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A theology of accompaniment offers insights on how to journey with and be present to those who suffer from terminal illness. In order to sustain acts of accompaniment, the companion must cultivate specific virtues through prayer and the practices of the Christian community. This ethic of accompaniment is based on a Thomistic conceptualization of the virtues of charity and fortitude. These virtues enable the companion to engage in four types of practices with and on behalf of the dying patient. Ethical accompaniment offers the following contributions to end-of-life care, the companion can function as a healthcare proxy, offers a viable alternative to physician-assisted suicide, and overcomes the loss of meaning associated with death through the Christian narrative. [ABSTRACT FROM AUTHOR]

Research in palliative care is regarded as ethically challenging although there is increasing recognition that such research is important. Young adults with life-shortening conditions were not expected to reach adulthood but this population is growing and there is limited research that focuses on their lives or their experiences of engaging in research. The study explored the unintended consequences of pandemic control measures on the lives of young adults living with life-shortening conditions in the United Kingdom. This paper focuses on some of the methodological issues arising from this study, drawing on data that explores participants' experiences of taking part. This is an interpretivist and inclusive qualitative study co-produced with three experts by experience using constructivist Grounded Theory method conducted during the first wave of the Coronavirus pandemic. In-depth interviews using a topic guide were transcribed verbatim and analysed iteratively until the point of data saturation. Twenty-six young adults aged 22–40 (17 female; 9 male), reporting a wide range of life-limiting and/or life-threatening conditions including rare and undiagnosed conditions and co-morbidities. Through analysis we identify four key themes focusing on participants' experiences of taking part in the research: helping others and influencing change; reciprocity and support; therapeutic value; and (in)visibility and legacy. This paper offers methodological reflections on research in palliative care drawing on qualitative co-produced research involving young adults with life-shortening conditions. Our findings indicate that although participating in research can feel uncomfortable, this is outweighed by the perceived benefits of contributing to research. [ABSTRACT FROM AUTHOR]

The study's aim is to explore the experiences of nursing home residents and their next of kin related to interacting with volunteers in daily life and when the resident's death is imminent. Qualitative data consisted of 130 hours of participant observations in three nursing homes and 13 interviews with five residents and eight next of kin. A thematic analysis identified three themes: (1) Social everyday activities - a frame for responsiveness and meaningful everydayness - reflecting the existential dimension of these activities; (2) Time - contrasting volunteers' time for care activities and bedside support to dying residents with professionals' time for similar activities; and (3) Valuable relief when death is imminent - inherent ethical dilemmas - reflecting potential tension between the valuable relief volunteers provide and the preferences of residents and their next of kin. Volunteers can promote and improve a holistic palliative care approach for residents in nursing homes. [ABSTRACT FROM AUTHOR]

Occupations are everyday activities people do that bring meaning and purpose to life and is culturally shaped. This research aimed to explore the occupations of Chinese older adults living with a terminal illness and their caregivers in Singapore. Using a qualitative exploratory approach, 16 care recipient-family caregiver dyads were recruited from a local hospice provider. Semi-structured interviews were carried out and reflexive thematic analysis was employed. Three themes and seven subthemes described the challenges and changes to daily life faced by care recipients and caregivers as they adjusted to living with the terminal condition. Findings suggest that in a family-centric society, the occupations of care recipients are greatly impacted by their families. It is imperative to engage with family members in goal setting and intervention plans to facilitate therapy gains and carry-over into real life. These results may be applicable to other family-centric societies, but further research is required. [ABSTRACT FROM AUTHOR]

Transparent patient-centered communication is essential to providing quality hospice care for patients at the end of life. This study aimed to determine and describe the current state of aid-in-dying policies in California and their effect on hospice nursing in response to narratives about leave-the-room policies presenting professional and moral challenges. In total, 97 hospice program policies were analyzed with a focus on the role of nurses at the bedside and intent to discharge patients who pursue medical aid-in-dying. It is necessary to clarify the important role of hospice nurses who care for terminally ill patients pursuing their legal right to assisted dying. The results of this study underscore the need for improved policy transparency and organizational support to enhance hospice engagement, particularly by nurses, with their patients at the end of life. [ABSTRACT FROM AUTHOR]

The evolving legal landscape associated with medical assistance in dying (MAiD) may pose significant challenges for hospice and palliative care professionals. In the United States, 10 states and 1 jurisdiction have passed legislation allowing MAiD. National organizations, such as the Hospice and Palliative Nurses Association, have created position statements to serve as guides to care. Given the clinical and ethical challenges associated with MAiD, a rapid review was conducted to provide current evidence for policymakers, health care professionals, and researchers to use when considering care management and policy initiatives. Using a systematic approach, publications related to MAiD between 2019 and 2024 were extracted and synthesized. The review provides definitions of terms that differentiate between MAiD, euthanasia, physician-assisted suicide, medically assisted death of the nonterminal patient, and death with dignity. A total of 23 articles were included in the review and categorized into 4 themes: (1) legal, regulatory, and policy concerns; (2) health care professional experience ofMAiD; (3) patient and caregiver experience of and communication about MAiD; and (4) disparate access to MAiD. [ABSTRACT FROM AUTHOR]

Background: As cancer patients approach the end of life, their needs become more complex, increasing the demand for palliative care. Advanced-stage cancer patients encounter increasing unmet psychological, physical, autonomy, and communication needs, reflecting the difference between patients' perceived requirements and the support from health care professionals. The objective of this study was to synthesize qualitative evidence on unmet needs in palliative cancer care among inpatient and outpatient adults. Methods: We conducted a meta-ethnographic review according to Noblit and Hare's framework and the operationalized guidelines developed by Sattar. The eMERGe Reporting Guidance was followed. A literature search was conducted in Cinahl, Embase, Medline, Scopus, Web of Science, PsycINFO and Google Scholar for gray literature. For all the studies, direct quotes from the participants and authors' results were identified, coded and analyzed in NVivo 1.7.1 and extracted as I and II order constructs from which higher third-order themes originated. Results: Eight studies were included. Four new themes emerged, representing areas where palliative cancer care patients expressed a need for help: the need for comprehensive, patient-centered care, the need for maintaining a sense of autonomy and dignity, the need for attentive support to patients' soul and the need for accessible and timely care. Conclusions: Palliative care patients require a secure, suffering-free end-of-life journey with informed decision-making and team support. Ensuring continuity of care, validating their suffering, and allocating sufficient time are crucial aspects of care. This involves maintaining a consistent care plan, respecting patients' emotions and experiences, and providing services tailored to individual needs. [ABSTRACT FROM AUTHOR]

Background: The majority of elderly individuals prefer to spend their final days in the Intensive Care Unit (ICU). ICU nurses are key providers in hospice care, and their attitudes toward death influence the quality of end-of-life nursing. Positive psychology emphasizes promoting positive attitudes toward death. A sense of meaning in life and resilience are critical aspects of positive psychology, which are essential for shaping ICU nurses' attitudes toward death. Objective: This study aims to investigate whether a sense of meaning in life indirectly affects attitudes toward death through the mediation of resilience. Method: A total of 212 ICU nurses from four tertiary general hospitals in Guangdong and Fujian provinces, China, participated in this study. They completed an online questionnaire, including the Death Attitude Profile-Revised, the Connor-Davidson Resilience Scale, and the China Meaning in Life Questionnaire for ICU nurses. Results: ICU nurses scored highest in natural acceptance (3.26 ± 0.53), followed by escaping acceptance (2.54 ± 0.59), and fear of death (2.53 ± 0.78). The proposed model fit the data well. Both the presence of meaning and the search for meaning were positive predictors of resilience (β = 0.313, p < 0.05; β = 0.256, p < 0.05). Resilience, the presence of meaning, and the search for meaning positively predicted natural acceptance (β = 0.299, p < 0.05; β = 0.294, p < 0.05; β = 0.177, p < 0.05). Conversely, these factors negatively predicted fear of death (β = −0.179, p < 0.05; β = −0.251, p < 0.05; β = −0.192, p < 0.05) and escaping acceptance (β = −0.208, p < 0.05; β = −0.208, p < 0.05; β = −0.219, p < 0.05). Mediation analysis indicated that resilience had a partial mediating role. Conclusion: The presence of meaning and the search for meaning influence attitudes toward death, with resilience serving as a partial mediator. It is recommended that nursing administrators consider ICU nurses' attitudes toward death and emphasize the importance of meaning in life and resilience in death education. This approach can help protect the psychological well-being of ICU nurses, promote a deeper understanding of life's meaning, and develop a scientific perspective on death. Such measures are crucial for providing better humanistic care and psychological comfort to terminally ill patients and their families, thereby improving the quality of end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Home-based palliative care is a growing trend, necessitating a deeper understanding of the unique challenges faced by professional staff members in this setting. The shift to home-based care has been driven by advances in technology, changing demographics, and a move toward more patient-centered approaches. As a care setting, the home environment offers distinct characteristics, presenting both advantages and drawbacks for patients and healthcare providers. Objectives: This study aims to explore the experiences and perceptions of professional staff members providing palliative care in patients' homes. Design: A qualitative descriptive study. Methods: Qualitative study with 36 home-based hospice professionals using questionnaires and interviews. Thematic analysis identified key themes in staff experiences and challenges. Results: The central theme of "The Professional Guest" highlights the hybrid identity and boundary role professional staff members must navigate, being both medical professionals and guests in the patient's domain. Four sub-themes emerged: (1) Observing and Applying, emphasizing the conscious scanning of the home environment to build trust and tailor care plans; (2) Asking for Permission, respecting the patient's territory and adapting to their norms; (3) Expecting the Unexpected, maintaining flexibility and improvising in unfamiliar situations; and (4) Preparing the Ground for Your Absence, equipping patients and families with comprehensive self-care guidance during professional staff members' absences. Conclusion: The "Professional Guest" phenomenon captures the complexities of providing care in patient's homes, necessitating a delicate balance between professionalism and personal vulnerability. Specialized training programs and policies should be developed to support professional staff members in navigating this hybrid identity and effectively negotiating the boundaries between professional and personal spheres. Plain language summary: Home visits for end-of-life care: understanding healthcare workers' experiences This study looks at how healthcare workers feel about providing end-of-life care in patients' homes. As more people choose to receive care at home rather than in hospitals, it's important to understand the challenges healthcare workers face in this setting. The researchers interviewed 36 healthcare workers from different backgrounds who work for a home-hospice service in Israel. They found that these workers often feel like "Professional Guests" in patients' homes—they need to be both medical experts and respectful visitors. This can be tricky to balance. The study identified four main ways healthcare workers handle this situation: They carefully observe the home environment to build trust and plan care. They ask permission before doing things, respecting that they're in the patient's space. They stay flexible and ready for unexpected situations. They teach patients and families how to manage when healthcare workers aren't there. The study concludes that providing care in patients' homes is complex and requires a delicate balance between being professional and being personally involved. The researchers suggest that special training programs and policies should be created to help healthcare workers navigate these challenges and provide the best possible care for patients at home. [ABSTRACT FROM AUTHOR]

Background: When there is limited access to primary care or end-of-life services for patients with chronic diseases, caregivers often need to bring their loved ones to emergency departments (EDs) to solve or control distressing physical and psychosocial-spiritual problems. There is limited literature about the experiences of primary caregivers of patients with nononcologic chronic diseases who are at the end of life and are evaluated in EDs in Latin America. Methods: We conducted in-depth interviews with primary caregivers of adult patients with advanced and terminal chronic nononcologic diseases who were evaluated in the ED of a hospital in Lima, Peru. This qualitative study employed a phenomenological approach. Themes, categories, codes, and quotes were analyzed using ATLAS.ti 9.1.4. Results: Twelve primary caregivers, aged 38 to 76 years old, mostly female immediate family members (daughter or wife), participated. They described their experiences in the ED, including feelings of despair and anguish due to prolonged waiting times, insufficient resources, incomplete information regarding the patient's problems, and "insensitive" treatment by the staff. Some also expressed gratitude for "saving patient's lives." They also experienced deficiencies in home care follow-up and patient transfers, which worsened during the COVID-19 pandemic; many times they felt that "they were ignored." When caring for patients at home, caregivers felt sad, helpless, and frustrated as they observed patients' progressive deterioration. As patients approached death, caregivers expressed that they tried to "give them all the love" and to have them present for as long as possible, although at the same time caregivers did not want patients to continue to suffer and hoped for "a better place" after this life. Caregivers found their faith to be a source of strength as they continued to care for and be with their loved one until the end. Conclusion: Caregivers reported "traumatic" and "shocking" experiences during ED care, as well as conflict between wanting the patient's suffering to end and wanting to prolong their lives. They also expressed feelings of gratitude, resignation, love, faith, and hope. [ABSTRACT FROM AUTHOR]

Background: Ethical decision making is a complex issue because it strongly depends on the religion, beliefs, traditional laws and moral views of each society. The purpose of this study was to explore the experience of Iranian family caregivers of end stage cancer patients about ethical decision making. Methods: This qualitative study is based on van Manen's method of hermeneutic phenomenology. In-depth interviews were carried out to collect data. Participants were 12 caregiver. Audiotapes were transcribed and analyzed for common themes that represented the participants' experiences. Trustworthiness of the findings was established using the Lincoln and Guba's criteria. Results: Three themes reflected the essence of caregivers' lived experience including; fluctuating between hope and despair, wandering dilemma, and ethical decision making. Each of these themes consisted of several subthemes. Conclusion: The present study revealed that, the caregivers of terminally ill cancer patients need different information about prognosis and end of life decision making process. Our perception of how families negotiate ethical issues in their decision-making is still developing. Opportunities should be created to empowering caregivers to talk about their uncertainties and concerns. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a well-recognized quality indicator for palliative care. Despite two decades of effort, previous studies showed that ACP-related documentation and end-of-life discussion rates remain low for palliative care patients. Although ACP is about self-determination and autonomy, studies consistently show the importance of family involvement in adult patient's medical decision-making. Yet, research on ACP interventions with structured components targeting family member remained limited. The current study aims to evaluate the effectiveness of a structured, family-supported, patient-centred ACP programme for adult palliative care patients and their families. Methods: This is a 2-arm parallel group randomized controlled trial with follow-ups at 6 and 12 months. One hundred and seventy eligible palliative care patients and their families are planned to be recruited from three hospitals, and randomized to either a structured, family-supported, patient-centred ACP programme (ACP-Family) or usual ACP care (ACP-UC) arm. The ACP-Family intervention consists of 2 sessions. The primary outcome is family's prediction accuracy of patient's treatment preferences at 6 months. Secondary outcomes include proportions of new ACP documentations and family-reported perception of whether the patient's end-of-life (EOL) care preference was respected; patient's decisional conflict; quality of communication; family's decision-making confidence; family's anxiety and depression; and patients' and family members' satisfaction of the intervention. Outcomes of the two groups will be compared using regressions and linear mixed-effects models. Discussion: This study will provide rigorous scientific evidence on the effectiveness of a structured and well-design family-supported, patient-centred ACP programme for adult palliative care patients and their family members in the hospital setting. If the ACP-Family proves to be effective, it will provide a structured and systematic approach to facilitate ACP discussions involving family members. This will respond to local needs and inform international ACP practice. Trial registration: ClinicalTrials.gov Identifier: NCT05935540. [ABSTRACT FROM AUTHOR]

Background: As nurses care for patients at the end of life, they face situations that affect not only their jobs, but other aspects of their lives. However, there is very little research on the psychological impact of caring for terminally ill patients, the challenges that nurses face and their specific coping strategies have not been the subject of much research. Aim: To synthesise the psychological behaviour of nurses working with terminally ill patients and identify their concept of death after caring for terminally ill patients. Method: An integrative review. Results: A total of 17 articles were deemed eligible, wherein 6 themes were generated: (1) the highs and lows of terminal illness care, (2) challenges faced by nurses caring for the terminally ill, (3) the role of nurses in terminal illness care, (4) coping with the effects, (5) coming face to face with one's mortality, and (6) continuing education in terminal illness care. Coping with the effects has two subthemes: (a) coping strategies used by nurses and (b) the role of professional relationships in coping. Conclusion: Nurses need to have a sound mind and body in order for them to be effective when caring for people at the end of life. [ABSTRACT FROM AUTHOR]

Implantable cardioverter defibrillators (ICDs) are implanted in increasing numbers of patients with the aim of treating ventricular arrhythmias in high-risk patients and reducing their risk of dying. Individuals are also living longer with these devices. As a result, a greater number of patients with an ICD will deteriorate either with worsening cardiac failure, another non-cardiac condition or general frailty and will have a limited prognosis. Frequently, they will be cared for by non-cardiac teams who may be less familiar with ICDs. Therefore, to ensure the person receives high-quality end-of-life care, they should have the opportunity to consider and discuss the option to deactivate the shock function of their ICD. If the ICD shock therapy is not discontinued, there is an increased risk that, as a person reaches the last days of life, the ICD may deliver multiple, painful shocks that are distressing. There is also a risk that the device may delay the person's natural death, which the person would not have chosen if they had been given the opportunity to discuss discontinuation. The British Heart Rhythm Society has developed a practical guideline to support all healthcare professionals who are caring for patients who have an ICD. This includes descriptions of different device types, ethical and legal aspects, timing and nature of ICD discussions and practical advice regarding how the devices may be deactivated. It aims to promote awareness and timely discussion between professionals and patients and to encourage best practice. [ABSTRACT FROM AUTHOR]

We conducted a cross-sectional, multicenter study to compare the demographics, clinical characteristics, and lung cancer screening results among individuals eligible for lung cancer screening per 2013 vs 2021 US Preventive Services Task Force recommendations. Statistical tests are 2 sided, with P  less than  .05 considered statistically significant. Among 17 702 screened individuals (85.2% 2013 eligible, 14.8% 2021 newly eligible), a higher proportion of individuals screened per 2021 vs 2013 criteria were female (56.1% vs 48.1%, P  < .001) and non-Hispanic Black (19.3% vs 13.4%, P  < .001). The risk of developing and dying from lung cancer per 1000 people was statistically significantly higher among individuals eligible per 2013 vs 2021 criteria. A higher proportion of lung cancer screening exams had an increased suspicion of lung cancer in the 2013 vs 2021 criteria groups. Our data suggest that, as intended, updated 2021 US Preventive Services Task Force recommendations are leading to a higher proportion of lung cancer screening exams among non-Hispanic Black individuals and women. [ABSTRACT FROM AUTHOR]

Simple Summary: The quality of life is influenced by individual's characteristics and values, personal's beliefs, physical and mental health and the quality of relationship to others. The researchers want to investigate how the quality of life of primary caregivers changes during care for patient with palliative care needs. It is a prospective longitudinal study that assesses the different aspects of the quality of life of caregivers in care process of palliative care. The caregiver burden which increased during the care of patient have a great and negative impact on quality of life as decrease significantly physical, psycho-emotional and social aspects of this. The primary caregiver is feeling the perception of deteriorating general health. Background/Objectives: The quality of life is a complex concept that is insufficiently assessed in clinical practice. It is influenced by different factors, as follows: the individual's characteristics, personal values and beliefs, physical and mental state, and relationship to other members of their community. The quality of life of the primary caregiver influences their health and the quality of their care interventions. This study aims to investigate how the quality of life of caregivers changes during palliative patients' care. Methods: This is a prospective longitudinal study that assesses the different aspects of the quality of life of primary caregivers who care for patients with palliative needs. The tool used in this study was the Medical Outcomes Scale-Short Form 36 (MOS-SF36). Results: This study included 140 caregivers, of which 63 were involved in the care of patients with cancer and 77 were involved in the care of patients with non-oncological diseases. Almost 9 out of 10 caregivers were a family member of the patient and over two-thirds of these were women. The caregivers of patients with non-malignant diseases had a decreased quality of life in the following aspects: limitations in their usual role due to emotional problems, social functioning, energy, and their perception of their general health. In the group of oncological patients, the caregivers displayed limitations in their daily role due to physical health, emotional problems, and social functioning. Conclusions: The large number of responsibilities, the long time spent caring, and the uncertainty about the evolution of the disease as well as the marginalization and lack of time for oneself are some of the elements that increase caregiver burden. Along with this, the quality of life of caregivers decreases significantly in different aspects, such as physical, psycho-emotional, and social, with the perception of deteriorating general health. [ABSTRACT FROM AUTHOR]

Introduction Since World War 1, physicians have noted the calming effects of music for military personnel experiencing "shell shock," Post Traumatic Stress Disorder (PTSD), or stress. Researchers have documented that stress or PTSD-like symptoms re-emerge for veterans at the end of life, triggered by hospital-like settings, co-occurring conditions, and debilitation. Dying veterans also face integration of their service and combat experiences into summations of their lives. In response, there has been a national movement for bedside ceremonies, often with music, to honor veterans. Materials and Methods The project elicited veterans' musical preferences for calming and for music for honor services, using non-hospitalized veterans as surrogates for veterans in hospice. Respondent-driven sampling protected confidentiality and likely resulted in participants being representative of US veterans in terms of ethnicity, gender, and military branch. Recruitment materials contained all elements of informed consent, with consent collected in the introduction to the online survey. The survey had embedded links to musical performances, as well as write-in musical choices, and allowed US veterans from the Army, Air Force, Marines, and Navy to note their preferences both for music that was calming and music to be used in honor ceremonies. Online queries also asked about stress during service, usual coping strategies for stress, and current or past symptoms of PTSD. Links to hot lines were provided. The study was approved by the University of Arizona Institutional Review Board. Results Listening to music was the most prevalent of the 20 coping mechanisms for stress in this sample of 30 veterans. Musical preferences were stable across age groups. For calming, music at resting heartbeat rhythms was chosen. Music from early adulthood or from the timelessness of the classics was selected most often. Modern music with lyrics has themes of duty, affirmation, gratitude, and relief. The nearly universal soothing effects of lullabies were recognized. For music for honor ceremonies, desires were often independent of the military branch. Patriotic songs, or songs recognizing multiple service branches, or with themes of peace and affirmation were more often chosen than music from a particular service branch. Conclusion Listening to music is a frequent coping strategy for veterans. While themes representing classical music choices are readily available in anthologies, other music chosen by this sample is not; the veterans' preferred music is rarely found in compilations of popular, movie, and TV music. Hospice and hospital intakes that document and communicate veterans' musical preferences to music therapists and therapeutic musicians may better support service men and women. Further research may examine veterans' preference for live or recorded music at end of life given the importance of meaning-making and the presence of others documented in the literature. [ABSTRACT FROM AUTHOR]

Background & Objective: Patient's family satisfaction is a crucial but often overlooked indicator of the quality of the intensive care unit (ICU). The goal was to assess how satisfied patients' families were with the treatment they received for terminally ill patients, where we worked with them to create a care plan. Methods: The study was conducted in ICU at Pakistan Kidney and Liver Institute and Research Center (PKLI & RC), Lahore, Pakistan which is a quaternary care center between December 1st 2022 and April 30th 2023. We used the Family Satisfaction in the Intensive Care Unit 24 (FS-ICU 24) questionnaire to interview the next of kin of patients who passed away in our ICU. Results: Of the 330 patients admitted to the intensive care unit (ICU) between December 1, 2022, and April 30, 2023, 42 patients (12.7%) passed away. Mean age was 46.8 ± 14.5 years, with 28 men (66.7%) and 14 females (33.3%). Mean length of ICU stay was 5.57 ± 5.84 day. On a scale of 1-5 (1 = very Dissatisfied; 5 = fully satisfied) the overall family's satisfaction score was 4.21 ± 0.52 with ICU consultants received a high satisfaction rating for informing families about their patients' conditions and involving them in the decision-making process. Conclusion: The study showed involving family members in the care plan and helping them prepare for death not only helps them deal better but also makes them feel satisfied with the treatment they received in the intensive care unit, It makes them appreciate that they were able to participate in the decision-making process. [ABSTRACT FROM AUTHOR]

Background: The "window of opportunity" for intensive care staff to deliver end‐of‐life (EOL) care lies in the timeframe from "documenting the diagnosis of dying" to death. Diagnosing the dying can be a challenging task in the ICU. We aimed to describe the trajectories for dying patients in Danish intensive care units (ICUs) and to examine whether physicians document that patients are dying in time to perform EOL care and, if so, when a window of opportunity for EOL care exists. Methods: From the Danish Intensive Care Database, we identified patients ≥18 years old admitted to Danish ICUs between January and December 2020 with an ICU stay of >96 h (four days) and who died during the ICU stay or within 7 days after ICU discharge. A chart review was performed on 250 consecutive patients admitted from January 1, 2020, to ICUs in the Central Denmark Region. Results: In most charts (223 [89%]), it was documented that the patient was dying. Of those patients who received mechanical ventilation, 171 (68%) died after abrupt discontinuation of mechanical ventilation, and 63 (25%) died after gradual withdrawal. Patients whose mechanical ventilation was discontinued abruptly died after a median of 1 h (interquartile range [IQR]: 0–15) and 5 h (IQR: 2–15) after a diagnosis of dying was recorded. In contrast, patients with a gradual withdrawal died after a median of 108 h (IQR: 71–189) and 22 h (IQR: 5–67) after a diagnosis of dying was recorded. Conclusions: EOL care hinges on the ability to diagnose the dying. This study shows that there is a window of opportunity for EOL care, particularly for patients who are weaned from mechanical ventilation. This highlights the importance of intensifying efforts to address EOL care requirements for ICU patients and those discharged from ICUs who are not eligible for readmission. [ABSTRACT FROM AUTHOR]

This review article examines the recent (i.e., since the late-1990s) research on deathbed visions (DBVs). The reviewed material includes the features of DBV experiences, terminology and definitional issues in the literature, and prevalence reports of DBVs by family members/caregivers of dying persons, healthcare professionals, terminally ill patients, hospice palliative care volunteers, and nursing home staff. The impact of DBVs on dying persons, why deathbed visitors appear, and possible explanations for DBVs are also considered. The lessons learned from the literature review include the following: DBVs are common experiences that cannot be easily explained, and they typically have positive impacts on dying persons, not the least of which is lessening the fear of death. The literature review also highlights the need for training and education about DBVs. [ABSTRACT FROM AUTHOR]

Background and Objectives: The aim of this study was to assess any predisposing factors to the morbidity of fashioning and reversal of diverting ileostomy in a prospective cohort of patients who have undergone TME and low colo-rectal or colo-anal anastomosis for rectal cancer. Materials and Methods: Consecutive patients with rectal cancer undergoing low anterior resection and a defunctioning loop ileostomy in three surgical units from 2016 to 2020 were included in the study and retrospectively analyzed. Results: One hundred eighty-two patients from three centres were included. Ileostomy-related mortality was 0.5%, attributed to renal failure.. Ileostomy-related morbidity was 46%. Postoperative ileus was seen in 37.4%, and dehydration in 18.8% of the patients. The readmission rate for ileostomy-related reasons was 15.4%. Stoma care was problematic in 15.7% or poor in 7% of the cases. Advanced age, male gender and obesity were independent risk factors for ileostomy-related morbidity. Ileostomy was reversed in 165 patients. The morbidity in 165 patients was 16%. Ileus was seen in 10.3%, anastomotic leak in 4.8% and wound infection in 12.7% of the cases. One patient died because of an anastomotic leak. No predisposing factors that affect the outcomes of ileostomy closure were identified. Conclusions: Diverting ileostomy-related morbidity is high. Life threatening dehydration and renal failure from ileus is more commonly seen in elderly, male and obese patients and should be anticipated. Ileostomy closure-related morbidity is low. [ABSTRACT FROM AUTHOR]

Background: The Act on Life-Sustaining Treatment (LST) for patients at the end of life (the Korean LST Decision Act), implemented in the Republic of Korea in February 2018, has led to changes in the end-of-life decision-making (EOLDM) process in children. This study aimed to investigate changes in pediatric EOLDM process and LST practices since the Korean LST Decision Act. Methods: This retrospective cohort study included 107 patients who died at Kyungpook National University Children's Hospital from January 2015 to December 2020. Patients were divided into two groups: pre-law (January 2015–January 2018, n = 55) and post-law (February 2018–December 2020, n = 52). We analyzed medical records for EOLDM process, patient characteristics, intensive care unit (ICU) admission, documentation types, and LST withholding or withdrawal decisions. Results: After the Korean LST Decision Act, the median total hospitalization duration decreased significantly (14 days [IQR, 3–80] vs. 6 days [IQR, 2–18], p = 0.020), as did the median ICU length of stay (3 days [IQR 1–33] vs. 2.5 days [IQR 1–10.3], p = 0.002). The time from admission to end-of-life decision documentation was significantly shorter in group 2 (6 days [IQR 1–31] vs. 4 days [IQR 1–9], p = 0.027). The use of physician orders for life-sustaining treatment (POLST) documents increased (0% to 33.3%), while do-not-resuscitate (DNR) orders decreased (85.3% to 16.7%). Notably, LST withdrawal decisions increased from 0% to 27.8% (p = 0.001) in the post-legislation period. Conclusions: The Korean LST Decisions Act has led to significant changes in the EOLDM process for terminally ill children, including earlier decision-making, increased use of POLST documents, more frequent LST withdrawal decisions, and shorter hospital and ICU stays. These findings suggest a shift towards more structured and timely end-of-life care discussions in pediatric settings. [ABSTRACT FROM AUTHOR]

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Introduction: Providers working with children who are dying are especially prone to burnout. The enhancement of human flourishing in providers may mitigate burnout and improve quality of care. However, the relationship between job satisfaction and human flourishing has not been well studied. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey. The survey also included open-ended questions to explore opinions and attitudes about job satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction (an indicator of flourishing) was associated with private religious activities (r =.38, P <.05), and carrying religion into all aspects of life (r =.44, P <.05). Burnout was not associated with life satisfaction, although power was limited. Qualitative analysis of open-ended questions revealed the following themes as factors contributing to satisfaction at work (flourishing): being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and working within the context of a multi-disciplinary team. A number of challenges to this work were also identified, including lack of resources, problems within the team, and the emotional demands of care. Conclusions: Despite job stress and the difficult work of caring for terminally ill children, several factors were associated with flourishing. These findings may help to enhance the flourishing of caregivers in the resource-challenged setting of pediatric palliative care in South Africa. [ABSTRACT FROM AUTHOR]

The US Inflation Reduction Act (IRA) prohibits the Centers for Medicare and Medicaid Services (CMS) from using standard quality-adjusted life-years or other value assessment methods that discriminate against the aged, terminally ill, or disabled when setting maximum fair prices for prescription drugs. This policy has reignited interest in methods for assessing value without discrimination. Equal value of life-years gained (EVL), healthy years in total (HYT), and Generalized Risk-Adjusted Cost-Effectiveness (GRACE) have emerged as proposals. Neither EVL nor HYT rests on well-articulated microeconomic foundations. We show that they produce decisions that are inconsistent over time in a variety of ways, including: (1) failure to support additivity and indirect comparison in cases where the standard-of-care therapy changes over time; (2) strictly negative value of survival gains that accrue from a new, better standard-of-care, particularly for the disabled themselves; (3) unbounded average value of survival gains; and (4) non-convex survival preferences. We propose an alternative method that relies on GRACE and its microeconomic foundations. [ABSTRACT FROM AUTHOR]

Assisting a person with the intent of hastening death is an emotive and highly contentious issue. Currently, such an action in not legally permissible in Scotland, Wales, Northern Ireland or England. In Scotland there is a now a proposal to change the law, through the Assisted Dying for Terminally Ill Adults (Scotland) Bill (2024). For those with religious commitments, their attitude to an assisted death is determined by the exegesis of their faith's holy books. If, however, a person is faithless, how do they personally, or the wider society as expressed in statute law, come to a decision on assisted dying and what secular guidance is available? In this essay, we consider assisted dying in the context of Hume's various writings on religion, suicide, his own death and his principle of 'utility', as a prism through which to offer a wider societal perspective on the moral and ethical issues involved. Our judgement is that, were Hume alive today, he would not only believe that an individual has the right to choose an assisted death, but that – in some limited circumstances – there may even be an obligation to do so. [ABSTRACT FROM AUTHOR]

Background: Limited information exists regarding the prevalence of bereavement care provision by general practitioners (GPs) and in what cases they provide this. Insights into the current practice of bereavement care provision by GPs can highlight areas for improvement of the bereavement care practice. Therefore, we examined in how many cases GPs contacted relatives regarding bereavement care, and which case-specific characteristics are associated. Methods: This study had a retrospective cross-sectional design and used data from a clustered sample of 52 GP-practices in the Netherlands. Patient cases were included if they were one year or older and died between January 1st, 2018 and December 31st, 2022. The main outcome was whether the GP had had contact with relatives regarding bereavement care or planned to do so. Descriptive statistics were used, as well as logistic regression analyses with generalized estimating equations. Results: Following 86.4% of deaths, GPs either had contact with or planned to have contact with relatives of their deceased patients regarding bereavement care. This likelihood was higher in non-sudden deaths compared to sudden deaths (odds ratio [OR] 1.60). In cases of non-sudden death, GPs were more likely to provide bereavement care if an informal caregiver was involved (OR 3.81), or if the GP was part of a palliative care at home group (PaTz) (OR 2.78). Conclusions: In the majority of cases GPs reach out to the relatives of their deceased patients to offer bereavement care. Given their familiarity with the deceased person, particularly instances of non-sudden death, the GP seems to be well-positioned to provide bereavement care, especially support that focuses on reviewing the period leading up to the death. [ABSTRACT FROM AUTHOR]

Background: Truth-telling in health care is about providing patients with accurate information about their diagnoses and prognoses to enable them to make decisions that can benefit their overall health. Physicians worldwide, especially in the United Kingdom (U.K.) and the United States (U.S.), openly share such medical information. Bangladesh, however, is a Muslim-majority society with different social norms than Western societies. Therefore, we examined whether Muslim culture supports truth disclosure for patients, particularly how and to what extent medical information about life-threatening diseases is provided to patients in Bangladesh. Methods: This was a phenomenological qualitative study. We conducted thirty in-depth interviews with clinicians, nurses, patients and their relatives at Shaheed Suhrawardy Medical College Hospital in Dhaka, Bangladesh. We also used observations to explore interactions between patients, families and healthcare professionals regarding their involvement in medical decisions and truth disclosure issues. NVivo software was used to identify common themes, and a thematic analysis method was utilised to analyse the datasets. Results: This study identified three recurring themes relevant to the ethics and practice of truth disclosure: best interest rather than autonomy, the ambivalent value of deception and who understands what. The participants revealed that physicians often withhold fatal medical prognoses from terminally ill patients to ensure the best healthcare outcomes. The results indicate that deception towards patients is commonly accepted as a means of reducing burden and providing comfort. The participants opined that true medical information should be withheld from some patients, assuming that such disclosures may create a severe burden on them. Whether or to what extent medical information is disclosed primarily depends on a family's wishes and preferences. Conclusions: While truth disclosure to patients is considered an ethical norm in many cultures, such as in the U.K. and the U.S., the practice of concealing or partially revealing severe medical prognoses to patients is an actual medical practice in Bangladeshi society. This study emphasises the importance of recognising a patient's active involvement and respecting the cultural values that shape family involvement in medical decision-making. These findings may have significant policy and practical implications for promoting patient autonomy within Bangladeshi family dynamics and religious-based cultural values. [ABSTRACT FROM AUTHOR]

AbstractHow we think and feel about death and dying affects how we live our lives and our opportunities for healthy aging. This scoping review, using the PRISMA guidelines and drawing on the World Health Organizations public health framework for healthy aging, examined the personal, health and environmental factors associated with attitudes toward death and dying in persons 50 years and older. Most of the 74 eligible studies focused only on negative attitudes to death and few studies investigated the comprehensive range of factors that influence attitudes to death and dying. In the context of population aging and the United Nations Decade of healthy aging (2021–2030) attention to death attitudes and the factors that influence them are imperative to enable current and future generations to age and die well. [ABSTRACT FROM AUTHOR]

Background: Experiential learning holds high potential for medical students' education in palliative care. At RWTH Aachen University in Germany, medical students can participate in the course "The Patient as Teacher" offering a one-to-one exchange with a terminally ill patient over a period of several weeks complemented with four supervision sessions and writing of a reflective essay. The course had run from 2005 to 2020 before it was paused due to the Covid-19 pandemic. This study aimed to assess the course's value as a palliative care teaching tool by investigating students' motivation and experiences over the years 2005–2020. Methods: A stratified sample of 24 essays was taken from all submitted essays (n = 78), eight essays from the years 2005–2009, 2010–2014, and 2015–2020. Subsequently, a thematic analysis of the selected essays was conducted. Results: The students felt motivated by the opportunity to gain more experience in palliative care, to improve their communication skills and to decrease insecurities in interaction with terminally ill patients. They learned about the patient's biography and medical history, and encountered physical, psychological, social, and spiritual dimensions of living with a life-limiting disease. Moreover, they experienced relationship building and communication with a terminally ill patient outside their role as future doctors. Ultimately, they considered their participation as a beneficial experience on both a personal and professional level. Conclusions: The course "The Patient as Teacher" presents a valuable tool for experiential learning in palliative care, which has elicited an unceasingly positive response among the students who participated over the years. It has facilitated medical students in overcoming insecurities in dealing with terminally ill patients and supported them in further developing their professional identity. [ABSTRACT FROM AUTHOR]

Background: The end-of-life experience is significantly influenced by the surrounding environment, emphasizing the importance of exploring built environmental factors in palliative care, especially for pediatric patients. As the majority of end-of-life individuals are elderly or adults, most studies have focused on the environment for this demographic. However, it is essential to recognize that children and adolescents may have distinct needs in this regard. Aim: This narrative review aims to explore the impact of the built environment on pediatric end-of-life patients in inpatient units within palliative care settings. Method: A comprehensive search was conducted across four key databases (PubMed, MEDLINE, PsycINFO, and CINAHL) to identify relevant articles. The screening process commenced with an initial assessment of article titles and abstracts, followed by a thorough examination of full-text studies that met the inclusion criteria. Data synthesis involved thematic analysis facilitated by NVIVO software and informed by the findings extracted from selected literature. Results: The review identified 22 studies meeting inclusion criteria, revealing key insights into environmental considerations in pediatric palliative care. Four themes emerged, highlighting the significance of activities and play environments, accommodation spaces for patients, supportive spaces for families, and outdoor and green spaces. Conclusions: Acknowledging limited research on architectural aspects and reliance on family and staff perspectives, future studies should prioritize understanding pediatric patients' perspectives, particularly adolescents. The study underscores the importance of enhancing environmental design in pediatric palliative care to meet the unique needs of patients and their families. [ABSTRACT FROM AUTHOR]

Background End-of-life periods are often characterised by suboptimal healthcare use (HCU) patterns in persons aged 65 years and older, with negative effects on health and quality of life. Understanding care trajectories (CTs) and transitions in this period can highlight potential areas of improvement, a subject yet only little studied. Objective To propose a typology of CTs, including care transitions, for older individuals in the 2 years preceding death. Design Retrospective cohort study. Methods We used multidimensional state sequence analysis and data from the Care Trajectories—Enriched Data (TorSaDE) cohort, a linkage between a Canadian health survey and Quebec health administrative data. Results In total, 2080 decedents were categorised into five CT groups. Group 1 demonstrated low HCU until the last few months, whilst group 2 showed low HCU over the first year, followed by a steady increase. A gradual increase over the 2 years was observed for groups 3 and 4, though more pronounced towards the end for group 3. A persistent high HCU was observed for group 5. Groups 2 and 4 had higher proportions of cancer diagnoses and palliative care, as opposed to comorbidities and dementia for groups 3 and 5. Overall, 68.4% of individuals died in a hospital, whilst 27% received palliative care there. Care transitions increased rapidly towards the end, most notably in the last 2 weeks. Conclusion This study provides an understanding of the variability of CTs in the last two years of life, including place of death, a critical step towards quality improvement. [ABSTRACT FROM AUTHOR]

OBJECTIVES Bridging from a temporary microaxial left ventricular assist device (tLVAD) to a durable left ventricular assist device (dLVAD) is playing an increasing role in the treatment of terminally ill patients with heart failure. Scant data exist about the best implant strategy. The goal of this study was to analyse differences in the dLVAD implant technique and effects on patient outcomes. METHODS Data from 341 patients (19 European centres) who underwent a bridge-to-bridge implant from tLVAD to dLVAD between January 2017 and October 2022 were retrospectively analysed. The outcomes of the different implant techniques with the patient on cardiopulmonary bypass, extracorporeal life support or tLVAD were compared. RESULTS A durable LVAD implant was performed employing cardiopulmonary bypass in 70% of cases (n  = 238, group 1), extracorporeal life support in 11% (n  = 38, group 2) and tLVAD in 19% (n  = 65, group 3). Baseline characteristics showed no significant differences in age (P  = 0.140), body mass index (P  = 0.388), creatinine level (P  = 0.659), the Model for End-Stage Liver Disease (MELD) score (P  = 0.190) and rate of dialysis (P  = 0.110). Group 3 had significantly fewer patients with preoperatively invasive ventilation and cardiopulmonary resuscitation before the tLVAD was implanted (P  = 0.009 and P  < 0.001 respectively). Concomitant procedures were performed more often in groups 1 and 2 compared to group 3 (24%, 37% and 5%, respectively, P  < 0.001). The 30-day mortality data showed significantly better survival after an inverse probability of treatment weighting in group 3, but the 1-year mortality showed no significant differences among the groups (P  = 0.012 and 0.581, respectively). Postoperative complications like the rate of right ventricular assist device (RVAD) implants or re-thoracotomy due to bleeding, postoperative respiratory failure and renal replacement therapy showed no significant differences among the groups. Freedom from the first adverse event like stroke, driveline infection or pump thrombosis during follow-up was not significantly different among the groups. Postoperative blood transfusions within 24 h were significantly higher in groups 1 and 2 compared to surgery on tLVAD support (P  < 0.001 and P  = 0.003, respectively). CONCLUSIONS In our analysis, the transition from tLVAD to dLVAD without further circulatory support did not show a difference in postoperative long-term survival, but a better 30-day survival was reported. The implant using only tLVAD showed a reduction in postoperative transfusion rates, without increasing the risk of postoperative stroke or pump thrombosis. In this small cohort study, our data support the hypothesis that a dLVAD implant on a tLVAD is a safe and feasible technique in selected patients. [ABSTRACT FROM AUTHOR]

(1) Background: Since the onset of the COVID-19 pandemic, it has been recognized that a considerable proportion of critically ill patients may die of this disease. The current study aims to assess the overall 1-year outcomes within the UMFST COVID-19 Unit, providing valuable insights into the efficacy of specialized care facilities in managing severe cases of COVID-19. (2) Methods: This is a retrospective monocentric observational study including 294 patients confirmed to have SARS-CoV-2 infection. Demographic data and clinical and paraclinical parameters were assessed. Survival probabilities were estimated using Kaplan–Meier curves. (3) Results: Overall, the 1-year mortality was 89.4%. All deaths occurred in-hospital, with two patients dying after 28 days. Diabetes mellitus, chronic kidney failure, cerebrovascular disease, and atrial fibrillation were more prevalent in deceased patients. Thirty percent of patients needed endotracheal intubation during the first 24 h. The incidence of hospital-acquired pneumonia was higher among deceased patients. The SOFA score was significantly different between deceased vs. survivors. The survival analysis showed that the use of noradrenaline increased the likelihood of surviving COVID-19. (4) Conclusions: The severe comorbidities of the patients were the primary factors contributing to the increased mortality rate in the COVID-19 unit. [ABSTRACT FROM AUTHOR]

Context: Pain and symptom management at the end of life (EoL) can pose unique challenges, particularly when symptoms are refractory to conventional methods. Dexmedetomidine, originally approved for sedation in ventilated patients, has been demonstrated to be beneficial in pain management and palliative care settings by functioning as an alpha-2 agonist. Methods: A retrospective review of inpatient palliative care unit (IPU) records from January 2020 to December 2023 was conducted. Twenty-five adult patients receiving continuous dexmedetomidine for refractory pain at the EoL were identified. These patients were further evaluated for concurrent opioid, benzodiazepine, and chlorpromazine usage. Results: Patients experienced predominantly cancer-related pain, and had a median infusion duration of 5 days. Dexmedetomidine's initial dosing differed between the intensive care unit (ICU) and IPU settings. There was a trend toward a decreased opioid requirement 24 hours after initiation. Patients transferred from the ICU showed a progressive increase in opioid use. Conclusion: This study contributes to understanding dexmedetomidine's role in managing refractory symptoms at the EoL in the palliative care setting. [ABSTRACT FROM AUTHOR]

This article explores the use of phosphorescent paint in both art and chemistry lessons. It highlights a project where 7th grade students created their own phosphorescent paint using zinc sulfide, which they then used to create artwork and learn about energy conversion and chemical reactions. The article also provides instructions for creating a phosphorescent plate and conducting experiments with the paint in the chemistry classroom. Additionally, the document discusses the use of a pen with a built-in LED ball for drawing with phosphorescent paint, as well as using different light sources to create drawings and shadow shapes. It concludes by emphasizing the educational benefits of incorporating phosphorescent materials in the classroom. [Extracted from the article]

The article discusses the KOALa student lab program, which aims to raise awareness about ocean acidification and promote responsible resource management. The program uses a mystery-based approach to engage students in scientific inquiry and includes a model experiment to explore the effects of burning fossil fuels on ocean chemistry. The article provides insights into the program's methodology, concept, and implementation, as well as initial findings from accompanying research. The goal is to provide practical suggestions for teachers to incorporate the topic of ocean acidification into their lessons using the mystery method and experiment-based ocean design proposals. The text also describes a model experiment that investigates the direct impact of combustion reactions in the atmosphere on ocean water and the resulting pH change. The experiment involves the use of beakers filled with water and a pH indicator, as well as the combustion of candles and the use of an aquarium pump. The results of the experiment demonstrate the decrease in pH and the color change of the solution, simulating the effects of increased carbon dioxide emissions on ocean acidification. The text also discusses the limitations of the model experiment and the importance of integrating visits to science laboratories into classroom instruction to promote student interest in STEM subjects. [Extracted from the article]

Persuasive testimonials are common in commercial, nonprofit, and public health contexts. They pose challenges to existing theories of narrative persuasion because they are typically both narrative and overtly persuasive. Prior research has suggested testimonials may be effective with counter-attitudinal recipients by decreasing negative affective responses and increasing meaningful affect. Often, however, testimonials may address behaviors that are anxiety provoking rather than counter-attitudinal; prior research provides little theoretical or empirical guidance concerning message influence in the face of such anxiety. An experiment comparing a testimonial versus a non-narrative message advocating end-of-life conversations found that the testimonial message increased behavioral intentions via meaningful affect and self-efficacy. The testimonial did not decrease anxiety, and there was no differential impact on high versus low anxiety recipients. The authors conclude that a eudaimonic testimonial may serve as a motivator of behavior regardless of anxiety concerning the message topic, as well as a means of increasing self-efficacy. [ABSTRACT FROM AUTHOR]

Aim: This systematic review aims to identify methodological and ethical challenges in designing and conducting research at the end of life from the perspective of researchers and provide a set of recommendations. Background: Conducting research with patients and family carers facing end‐of‐life issues is ethically and methodologically complex. Design: A systematic review was conducted. Data sources Four databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022. Review methods: The Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis. Results: Seventeen of 1983 studies met inclusion criteria. Data were distilled to six main themes. These included (1) the need for flexibility at all stages of the research process; (2) careful attention to timing; (3) sensitivity in approach; (4) the importance of stakeholder collaboration; (5) the need for unique researcher skills; and (6) the need to deal with the issue of missing data. Conclusion: The findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field. Summary statement: What is already known about this topic? Conducting research with patients and their relatives at the end of life brings many ethical and methodological issues.Healthcare providers are often protective and can limit researchers' access to patients.Recruitment of participants is often very difficult as response rates are usually low. What this paper adds? Engaging in research about end‐of‐life care requires flexibility, sensitivity and attention to ethical challenges, as well as adjustment to the organizational and legislative‐juridical contexts.Gatekeeping processes may be improved by involving stakeholders in all parts of a research project, and this also helps to maximize a project's implementation and sustainability after the end of the research.End‐of‐life research can be emotionally challenging for researchers, and this should be reflected in adequate training and emotional support. The implications of this paper: The results show that the Chinese version of the Self‐Care in Chronic Obstructive Pulmonary Disease Inventory is simple and accessible, and nurses can use it to assess patients' capacity for self‐care regularly.There is a paucity of literature on the methodological issues that are faced when conducting research in this area.Future training, education and support of researchers in palliative and end‐of‐life care should seek to address the challenges that are identified in this review.End‐of‐life research may be emotionally challenging for researchers, and this will also require consideration. [ABSTRACT FROM AUTHOR]

This document discusses a case before the European Court of Human Rights regarding the right to assisted suicide. The court examines the state's obligations and the applicant's interest in assisted suicide, ultimately concluding that the criminal prohibition on assisted suicide in Hungary is justified. The text also provides summaries of legal cases on assisted suicide in the UK, Germany, Italy, and Canada, highlighting different approaches and outcomes in these countries. [Extracted from the article]

Primary palliative care is a core component of nursing practice for which all students must receive formal education. Through competency-based education, nursing students develop the knowledge, attitudes, and skills to deliver quality primary palliative care before they transition to practice. Nurse educators in academic and practice settings should use reliable and valid means to evaluate student learning across cognitive, affective, and psychomotor domains. Expert faculty conducted a literature review to identify published instruments that evaluate primary palliative care student learning outcomes. Selected articles were required to include instrument reliability, validity, or both. The literature search yielded 20 articles that report on the development and testing of 21 instruments. Findings are organized into 3 learning domains that encompass 5 outcomes. Four instruments assess knowledge within the cognitive domain. In the affective domain, 3 instruments assess attitudes about caring for seriously ill or dying patients, 7 assess attitudes about death, and 5 assess self-efficacy. Competence and competency are evaluated in the psychomotor domain with 4 tools. Instrument implementation considerations within each domain are discussed. Faculty are encouraged to use robust evaluation measures such as those identified in the literature review to measure primary palliative care learning outcomes within a competency-based education framework. [ABSTRACT FROM AUTHOR]

Context: Modern medicine aims to ensure a world in which all people experience a good end of life as an integral part of their life journey. A good end-of-life experience means dying with dignity and receiving the best healthcare based on scientific evidence. Objective: This study aims to reach a consensus about the contents of a comprehensive instrument based on the 10/40 Model of the International Collaborative for the Best Care for the Dying Person for evaluating inpatients facing imminent death in Portuguese internal medicine wards and a proposal for anticipatory medication for symptom control in inpatient and home care settings. Methods: We employed the Delphi method and conducted various rounds of questionnaire administration to 23 Portuguese internists competent in palliative medicine. Data were obtained in July and September of 2022. Results: Consensus was reached among the expert panel on the diagnostic, initial assessment, monitoring, and after-death care items of the tool, with minor adjustments to wording or content. However, it was not possible to reach a consensus on most of the proposals presented for anticipatory medication for symptomatic control. Conclusion: We present the consensus about the contents of a comprehensive instrument for evaluating inpatients facing imminent death in Portuguese internal medicine wards. Best practices in this setting were defined from the point of view of internists with expertise in palliative care. However, the best pharmacological practices still require further reviews of the literature and consensus. [ABSTRACT FROM AUTHOR]

Background: Kidney failure at any age has a significant impact on quality of life (QoL) but the overall symptom burden for children and young people (CYP) is poorly described. Kidney failure has no cure and whilst transplantation is the preferred management option, it is not always possible, with patients requiring supportive care at the end of their lives. Aim: To use the literature to understand the symptom burden for CYP with kidney failure who are approaching end-of-life. Methods: Using three databases, a systematic literature review was performed to identify eligible studies to extract data on symptoms experienced in CYP aged < 21 years with kidney failure. Data extraction was completed by two authors using a pre-designed proforma. Study quality assessment was undertaken using the BMJ AXIS tool. Results: A total of 20,003 titles were screened to yielding 35 eligible studies including 2,862 CYP with chronic kidney disease (CKD), of whom 1,624 (57%) had CKD stage 5. The studies included a median of 30 (range 7–241) patients. Symptoms were subcategorised into eight groups: sleep, mental health, gastrointestinal, dermatology, ear, nose and throat (ENT), neurology, multiple symptoms, and ophthalmology. The prevalences of the most commonly reported symptoms were: restless leg syndrome 16.7–45%, sleep disordered breathing 20–46%, hypersomnia 14.3–60%, depression 12.5–67%, anxiety 5.3–34%, overall gastrointestinal symptoms 43–82.6%, nausea and vomiting 15.8–68.4%, abdominal pain 10.5–67.4%, altered appetite or anorexia 19–90%, xerosis 53.5–100%, pruritis 18.6–69%, headache 24–76.2% and ophthalmological symptoms 26%. Within each subgroup, the symptom definitions used were heterogeneous, the methods of assessment were varied and some symptoms, such as pain and constipation, were poorly represented. Conclusions: There is a marked lack of evidence relating to the symptom burden for CYP with CKD. This study highlights the high symptom prevalence, particularly in relation to sleep, mental health, headache, dermatological and gastrointestinal symptoms. There is a need for consensus recommendations on the evaluation and management of symptoms for CYP with CKD approaching end-of-life. PROSPERO ID: CRD42022346120. [ABSTRACT FROM AUTHOR]

Interview data from the Dy@EoL project reveal changes in parent–adult child communication in end-of-life situations (Gawinski et al., 2021). The present study investigated the presence of commonly known facilitating and inhibiting factors for relieving communication in interviews of dyads comprised of: (a) terminally ill adult children and their parents and (b) terminally ill parents and their adult children. Additionally, the research examined the extent to which participants experienced the dyadic communication as burdensome or relieving, and compared the experiences of dyad partners. Study participants were interviewed as part of the Dy@EoL project, using semistructured interviews. The interviews of 9 dyads and 14 dyads were analyzed using qualitative content analysis in MAXQDA. Both dyad partners took part. All facilitating factors and some inhibiting factors, as identified in the literature, were evident in the interviews. Some dyads reported the presence of facilitating factors prior to the end-of-life situation, while others began to employ them (or employed them more intensively) in the end-of-life situation. Dyads showed similar experiences of burden and relief, through communication. Both parties should be offered psychosocial support, even when a burden is reported on only one side. [ABSTRACT FROM AUTHOR]

Background: Navigating medical care at the end of life can be a challenging experience for patients. There are also significant resource burdens, including intensive care unit (ICU) admissions, accompanying terminal illness. For actively dying patients, developing a care plan based on patient goals and delivering care at the bedside can enhance patient well-being, avoid inappropriate transfers or interventions, and improve resource management. Methods: The Rapid Response Team (RRT) is an around the clock intensivist service that responds to all acutely decompensating patients in our hospital. Through the Appropriate Care Escalation (ACE) program, the RRT intensivist identifies amongst decompensating patients, terminally ill individuals for whom prognosis is extremely poor irrespective of available interventions. These patients receive discussions about goals of care, code status, and management options. They receive care on a dedicated stepdown unit without escalation to the ICU. If aligned with patient goals, care plans incorporate critical care interventions including ventilator and vasopressor therapy. Results: Over 5 years, RRT identified 413 terminally ill patients under the ACE program to continue end of life care on the stepdown unit. Following discussions of goals, 60.8% of patients requested DNR/DNI, 30.9% were full code, and 8.5% requested DNR/OK-TO-INTUBATE status. At discharge, 82.1% of ACE patients expired compared to 23% of all RRT consultations. Patients received 233 critical care procedures at bedside including intubations, central access catheters and bronchoscopy. Conclusion: The ACE program helped identify, in real time, actively dying, terminally ill patients, establish patient goals, and expand critical care services outside the ICU. [ABSTRACT FROM AUTHOR]

Objectives: Research considered patient outcomes primarily over caregivers in end-of-life care settings. The importance of family caregivers (FCs) in end-of-life care draws growing awareness, evidenced by an increasing number of evaluations of caregiver-targeted interventions. Little is known of FCs' collateral benefits in patient-oriented home-based end-of-life care. The study aims to investigate FC outcomes and change mechanisms in patient-oriented care. Methods: A pre-post-test study. We recruited FCs whose patients with a life expectancy ≤ 6 months enrolled in home-based end-of-life care provided by service organizations in Hong Kong. Patients' symptoms, dimensions of caregiving strain (ie, perception of caregiving, empathetic strain, adjustment demands), and aspects of FCs' wellbeing (ie, perceived health, positive mood, life satisfaction, spiritual well-being) were measured at baseline (T0) and 3 months later (T1). Results: Of the 345 FCs at T0, 113 provided T1 measures. Three months after the service commenced, FCs' caregiving strain significantly reduced, and their positive mood improved. Alleviation of the patient's physical symptoms predicted FC better outcomes, including the perception of caregiving, empathetic strain, and wellbeing. Changes in perception of caregiving mediated the effects of changes in patients' physical symptoms on FCs' changes in life satisfaction and spiritual wellbeing. Changes in empathetic strain mediated the changes between patient's physical symptoms and FCs' positive mood. Conclusions: Collateral benefits of patient-oriented home-based end-of-life care were encouraging for FCs. Patient's physical symptom management matters to FCs' caregiving strain and wellbeing. The active ingredients modifying FCs' perception of caregiving and addressing empathetic strain may amplify their benefits in wellbeing. [ABSTRACT FROM AUTHOR]

Summary Avascular necrosis (AVN) is a prevalent and progressive complication in young patients with sickle cell disease (SCD), but no study evaluated the long‐term subjective and objective outcome measures. Oxford hip score (OHS) and Oxford shoulder scores (OSS) are validated joint‐specific patient‐reported outcome measures (PROMs). In this prospective multicentre study, 47 SCD patients with pre‐existing diagnosis of AVN occurred at a median age of 35.9 (24.2–47.6) filled out the OHS and OSS at median follow‐up of 9.4 years (4.5–12.9). No patient died after diagnosis of AVN. Hip AVN was present in 34 (72%) patients, with bilateral involvement in 25 (74%); 26 (59%) underwent total hip arthroplasty (THA) at a median age of 34.6 (22.6–49.5); and 4 (15%) required re‐surgery. OHS revealed moderate to severe impairment both in patients underwent THA and no hip surgery. Shoulder AVN was present in 13 (6%) patients and OSS revealed mild to moderate impairment. A high rate of compromised joint function and pain was observed 10 years after diagnosis of AVN regardless of the type of treatment, outlying the need to improve the management of this sickle‐related complication. OHS and OSS are validated joint‐specific PROMs easy to use in all SCD centres. [ABSTRACT FROM AUTHOR]

Background: Symptoms of emotional and physical stress near death may be related to previous experiences of trauma. Objective: To investigate current evidence regarding the following: (1) Is previous trauma identified in people who are dying, and if so, how? (2) How is previous trauma associated with the experience of death/dying in people with or without cognitive impairment? and (3) What palliative care interventions are available to people with previous trauma at the end of life? Design: This integrative review was conducted per Whittemore and Knafl's guidelines, which involves a stepped approach, specifically (1) problem identification, (2) literature search, (3) data evaluation, (4) data analysis and (5) presentation. Methods: This integrative review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. Electronic databases were searched in August 2021 and updated in August 2023. The articles were quality appraised, and narrative data were analysed using Grounded Theory (GT). Results: Of 1310 studies screened, 11 met the inclusion criteria (four qualitative and seven quantitative) conducted in Australia, Canada, Japan and the United States; and American studies accounted for 7/11 studies. Eight were focused on war veterans. Descriptive studies accounted for the majority, with only two publications testing interventions. Re-living trauma near death has additional features to a diagnosis of post-traumatic stress disorder alone, such as physical symptoms of uncontrolled, unexplained acute pain and this distress was reported in the last weeks of life. Conclusion: This study proposes that re-living trauma near death is a recognisable phenomenon with physical and psychological impacts that can be ameliorated with improved clinical knowledge and appropriate management as a new GT. Further research is needed to enable past trauma identification at the end of life, and trauma-informed safe interventions at the end of life are an urgent need. [ABSTRACT FROM AUTHOR]

Objective: Aortoesophageal fistula (AEF) secondary to thoracic aortic endovascular repair (TEVAR) is rare and fatal. The author reports the treatment methods and outcomes of 10 patients with a TEVAR graft infection and an aortoesophageal fistula. Method: A retrospective analysis was conducted on the clinical data of 10 patients who developed a secondary AEF and a graft infection after TEVAR from March 2018 to March 2024. Result: The perioperative mortality rate was 70%. Two patients had TEVAR only and all died of bleeding and infection. Eight patients underwent open surgery, five died within 30 days, four of them died due to massive bleeding, the one patient died of a serious infection after surgery. Three patients recovered well and were discharged. One patient died of severe pneumonia 3 months after discharge, and two patients survived for 6 years and 3 months, respectively. Conclusion: Extra-anatomical bypass reconstruction is feasible for treating graft infection combined with aortoesophageal fistula after TEVAR but related to bad outcomes in most of the patients. It is reserved for highly select patients and is performed at centers with experience with this procedure. [ABSTRACT FROM AUTHOR]