Analysis on the willingness and influencing factors of choosing hospice care service institutions among among older people in Wuhu, China: a cross-sectional study.

OBJECTIVE: The purpose of this study was to evaluate the inclination and determinants influencing the selection of hospice care service institutions among elderly individuals in China. DESIGN: The study conducted has a cross-sectional design. SETTING: The study was conducted at four urban community centres in Wuhu, Anhui Province, China. PARTICIPANTS: The sample consisted of 642 older adults, with ages ranging from 60 to over (mean age=71.03 years, SD=7.18). METHOD: This study, based on the Anderson model, developed a questionnaire after conducting a preliminary survey and engaging in several group discussions. The final questionnaire encompassed the basic information, health status, attitude towards hospice care, choice of hospice care institutions and reasons of the older people. A regional population study was conducted using the Logistic regression model to estimate the ORs (OR) of influencing factors selected by hospice services. RESULTS: 38.5% of respondents expressed their willingness to receive hospice care, while 22.3% were unwilling and 39.3% felt ambivalent towards it. The acceptance rate of older people in hospice care increases with higher levels of education and monthly income. 47.0% of older people opted for hospice care in a general hospital ward, indicating that demand for hospice services among older people in Wuhu City is primarily focused on such wards. The univariate analysis revealed significant differences in the willingness of older individuals to accept hospice care services based on gender, age, educational attainment and income levels. Regardless of the location of hospice care, older men had a lower likelihood of being willing to use hospice services compared with older women. The proportion of older women choosing a hospice ward or general hospital was 53.8%, which was higher than that of older men at 42.0%. The proportion of older men choosing a community health service institution was 31.6%, higher than 23.3% of women. The educational level differences significantly influence the older people's inclination towards receiving hospice care. CONCLUSION: With the ageing population of Wuhu City on the rise, there is an increasing demand for hospice services. In their final journey, older individuals require multilevel hospice care services, which necessitates equipping general hospitals with hospice wards and using community health service centres to meet their specific needs.

Providing holistic end-of-life care for people with a history of problem substance use: a mixed methods cohort study of interdisciplinary service provision and integrated care.

Harmful use of illicit drugs and/or alcohol is linked to life-limiting illness and complex health and social care needs, but people who use substances and have complex needs do not receive timely palliative care and fail to achieve quality standards for a good death. They and their families often require support from multiple health and social care services which are shown to be poorly integrated and fail to deliver interdisciplinary care. This study aimed to identify the existing barriers and facilitators within and between services in providing this population with a good death. Using a mixed methods approach of survey, focus groups and semi-structured interviews, we explored the perspectives of practitioner and management staff across a range of health and social disciplines and organisations in one combined authority in a large city in the north west of England. Our findings indicate that practitioners want to provide better care for this client group, but face structural, organisational and professional boundary barriers to delivering integrated and shared care. Differences in philosophy of care, piecemeal commissioning and funding of services, and regulatory frameworks for different services, lead to poor and inequitable access to health and social care services. Ways forward for improving care are suggested as bespoke hostel-based accommodation for palliative care for this client group, and specialist link workers who can transcend professional and organisational boundaries to support co-ordination of services and support. We conclude that it is no longer adequate to call for more training, better communication and improved joint working. Complex care at the end of life requires creative and cohesive systemic responses that enable multi-disciplinary practitioners to provide the care they wish to give and enables individuals using substances to get the respect and quality service they deserve.

What helps or hinders effective end-of-life care in adult intensive care units in Middle Eastern countries? A systematic review.

BACKGROUND: As many patients are spending their last days in critical care units, it is essential that they receive appropriate end-of -life care. However, cultural differences, ethical dilemmas and preference practices can arise in the intensive care settings during the end of life. Limiting therapy for dying patients in intensive care is a new concept with no legal definition and therefore there may be confusion in interpreting the terms 'no resuscitation' and 'comfort care' among physicians in Middle East. Therefore, the research question is 'What helps or hinders effective end-of-life care in adult intensive care units in Middle Eastern countries?' METHODS: The authors conducted a comprehensive systematic literature review using five electronic databases. We identified primary studies from Medline, Embase, CINAHL, Psycinfo and Scopus. The team assessed the full-text papers included in the review for quality using the Joanna Briggs Institute checklist (JBI). We completed the literature search on the first of April 2022 and was not limited to a specific period. RESULTS: We identified and included nine relevant studies in the review. We identified five main themes as end-of-life care challenges and/or facilitators: organisational structure and management, (mis)understanding of end-of-life care, spirituality and religious practices for the dying, communication about end-of-life care, and the impact of the ICU environment. CONCLUSIONS: This review has reported challenges and facilitators to providing end-of-life care in ICU and made initial recommendations for improving practice. These are certainly not unique to the Middle East but can be found throughout the international literature. However, the cultural context of Middle East and North Africa countries gives these areas of practice special challenges and opportunities. Further observational research is recommended to confirm or modify the results of this review, and with a view to developing and evaluating comprehensive interventions to promote end-of-life care in ICUs in the Middle East.

Integrating Hospice and Palliative Medicine Education Within the American Board of Emergency Medicine Model.

Background: Hospice and palliative medicine (HPM) is a board-certified subspecialty within emergency medicine (EM), but prior studies have shown that EM residents do not receive sufficient training in HPM. Experts in HPM-EM created a consensus list of competencies for HPM training in EM residency. We evaluated how the HPM competencies integrate within the American Board of Emergency Medicine Milestones, which include the Model of the Clinical Practice of Emergency Medicine (EM Model) and the knowledge, skills, and abilities (KSA) list. Methods: Three emergency physicians independently mapped the HPM-EM competencies onto the 2019 EM Model items and the 2021 KSAs. Discrepancies were resolved by a fourth independent reviewer, and the final mapping was reviewed by all team members. Results: The EM Model included 78% (18/23) of the HPM competencies as a direct match, and we identified recommended areas for incorporating the other five. The KSAs included 43% (10/23). Most HPM competencies included in the KSAs mapped onto at least one level B (minimal necessary for competency) KSA. Three HPM competencies were not clearly included in the EM Model or in the KSAs (treating end-of-life symptoms, caring for the imminently dying, and caring for patients under hospice care). Conclusion: The majority of HPM-EM competencies are included in the current EM Model and KSAs and correspond to knowledge needed to be competent in EM. Programs relying on the EM Milestones to plan their curriculums may miss training in symptom management and care for patients at the end of life or who are on hospice.

Development and validation of the hospice professional coping scale among Chinese nurses.

BACKGROUND: Hospice care professionals often experience trauma patient deaths and multiple patient deaths in a short period of time (more so than other nurses). This repeated exposure to the death process and the death of patients leads to greater psychological pressure on hospice care professionals. But at present, people pay more attention to the feelings and care burden of the family members of dying patients but pay less attention to medical staff. Thus, this study aimed to develop a scale on the burden of care for hospice care providers and assess the coping capacity of hospice professionals. Raising awareness of the psychological burden of hospice professionals. METHODS: Through a literature review, research group discussion, Delphi method and a pre-survey of professional coping skills among nurses, 200 hospice professionals who had received training in hospice care from pilot institutions engaged in or providing hospice care were selected for investigation. Cronbach's α coefficient and split-half reliability were used to test the internal consistency of the scale, and content validity and explore factor analysis (EFA) were used to test the construct validity of the scale. RESULTS: Two rounds of Delphi methods were carried out, and the effective recovery rate was 100%. The expert authority coefficients of the two rounds were 0.838 and 0.833, respectively. The Kendall's W coefficient of experts in the first round was 0.121 ~ 0.200 (P < 0.05), and the Kendall's W coefficient of the second round was 0.115-0.136 (P < 0.05), indicating a good level of expert coordination. The final survey scale for the care burden of hospice professionals included four dimensions-working environment (9 items), professional roles (8 items), clinical nursing (9 items) and psychological burden (7 items)-with a total of 33 items. The total Cronbach's α coefficient of the scale was 0.963, and the Cronbach's α coefficients of the working environment, professional roles, clinical nursing and psychological burden dimensions were 0.920, 0.889, 0.936 and 0.910, respectively. The total split-half reliability of the scale was 0.927, and the split-half reliability of each dimension was 0.846, 0.817, 0.891, and 0.832. The content validity of the scale items ranged from 0.90 to 1.00. Exploratory factor analysis revealed 5 common factors, with a total cumulative contribution rate of 68.878%. The common degree of each item in the scale was > 0.4, and the factor loading of each item was also > 0.4. CONCLUSION: The scale is an open-access, short, easy-to-administer scale. And which for assessing hospice care burden among hospice professionals developed in this study demonstrated strong reliability and validity. This tool can serve as a dependable instrument for evaluating the burden of hospice care for terminally ill patients by professionals in the hospice setting.

An exploration of managing emotional labour and maintaining professional integrity in children's hospice nursing.

BACKGROUND: Research exploring nurse-parent relationships in children's hospices is rare. AIM: To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents. METHODS: A purposive sample of six children's nurses, from hospices across England, recorded audio diaries and participated in telephone interviews. Narratives were thematically analysed. FINDINGS: Three overarching, cross-cutting themes were identified-purposeful positioning; balancing personability and professionalism; coping with and counterbalancing emotional labour. All themes were indicative of and/or built upon emotional intelligence constructs, such as self-awareness, self-regulation, appropriate (managed) empathy, social skills and intrinsic motivation. Innate features of children's hospice work were important for perpetuating intrinsic motivation and satisfaction. CONCLUSION: This study provided an insight into the management of emotional labour and professional integrity by experienced children's hospice nurses. The identification of emotional intelligence skills merits further exploration in this environment, as well as other children's palliative care settings.

Bereavement Care Team: Improving ICU Nurses' Professional Bereavement and Patient Family Experience.

When nurses care for dying patients, their compassion fatigue may increase and lead to burnout and feelings of professional bereavement. However, if a nurse perceives that the patient had a "good death," it may have a positive impact on them and reduce their emotional distress. The purpose of this project is to reduce nurses' feelings of professional bereavement by implementing a Bereavement Care Team (BCT) in the intensive care unit (ICU). This study is a pre-post quasi-experimental design. The Chen and Chow bereavement subscales Factor 1 and Factor 2 measured elements of a nurse's professional bereavement, and 5 items were statistically significant. Nurses felt a reduction in their exhaustion, frustration, and feeling fatigue in their job, reduced feelings about being nervous and worried about potential professional/patient conflicts, and nurses were moved by the patient's family's understanding of the patient's death. Implementing a BCT in the ICU provided an environment that created a "good death" for the patient and their loved ones. These findings supported the need for the BCT as they demonstrated an improvement in the ICU nurses' feelings of professional bereavement.

Associations of Health Care Utilization and Therapeutic Alliance in Patients with Advanced Cancer.

Introduction: Therapeutic alliance (TA), or the extent to which patients feel a sense of caring and trust with their physician, may have an impact on health care utilization. We sought to determine if TA is associated with: (1) emergency department (ED) visits within 30 days of death and (2) hospice enrollment. Methods and Materials: This is a secondary analysis of data from a randomized clinical trial. We used restricted cubic splines to assess the relationship between TA scores and health care utilization. Results: Six hundred seventy-two patients were enrolled in the study, with 331 (49.3%) dying within 12 months. Patients with higher TA were less likely to have an ED visit in the last 30 days of life, but there was no evidence of a relationship between TA and enrollment in hospice. Conclusions: Higher TA was associated with decreased ED visits within 30 days of death. There was no association between TA and rates of hospice enrollment. Clinical Registration Number: NCT02712229.

'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. AIM: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. DESIGN: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. SETTING/PARTICIPANTS: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. RESULTS: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. CONCLUSION/DISCUSSION: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.

Adding spontaneity to organizations - what hospice volunteers contribute to everyday life in German inpatient hospice and palliative care units: a qualitative study.

BACKGROUND: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. AIM: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? METHODS: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. RESULTS: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". CONCLUSION: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices.

Investing in bereavement care as a public health priority.

Morbidity and mortality associated with bereavement is an important public health issue, yet economic and resource investments to effectively implement and sustain integrated bereavement services are sorely lacking at national and global levels. Although bereavement support is a component of palliative care provision, continuity of care for bereaved individuals is often not standard practice in palliative and end-of-life contexts. In addition to potentially provoking feelings of abandonment, failure to extend family-centred care after a patient's death can leave bereaved families without access to crucial psychosocial support and at risk for illnesses that exacerbate the already substantial public health toll of interpersonal loss. The effect of inadequate bereavement care disproportionately disadvantages vulnerable groups, including those living in resource-constrained settings. We build on available evidence and previous recommendations to propose a model for transitional care, firmly establishing bereavement care services within health-care institutions, while respecting their finite resources and the need to ultimately transition grieving families to supports within their communities. Key to the transitional bereavement care model is the bolstering of community-based supports through development of compassionate communities and upskilling of professional services for those with more substantial bereavement support needs. To achieve this goal, interprofessional health workers, institutions, and systems must shift bereavement care from an afterthought to a public health priority.

Trends and Changes in Intensive Care Use for Patients With Heart Failure in the Last Month of Life.

A good death is a human right. Unfortunately, patients with chronic heart failure (CHF) in the terminal stage still receive inappropriate life-sustaining treatment before death. There is limited understanding of the status of intensive care unit (ICU) admission, mechanical ventilation (MV), cardiopulmonary resuscitation (CPR), and even extracorporeal membrane oxygenation (ECMO) for patients with CHF before death, as well as their use of hospice-related services. This study investigated the trends and trend changes in intensive procedures and hospice-related services for patients with CHF in the last month of life. This population-based retrospective observational study included 25 375 patients with CHF from the National Health Insurance research database in Taiwan and collected information on their intensive treatments during the last month of life. We computed intensive treatment utilization rates and analyzed the trends and trend changes via joinpoint regression. The average percentage of patients with CHF admitted to ICUs was 53.27% (n = 13 516). A total of 327 (1.29%) patients with CHF received ECMO. The percentages of patients receiving MV (54.3%'41.5%) and CPR (41.5%'17%) decreased over time. Conversely, the percentage of ECMO use (0.52%'1.78%) increased. However, only 222 (0.87%) patients with CHF received hospice care in the last month of life between 2001 and 2013. The rates of ICU admission and life-sustaining treatment among patients with CHF in the month before death remain high, and hospice-related services remain inadequate. This study highlights the need for research and training in providing palliative and hospice care for patients with CHF.

When dying does not go well: a qualitative study.

BACKGROUND: Several studies deal with the question of what constitutes a "satisfactory death". A smaller number of studies deal with unsatisfactory dying processes. And only a few shed light on unsatisfactory deaths that take place in hospices and palliative care units, which see themselves as places conducive to a "good" death. What also remains largely undiscussed are the ethical aspects that accompany the observation of an unsatisfactory course of death. METHOD: The research was carried out as an exploratory and qualitative study. The data collection and analysis were based on the methods of the "grounded theory". RESULTS: Notions of a bad death are articulated here, though hardly by the affected persons and their relatives themselves, but rather by the professionals. Principally, descriptions of unsatisfactory dying processes refer to deficient success in symptom control, whereby the principle of autonomy is of particular importance. The focus here is not only on the needs of patients, but also on the needs of staff. The manifestation of such notions is related to the requirements arising from a practice that apparently evokes a need for accountability in the form of communicative reassurance. CONCLUSION: An idealised definition of "dying well" is in danger of losing sight of the contextual specifics of the practice involved, which can lead to ethically problematic situations.

[Empirically derived recommendations for the development and expansion of day hospices in Germany - Results of a Delphi expert panel]. / Empirisch abgeleitete Empfehlungen für den Auf- und Ausbau von Tageshospizen in Deutschland ­ Ergebnisse einer Delphi-Befragung mit Expert:innen.

INTRODUCTION: A needs-based and patient-oriented hospice and palliative care also includes day hospices as a specialised semi-inpatient care offer. The establishment and development of these facilities in Germany has been rather unsystematic. In order to ensure quality and adequacy of these structures, research is needed. METHODS: A Delphi consensus study was conducted online from November 2022 to February 2023 aiming at generating recommendations for the development and expansion of day hospices in Germany. For each recommendation, the participants indicated on a four-point verbal rating scale how much they agreed upon a) the relevance and b) the feasibility of the recommendation. Items were considered consented when 80% of the participants (strongly) agreed with the recommendation regarding both criteria. If no consensus was reached, the recommendations were revised according to the participants' free text comments and presented in the next Delphi round. Descriptive analyses were applied. RESULTS: A total of 64 experts participated in the first Delphi round and 44 in the second. In round 1, 34 recommendations and in round 2 six recommendations were consented. The final set contains a total of 40 recommendations: 18 on the tasks of day hospices, 13 on cooperation, 7 on funding, and 2 on public relations. DISCUSSION: Recommendations for the development and expansion of day hospices in Germany were developed. Due to their highly rated feasibility, the recommendations should be directly transferable into care practice. It remains to be seen to what extent they will be taken into account in the renegotiation of the framework agreement for day hospices. CONCLUSION: The Delphi-consented recommendations provide a basis to guide action in the currently very dynamic development of hospice work and palliative care in Germany.

Disparities in end-of-life care for racial minorities: a narrative review.

BACKGROUND AND OBJECTIVE: The issue of racial and ethnic disparities in healthcare has been a significant concern for many years. It encompasses various aspects, including disease prevention, diagnosis, management, and end-of-life (EOL) care. Research has found that timely intervention with palliative care can result in better EOL care and reduced healthcare costs. This review aims to detail the role of healthcare disparities impacting palliative care, hospice enrollment, and EOL care in patients with serious illnesses who are facing EOL. It addresses the factors that play a role in creating these disparities and describes specific interventions that may reduce disparities in the provision of EOL care. METHODS: Authors searched, PubMed Central, Medline, and PubMed databases using Racial Disparity and End-of-Life/Palliative Care combinations. A total of 57 studies were identified. All articles were reviewed, and the available evidence was synthesized and to identify key domains in EOL care impacted by racial disparities and the factors contributing to them. KEY CONTENT AND FINDINGS: Several patient, provider, and institutional level factors may be responsible for disparities seen in EOL care, including health literacy, access to care, mistrust of the healthcare system, social determinants of health (SDH), medical racism, cultural and religious customs, and communication at EOL. Disparities in EOL care experienced by minority patients is an extension of the systemic and institutionalized racism rampant in the healthcare system. Providers must work on multiple fronts to address this inequity and injustice, the first of which is recognition and conversation regarding disparities in EOL care. CONCLUSIONS: Disparities in communication, palliative and hospice care utilization, and symptom management must be eradicated. Palliative care and hospice should be made accessible for all patients and families experiencing severe illness regardless of their racial or ethnic background.

Prevalence and characteristics of patients prescribed opioids and central nervous system depression agents on discharge to hospice care.

BACKGROUND: Hospice patients with end-stage liver disease (ESLD) have an increased risk of adverse drug events due to physiological changes and changes in pharmacokinetic and pharmacodynamic properties of medications; however, the use of opioid and central nervous system (CNS) depressant prescribing among patients with ESLD is prevalent. This study quantified the frequency and distribution of opioid and concomitant respiratory and CNS depressant prescribing among hospice patients with ESLD compared to other common hospice diagnoses of cancer, chronic obstructive pulmonary disorder (COPD), heart failure, and end-stage renal disease. METHODS: This was a cross-sectional study of adult (age 18 years or older) decedents of a large hospice chain. Patients included had a primary diagnosis of liver, cancer, cardiovascular, or respiratory disease. RESULTS: Among 119,424 hospice decedents, mean age of 77.9 years (standard deviation =13.5 years), 54.6% were female, and 58.9% were of a non-Hispanic white race. There was a similar frequency of prescribing a "scheduled" and "as needed [pro re nata (PRN)]" opioid or benzodiazepine in patients with ESLD compared to other common hospice diagnoses. In addition, there was a high prevalence of concurrent opioid and benzodiazepine prescriptions among patients with ESLD compared to cardiovascular and respiratory disease at admission (65.4% vs. 63.9% and 64.9%). Opioid requirements, oral morphine equivalent (OME) median [interquartile range (IQR)] at discharge were similar between cancer, liver, and respiratory disease, 120 OME [60-300], 120 OME [50-240], and 120 OME [50-240], respectively. CONCLUSIONS: We observed a high frequency of opioid and CNS depressant prescribing in a hospice patient population with ESLD which was similar to other common admitting hospice diagnoses.

Embodied decisions unfolding over time: a meta-ethnography systematic review of people with cancer's reasons for delaying or declining end-of-life care.

BACKGROUND: Barriers to accessing hospice and palliative care have been well studied. An important yet less researched area is why people approaching the end-of-life decline a referral when they are offered services. This review focused on synthesising literature on patients in the last months of life due to a cancer diagnosis who have declined a referral to end-of-life care. METHODS: Six academic databases were systematically searched for qualitative literature published between 2007 and 2021. Two researchers independently reviewed and critically appraised the studies. Using meta-ethnographic methods of translation and synthesis, we set out to identify and develop a new overarching model of the reasons patients decline end-of-life care and the factors contributing to this decision. RESULTS: The search yielded 2060 articles, and nine articles were identified that met the review inclusion criteria. The included studies can be reconceptualised with the key concept of 'embodied decisions unfolding over time'. It emphasises the iterative, dynamic, situational, contextual and relational nature of decisions about end-of-life care that are grounded in people's physical experiences. The primary influences on how that decision unfolded for patients were (1) the communication they received about end-of-life care; (2) uncertainty around their prognosis, and (3) the evolving situations in which the patient and family found themselves. Our review identified contextual, person and medical factors that helped to shape the decision-making process. CONCLUSIONS: Decisions about when (and for some, whether at all) to accept end-of-life care are made in a complex system with preferences shifting over time, in relation to the embodied experience of life-limiting cancer. Time is central to patients' end-of-life care decision-making, in particular estimating how much time one has left and patients' embodied knowing about when the right time for end-of-life care is. The multiple and intersecting domains of health that inform decision-making, namely physical, mental, social, and existential/spiritual as well as emotions/affect need further exploration. The integration of palliative care across the cancer care trajectory and earlier introduction of end-of-life care highlight the importance of these findings for improving access whilst recognising that accessing end-of-life care will not be desired by all patients.

Effects of hospice-shared care on terminal cancer patients in Taiwan: A hospital-based observational study.

PURPOSE: To assess how hospice-shared care (HSC) affected the likelihood of aggressive medical treatments and the life quality among terminal cancer patients. METHODS: In the first part, a cohort of 160 late-stage cancer patients who died in non-hospice wards were identified to review their charts in their last 22 days before death. In the second part, a total of 19 late-stage cancer patients with clear consciousness admitted to non-hospice wards were identified to investigate their quality of life for the final 2 weeks before death. RESULTS: The utilization rate of HSC was 55.6%. Among these, the rate for late referral to HSC (≤7 days before death) was 43.8% and early referral (>3 months before death) was 5.6%. Compared to the non-HSC group, in the last few weeks of life, the HSC group underwent lower incidence of chemotherapy use (10.1% vs. 39.4%, p < .001), signed do-not-resuscitate orders (0% vs. 21.1%, p < .001), emergency room visits (13.5% vs. 40.8%, p < .001), intensive care unit admission or ventilator use (2.2% vs. 11.3%, p = .019), and endotracheal intubation (2.2% vs. 9.9%, p = .038). However, the quality of life did not appear to have obvious differences between the two groups (p > .05). CONCLUSION: In Taiwan, late HSC referral in terminal cancer patients is common. HSC is associated with a reduced likelihood of aggressive medical utilization. However, the effect of HSC in improving patients' quality of life in the last few weeks needs to be further evaluated.

'People don't realise how much their past experiences affect them in adulthood': A qualitative study of adult siblings' experiences of growing-up with a sister/brother with a childhood life-limiting condition and their perceived support needs.

BACKGROUND: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. AIM: To explore adult siblings' perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. DESIGN: A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. SETTING/PARTICIPANTS: Twenty-two siblings (17-42 years old) were recruited via a children's hospice in England. RESULTS: The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling's mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. CONCLUSIONS: Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships.