An Analysis of Healthcare Usage & Place of Death in England for All Adults Who Died in 2021/22.

OBJECTIVE: We wanted to examine the healthcare use and non-elective activity in the UK population of expected deaths over an 1-year period to highlight and examine the reasons for variation. We did this to identify areas to focus interventions or resources on to reduce unnecessary emergency care use at the end of life. METHODS AND ANALYSIS: We assembled a data set of approximately 400 000 adults who died in England in the financial year 2021/22 (April 2021-March 2022). Any adults classified as a 'sudden death' were excluded. We used available data to ensure outcome measures were relevant used expert consensus to agree what to examine. We recorded place of death and examined urgent care in terms of admissions in the last year and 90 days of life. We also used recorded hospital care days as elective and non-elective usage. RESULTS: There were over 400 000 decedents included in our regression models. Close to half died in hospital (44%). Three-quarters (77%) had at least one day of unplanned hospital care in the 90 days before they died, and half (56%) had at least one day of planned hospital care. CONCLUSION: Reliance on urgent care for those approaching end-of-life may indicate poor care planning and integration of services. A relatively modest increase in the amount of community care a person receives at end-of-life can substantially reduce the likelihood of dying in hospital. Those with a cancer cause of death are far less likely to die in hospital.

Digitally Recording Comfort Observations in the Last Days of Life.

Background: 37.5% of deaths in our area occur in hospital. There are known high unmet needs of adult patients dying in hospital, this unmet need can be reduced by using an individualised care plan and specialist palliative care review. Intervention: In 2022 UHSussex developed an electronic comfort observation chart and individualised care plan, with a centralised dashboard allowing Palliative Care Teams (SPCT) to view trends, target interventions, and a rolling prospective audit. Results: 3000 patients have had their care supported with electronic comfort observations (e-comfort obs). Over 72% of all deaths in the Trust in the last 3 months have been on e-comfort obs, with 2/3 of all deaths in the first 12 months on e-comfort obs. The average length of time on e-comfort obs is 4 days resulting in 70,000 sets of e-comfort obs recorded since launch. Seven percent of e-comfort obs record moderate or severe symptoms. We have identified benefits to people who are dying, those important to them, ward staff, SPCT and on a systems level. Conclusion: E-comfort obs can be successfully embedded in a large acute Trust. This development should improve quality of end of life care in our hospitals both for individuals and for future patients, through on-going targeted education and intervention. Further work is needed to develop the system further including integrating data from electronic prescribing.

Evaluation of Palliative Care Related Hospital Admissions in a Regional Centre.

OBJECTIVES: A significant proportion of adults admitted to hospital are in their last year of life. We evaluated admissions for these patients. METHODS: We identified ambulance callouts to patients known to the palliative care team. Data collected included admission outcome (e.g. discharge or death). RESULTS: There were 162 ambulance callouts between 126 patients known to the palliative care team. 8 patients (6%) died within 72 hours of admission. CONCLUSION: Our data suggests many palliative care patients can be appropriately treated in the community.

What can you learn as a foundation doctor from analysing deaths in hospital?

Deaths in hospital represent a vital learning opportunity for both individual clinicians and the wider healthcare system. Many deaths are reviewed and discussed in morbidity and mortality meetings, with the Royal College of Physicians promoting Structured Judgement Review (SJR) methodology to support this discussion. An analysis of 1 year of SJRs in one hospital was undertaken, generating a toolkit to support junior doctors in evaluating in-hospital deaths. Here, the opportunities and limitations of this analysis are discussed, with consideration of ways to improve the uptake of SJR across the hospital team. These reviews exemplify one way of maximising learning from in-hospital deaths.

What makes for a 'Top Doc'? An analysis of UK press portrayals of so-called top doctors.

OBJECTIVE: To determine the characteristics of medical practitioners designated 'top doctor' or 'Top Doc' in the UK press. DESIGN: Observational study of news stories related to the term top doctor (or Top Doc) with analysis using data from publicly available databases. SETTING: News reports in the UK press accessed via a database from national newspapers from 1 January 2019 to 31 December 2019, prior to the COVID-19 pandemic. Stories relating to disciplinary/criminal matters were analysed separately. MAIN OUTCOME MEASURES: Results were cross-referenced with the General Medical Council register of medical practitioners for gender, year of qualification, whether on the general practitioner (GP) or the specialist register, and if on the specialist register, which specialty. RESULTS: There was a gender divide, with 80% of so-called top doctors being male. National top doctors had been qualified for a median time of 31 years. Top doctors are widely spread among specialties; 21% of top doctors were on the GP register. Officers of the British Medical Association and the various Royal Colleges are also well represented. 'Top doctors' facing disciplinary proceedings are more overwhelmingly male, working in hospital specialties and less obviously eminent in their field. CONCLUSION: There is no clear definition of a 'top doctor', nor are there objective leadership criteria for journalists to use when applying this label. Establishing a definition of 'top doctor', for instance, via the UK Faculty for Medical Leadership and Management, which offers postnominals and accreditation for high-achieving medical professionals, may reduce subjectivity.

Seeking Excellence in End of Life Care UK (SEECare UK): a UK multi-centred service evaluation.

OBJECTIVE: To evaluate the care of patients dying in hospital without support from specialists in palliative care (SPC), better understand their needs and factors influencing their care. METHODS: Prospective UK-wide service evaluation including all dying adult inpatients unknown to SPC, excluding those in emergency departments/intensive care units. Holistic needs were assessed through a standardised proforma. RESULTS: 88 hospitals, 284 patients. 93% had unmet holistic needs, including physical symptoms (75%) and psycho-socio-spiritual needs (86%). People were more likely to have unmet needs and require SPC intervention at a district general hospital (DGH) than a teaching hospital/cancer centre (unmet need 98.1% vs 91.2% p0.02; intervention 70.9% vs 50.8% p0.001) and when end-of-life care plans (EOLCP) were not used (unmet need 98.3% vs 90.3% p0.006; intervention 67.2% vs 53.3% p0.02). Multivariable analyses demonstrated the independent influence of teaching/cancer hospitals (adjusted OR (aOR)0.44 CI 0.26 to 0.73) and increased SPC medical staffing (aOR1.69 CI 1.04 to 2.79) on need for intervention, however, integrating the use of EOLCP reduced the impact of SPC medical staffing. CONCLUSION: People dying in hospitals have significant and poorly identified unmet needs. Further evaluation is required to understand the relationships between patient, staff and service factors influencing this. The development, effective implementation and evaluation of structured individualised EOLCP should be a research funding priority.

Patient-reported outcome measurement in palliative care: A hermeneutic narrative review.

OBJECTIVES: Recent years have witnessed the rise of patient-reported outcome measures (PROMs) in palliative care (PC), particularly those focused on the standardized measurement of symptom burden. These measures seek to evaluate the quality of PC through the quantification of various aspects of potential suffering (e.g., sleeplessness, loss of appetite, and pain). Further, drawing on patient experience, they provide a framework for evaluating the effectiveness of, and at times expanding, PC services. The aim of this paper is to provide a theoretically informed normative critique of PROMS-PC through a critical engagement with heterogeneous literatures. METHODS: A hermeneutic narrative review underpinned by a view of "knowing" as an ongoing social accomplishment and inspired by complexity theory. RESULTS: This narrative review highlights some limitations to the development of PROMs, including the use of proxies to complete them, and how the outcomes may not always reflect either the character of PC or the key aspects of practice and experience therein. SIGNIFICANCE OF RESULTS: In their current form, PROMs have the potential to skew understandings of service quality, for example, by privileging one aspect of quality, that is, physical symptoms over other aspects of quality such as communication with care providers.

Speaking up at conference question and answer sessions-disruptive behaviour typography and assessment scale.

Conferences can be a space to present new research, network, and provide an opportunity for learning. Delegates can meet field leaders, peers, top doctors, and international colleagues in various areas of expertise. Challenging behaviours, in particular in the question and answer session, but also during lectures themselves, may reduce overall enjoyment and learning. The authors of this article have written an observational reflection on some observed behaviours and have come up with a 10-point assessment scale. The article aims to stimulate discussion on what constitutes disruptive conduct, but also serves as a guide for conference session chair-people and delegates to spot patterns of contribution that may be unwelcome.

Medical student anxiety in caring for dying patients and their family: a cross-sectional study.

OBJECTIVES: To investigate the level of medical student anxiety in caring for a dying patient and their family and identify influencing factors. METHODS: We conducted a cross-sectional survey in a UK medical school to measure medical student anxiety using a validated Thanatophobia Scale questionnaire. RESULTS: In total, 332 questionnaires were completed. Mean thanatophobia score was 19.5 (SD 7.78, range 7-49). Most respondents were female (67.4%) and did not have a previous undergraduate degree (56%). Median student age was 22 years (IQR 20-24). Year of study influenced anxiety level, with second year students displaying an increase in mean thanatophobia score of 6.088 (95% CI 3.778 to 8.398, p<0.001). No significant differences were observed between final year and first year thanatophobia scores. For each 1-year increase in student age, mean thanatophobia score reduced by -0.282 (95% CI -0.473 to -0.091, p=0.004). Degree status and gender identity did not significantly affect thanatophobia score. CONCLUSION: A degree of thanatophobia exists among medical students, with no significant improvement observed by completion of training. Recognising this anxiety to care for the dying earlier in undergraduate curricula will give educators the opportunity to address students' fears and concerns and better prepare our future doctors for their role in caring for our dying patients and their families.

Care of the dying - medical student confidence and preparedness: mixed-methods simulation study.

OBJECTIVES: Of all doctors, Foundation Year 1 trainees spend the most time caring for dying patients yet report poor preparation and low confidence in providing this care. Despite documented effectiveness of simulation in teaching end-of-life care to undergraduate nurses, undergraduate medicine continues to teach this subject using a more theoretical, classroom-based approach. By increasing undergraduate exposure to interactive dying patient scenarios, simulation has the potential to improve confidence and preparedness of medical students to care for dying patients. The main study objective was to explore whether simulated experience of caring for a dying patient and their family can improve the confidence and preparedness of medical students to provide such care. METHODS: A mixed-methods interventional study simulating the care of a dying patient was undertaken with serial measures of confidence using the Self Efficacy in Palliative Care (SEPC) tool. Significance testing of SEPC scores was undertaken using paired t-tests and analysis of variance. Post-simulation focus groups gathered qualitative data on student preparedness. Data were transcribed using NVivo software and interpreted using Thematic Analysis. RESULTS: Thirty-eight 4th-year students participated. A statistically significant post-simulation increase in confidence was seen for all SEPC domains, with sustained confidence observed at 6 months. Focus group data identified six major themes: current preparedness, simulated learning environment, learning complex skills, patient centredness, future preparation and curriculum change. CONCLUSION: Using simulation to teach medical students how to care for a dying patient and their family increases student confidence and preparedness to provide such care.

Cancer centre supportive oncology service: health economic evaluation.

OBJECTIVES: There have been many models of providing oncology and palliative care to hospitals. Many patients will use the hospital non-electively or semielectively, and a large proportion are likely to be in the last years of life. We describe our multidisciplinary service to treatable but not curable cancer patients at University Hospitals Sussex. The team was a mixture of clinical nurse specialists and a clinical fellow supported by dedicated palliative medicine consultant time and oncology expertise. METHODS: We identified patients with cancer who had identifiable supportive care needs and record activity with clinical coding. We used a baseline 2019/2020 dataset of national (secondary uses service) data with discharge code 79 (patients who died during that year) to compare a dataset of patients seen by the service between September 2020 and September 2021 in order to compare outcomes. While this was during COVID-19 this was when the funding was available. RESULTS: We demonstrated a reduction in length of stay by an average of 1.43 days per admission and a reduction of 0.95 episodes of readmission rates. However, the costs of those admissions were found to be marginally higher. Even with the costs of the service, there is a clear return on investment with a benefit cost ratio of 1.4. CONCLUSIONS: A supportive oncology service alongside or allied to acute oncology but in conjunction with palliative care is feasible and cost-effective. This would support investment in such a service and should be nationally commissioned in conjunction with palliative care services seeing all conditions.

How effective is virtual reality technology in palliative care? A systematic review and meta-analysis.

BACKGROUND: The efficacy of virtual reality for people living with a terminal illness is unclear. AIM: To determine the feasibility and effectiveness of virtual reality use within a palliative care setting. DESIGN: Systematic review and meta-analysis. PROSPERO (CRD42021240395). DATA SOURCES: Medline, Embase, AMED, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials and Web of Science were searched from inception to March 2021. Search terms included 'virtual reality' and 'palliative care'. Eligibility: (1) adult (>18 years old) with a terminal illness (2) at least one virtual reality session and (3) feasibility data and/or at least one patient outcome reported. The ROB-2 and ROBINS tools assessed risk of bias. The Grading of Recommendations, Assessment, Development and Evaluations (GRADE) tool assessed the quality of the evidence. Standardised mean differences (Hedges's g) were calculated from the pre- and post-data. A DerSimonian-Laird random effects model meta-analysis was conducted. RESULTS: Eight studies were included, of which five were in the meta-analysis. All studies had at least some concern for risk of bias. Virtual reality statistically significantly improved pain (p = 0.0363), tiredness (p = 0.0030), drowsiness (p = 0.0051), shortness of breath (p = 0.0284), depression (p = 0.0091) and psychological well-being (p = 0.0201). The quality of the evidence was graded as very low due to small sample sizes, non-randomisation methods and a lack of a comparator arm. CONCLUSIONS: Virtual reality in palliative care is feasible and acceptable. However, limited sample sizes and very low-quality studies mean that the efficacy of virtual reality needs further research.

Palliative care training in undergraduate medical, nursing and allied health: a survey.

OBJECTIVES: Impending death is poorly recognised. Many undergraduate healthcare professionals will not have experience of meeting or caring for someone who is dying. As death can occur in any setting, at any time, it is vital that all healthcare students, regardless of the setting they go on to work in, have end-of-life care (EOLC) training. The aim was to determine current palliative care training at the undergraduate level, in multiple professions, in recognising and communicating dying. METHODS: Current UK undergraduate courses in medicine, adult nursing, occupational therapy, social work and physiotherapy were included. All courses received an email asking what training is currently offered in the recognition and communication of dying, and what time was dedicated to this. RESULTS: A total of 73/198 (37%) courses responded to the request for information. 18/20 medical courses provided training in recognising when patients were dying (median 2 hours), and 17/20 provided training in the communication of dying (median 3 hours). 80% (43/54) of nursing and allied health professional courses provided some training in EOLC. Many of the course organisers expressed frustration at the lack of resources, funding and time to include more training. Those courses with more palliative care provision often had a 'champion' to advocate for it. CONCLUSIONS: Training in EOLC was inconsistent across courses and professions. Further research is needed to understand how to remove the barriers identified and to improve the consistency of current training.

Seeking Excellence in End of Life Care (SEE Care): A Multi-Centered Acute Hospitals Service Evaluation.

CONTEXT: A proportion of UK hospital inpatients have palliative care needs but do not access specialist services. OBJECTIVES: To contemporaneously evaluate the significance of unmet specialist palliative care needs within the hospital inpatient population. METHODS: Prospective multi-centered service evaluation was conducted through 4 snapshots across 4 acute NHS hospital trusts. All patients identified as dying in each hospital were included. Data extraction included symptom burden, medications and completion of care plans. RESULTS: End-of-life care plans were completed for 73%, symptom-focused prescribing present in 96%. Symptoms were not well managed for 22%, with 4% suffering moderate to severely. Specific intervention was triggered in 56% of patients, consisting of prescribing advice and holistic support. CONCLUSION: There are significant unmet specialist palliative care needs within the hospital inpatient population. Contemporaneous data collection coupled with an outreach approach helps palliative care services better understand the experiences of dying people, alongside where improvement is needed.

The Potential of Personalized Virtual Reality in Palliative Care: A Feasibility Trial.

BACKGROUND: Virtual Reality can help alleviate symptoms in a non-palliative care population. Personalized therapy can further alleviate these symptoms. There is little evidence in a palliative care population. AIM: To understand the feasibility of repeated personalized virtual reality sessions in a palliative care population. DESIGN: A feasibility randomized control trial. Intervention: personalized virtual reality, Control: non-personalized virtual reality. All participants completed a 4-minute virtual reality session for 4 weeks. At each point, the Edmonton Symptom Assessment System-Revised (scored 0 = none up to 100 = worst) was completed pre- and post- each session. A time-series regression analysis was completed for the overall effect. SETTING/PARTICIPANTS: The research took place in one hospice. The main inclusion criteria was: (1) under the care of the hospice (2) advanced disease (3) over 18 years (4) physically able to use virtual reality set (5) capacity (6) proficient English. RESULTS: Twenty-six participants enrolled, of which 20 (77%) completed all sessions. At baseline, the intervention group had a mean pre- score of 26.3 (SD 15.1) which reduced to 11.5 (SD 12.6) after the first session. At the same time point, the control group had a mean pre- score of 37.9 (SD 21.6) which reduced to 25.5 (SD 17.4) post-session. The mean scores dropped following each session, however this was not significant (mean difference = -1.3, 95% CI: -6.4 to 3.7, p = 0.601). CONCLUSIONS: It is feasible to complete repeated virtual reality sessions within a palliative care population. Future research should explore the structure and effectiveness of virtual reality in a fully powered trial.

Opioid-induced constipation in patients with cancer: a "real-world," multicentre, observational study of diagnostic criteria and clinical features.

The aim of this study was to investigate opioid-induced constipation (OIC) in a large cohort of "real-world" patients with cancer; the objectives were to determine the prevalence of OIC, the utility of a simple screening question, the accuracy of the Rome IV diagnostic criteria, the clinical features of OIC (physical and psychological), and the impact of OIC (quality of life). One thousand patients with cancer were enrolled in the study, which involved completion of the Rome IV diagnostic criteria for OIC, the Bowel Function Index, the Patient Assessment of Constipation Quality of Life questionnaire, and the Memorial Symptom Assessment Scale-Short Form. Participants also underwent a thorough clinical assessment by an experienced clinician (ie, "gold-standard" assessment of OIC). Fifty-nine percent of patients were clinically assessed as having OIC, 2.5% as having another cause of constipation, and 19% as not having constipation but were taking regular laxatives. The simple screening question produced a number of false-negative results (19% of patients), whereas the Rome IV diagnostic criteria had an accuracy of 81.9%. Patients with OIC had more symptoms overall, higher Memorial Symptom Assessment Scale-Short Form subscale scores (and total score), and higher Patient Assessment of Constipation Quality of Life questionnaire subscale scores (and the overall score). Opioid-induced constipation was not associated with demographic factors, cancer diagnosis, performance status, or opioid equivalent dosage: OIC was associated with opioid analgesic, with patients receiving tramadol and transdermal buprenorphine having less constipation. The study confirms that OIC is common among patients with cancer pain and is associated with a spectrum of physical symptoms, a range of psychological symptoms, and an overall deterioration in the quality of life.

Hospital deaths dashboard: care indicators.

OBJECTIVES: We wanted to create a medical/nursing led data collection tool to allow for an ongoing audit of the quality of deaths in a teaching hospital. We wanted to be able to produce a visual summary to monitor our involvement, use of PRN medication, recognition of death, treatment escalation plans and communication aspects. We feel these are good surrogate indicators for quality end-of-life care. METHODS: We designed a purpose built spreadsheet which we have designed as an abbreviated version of the UK national audit tools. We involved a number of our core medical trainees to iterate the data collection so it could be done in a timely manner with a simple training guide. Our collective approach meant we have made this as straightforward as possible to roll out and maintain data collection. RESULTS: We collected 100 cases over a period of 6 months (August 2019 to January 2020). We created a dashboard looking at the core elements of end-of-life care and found bar treatment escalation planning all aspects were completed the majority of the time with near 100% communication to relevant family and friends. CONCLUSIONS: Our sample collection tool provides a useful ongoing indicator for the quality of end-of-life care in the trust and to provide a timely infographic quarterly to feedback to interested members of the trust. We hope to be able to continue over some years to collate themes and trends. We would encourage other hospital teams to adopt our approach.

Emotional intelligence in palliative medical education.

The death of a patient is one of the most stressful situations a healthcare professional can face for the first time at work or during training. Palliative and end of life care education aims to impart appropriate awareness and understanding of key issues arising at the end of life, but also to develop learners' interpersonal skills in leadership, communication and management of their own emotional load. There is a pressing need to be explicit around death, dying and care at the end of life and to equip clinical staff with the ability to manage the emotions that are experienced by their patients, their teams and themselves. Emotional intelligence is considered as a framework for medical educators to use in this setting with presentation of a simulated patient vignette to contextualise this.

Care of the dying person before and during the COVID-19 pandemic: A quality improvement project.

The current COVID-19 pandemic has necessitated the redeployment of NHS staff to acute-facing specialties, meaning that care of dying people is being provided by those who may not have much experience in this area. This report details how a plan, do, study, act (PDSA) approach was taken to implementing improved, standardised multidisciplinary documentation of individualised care and review for people who are in the last hours or days of life, both before and during the COVID-19 pandemic. The documentation and training produced is subject to ongoing review via the specialist palliative care team's continuously updated hospital deaths dashboard, which evaluates the care of patients who have died in the trust. We hope that sharing the experiences and outcomes of this process will help other trusts to develop their own pathways and improve the care of dying people through this difficult time and beyond.

Online training improves medical students' ability to recognise when a person is dying: The ORaClES randomised controlled trial.

BACKGROUND: Recognising dying is a key clinical skill for doctors, yet there is little training. AIM: To assess the effectiveness of an online training resource designed to enhance medical students' ability to recognise dying. DESIGN: Online multicentre double-blind randomised controlled trial (NCT03360812). The training resource for the intervention group was developed from a group of expert palliative care doctors' weightings of various signs/symptoms to recognise dying. The control group received no training. SETTING/PARTICIPANTS: Participants were senior UK medical students. They reviewed 92 patient summaries and provided a probability of death within 72 hours (0% certain survival - 100% certain death) pre, post, and 2 weeks after the training. Primary outcome: (1) Mean Absolute Difference (MAD) score between participants' and the experts' scores, immediately post intervention. Secondary outcomes: (2) weight attributed to each factor, (3) learning effect and (4) level of expertise (Cochran-Weiss-Shanteau (CWS)). RESULTS: Out of 168 participants, 135 completed the trial (80%); 66 received the intervention (49%). After using the training resource, the intervention group had better agreement with the experts in their survival estimates (δMAD = -3.43, 95% CI -0.11 to -0.34, p = <0.001) and weighting of clinical factors. There was no learning effect of the MAD scores at the 2-week time point (δMAD = 1.50, 95% CI -0.87 to 3.86, p = 0.21). At the 2-week time point, the intervention group was statistically more expert in their decision-making versus controls (intervention CWS = 146.04 (SD 140.21), control CWS = 110.75 (SD 104.05); p = 0.01). CONCLUSION: The online training resource proved effective in altering the decision-making of medical students to agree more with expert decision-making.