating with their healthcare team). Barriers included illness severity and time constraints. The unique advanced cancer needs that are to be integrated include support related to fear of death, uncertainty, palliative care and advanced care planning. Suggested modifications involved enhancing accessibility and including more advanced cancer information (e.g., end-of-life planning, comfort care, resources).

Participants reported several benefits from using Coping-Together, with minimal adaptations needed. Creating SMARTTER self-management plans helped them implement self-management strategies. Specific areas for improvement addressed the need for improved accessibility and more content related to advanced cancer. Findings demonstrate how Coping-Together is acceptable for those living with advanced cancer and their caregivers, offering much of the support needed to enhance day-to-day quality of life.

This review provides an overview of patient-reported outcome measure (PROMs) utilized to assess the impact of advance care planning (ACP) among older adults and evaluates their psychometric properties.

The inclusion criteria were as follows: (1) studies that targeted older adults; (2) studies using of any type of measurement tools that measure patient-reported ACP program outcomes; and (3) studies published in English or Korean. Following PRISMA guidelines, a systematic review was conducted, encompassing electronic searches across 5 databases including PubMed, EMBASE, Cochrane Library, CINHAL, and PsycINFO and manual searches of umbrella reviews on ACP interventions. General characteristics of the selected measures were extracted, and their methodological quality was assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist.

Out of 19,503 studies initially identified, 74 met the inclusion criteria, reporting on a total of 202 measures. These measures were categorized into 4 domains reflecting the targets of ACP interventions: process (n = 56), action (n = 18), process and action (n = 16), quality of care (n = 63), and health status (n = 49). Despite the breadth of measures identified, none fully met all recommended psychometric properties outlined in the checklist.

While this review aids in the selection of measures for both practical and research purposes, it underscores the necessity for further validation of PROMs in assessing ACP outcomes in older adults, advocating for rigorous psychometric evaluations and adherence to standards like the COSMIN checklist to ensure reliable and valid data. It suggests the need for shortened versions and researcher assistance to address the challenges older adults face with self-reported PROMs and improve participation rates.

Recent studies have challenged the assumption that families are invariable sources of support for cancer caregivers, noting that relationships with family members can have both positive and negative effects on caregiver well-being. This study expands upon prior literature to examine the relationship between cancer caregivers’ perceptions of the quality of their family interactions and their symptoms of anxiety.

We employed secondary analysis of baseline data from a multisite randomized clinical trial of an intervention for cancer caregivers conducted at 3 large academic palliative care clinics. We performed linear regression analyses to analyze the relationship between caregivers’ perceptions of the quality of their family interactions and their symptoms of anxiety; additional models were estimated to further characterize this relationship with the addition of relevant covariates: race, ethnicity, sex, marital/relationship status, relationship to patient, employment status, household income, and perceived social support received from friends and significant others. We also conducted a sub-analysis of data provided by caregivers who were married or partnered to examine the relationship between their perceptions of the quality of their family interactions and their symptoms of anxiety with relationship satisfaction as a covariate.

Among our analytic sample (n = 244), we identified a significant negative relationship between cancer caregivers’ perceptions of the quality of their family interactions and their symptoms of anxiety; this relationship remained statistically significant with the addition of covariates. Relationship satisfaction was not found to be a statistically significant covariate in our sub-analysis of married or partnered caregivers.

Study results provide strong support for the development, testing, and implementation of interventions to improve family interactions as a strategy to reduce caregiver anxiety.