End-of-life care in multiple system atrophy: UK survey of patients and families.

OBJECTIVES: People with multiple system atrophy (MSA) and their carers may have many concerns about their disease and the future. This survey of people with MSA and their carers aimed to increase understanding of end-of-life care and palliative care for this group. METHODS: A survey was undertaken by the MSA Trust of people living with MSA and carers of those with the condition between August and October 2022. RESULTS: 520 people responded: 215 people with MSA, 214 carers and 91 former carers. The modal class for age in people with MSA was 65-74 years, with 52% male. 76% of people living with MSA had thought to some extent about what they wanted to happen towards the end of their lives. 38% of respondents had discussed end-of-life care options with a healthcare professional and of those who had, over 81% found the conversation helpful. Nevertheless, for 37% of former carers, the death had been unexpected. Only a minority of people living with MSA had been referred for specialist palliative care. 65% of the former carers reported that they were satisfied with the quality of end-of-life care. CONCLUSION: People with MSA and their carers continue to face many complex physical and emotional issues that would benefit from palliative care. Discussions about care at the end of life were generally perceived as helpful, but although the deterioration was often discussed, many families seemed unprepared for the death. Palliative care services were involved but this appeared limited.

Pediatric Perspectives on Palliative Care in the Neurocritical Care Unit.

Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional overload, and multiple potentially life-altering decision points. In addition to clinical acumen, families desire clear and consistent communication, supported decision-making, a multidisciplinary approach to psychosocial supports throughout an admission, and comprehensive bereavement support after a death. Distinct from their adult counterparts, pediatric providers care for a broader set of rare diagnoses with limited prognostic information. Decision-making requires its own ethical framework, with substitutive judgment giving way to the best interest standard as well as "good parent" narratives. When a child dies, bereavement support is often needed for the broader community. There will always be a role for specialist palliative care consultation in the pediatric neurocritical care unit, but the care of every patient and family will be well served by improving these primary palliative care skills.

Destitute and dying: interventions and models of palliative and end of life care for homeless adults - a systematic review.

BACKGROUND: Homeless adults experience a significant symptom burden when living with a life-limiting illness and nearing the end of life. This increases the inequalities that homeless adults face while coping with a loss of rootedness in the world. There is a lack of palliative and end of life care provision specifically adapted to meet their needs, exacerbating their illness and worsening the quality of their remaining life. AIM: To identify interventions and models of care used to address the palliative and end of life care needs of homeless adults, and to determine their effectiveness. METHODS: Standard systematic reviewing methods were followed, searching from 1 January 2000 the databases: Ovid MEDLINE, EMBASE, SCOPUS, Web of Science, CINAHL and PsycInfo. Results were reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and described using a narrative synthesis. Study quality was assessed using Hawker's Quality Assessment Tool. RESULTS: Nine studies primarily focused on: education and palliative training for support staff; advance care planning; a social model for hospice care; and the creation of new roles to provide extra support to homeless adults through health navigators, homeless champions or palliative outreach teams. The voices of those experiencing homelessness were rarely included. CONCLUSION: We identified key components of care to optimise the support for homeless adults needing palliative and end of life care: advocacy; multidisciplinary working; professional education; and care in the community. Future research must include the perspectives of those who are homeless.

Mindful breathing for cancer pain: efficacy of a single 20-minute session - a randomised controlled study.

OBJECTIVES: Cancer pain is a prevalent and challenging symptom affecting a significant number of patients globally, with inadequate control remaining a substantial challenge despite advancements in pain management. Non-pharmacological interventions, including mindfulness-based approaches, have shown promise in alleviating cancer-related pain. This study aimed to explore the efficacy of a single session of 20-minute mindful breathing in reducing pain among patients with cancer. METHODS: A randomised controlled study was conducted at the University of Malaya Medical Centre, Malaysia, involving adult cancer inpatients with a pain score of ≥4/10. Participants were randomly assigned to a 20-minute mindful breathing intervention or a 20-minute supportive listening control group. Outcome measures included pain intensity, pain unpleasantness and Hospital Anxiety and Depression Scale score, assessed before and after the intervention. RESULTS: The 20-minute mindful breathing sessions demonstrated significant efficacy in reducing pain intensity, pain unpleasantness and anxiety compared with the control group. CONCLUSION: This research broadens the repertoire of cancer pain management by highlighting the rapid and holistic benefits of a single session of 20-minute mindful breathing. The findings suggest the potential integration of brief mindfulness exercises into routine cancer care to enhance pain management and overall well-being.

End-of-life practices in Hong Kong intensive care units: results from the Ethicus-2 study.

INTRODUCTION: The need for end-of-life care is common in intensive care units (ICUs). Although guidelines exist, little is known about actual end-of-life care practices in Hong Kong ICUs. The study aim was to provide a detailed description of these practices. METHODS: This prospective, multicentre observational sub-analysis of the Ethicus-2 study explored end-of-life practices in eight participating Hong Kong ICUs. Consecutive adult ICU patients admitted during a 6-month period with life-sustaining treatment (LST) limitation or death were included. Follow-up continued until death or 2 months from the initial decision to limit LST. RESULTS: Of 4922 screened patients, 548 (11.1%) had LST limitation (withholding or withdrawal) or died (failed cardiopulmonary resuscitation/brain death). Life-sustaining treatment limitation occurred in 455 (83.0%) patients: 353 (77.6%) had decisions to withhold LST and 102 (22.4%) had decisions to withdraw LST. Of those who died without LST limitation, 80 (86.0%) had failed cardiopulmonary resuscitation and 13 (14.0%) were declared brain dead. Discussions of LST limitation were initiated by ICU physicians in most (86.2%) cases. Shared decision-making between ICU physicians and families was the predominant model; only 6.0% of patients retained decision-making capacity. Primary medical reasons for LST limitation were unresponsiveness to maximal therapy (49.2%) and multiorgan failure (17.1%). The most important consideration for decision-making was the patient's best interest (81.5%). CONCLUSION: Life-sustaining treatment limitations are common in Hong Kong ICUs; shared decision-making between physicians and families in the patient's best interest is the predominant model. Loss of decision-making capacity is common at the end of life. Patients should be encouraged to communicate end-of-life treatment preferences to family members/surrogates, or through advance directives.

Palliative care screening tools and patient outcomes: a systematic review.

BACKGROUND: Palliative care (PC) refers to providing patients with physical, psychological, mental, and other care and humanistic care services in a multidisciplinary collaborative mode with end-of-stage patients and family members as the centre. The PC screening tool (PCST) was developed to identify individuals who may benefit from PC services and is widely assumed to improve patient outcomes. OBJECTIVES: The purpose is to understand which specific PCST has been applied to clinical patients and to analyse and summarise the impact of using these tools on patient outcomes. METHODS: A systematic review of articles published on PCST was performed in PubMed, Web of Science, CINAHL and MEDLINE in January 2024. All original research articles on PCST fulfilling the following eligibility criteria were included (1) utilisation and evaluation of tools was the primary objective and (2) at least one patient outcome was reported. RESULTS: A total of 22 studies were included, 12 studies used a prospective study, 4 studies used a non-RCT and 6 studies used an RCT. The studies were heterogeneous regarding study characteristics, especially patient outcomes. In total, 24 different patient outcomes were measured, of which 16 outcomes measured in 12 studies significantly improved. CONCLUSIONS: We found that the majority of included studies reported that implementing PCST can improve patient outcomes to some extent, especially when used to improve in reducing hospitalisation time and patient readmission rate. However, there is a lack of high-quality research on this widely used screening tool.

How do primary care clinicians approach hospital admission decisions for people in the final year of life? A systematic review and narrative synthesis.

BACKGROUND: The final year of life is often associated with increasing health complexities and use of health services. This frequently includes admission to an acute hospital which may or may not convey overall benefit. This uncertainty makes decisions regarding admission complex for clinicians. There is evidence of much variation in approaches to admission. AIMS: To explore how Primary Care clinicians approach hospitalisation decisions for people in the final year of life. DESIGN: Systematic literature review and narrative synthesis. DATA SOURCES: We searched the following databases from inception to April 2023: CINAHL, Cochrane Library, Embase, MedLine, PsychInfo and Web of Science followed by reference and forward citation reviews of included records. RESULTS: A total of 18 studies were included: 14 qualitative, 3 quantitative and 1 mixed methods study. As most of the results were qualitative, we performed a thematic analysis with narrative synthesis. Six key themes were identified: navigating the views of other stakeholders; clinician attributes; clinician interpretation of events; the perceived adequacy of the current setting and the alternatives; system factors and continuity of care. CONCLUSION: This review shows that a breadth of factors influence hospitalisation decisions. The views of other stakeholders take great importance but it is not clear how these views are, or should be, should be balanced. Clinician factors, such as experience with palliative care and clinical judgement, are also important. Future research should focus on how different aspects of the decision are balanced and to consider if, and how, this could be improved to optimise patient-centred outcomes and use of health resources.

Incidence and outcomes of falls in an inpatient palliative care unit: a single-centre retrospective study.

BACKGROUND: Falls are a significant concern in healthcare settings. While comprehensive strategies to prevent falls are employed in hospitals, there is a lack of information regarding falls within inpatient palliative care units. METHOD: This retrospective cohort study analysed fall incidence, characteristics and outcomes in a metropolitan inpatient palliative care unit over a 1 year period. Falls were identified using the online incident reporting system and patient characteristics, fall risk assessment and prevention measures were obtained through the electronic patient records. RESULTS: During the study period, there were 61 falls by 51 patients out of a total of 525 admitted patients. The incidence of falls was 9.7% and the rate of falls was 5.8 falls per 1000 bed days for all admitted patients. Though more than half of falls resulted in no injury, 41% of patients with falls died within a week post-fall. Fall risk assessment was completed for 97% of patients at the time of the fall. CONCLUSION: This study contributes to the understanding of falls in inpatient palliative care units. Fall risk assessment and prevention measures did not appear to alter the rate of falls among patients who fell. Fall prevention strategies need to be tailored to meet patient autonomy, end of life goals and maintain healthcare standards.

Care of the Patient Nearing the End of Life in the Neurointensive Care Unit.

BACKGROUND: Neurologically critically ill patients present with unique disease trajectories, prognostic uncertainties, and challenges to end-of-life (EOL) care. Acute brain injuries place these patients at risk for underrecognized symptoms and unmet EOL management needs, which can negatively affect their quality of care and lead to complicated grief in surviving loved ones. To care for patients nearing the EOL in the neurointensive care unit, health care clinicians must consider neuroanatomic localization, barriers to symptom assessment and management, unique aspects of the dying process, and EOL management needs. AIM: We aim to define current best practices, barriers, and future directions for EOL care of the neurologically critically ill patient.

Impairments of Human Dignity at the End of Life Quantitatively Assessed by Health Care Professionals: A Pilot Study From Germany.

BACKGROUND: Empirical investigations on health care professionals' (HCPs) perception of dignity have already spotted common themes in preserving dignity in end-of-life care. However, heterogenic assessment results of varying HCP groups exist. This pilot study wants to provide further evidence on HCPs' rating of dignity-impairing aspects based on a patient-centered concept, especially regarding different underlying job profiles and other professional characteristics. METHODS: In a quantitative study design, the rating of dignity-impairing factors in end-of-life care via an adapted version of the Patient Dignity Inventory (aPDI) was assessed. Participants of the relevant professional groups were recruited via convenience sampling from a region of Germany. RESULTS: From the final sample of participants, 229 questionnaires were analyzed. The overall importance of each dignity-impairing aspect in end-of-life care was considered to be very high by all different HCP groups. Nonetheless, ratings differed between professions: nursing staff had the highest ratings of importance compared to both physicians and individuals with multiple occupations. Participants with previous knowledge in bioethics also rated some aspects as more important compared to those without this feature. CONCLUSION: With the findings of this investigation, an insight of how professionals rate impairments of dignity at the end of life based on a patient-centered concept is given. Thus, a link between empirical research and medical ethics is added. Potential normative implications for HCPs in practice of a dignified care can be derived, consisting of actively addressing social topics as well as further stressing ethics as a fundamental subject in the training and continuing education.

A window of opportunity for ICU end-of-life care-A retrospective multicenter cohort study.

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.

Intensive care unit interventions to improve quality of dying and death: scoping review.

BACKGROUND: Intensive care units (ICUs) have mortality rates of 10%-29% owing to illness severity. Postintensive care syndrome-family affects bereaved relatives, with a prevalence of 26% at 3 months after bereavement, increasing the risk for anxiety and depression. Complicated grief highlights issues such as family presence at death, inadequate physician communication and urgent improvement needs in end-of-life care. However, no study has comprehensively reviewed strategies and components of interventions to improve end-of-life care in ICUs. AIM: This scoping review aimed to analyse studies on improvement of the quality of dying and death in ICUs and identify interventions and their evaluation measures and effects on patients. METHODS: MEDLINE, CINAHL, PsycINFO and Central Journal of Medicine databases were searched for relevant studies published until December 2023, and their characteristics and details were extracted and categorised based on the Joanna Briggs model. RESULTS: A total of 24 articles were analysed and 10 intervention strategies were identified: communication skills, brochure/leaflet/pamphlet, symptom management, intervention by an expert team, surrogate decision-making, family meeting/conference, family participation in bedside rounds, psychosocial assessment and support for family members, bereavement care and feedback on end-on-life care for healthcare workers. Some studies included alternative assessment by family members and none used patient assessment of the intervention effects. CONCLUSION: This review identified 10 intervention strategies to improve the quality of dying and death in ICUs. Many studies aimed to enhance the quality by evaluating the outcomes through proxy assessments. Future studies should directly assess the quality of dying process, including symptom evaluation of the patients.

Prevalence of oral diseases in patients under palliative care: a systematic review and meta-analysis.

PURPOSE: Oral alterations are frequently observed in patients undergoing palliative care and are linked to the direct or indirect effects of the primary medical condition, comorbidities and medical management, leading to oral pain, impacting oral intake, and affecting quality of life. This systematic review aims to assess the prevalence of oral disease in palliative care patients. METHODS: The protocol was registered at the PROSPERO database, and a systematic review of the literature was performed based on the PRISMA statement. A thorough evaluation of studies from five databases and gray literature was conducted. The risk of bias in each study was assessed using the Joanna Briggs Institute checklist for cross-sectional and case-control studies. A quantitative analysis was conducted on five studies using meta-analysis, and the degree of certainty in the evidence was determined using the GRADE tool. RESULTS: The sample consisted of 2,502 patients, with a slight male predominance (50.43%). The average age was 66.92 years. The prevalence of oral diseases among palliative care patients was as follows: caries 32% (95% CI, 0.11-0.56; I2 = 93%), and oral candidiasis 17% (95% CI,0.11-0.25; I2 = 74%). Gingivitis and stomatitis were also reported, but with less frequency. CONCLUSION: Dental intervention should take place as early as possible, ideally from the time of the patient's initial admission to palliative care, with regular monitoring of oral health. This approach can enhance the patient's comfort and quality of life and help prevent more severe complications in the future.

Nurses' Perspectives Regarding Challenges of Providing Perinatal/Neonatal End-of-Life Care in a Regional Hospital: An Exploratory Qualitative Study.

AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. METHODS: This exploratory qualitative study was conducted with 20 nurses working in Turkey. Study data were collected through in-depth and semi-structured individual interviews. The interviews were then submitted to thematic analysis. RESULTS: Three themes emerged from analyses of the interviews: (1) inadequate support for delivery of palliative care, (2) perceptions of family readiness, and (3) providing information/education to the family. The most prominent difficulties experienced by nurses were inadequacy of unit and equipment and lack of trained personnel. Another important issue that stood out was families' not accepting the end-of-life care decision for the fetus or the neonate and their having unrealistic expectations. CONCLUSION: Study results have provided important considerations for regional isolated neonatal and perinatal units, and they will be used to inform clinical practice improvements, staff education support, policies/procedures, family support, and further research relating to end-of-life care provision for the most vulnerable babies and their families.

Timely integration of palliative care. the reality check. a retrospective analysis.

PURPOSE: A large volume of literature suggests that timely integration of palliative care (PC) enhances the well-being, quality of life and satisfaction of patients and their families. It may also positively impact clinical outcomes and healthcare costs throughout the disease trajectory. Therefore, reviewing clinical practice to reflect real-life situations regarding timely PC integration is essential. METHODS: This study, conducted at the Vienna General Hospital between March 2016 and August 2022, retrospectively examined PC consultation (PCC) requests. It aimed to assess the timeliness of PC integration by analysing the duration between diagnosis and the first PCC request, as well as the interval between the first PCC request and death. RESULTS: This study included 895 PCCs. The median time from diagnosis to the first PCC was 16.6 (interquartile range (IQR): 3.9-48.4) months, while the median time from the first PCC to death was 17.2 (IQR: 6.1-50.7) days. The median time from diagnosis to first PCC was 10.4 months in females (confidence interval (CI): 6.0-14.8) compared to 10.6 months in males (CI: 8.1-13.1; p = 0.675). There were no gender disparities in the time from first PCC to death, with a median of 23.3 days (CI: 15.6-31.0) for females and 22.3 days (CI: 16.2-28.4) for males (p = 0.93). Fifty percent of patients died between 5 and 47 days after the first PCC. CONCLUSION: These findings highlight the discrepancy between the clinical perception of PC as end-of-life care and the existing literature, thereby emphasising the importance of timely PC integration.

Fulfilling last wishes: improving the compassionate discharge process.

BACKGROUND: Compassionate discharges (ComD), commonly known as rapid discharges, are urgent one-way discharges for critically ill hospitalised patients with death expected within hours or less than 7 days, to die at their place of choice-usually in their own home. Challenges abound in this time-sensitive setting when multiple parties must work together to prepare medically unstable patients for discharge, yet healthcare staff are largely unaware of the process, resulting in delays. METHODS: Process mapping, an Ishikawa diagram and a Pareto chart were used to identify barriers, which included timely acquisition of home equipment and medication and poor communication among stakeholders. In May 2020, the Quality Improvement (QI) team embarked on a pilot project to reduce family caregiver anxiety and delays in the ComD process while maintaining a success rate above 90% over a 12-month period. INTERVENTIONS: Three Plan-Do-Study-Act (PDSA) cycles were used to refine a ComD resource package that was developed; this consisted of a checklist, a kit and caregiver resources. This was to support nurses, doctors and families during this difficult and emotional transition. Items in the ComD resource package were revised iteratively based on user feedback, with further data collected to measure its usefulness. RESULTS: The 12-month ComD success rate over 3 PDSA cycles were 88.9%, 94.2% and 96.7%, respectively, after each cycle. There was a consistent reduction in the level of family anxiety before and after caregiver training and resources. Reasons for failed ComD included acute clinical deterioration or delays in obtaining home oxygen support. CONCLUSION: The ComD resource package allowed collaborative work across different disciplines, strengthening the safety and utility of ComD and allowing patients to die in their place of choice. These are ubiquitous across settings; this QI problem is thus relevant beyond our local institution.

Psychosocial Factors Associated With Thoughts Regarding Life-Sustaining Treatment for Oneself and Family Members.

OBJECTIVE: This study aims to investigate the thoughts of the general population regarding life-sustaining treatment for both oneself and family members and to assess the factors associated with those thoughts. METHODS: A total of 1,500 individuals participated in this study by completing a questionnaire consisting of self-reporting items with some instructions, basic demographic information, thoughts on life-sustaining treatment, and psychosocial scales. The disease status was calculated using the Charlson Comorbidity Index. The psychosocial scales included the Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), Pittsburgh Sleep Quality Index, and Multidimensional Scale of Perceived Social Support. RESULTS: The majority of participants did not want to receive life-sustaining treatment for both themselves and their families. However, more people wanted life-sustaining treatment for their family members (35.9%) than for themselves (21.6%). Among the basic demographic characteristics, there were significant differences in age, sex, marital status, living arrangements, occupational status, religion, and disease status. Regarding the psychosocial scales, there were significant differences in the PHQ-9 and GAD-7 scores between the group that preferred life-sustaining treatment for family members and the group that did not. CONCLUSION: The findings suggest that life-sustaining treatment decisions for oneself and for one's family members can be different. We recommend a more clear expression of one's preferences regarding the last moments of one's life, including advance directives.

Appropriate Timing of End-of-Life Care: A Dutch Policy Analysis and Opportunities for Improvement.

Background: The Exceptional Medical Expenses Act (EMEA) guaranteed public financing for the costs of end-of-life care in The Netherlands until 2015. A life expectancy shorter than three months was a prerequisite for a patient to qualify. Objective: To estimate survival and its potential predictors using the start date of EMEA funded end-of-life care as time origin, and to calculate the ensuing costs. Design: Retrospective observational study using data retrieved from multiple datasets of the national statistical office Statistics Netherlands (https://www.cbs.nl/en-gb/). Setting: Included were all adult patients, who received EMEA funded end-of-life care in hospice units in nursing homes and homes for the elderly in The Netherlands between January 1, 2009, and December 31, 2014. Results: In 40,659 patients (median age 79 years), the distribution of survival was extremely skewed. Median, 95%, and maximum survival times were 15 (95% confidence interval [CI] = 15-15), 219 (210-226), and 2,006 days, respectively. The 90-day and 180-day survival rates were 12.4 (12.1-12.7)% and 6.2 (6.0-6.5)%, respectively. Although age, gender, diagnosis, and start year of end-of-life care were statistically significant independent predictors, clinical significance is limited. End-of-life care was delivered for a total of 1,720,002 days, costing almost 440 million Euros. Fifty-nine percent of the costs was for barely 11% of patients, i.e., those who received end-of-life care for more than 90 days. Conclusion: The use of life expectancy is a weak basis for the appropriate timing of end-of-life care. Further research should evaluate potential tools to improve the timing of end-of-life care, while using available resources efficiently.

Exploring end of life care provision during medical imaging in hospitals: Analysis of survey data from the UK radiography workforce.

INTRODUCTION: Patients receiving end-of-life care often undergo medical imaging examinations in hospitals to inform symptom management and care. Yet little is known about the experiences of the radiography workforce who deliver it. This study aims to describe and explore experiences of the UK radiography workforce delivering medical imaging as part of patients' end-of-life care. METHODS: A mixed method cross-sectional online survey disseminated via social media and national organisations from September 2023 to January 2024. Diagnostic radiographers, assistant practitioners and radiology assistants involved in the medical imaging of patients receiving end-of-life care in UK hospitals. RESULTS: 120 valid responses were received. Most respondents received no education/training (91.6%) on the role of medical imaging in end-of-life care, despite 87.7% expressing a need for education, particularly around adopting supportive/palliative-centric communication techniques. Although most respondents (89.2%) had heard of end-of-life care, some had difficulty understanding the role of medical imaging in end-of-life care. Insufficient information provided on imaging requests hindered the workforces' ability to determine and understand the appropriate use of medical imaging during end-of-life care. These uncertainties exacerbated negative emotions, with 80.8% of respondents indicating that they felt emotional during or after imaging patients on end-of-life care. CONCLUSION: Educational and policy needs were identified around facilitating more supportive/palliative-centric communication techniques and providing the radiography workforce with the knowledge to better understand, explain, deliver and where necessary, challenge the use of medical imaging in end-of-life care. IMPLICATIONS FOR PRACTICE: This study has evidenced the important role the radiography workforce play in generalist end-of-life care. However, there is a need for training to support practitioners as well as appropriate policies to develop supportive and high-quality end-of-life care in medical imaging.

Transition to end-of-life care in patients with neurological diseases in an acute hospital ward.

BACKGROUND: Transitioning to end-of-life care and thereby changing the focus of treatment directives from life-sustaining treatment to comfort care is important for neurological patients in advanced stages. Late transition to end-of-life care for neurological patients has been described previously. OBJECTIVE: To investigate whether previous treatment directives, primary medical diagnoses, and demographic factors predict the transition to end-of-life care and time to eventual death in patients with neurological diseases in an acute hospital setting. METHOD: All consecutive health records of patients diagnosed with stroke, amyotrophic lateral sclerosis (ALS), and Parkinson's disease or other extrapyramidal diseases (PDoed), who died in an acute neurological ward between January 2011 and August 2020 were retrieved retrospectively. Descriptive statistics and multivariate Cox regression were used to examine the timing of treatment directives and death in relation to medical diagnosis, age, gender, and marital status. RESULTS: A total of 271 records were involved in the analysis. Patients in all diagnostic categories had a treatment directive for end-of-life care, with patients with haemorrhagic stroke having the highest (92%) and patients with PDoed the lowest (73%) proportion. Cox regression identified that the likelihood of end-of-life care decision-making was related to advancing age (HR = 1.02, 95% CI: 1.007-1.039, P = 0.005), ischaemic stroke (HR = 1.64, 95% CI: 1.034-2.618, P = 0.036) and haemorrhagic stroke (HR = 2.04, 95% CI: 1.219-3.423, P = 0.007) diagnoses. End-of-life care decision occurred from four to twenty-two days after hospital admission. The time from end-of-life care decision to death was a median of two days. Treatment directives, demographic factors, and diagnostic categories did not increase the likelihood of death following an end-of-life care decision. CONCLUSIONS: Results show not only that neurological patients transit late to end-of-life care but that the timeframe of the decision differs between patients with acute neurological diseases and those with progressive neurological diseases, highlighting the particular significance of the short timeframe of patients with the progressive neurological diseases ALS and PDoed. Different trajectories of patients with neurological diseases at end-of-life should be further explored and clinical guidelines expanded to embrace the high diversity in neurological patients.