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.

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.

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.

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 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.

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.

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.

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

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

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

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

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.