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The present study investigated the associations among pre-loss grief, relational closeness, attachment insecurities, continuing bonds (CBs) with the deceased person, and the post-loss adjustment of the caregivers of patients with terminal cancer.
Methods
Data were collected in the hospice department of a cancer center in northern Taiwan; 66 bereaved caregivers completed both pre-loss and post-loss scales. The measures used for the pre-loss phase included the Hogan Grief Reaction Checklist (HGRC; pre-loss version), the Experiences in Close Relationship – Relationship Structures Questionnaire (ECR-RS), and the Inclusion of Other in the Self Scale. The measures used 6–12 months after the death of the patients were the HGRC (post-loss version) and the Continuing Bond Scale (CBS).
Results
Pre-loss grief and externalized CBs had a significant impact on the amount of post-loss grief, indicating that pre-loss grief and ongoing transformation of relationships after patients’ death may be predictors of caregivers’ post-loss grieving.
Significance of results
This longitudinal study provides preliminary evidence that pre-loss grief and the relationship with the patient are key to caregivers’ post-loss adjustment, suggesting that psychosocial intervention focuses on caregivers’ pre-loss grief and relationship quality with the patient during palliative care.
The hospital setting is often perceived as slow to change. While employee-driven approaches offer a promising alternative to traditional top-down methods, guidance is limited. This study provides a description and formative evaluation of an employee-driven working group (WG) approach to tailor ward-specific measures to improve care in the dying phase. The aim is to evaluate the WG process and offer practical insights for transferability to other hospitals.
Methods
Formative mixed-methods evaluation of a WG process to tailor ward-specific evidence-informed measures on 10 wards outside specialized palliative care at 2 German medical centers. To analyze factors relevant for the WG process, the Consolidated Framework for Implementation Research 2.0 was applied. Data included baseline evaluation (medical record analysis, staff survey and focus groups, informal caregiver interviews), WG protocols, and an online survey with WG participants.
Results
Multiprofessional WGs were established on all hospital wards, with an average of 7 meetings per ward within 1 year and 4 participants per meeting. Adapting the process to participants’ wishes and needs were crucial, particularly regarding the desired degree of external input. We identified 4 barriers (e.g. declining participation, institutional limits) and 7 facilitators (e.g. involvement of staff in leading positions, multiprofessional composition). The WGs tailored 34 measures, e.g. team meetings to improve communication within the team. Participants’ views were generally positive: 91% felt able to share their thoughts, 66% were satisfied with the outcome, and 77% would participate again.
Significance of results
The employee-driven approach was feasible and useful for tailoring ward-specific measures. However, integrating top-down elements proved to be beneficial. The identified barriers and facilitators provide insights for transferring an employee-driven approach to other hospitals to improve care in the dying phase outside specialized palliative care settings.
Clinical trial registration
The study was registered in the German Clinical Trials Register (DRKS00025405).
As cancer incidence and survival rates rise, caregivers responsible for providing diverse support face increased burden and reduced quality of life (QoL). Although research on web-based interventions for this group is expanding, the impact of these interventions on caregiver burden and QoL remains unclear. This study aims to investigate the effects of web-based interventions on the caregiver burden and QoL of caregivers of patients with cancer.
Methods
Searches were conducted in PubMed, Web of Science, Cochrane Library, CINAHL, Embase, and PsycINFO from database inception to 10 June 2024. Two reviewers independently assessed each study and extracted data. The risk-of-bias in the studies was evaluated using Cochrane’s Risk-of-Bias tool for randomized controlled trials. The intervention effects were calculated using R package Meta version 4.0.3, utilizing standardized mean differences (SMD; Hedge’s ĝ) to calculate pooled effect sizes with 95% confidence intervals (CI). Publication bias assessment and sensitivity analysis were conducted to ensure the robustness of the results.
Results
We reviewed 13 randomized controlled trials; our analysis indicated a small effect size of web-based interventions on caregiver burden (SMD = −0.19, 95% CI: −0.36 to −0.01). However, sensitivity analysis concluded that the effect was very small or nearly absent. Additionally, there was no statistically significant effect on QoL (SMD = 0.15, 95% CI: −0.05 to 0.36).
Significance of results
Web-based interventions did not significantly reduce caregiver burden or improve caregivers’ QoL. To improve caregiver burden and QoL in the future, comprehensive and tailored web-based interventions for this population are needed.
Timely integration of palliative care (PC) into standard oncology hospital care offers significant benefits to patients with incurable cancer and their families. International recognition of the importance of timely PC has shifted the focus from integration to determining the optimal timing for introducing PC. The specific care responsibilities of oncology clinicians acting as generalists in PC and the optimal timing for involving PC specialists remain uncertain.
Objectives
This study aimed to (1) explore how the concept of “timely PC” is understood by oncology clinicians and patients with incurable cancer and (2) investigate how PC is provided in a timely manner in daily clinical practice.
Methods
An interview study was conducted with 18 oncology clinicians (7 physicians, 1 physician assistant, and 10 nurses/nurse practitioners) and 12 patients with incurable cancer. The interviews were conducted between October 2022 and June 2023 and a thematic analysis of the interviews was performed.
Results
Three main themes emerged regarding “timely PC”: (1) timely PC is individual and situational, (2) identification of the right time is an ongoing challenge, and (3) proactive care is essential. Regarding the provision of timely PC, 3 themes were identified: (1) having a strong collaboration among various clinicians, (2) having the courage to start a clear and sincere conversation, and (3) being sensitive and personal.
Significance of results
Being timely is not a fixed point in time, but depends on the individual patient and their situation. Clinicians should be proactive and gradual in bringing up PC-related topics and be careful to use the right words. Tools such as the surprise question can support in timely integrating PC but being timely PC highly depends on a patient’s individual context. Therefore, clinicians should be aware that timely PC is a constant search for the most fitting moment.
Family caregivers play a critical yet often overlooked role in healthcare, facing the dual challenge of providing clinical care while managing their emotional well-being. Although several studies have investigated the supportive care needs and services for caregivers of advanced cancer patients integrated into specialized palliative care inpatient units, little is known about cancer caregiver integration and support structures in German outpatient cancer care. This qualitative study addresses this gap by exploring the experiences of family caregivers in Germany, using a dyadic approach to assess their needs, identify referral strategies, and evaluate oncologists’ perspectives on improving caregiver integration and support.
Methods
Thematic analysis was conducted on semi-structured interviews with 14 advanced cancer patients, 15 family caregivers, and 3 oncologists. MAXQDA software facilitated the identification of key themes and codes.
Results
Three interconnected themes emerged: (1) The Impact of Illness on the Dyadic Relationship, (2) Communication with Physicians and Understanding of Healthcare Information, and (3) Challenges and Preferences in Navigating Healthcare Services and Psychosocial Support.
Significance of results
The findings highlight the need for enhanced support in caregiving to improve cancer care quality, emphasizing that early palliative care integration is vital for addressing caregiver needs as a core component of comprehensive cancer care. Healthcare practices should adopt personalized, proactive support strategies from diagnosis, implement regular needs assessments, and leverage digital healthcare tools to enhance the efficacy and efficiency of caregiver support.
To develop an effective, targeted educational intervention that can serve as a teaching tool to educate African American (AA) populations, especially the elderly, on end-of-life (EOL) options prior to critical care.
Methods
A survey was used to assess the level of preparation and determine deficits in knowledge regarding EOL choices in the AA community of Saginaw, Michigan, before and after educational intervention. We used a paired-sample t-test to assess changes in understanding about EOL planning options, McNemar’s to test changes in intention to use hospice and palliative care, and Spearman correlations to identify demographics influencing change of outcomes. Outcome scores associated with multiple demographic variables were regressed on these demographics.
Results
Our data indicated that the intervention was an effective teaching tool in educating the AA population on EOL choices. Significant changes were observed in understanding of EOL options, concerns about palliative and hospice care, and intention to use palliative and hospice care. Age and education were also associated with selected outcome changes.
Significance of results
AA patients are more likely than other ethnic groups to choose life-sustaining measures at the end of their lives, leading to patients not receiving care to help them die peacefully. This decision is partly based on lack of knowledge of the available EOL care options. This study provides evidence needed for physicians to increase their educational efforts with the AA population regarding EOL options. An educational tool like the one developed in this study may be helpful and lessen the time of education so that physicians can answer questions at the end of the session and empower individuals and communities to take an active role in creating a culture of wellness at the EOL and decreasing morbidity.
Palliative care is a critical component of healthcare, yet its integration into Nigeria’s health system remains limited. Despite the growing burden of life-limiting illnesses, palliative care is underdeveloped, primarily restricted to tertiary institutions. This review examines the evolution of palliative care in Nigeria, key milestones, persistent challenges, and future directions for strengthening its implementation.
Methods
This narrative review synthesized historical records, policy documents, and literature on palliative care in Nigeria. It examined leadership roles, institutional efforts, and government policies influencing Palliative care growth, while highlighting implementation gaps and opportunities.
Results
Palliative care in Nigeria has evolved from early grassroots efforts to structured institutional services. Key milestones include the establishment of the Hospice and Palliative Care Association of Nigeria (HPCAN), and policy advancements such as the National Policy and Strategic Plan for Hospice and Palliative Care. Despite these developments, challenges persist, including inadequate funding, workforce shortages, limited opioid access, policy implementation gaps, and socio-cultural barriers. Leadership engagement, targeted policy advocacy, and comprehensive capacity-building are essential to overcoming these barriers.
Significance of Results
Sustained efforts are needed to fully integrate palliative care into Nigeria’s healthcare system. Strategic interventions, including enhanced policy implementation, funding mechanisms, workforce development, and community engagement, are critical for ensuring equitable access to PC services. Strengthening collaborations between the government, healthcare institutions, and international partners will accelerate progress, ultimately improving the quality of life for patients with life-limiting illnesses.
Children with life-limiting conditions (LLC) are exposed to frequent hospitalizations, with their parents as indispensable supporters, even in inpatient care. Data on the experiences of parents in a hospital setting are scarce. This study aims to identify the burdens and needs of parents of children with LLC in an inpatient setting to promote family-centered care and thereby strengthen parents as effective partners in care.
Methods
Descriptive qualitative interview study with purposeful sampling and analysis conducted according to the coding method of Kuckartz. A total of 10 interviews with parents (7 mothers, 3 fathers) were included in the analysis.
Results
Main topics reported by parents were (1) structural conditions, (2) commitment and competence of health care professionals, and (3) cooperation between parents and professionals. Parents acquire medical expertise during their child’s illness and learn complex medical procedures to be able to competently care for their child at home. However, their competence is often denied in the inpatient setting. Parents felt that the professionals were overburdened by the complexity of the disease and the fate of the child. They perceived a lack of communication and psychosocial care as burdensome and wished for more psychosocial support and specialized inpatient palliative care structures for their child’s care.
Significance of results
Parents should be supported as equal partners in care to improve the quality of their children’s care. Sole medical care is not enough for children with LLC; therefore, a specialized multidisciplinary palliative care team is highly recommended.
To examine the challenges and practical realities of providing end-of-life care in welfare evacuation centers following the Noto Peninsula earthquake in Japan, and to identify lessons for improving disaster preparedness in similar settings.
Case presentations
Case 1: A man in his late 90s was transferred to a welfare evacuation center after contracting COVID-19 in a general shelter. He arrived with fever and marked physical decline. Acetaminophen was administered to relieve his fever and provide comfort. His condition gradually worsened, and eight days after arriving at the evacuation shelter, he died peacefully while being closely observed by medical staff. Case 2: A man in his 60s with a history of smoking and alcohol use was found bedridden and incontinent at home and was subsequently moved to a welfare evacuation center. Two days after evacuation, he complained of leg and back pain, which was suspected to be due to arterial occlusion. He was monitored and provided with supportive care at the center, however, pain control remained inadequate. Four days after evacuation, he was found in respiratory arrest and was confirmed dead.
Conclusion
These cases underscore the need for establishing unified guidelines and external support frameworks for end-of-life care in disaster settings. In a disaster-prone country like Japan, scenario-based training and the integration of trained volunteers are essential to ensuring dignified care for vulnerable evacuees.
This study aims to explore the everyday experiences of people living with Lewy body dementia and their families, to deepen understanding of their care needs. Lewy body dementia is a neurodegenerative condition associated with shorter life-expectancy and poorer quality of life than other forms of dementia. Cognitive fluctuations, visual hallucinations, falls, and motor features of Parkinsonism gives rise to complex and debilitating symptoms. Other prominent features include behavioral and emotional problems, rapid eye movement sleep disorder, and autonomic dysfunction. Improving palliative care for people with dementia continues to be an international priority; however, little is known as to how a palliative care approach could support people living with Lewy body dementia and their families.
Methods
Drawing on narrative theory of self and personhood, a qualitative, longitudinal narrative approach provided unique insights into 5 couples’ experiences of living with Lewy body dementia. Analysis was conducted using Murray’s levels of narrative analysis in health psychology to explore stories at the personal, interpersonal, positional, and societal level.
Results
Participants with Lewy body dementia described losses associated with communication, continence, and energy leading to a progressive loss of independence. For their family caregivers a loss of companionship was particularly salient. These losses, compounded by a perceived lack of clinical support, resulted in suffering both for the person with Lewy body dementia, and for those close to them.
Significance of results
There has been a societal and political shift to move beyond loss in dementia, to a focus on abilities and living well. However, acknowledging loss, while supporting symptom management is an important aspect of Lewy body dementia care. Providing person-centered, palliative supportive care throughout the disease trajectory could reduce suffering and enhance well-being.
Patients with cancer frequently experience insomnia that significantly impacts their quality of life, worsens existing symptoms, and potentially hinders treatment outcomes and recovery. Here, we report on 3 cancer patients whose insomnia was improved with low-dose olanzapine.
Methods
A retrospective review of medical records was conducted for 3 cancer patients experiencing insomnia treated with olanzapine at Johns Hopkins Hospital. The data collection included the type of cancer diagnosis, the level of insomnia severity experienced by individuals, and treatment results and outcome.
Results
Olanzapine improved sleep in all 3 patients and decreased nausea/vomiting and anxiety in patients 2 and 3.
Significance of results
A low dose of olanzapine has potential to treat insomnia in cancer patients. The ideal dosing regimens and potential risks are unclear, especially for long-term use. More research and clinical trials are needed to evaluate off-label use of olanzapine for insomnia, including its efficacy and risks, and to optimize the dosage to reduce its side effects in cancer patients. Oncology providers should consider olanzapine as a potential treatment for insomnia, especially given its off-label uses and potential benefits.
Objective. Witnessing existential suffering in patients is associated with increased risks of compassion fatigue and burnout in palliative care physicians. Finding meaning is a protective factor for burnout and is associated with increased job satisfaction and a sense of purpose.
While the significance of finding meaning through the doctor-patient relationship is widely recognized, less is known about the subjective experience of palliative care physicians, how they ascribe meaning, and how meaning sustains them. The aim of this study was to describe and interpret how palliative care physicians experience meaning when caring for patients.
Method. Hermeneutic-phenomenology, inspired by the philosophy of Heidegger and Gadamer, informed the methodological approach. Ten palliative care physicians, caring for adult patients, completed semi-structured interviews. Van Manen’s “lifeworld existentials” supported our reflexive hermeneutic analysis to interpret participants’ moments of meaning-making.
Results. Our analysis identified two interpretive concepts for meaning-making: moments of connection and moments of transformation. Meaningful connection occurred when physicians and patients together acknowledged existential suffering in death and dying and experienced it on a personal, human level. Often, experiences were fleeting but had a lasting impact. Experiences of connection had a transformational effect on physicians and were associated with a sense of reward and purpose in palliative care work.
Significance of results. Findings are discussed in relation to philosophical literature on the experience of time, contrasting man-made time with the existential experience of time. Moments of connection and transformation experienced by palliative care physicians fueled their commitment to their profession. At a time when burn-out is rife, identifying, describing, and understanding moments of meaning may offer protective benefits for physicians working in palliative care.
Cholangiocarcinoma (CCA) is the second most lethal primary hepatic malignancy. It has been well-reported that most cancer patients prefer to die at home or in a hospice facility. However, there is limited data on the place of death for CCA patients. We evaluated trends and disparities in place of death for patients with CCA from 1999 to 2020.
Methods
Using the CDC WONDER database (1999–2020), we calculated the frequency of CCA deaths at home/hospice and the average annual percentage change (AAPC) over this period stratified by race, age, gender, and region. We employed logistic regression to assess for associations between these variables and place of death for patients whose death was attributed to CCA.
Results
Among 140,422 deaths, a rise in deaths occurred in home/hospice facilities compared to inpatient medical or nursing facilities across all variables examined. Blacks and individuals ≥ 85 had the highest proportion of deaths outside of home/hospice. However, Blacks showed the highest AAPC (8.56%) in home/hospice deaths, followed by Asians (AAPC 8.44%). In contrast, individuals aged 45–54 saw the lowest AAPC (4.27%). Non-whites were less likely to die at home/hospice, with Blacks demonstrating the lowest adjusted odds ratio (aOR 0.64). Those ≥ 85 were less likely to die in home/hospice (aOR 0.78), whereas individuals aged between 55–64 (aOR 1.11) and 65–74 (aOR 1.12) had increased odds of dying in these settings. Patients from the Western region were the most likely to die at home/hospice (aOR 1.04).
Significance of results
Our study highlights disparities in place of death of patients with CCA amongst races, regions, and ages. Non-whites, extremes of ages, and patients from the Northeast have disproportionately poor outcomes in terms of end-of-life care in the US. These findings emphasize the need for efforts to address sociodemographic disparities in end-of-life care to improve patient-centered health outcomes.
Moral distress affects a significant proportion of clinicians who have received requests and participated in euthanasia or physician-assisted suicide (E/PAS) globally. It has been reported that personal and professional support needs are often unaddressed, with only a minority of those reporting adverse impacts seeking support.
Objectives
This study aimed to review studies from 2017 to 2023 for the perceived risks, harms, and benefits to doctors of administering E/PAS and the ethical implications for the profession of medicine resulting from this practice.
Methods
The search explored original research papers published in peer-reviewed English language literature between June 2017 and December 2023 to extend prior reviews. This included both studies reporting quantitative and qualitative data, with a specific focus on the impact on, or response from, physicians to their participation in E/PAS. The quantitative review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The qualitative review used the Critical Appraisal Skills Programme to assess whether studies were valid, reliable, and trustworthy.
Results
Thirty studies (quantitative n = 5, qualitative n = 22, mixed methods n = 3) were identified and fulfilled acceptable research assessment criteria. The following 5 themes arose from the synthesis of qualitative studies: (1) experience of the request prior to administration; (2) the doctor’s role and agency in the death of a patient; (3) moral distress post-administration; (4) workload and burnout; and (5) professional guidance and support. Both quantitative and qualitative studies showed a significant proportion of clinicians (45.8–80%) have been adversely affected by their involvement in E/PAS, with only a minority of those reporting adverse impacts seeking support.
Significance of results
Participation in E/PAS can reward some and cause moral distress in others. For many clinicians, this can include significant adverse personal and professional consequences, thereby impacting the medical profession as a whole.