National- and State-Level Trends in Medicare Hospice Beneficiaries for Stroke During 2013 to 2019 in the United States.

BACKGROUND: Stroke is the fifth leading cause of death in the United States, one of the leading contributors to Medicare cost, including through Medicare hospice benefits, and the rate of stroke mortality has been increasing since 2013. We hypothesized that hospice utilization among Medicare beneficiaries with stroke has increased over time and that the increase is associated with trends in stroke death rate. METHODS: Using Medicare Part A claims data and Centers for Disease Control mortality data at a national and state level from 2013 to 2019, we report the proportion and count of Medicare hospice beneficiaries with stroke as well as the stroke death rate (per 100 000) in Medicare-eligible individuals aged ≥65 years. RESULTS: From 2013 to 2019, the number of Medicare hospice beneficiaries with stroke as their primary diagnosis increased 104.1% from 78 812 to 160 884. The number of stroke deaths in the United States in individuals aged ≥65 years also increased from 109 602 in 2013 to 129 193 in 2019 (17.9% increase). In 2013, stroke was the sixth most common primary diagnosis for Medicare hospice, while in 2019 it was the third most common, surpassed only by cancer and dementia. The correlation between the change from 2013 to 2019 in state-level Medicare hospice for stroke and stroke death rate for Medicare-eligible adults was significant (Spearman ρ=0.5; P<0.001). In a mixed-effects model, the variance in the state-level proportion of Medicare hospice for stroke explained by the state-level stroke death rate was 48.2%. CONCLUSIONS: From 2013 to 2019, the number of Medicare hospice beneficiaries with a primary diagnosis of stroke more than doubled and stroke jumped from the sixth most common indication for hospice to the third most common. While increases in stroke mortality in the Medicare-eligible population accounts for some of the increase of Medicare hospice beneficiaries, over half the variance remains unexplained and requires additional research.

The multinomial mixed-effect regression model for predicting PCOC phases in hospice patients.

PURPOSE: The Palliative Care Outcomes Collaboration (PCOC) aims to enhance patient outcomes systematically. However, identifying crucial items and accurately determining PCOC phases remain challenging. This study aims to identify essential PCOC data items and construct a prediction model to accurately classify PCOC phases in terminal patients. METHODS: A retrospective cohort study assessed PCOC data items across four PCOC phases: stable, unstable, deteriorating, and terminal. From July 2020 to March 2023, terminal patients were enrolled. A multinomial mixed-effect regression model was used for the analysis of multivariate PCOC repeated measurement data. RESULTS: The dataset comprised 1933 terminally ill patients from 4 different hospice service settings. A total of 13,219 phases of care were analyzed. There were significant differences in the symptom assessment scale, palliative care problem severity score, Australia-modified Karnofsky performance status, and resource utilization groups-activities of daily living among the four PCOC phases of care. Clinical needs, including pain and other symptoms, declined from unstable to terminal phases, while psychological/spiritual and functional status for bed mobility, eating, and transfers increased. A robust prediction model achieved areas under the curves (AUCs) of 0.94, 0.94, 0.920, and 0.96 for stable, unstable, deteriorating, and terminal phases, respectively. CONCLUSIONS: Critical PCOC items distinguishing between PCOC phases were identified, enabling the development of an accurate prediction model. This model enhances hospice care quality by facilitating timely interventions and adjustments based on patients' PCOC phases.

Associations between palliative-care consultations and end-of-life quality in cancer patients' last 6 months.

PURPOSE: Improving end-of-life (EOL) quality for terminally ill cancer patients is crucial. However, associations between hospice/palliative care and EOL quality, as perceived by patients, are underreported. We aimed to examine the impact of palliative care consultative services on the EOL quality during cancer patients' last six months. METHODS: In this prospective, longitudinal study, 174 cancer patients were divided into a palliative care consultative services group (n = 65) or a non palliative care consultative services group (n = 109). The impact of palliative care consultative services on EOL quality, assessed using the Quality of Dying and Death (QODD) scale at the first and last assessments within the patients' last six months, was analyzed by linear regression with generalized estimating equations, adjusting for covariates. RESULTS: Cancer patients received palliative care consultative services a median of 34.0 days before death. There were significant main effects of groups, indicating that patients receiving palliative care consultative services had better QODD total scores (ß [95% confidence interval] = 2.12 [0.32,3.93], p = .021), death preparation (3.80 [1.71,5.89], p < .001), and treatment preferences than the reference group (3.27 [0.90,5.64], p = .007). No group differences were found in other dimensions, including symptom and personal care, whole person concern, and time with family. CONCLUSION: Palliative care consultative services significantly improved cancer patients' perceptions of death preparation, treatment preferences, and the QODD total score. Therefore, healthcare professionals should offer palliative care consultative services to cancer patients, initiate early referrals for such care, and implement effective and individualized interventions to enhance EOL quality.

Prescribing and deprescribing in older people with life-limiting illnesses receiving hospice care at the end of life: A longitudinal, retrospective cohort study.

BACKGROUND: Although prescribing and deprescribing practices in older people have been the subject of much research generally, there are limited data in older people at the end of life. This highlights the need for research to determine prescribing and deprescribing patterns, as a first step to facilitate guideline development for medicines optimisation in this vulnerable population. AIMS: To examine prescribing and deprescribing patterns in older people at the end of life and to determine the prevalence of potentially inappropriate medication use. DESIGN: A longitudinal, retrospective cohort study where medical records of eligible participants were reviewed, and data extracted. Medication appropriateness was assessed using two sets of consensus-based criteria; the STOPPFrail criteria and criteria developed by Morin et al. SETTING/PARTICIPANTS: Decedents aged 65 years and older admitted continuously for at least 14 days before death to three inpatient hospice units across Northern Ireland, who died between 1st January and 31st December 2018, and who had a known diagnosis, known cause of death and prescription data. Unexpected/sudden deaths were excluded. RESULTS: Polypharmacy was reported to be continued until death in 96.2% of 106 decedents (mean age of 75.6 years). Most patients received at least one potentially inappropriate medication at the end of life according to the STOPPFrail and the criteria developed by Morin et al. (57.5 and 69.8% respectively). Limited prevalence of proactive deprescribing interventions was observed. CONCLUSIONS: In the absence of systematic rationalisation of drug treatments, a substantial proportion of older patients continued to receive potentially inappropriate medication until death.

How do people in prison access palliative care? A scoping review of models of palliative care delivery for people in prison in high-income countries.

BACKGROUND: An ageing prison population with complex health needs combined with punitive sentencing practices means palliative care for incarcerated individuals is increasingly important. However, there is limited evidence regarding the models of care delivery in high-income countries, and their associated challenges and benefits. AIM: To develop a typology of models of palliative care provision for incarcerated individuals, synthesise evidence of their outcomes and describe facilitators of and challenges in delivering different models of palliative and end-of-life care in prisons. DESIGN: Scoping review following Arksey and O'Malley, with narrative synthesis. The protocol was registered prospectively (reviewregistry1260). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO, the Social Sciences Citation Index and grey literature were searched on 15th March 2023. The Mixed Methods Appraisal Tool (MMAT) was used for quality appraisal. RESULTS: A total of 16,865 records were screened; 22 peer-reviewed articles and 18 grey literature sources met the inclusion criteria. Three models were identified: Embedded Hospice, Outsourcing Care and Community Collaboration. The Embedded Hospice model shows potential benefits for patients and prisons. Outsourcing Care may miss opportunities for comprehensive care. Collaborative Care relies on proactive prison-community relationships that could be formalised for improvement. Psychosocial and bereavement needs of those dying in prison and their caregivers lack sufficient documentation. CONCLUSION: Further research is needed to evaluate prison hospice costs and examine how prison hospices impact compassionate release usage. Beyond the USA, policies might formalise care pathways and recognise best practices. Further investigation to address psychosocial needs of people in prison with life-limiting illnesses and post-death bereavement support is required.

'So being here is. . . I feel like I'm being a social worker again, at the hospice': Using interpretative phenomenological analysis to explore social workers' experiences of hospice work.

BACKGROUND: Social workers have a significant role in hospices working with clients who are facing death but there is limited detailed understanding of the emotional impact of this work on social workers. Research has highlighted that those involved in hospice work find the work both a struggle (e.g. because of heightened emotions) and rewarding (noting that end-of-life care can feel like a privilege). AIM: To explore UK hospice social workers' emotional experiences of work and how this influences their practice. DESIGN: Semi-structured interviews were conducted with hospice social workers. Interviews were transcribed and transcripts were analysed using Interpretative Phenomenological Analysis. SETTING/PARTICIPANTS: Eight social workers from different hospices in the UK. RESULTS: Five overlapping superordinate themes emerged: making a difference to clients and families ('the difference made'), the emotional impact of working in hospices ('dealing with people's emotions, and death, and dying, it's serious stuff'), the relational context of this type of work ('awareness of affinity to connect'), the ways in which coping is facilitated in hospices ('seen it coming') and a foundation theme, connection and disconnection to values ('(dis)connection to values'). CONCLUSIONS: The results offer an exploration of social workers' experiences of their work in hospices; how adept they were at coping and how they prepared for and made sense of the often emotionally-laden experiences encountered. Their experience of the rewards and meaning derived from their work offers important findings for clinical practice. Further research is suggested to explore a multitude of healthcare professionals' perspectives across country settings using Interpretative Phenomenological Analysis.

Multidisciplinary Lessons from Palliative Extubations at Home.

Most patients with serious illness prefer to die at home, but for those requiring ongoing ventilatory support, this preference is often not honored due to the difficulties of arranging a palliative extubation at home. Here we present two cases of successful home palliative extubations, coordinated by a multidisciplinary team including critical care, palliative care, care management, hospice, and Emergency Medical Services (EMS) clinicians. By exploring the operational and regulatory challenges accompanying these cases, we provide a road map for offering mechanically ventilated patients the choice of a death at home and provide truly holistic and patient-centered care.

Quality outcomes for end-of-life care among people with haematological malignancies at a New Zealand cancer centre.

BACKGROUND: Little is known about the end-of-life (EOL) experience and specialist palliative care use patterns of patients with haematological malignancies (HMs) in New Zealand. AIMS: This retrospective analysis sought to examine the quality of EOL care received by people with HMs under the care of Auckland District Health Board Cancer Centre's haematology service and compare it to international data where available. METHODS: One hundred consecutive adult patients with HMs who died on or before 31 December 2019 were identified. We collected information on EOL care quality indicators, including anticancer treatment use and acute healthcare utilisation in the last 30 days of life, place of death and rate and timing of specialist palliative care input. RESULTS: During the final 14 and 30 days of life, 15% and 27% of the patients received anticancer therapy respectively. Within 30 days of death, 22% had multiple hospitalisations and 25% had an intensive care unit admission. Death occurred in an acute setting for 42% of the patients. Prior contact with hospital and/or community (hospice) specialist palliative care service was noted in 80% of the patients, and 67% had a history of hospice enrolment. Among them, 15% and 28% started their enrolment in their last 3 and 7 days of life respectively. CONCLUSIONS: The findings highlight the intensity of acute healthcare utilisation at the EOL and high rates of death in the acute setting in this population. The rate of specialist palliative care access was relatively high when compared with international experiences, with relatively fewer late referrals.

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.

Development, validation and reliability testing of the hospice care environment scale.

BACKGROUND: WHO stated the environment is an important factor affecting the development of hospice care. The environment is the sum of factors affecting behavior besides the individual factors. Currently, a scale to comprehensively assess the hospice environment of nurse is still lacking. This study aimed to develop an instrument to investigate the environmental factors affecting hospice care of nurses. METHODS: Literature review and a semi-structured interview were conducted to form the items pool of the Hospice Care Environment Scale. Two rounds of Delphi expert consultation were conducted by 16 experts to revise the scale dimensions and entries to form the Hospice Care Environment Scale. A psychometric evaluation was then performed among 530 oncology nurses in a large tertiary oncology hospital in Hubei Province. The 500 valid questionnaires were randomly divided into two groups in a 1:1 ratio, sample 1 (n1 = 250) for item screening and sample 2 (n2 = 250) for quality evaluation of the resulting scale. Item analysis, reliability analysis, validity analysis and acceptability analysis were performed. RESULT: The Hospice Care Environment Scale consists of two dimensions and 13 entries. The Cronbach's α coefficient of the Hospice Care Environment Scale was 0.970, and the Cronbach's α coefficient of the two dimensions were 0.952 and 0.969, respectively, with the Item-content validity index and average Scale- content validity index of the scale was both 1.000. The validation factor analysis showed the standardized path coefficients of each item were basically above 0.5, and the factor structure model was stable and suitable. The average completion time of the scale was about 3 min, which had good feasibility. CONCLUSION: The Hospice Care Environment Scale to assess the environment of hospice care services, has good content and construct validity and reliability. This scale can provide guidance to evaluate the hospice care environment.

Behaviors and influencing factors of Chinese oncology nurses towards hospice care: a cross-sectional study based on social cognitive theory in 2022.

BACKGROUND: Although there is growing demand for hospice care in China due to its aging population and increasing cancer rates, the sector remains slow to expand. Oncology nurses are the primary providers of hospice care, but little is known about their behaviors towards hospice care and related factors. METHODS: This cross-sectional study conveniently sampled 933 oncology nurses from six grade A tertiary hospitals in Hubei Province between January to March 2022. The questionnaire was composed of seven parts: general information (including sociodemographic and work-related information), hospice care behaviors, hospice care knowledge, hospice care attitudes, hospice care self-efficacy, hospice care outcome expectancy, and hospice care environment. Data were analyzed using descriptive analysis, independent sample t-tests, one-way ANOVA, Pearson's correlation, multiple linear regression, random forest regression, and BP neural network model analysis. RESULTS: A total of 852 questionnaires were valid. The mean score of hospice care behaviors was 50.47 ± 10.56, with a mean item score of 3.61 ± 0.75. The three highest scoring behaviors were "pain assessment of patients (4.21 ± 0.91)", "satisfying the physical and mental needs of dying patients (4.04 ± 0.92)", and "creating good relationships between the medical staff and family members (4.02 ± 0.87)". The two lowest-scoring behaviors were "proactively recommending medical institutions for hospice care to terminally ill patients and their families (2.55 ± 1.10)" and "proactively talking to patients and families about death-related topics for patients who are critically ill and cannot be reversed (2.87 ± 1.03)." Multiple linear regression, random forest regression, and BP neural network models all showed that the frequency of sharing hospice care experiences with colleagues, hospice care attitudes, hospice care self-efficacy, and hospice care environments were positively associated with hospice care behaviors. CONCLUSIONS: The frequency of hospice care behaviors among Chinese oncology nurses is generally at a moderate to high level. The results provide a basis for promoting hospice care behaviors among oncology nurses in order to improve the quality of life for terminally ill cancer patients.

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.

Analyzing innovative policies and practices for palliative care in Portugal: a qualitative study.

BACKGROUND: Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. METHODS: We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. RESULTS: Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals' lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks' response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. CONCLUSIONS: Health care professionals aim to increase patients' time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term.

Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.

BACKGROUND: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. METHODS: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. DISCUSSION: Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. TRIAL REGISTRATION: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.

Small Steps, Big Vision: using multi-stage qualitative research to develop a grab-and-go guide to support utilisation of the Ambitions for Palliative and End of Life Care framework.

BACKGROUND: The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. METHODS: A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer. RESULTS: A practical resource to support service provision and development was produced; a grab-and-go guide called "Small Steps, Big Visions". It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a 'what' (definition), 'ask' (prompt questions), and 'examples in action' (drawn from case studies). CONCLUSIONS: Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key.

Advancing screening tool for hospice needs and end-of-life decision-making process in the emergency department.

BACKGROUND: Predicting mortality in the emergency department (ED) is imperative to guide palliative care and end-of-life decisions. However, the clinical usefulness of utilizing the existing screening tools still leaves something to be desired. METHODS: We advanced the screening tool with the A-qCPR (Age, qSOFA (quick sepsis-related organ failure assessment), cancer, Performance Status Scale, and DNR (Do-Not-Resuscitate) risk score model for predicting one-year mortality in the emergency department of Taipei City Hospital of Taiwan with the potential of hospice need and evaluated its performance compared with the existing screening model. We adopted a large retrospective cohort in conjunction with in-time (the trained and the holdout validation cohort) for the development of the A-qCPR model and out-of-time validation sample for external validation and model robustness to variation with the calendar year. RESULTS: A total of 10,474 patients were enrolled in the training cohort and 33,182 patients for external validation. Significant risk scores included age (0.05 per year), qSOFA ≥ 2 (4), Cancer (5), Eastern Cooperative Oncology Group (ECOG) Performance Status score ≥ 2 (2), and DNR status (2). One-year mortality rates were 13.6% for low (score ≦ 3 points), 29.9% for medium (3 < Score ≦ 9 points), and 47.1% for high categories (Score > 9 points). The AUROC curve for the in-time validation sample was 0.76 (0.74-0.78). However, the corresponding figure was slightly shrunk to 0.69 (0.69-0.70) based on out-of-time validation. The accuracy with our newly developed A-qCPR model was better than those existing tools including 0.57 (0.56-0.57) by using SQ (surprise question), 0.54 (0.54-0.54) by using qSOFA, and 0.59 (0.59-0.59) by using ECOG performance status score. Applying the A-qCPR model to emergency departments since 2017 has led to a year-on-year increase in the proportion of patients or their families signing DNR documents, which had not been affected by the COVID-19 pandemic. CONCLUSIONS: The A-qCPR model is not only effective in predicting one-year mortality but also in identifying hospice needs. Advancing the screening tool that has been widely used for hospice in various scenarios is particularly helpful for facilitating the end-of-life decision-making process in the ED.

Caregiver experiences of hospice dementia care: a systematic review and meta-ethnography.

OBJECTIVES: Hospices are regarded as gold standard providers of end-of-life care. The term hospice, however, is broadly used, and can describe a type of care offered in a variety of health care services (e.g. nursing homes). It thus becomes complex for families to decide between services. We aimed to review the evidence around the experience of family carers of people with dementia accessing in-patient hospice settings for end-of-life care. METHOD: We registered the review protocol on PROSPERO. We used PerSPE(C)TiF to systematically organise our search strategy. The evidence was reviewed across six databases: PubMed, EMBASE, PsycINFO, ASSIA, ISI Web, and CINAHL. We used meta-ethnography as per the eMERGe guidance for data interpretation. RESULTS: Four studies were included. Two third-order constructs were generated through meta-ethnography: expectations of care and barriers to quality of care. We found that carers had expectations of care, and these could change over time. If discussion was not held with hospice staff early on, the carers could experience reduced care quality due to unmatched expectations. Unmatched expectations acted as barriers to care and these were found in terms of carers not feeling adequately supported, and/or having the person discharged from hospice, which would entail increased care responsibility for carers. CONCLUSION: In view of an increase in new dementia cases over time and with hospice services being under pressure, integrating palliative care services within community-based models of care is key to reducing the risk of having inadequate and under resourced services for people with dementia.

The expectations of metastatic cancer patients regarding palliative chemotherapy: A Brazilian-German qualitative study.

OBJECTIVE: To explore the expectations of Brazilian and German patients regarding metastatic cancer and palliative chemotherapy. METHODS: Interviews with 48 metastatic cancer patients from Brazil and Germany were conducted. The interviews were transcribed and analyzed using the thematic analysis approach to identify common themes. The sociodemographic data were collected using an instrument developed by the authors. RESULTS: A total of 48 patients participated in the study (58% were Brazilian and 42% were German). Of all participants, 35% were men and 65% were women. The participants' mean age was 41 years. The general idea captured from the interviewees' speech was that their diseases were curable or "while there is chemotherapy, there is life"; thus, the data analysis enabled the elaboration of the central theme, entitled "Mistaken expectations of metastatic cancer patients regarding palliative chemotherapy: While there is chemotherapy, there is life," with 5 subthemes, namely: (1) communication and expectations; (2) normal life; (3) the person behind the disease; (4) religiosity and spirituality; and (5) the fortitude to choose between continuing or discontinuing treatment. SIGNIFICANCE OF RESULTS: Regardless of cultural aspects, patients with metastatic cancer on palliative chemotherapy tend to believe in the healing potential of treatments. Dividing expectations only into curable or incurable is insufficient, as even patients who have acknowledged the incurability of their disease expect to live, as long as they remain under treatment as if the disease did not exist.

Place of Death for Israeli Cancer Patients Over a 20-Year Period: Reducing Hospital Deaths, but Barriers Remain.

BACKGROUND: Cancer remains a leading cause of mortality worldwide. While the main focus of palliative care (PC) is quality of life, the elements that comprise the quality of death are often overlooked. Dying at home, with home-hospice-care (HHC) support, rather than in-hospital, may increase patient satisfaction and decrease the use of invasive measures. We examined clinical and demographic characteristics associated with out-of-hospital death among patients with cancer, which serves as a proxy measure for HHC deaths. METHODS: Using death certification data from the Israel Central Bureau of Statistics, we analyzed 209,158 cancer deaths between 1998 and 2018 in Israel including demographic information, cause of death, and place of death (POD). A multiple logistic regression model was constructed to identify factors associated with out-of-hospital cancer deaths. RESULTS: Between 1998 and 2018, 69.1% of cancer deaths occurred in-hospital, and 30.8% out-of-hospital. Out-of-hospital deaths increased by 1% annually during the study period. Older patients and those dying of solid malignancies were more likely to die out-of-hospital (OR = 2.65, OR = 1.93, respectively). Likelihood of dying out-of-hospital varied with area of residency; patients living in the Southern district were more likely than those in the Jerusalem district to die out-of-hospital (OR = 2.37). CONCLUSION: The proportion of cancer deaths occurring out-of-hospital increased during the study period. We identified clinical and demographic factors associated with POD. Differences between geographical areas probably stem from disparity in the distribution of PC services and highlight the need for increasing access to primary EOL care. However, differences in age and tumor type probably reflect cultural changes and suggest focusing on educating patients, families, and physicians on the benefits of PC.

'It is easier to not allow them to see your disability straight away, to see you as a person': An Interpretative Phenomenological Analysis of video gaming from the perspectives of men with Duchenne Muscular Dystrophy.

BACKGROUND: Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy. AIM: To explore the lived experience of video gaming from the perspective of young men with Duchenne Muscular Dystrophy. DESIGN: Interpretative Phenomenological Analysis approach involving in-depth interviews using a topic guide that focused on social media broadly, with reference to video gaming. Sequential interviewing was undertaken to support participation regarding fatigue and tiredness, symptoms of Duchenne Muscular Dystrophy. SETTING/PARTICIPANTS: Participants were purposefully recruited from a hospice in the North of England. Twitter was used to support recruitment. Eight young men with Duchenne Muscular Dystrophy were recruited to the study. RESULTS: Five themes were developed; 'gamer as a shared and accepted identity', 'an existential and bodily escapism', 'introspection through video gaming', 'video gaming as a release' and 'when life gives you few choices-video game'. Motivations for engagement with video gaming are diverse and reflective of the situated perspectives of young men with Duchenne Muscular Dystrophy. CONCLUSIONS: An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy.