Introduction: The End of Life Care in Advanced Kidney Disease Framework suggests that renal units should create a renal supportive care register (RSCR) to promote consistent communication with patients and to encourage advance care planning. The aim of the RSCR at Birmingham Heartlands Hospital is to identify patients who are requiring dialysis with a prognosis of less than 12 months. This work aims to explore whether patients were identified appropriately on the RSCR, and if conversations around withdrawal of dialysis and end of life took place.
Methods: We reviewed the inpatient and outpatient consultations of patients who died while listed on the RSCR between 1 January 2016 and 31 December 2018. We recorded the dates when patients were added to the RSCR and when they died. We reviewed conversations around dialysis withdrawal and events at the end of life.
Results and discussion: Data from Proton, the renal team’s coding system, showed that there were 80 deaths of patients listed on the RSCR: 59% were male, 41% were female. The median age at death was 77.5 years (interquartile range (IQR) 12.25 years). Thirty-eight per cent of these patients had an alert on Concerto, the hospital’s main electronic system, informing users that the patient was on the RSCR.
Eighty-eight per cent of patients were listed on the RSCR within 12 months of death; 69% of these were listed on the day they died. For the remaining patients who were listed on the register, Fig 1 illustrates that the median time to death from being placed on the register was 1.75 months (IQR 7.54 months).
Thirty-eight per cent of patients were offered a conversation on withdrawal of dialysis; 70% of these then opted to withdraw. Cited reasons for continuing dialysis after these conversations were families’ refusal to accept palliation and denial. Of those who did not have dialysis formally withdrawn prior to death, there were reports of dialysis being withheld due to low blood pressure and patients being too unwell to come in from home for dialysis.
Eighty-seven per cent had valid ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) forms. Two patients who did not have DNACPR forms received CPR (without return of spontaneous circulation) on the day of their death in hospital. Preferred place of death (PPD) was established in 20% of patients (Fig 2). While the majority of patients asked chose their PPD as home, 65% of patients on the RSCR died in hospital.
We recommend that all patients on the RSCR should have alerts placed on Concerto. This would ensure that the wider hospital, who may not know the patient as well as the renal team, are prompted to think about advance care planning. The literature reinforces that alerts can improve healthcare professionals’ engagement with conversations around resuscitation.2
Conclusion: Our data suggests that the deterioration of these patients may have been unrecognised. While some deaths are likely to be unexpected, we are missing opportunities to engage patients with end-stage renal disease in advance care planning.
Opponents of physician-assisted dying (PAD) view it as modern eugenics and a significant risk to people with disabilities. The involuntary surgical sterilisation (ISS) of girls and young women with intellectual disabilities is an example of eugenics in practice. This article reviews the social and political attitudes toward ISS and PAD in New Zealand, England, and the United States. The attitudes were compared to determine if they demonstrated any indicators of potential PAD-related harm for people with intellectual disabilities. The research identified several issues, which need to be considered to ensure the safety of people with intellectual disabilities if New Zealand was to legalise PAD.
BACKGROUND: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.
METHODS: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties.
RESULTS: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.
CONCLUSIONS: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, 'outside the box' thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.
OBJECTIVES: to establish the accuracy of community nurses' predictions of mortality among older people with multiple long-term conditions, to compare these with a mortality rating index and to assess the incremental value of nurses' predictions to the prognostic tool.
DESIGN: a prospective cohort study using questionnaires to gather clinical information about patients case managed by community nurses. Nurses estimated likelihood of mortality for each patient on a 5-point rating scale. The dataset was randomly split into derivation and validation cohorts. Cox proportional hazard models were used to estimate risk equations for the Revised Minimum Dataset Mortality Risk Index (MMRI-R) and nurses' predictions of mortality individually and combined. Measures of discrimination and calibration were calculated and compared within the validation cohort.
SETTING: two NHS Trusts in England providing case-management services by nurses for frail older people with multiple long-term conditions.
PARTICIPANTS: 867 patients on the caseload of 35 case-management nurses. 433 and 434 patients were assigned to the derivation and validation cohorts, respectively. Patients were followed up for 12 months.
RESULTS: 249 patients died (28.72%). In the validation cohort, MMRI-R demonstrated good discrimination (Harrell's c-index 0.71) and nurses' predictions similar discrimination (Harrell's c-index 0.70). There was no evidence of superiority in performance of either method individually (P = 0.83) but the MMRI-R and nurses' predictions together were superior to nurses' predictions alone (P = 0.01).
CONCLUSIONS: patient mortality is associated with higher MMRI-R scores and nurses' predictions of 12-month mortality. The MMRI-R enhanced nurses' predictions and may improve nurses' confidence in initiating anticipatory care interventions.
Accompanied suicide is a controversial topic with varying practice across Europe; therefore, there is very little guidance on how healthcare professionals should be educated on accompanied suicide. This study implemented an anonymous, cross-sectional online survey to discover the perceptions of final-year MPharm students on accompanied suicide and the factors affecting one’s views, with the aim of investigating the knowledge, awareness and opinions of pharmacy students regarding accompanied suicide, as well as education to pharmacy students. Surveys were disseminated to final-year pharmacy students at Kingston University between January and March 2019. The survey comprised of three sections: Section A consisting of definitions – to determine knowledge of pharmacy students. Section B including case studies – to understand the opinions of pharmacy students and identify influential patient factors. Section C involving demographics – to discover the influential participant factors. An ethics application was submitted and approved prior to conducting this study. The data yielded a total of 111 responses out of a possible 139 (80% response rate); 77.5% participants were unable to correctly define each term given, with many also agreeing their lack of knowledge affected their views. Overall, most pharmacy students disagreed with accompanied suicide, regardless of the patient factors. Additionally, religious participants were more likely to disagree with the patient request (p < 0.03). Three recommendations were concluded to improve the education of pharmacy students: (1) an approved medical organisation to specifically define terminology, (2) include accompanied suicide in the pharmacy syllabus and (3) include lesser known terminal illnesses on the pharmacy syllabus.
Background: Frailty is characterised by increased vulnerability to falls, disability, hospitalisation and care home admission. However, it is relatively reversible in the early stages. Older people living with frailty often have multiple health and social issues which are difficult to address but could benefit from proactive, person-centred care. Personalised care planning aims to improve outcomes through better self-management, care coordination and access to community resources.
Methods: This feasibility cluster randomised controlled trial aims to recruit 400 participants from 11 general practice clusters across Bradford and Leeds in the north of England. Eligible patients will be aged over 65 with an electronic frailty index score of 0.21 (identified via their electronic health record), living in their own homes, without severe cognitive impairment and not in receipt of end of life care. After screening for eligible patients, a restricted 1:1 cluster-level randomisation will be used to allocate practices to the PROSPER intervention, which will be delivered over 12 weeks by a personal independence co-ordinator worker, or usual care. Following initial consent, participants will complete a baseline questionnaire in their own home including measures of health-related quality of life, activities of daily living, depression and health and social care resource use. Follow-up will be at six and 12 months. Feasibility outcomes relate to progression criteria based around recruitment, intervention delivery, retention and follow-up. An embedded process evaluation will contribute to iterative intervention optimisation and logic model development by examining staff training, intervention implementation and contextual factors influencing delivery and uptake of the intervention.
Discussion: Whilst personalised care planning can improve outcomes in long-term conditions, implementation in routine settings is poor. We will evaluate the feasibility of conducting a cluster randomised controlled trial of personalised care planning in a community population based on frailty status. Key objectives will be to test fidelity of trial design, gather data to refine sample size calculation for the planned definitive trial, optimise data collection processes and optimise the intervention including training and delivery.
Although much focus has been on assessing the severity of COVID-19, general practitioners and other community based clinicians also need a working knowledge of symptom management. Symptoms of cough, fever, and breathlessness can be highly distressing even in those who do not have severe disease. Also, treatments for symptoms in severe COVID-19 will be needed for patients whose advance care plan or advance decision to refuse treatment includes a decision not to escalate treatment beyond home based care.
This article summarises key points from the National Institute for Health and Care Excellence (NICE) COVID-19 rapid guideline on managing symptoms (including at the end of life) in the community. The guideline is part of a series of rapid guidelines on COVID-19, developed in collaboration with NHS England and NHS Improvement using interim process and methods. Recommendations are based on evidence and expert opinion, and have been verified as far as possible by NICE.
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The COVID-19 pandemic poses numerous – and substantial – ethical challenges to health and healthcare. Debate continues about whether there is adequate protective equipment, testing and monitoring, and about when a vaccine might become available and social restrictions might be lifted. The thorny dilemmas posed by triage and resource allocation also attract considerable attention, particularly access to intensive care resources, should demand outstrip supply.
But the “COVID fog” clouds more than the intensive care unit. The provision and uptake of non-COVID related treatment is declining, due to the de-prioritisation of some services and interventions, alongside non-COVID patients’ fears of contracting the virus; difficult conversations are being held in suboptimal circumstances; and final farewells and death rituals have been disrupted. Healthcare personnel, meanwhile, are facing moral distress and, for some, difficulties arising from undertaking new roles in unfamiliar settings.
Objectives: To map current practice regarding discussions around resuscitation across England and Scotland in patients with cancer admitted acutely to hospital and to demonstrate the value of medical students in rapidly collecting national audit data.
Methods: Collaborators from the Macmillan medical student network collected data from 251 patient encounters across eight hospitals in England and Scotland. Data were collected to identify whether discussion regarding resuscitation was documented as having taken place during inpatient admission to acute oncology. As an audit standard, it was expected that all patients should be invited to discuss resuscitation within 24 hr of admission.
Results: Resuscitation discussions were had in 43.1% of admissions and of these 64.0% were within 24 hr; 27.6% of all admissions. 6.5% of patients had a “do not attempt resuscitation” order prior to admission with a difference noted between patients receiving palliative and curative treatment (8.5% and 0.39%, respectively, p < .05). Discussions regarding escalation of care took place in only 29.3% of admissions.
Conclusions: These data highlight deficiencies in the number of discussions regarding resuscitation that are being conducted with cancer patients that become acutely unwell. It also demonstrates the value of medical student collaboration in rapidly collecting national audit data.
Introduction: Electronic palliative care coordination systems (EPaCCS) aim to support people approaching the end of life (EOL) to receive consistent care, according to their wishes, that is coordinated effectively across multiple care sectors. They are in use across the UK although empirical evidence into their effectiveness is poor. This paper presents a protocol of a mixed-methods study, to understand how, and by whom, EPaCCS are being used and whether EPaCCS are enabling Healthcare Professionals (HCPs) to coordinate patients’ EOL care.
Methods and analysis: This is a mixed-methods study, carried out within a realist paradigm, to evaluate the impact of an EPaCCS on EOL care as provided by a Clinical Commissioning Group (CCG) in England. This study has two aims: (1) Describe the socio-demographic characteristics of patients who die with an EPaCCS record, their underlying cause of death and place of death and compare these with patients who die without an EPaCCS record. (2) Explore the impact of an EPaCCS on the experience of receiving EOL care for patients and their carers, and understand HCPs’ views and experiences of utilising an EPaCCS to coordinate care for their patients. The study will be conducted in five phases: (1) development of the initial programme theory; (2) focus group with CCG stakeholder board; (3) individual interviews with HCPs, patients, current and bereaved carers; (4) retrospective cohort study of routinely collected data on EPaCCS usage and (5) data analysis and synthesis of study findings.
Ethics and dissemination: The study has been approved by National Health Service South West–Frenchay Research Ethics Committee (REC reference number: 18/SW/0198). Findings will be published in a wide range of outputs targeted at key audiences.
Background/objectives: Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death.
Design and setting: In a proportionally stratified randomly selected sample of long-term care facilities in six European Union countries, nurses and long-term care facility management completed structured after-death questionnaires within 3 months of residents’ death.
Measurements: Nurses assessed pain/dyspnoea with Comfort Assessment in Dying with Dementia scale and checked opioid prescription by chart review. We estimated opioid underuse per country and per symptom and calculated associations of opioid underuse by multilevel, multivariable analysis.
Results: nurses’ response rate was 81.6%, 95.7% for managers. Of 901 deceased residents with pain/dyspnoea reported in the last week, 10.6% had dyspnoea, 34.4% had pain and 55.0% had both symptoms. Opioid underuse per country was 19.2% (95% confidence interval: 12.9–27.2) in the Netherlands, 25.2% (18.3–33.6) in Belgium, 29.3% (16.9–45.8) in England, 33.7% (26.2–42.2) in Finland, 64.6% (52.0–75.4) in Italy and 79.1% (71.2–85.3) in Poland (p < 0.001). Opioid underuse was 57.2% (33.0–78.4) for dyspnoea, 41.2% (95% confidence interval: 21.9–63.8) for pain and 37.4% (19.4–59.6) for both symptoms (p = 0.013). Odds of opioid underuse were lower (odds ratio: 0.33; 95% confidence interval: 0.20–0.54) when pain was assessed.
Conclusion: Opioid underuse differs between countries. Pain and dyspnoea should be formally assessed at the end-of-life and taken into account in physicians orders.
In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the ‘client’. Rather than focusing on the HCWs’ work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered ‘character’ and ‘innate’ caring abilities to be more important than those derived from training. The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.
Objectives: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.
Methods: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly discriminatory staff-reported instruments.
Results: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia, and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24 to 27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = .03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia, and 48% in residents without dementia (P < .001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = .04; other stages of dementia, P = .04; without dementia, P < .001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < .001) and without dementia (P = .003), while the presence and severity of dementia moderated this association (P = .03). Developing “other clinical events” was not associated with comfort.
Conclusions: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia, which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia.
OBJECTIVES: The 2014 Court of Appeals decision with respect to Tracey vs Cambridge University Hospital ('the Tracey judgement') changed the requirements for discussing Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions with patients. This study is a retrospective case note review aiming to identify any changes in practice around discussing DNACPR decisions in hospices following the judgement.
METHODS: 150 case notes from 2013 (before the Tracey judgement) were compared with 150 case notes from 2015 (following the Tracey judgement). These notes came from five hospices in the West Midlands. The notes were analysed to determine if the judgement resulted in changes to how frequently DNACPR decisions were discussed with patients and their families, as well as whether there were any changes in the documentation of reasons for not discussing such decisions.
RESULTS: Discussions with patients around DNACPR decisions increased from 31% to 60% and with relatives from 29% to 59% following the Tracey judgement. Prior to the judgement the most frequently documented reason for not discussing was to avoid distress (23%), whereas after judgement it was patients lacking capacity to engage in such a discussion (40%). There was a lack of consistency and clarity in defining the concept of 'physical or psychological harm'.
CONCLUSIONS: Although DNACPR decisions are being discussed more frequently with patients and families following the Tracey judgement, clarity on what constitutes 'physical or psychological harm' caused by these discussions is still required. Future research must examine whether the judgement is delaying or preventing DNACPR decisions being made.
Advance care planning is an opportunity for patients to express their priorities for future care. NHS England has outlined a commitment to end-of-life care, advocating a shift towards more patient-centred care. The NHS is encouraging the workforce to engage patients in conversations about what is important to them, shifting the focus from 'what is wrong with you' to 'what matters to you'. Traditionally, this was seen as the doctor's role but this conversation can and should happen with the wider skilled medical workforce. The key to advance care planning is to have these conversations early on when patients have the capacity to discuss their preferences for care. Advance care planning can occur in any setting where the patient is comfortable to have the conversation, be that at home, in the GP surgery, in hospital or another setting. Patients with advance care plans are more likely to have their wishes respected, have fewer unwanted interventions, experience reduced transitions between care settings and are more likely to die in their preferred place of death. Healthcare professionals have a duty to offer advance care planning to patients nearing the last phase of life so that care can be delivered to honour individual needs at the end of life.
Objectives: To gain preliminary data regarding the prevalence of proximal deep vein thrombosis (DVT) in those with non-malignant conditions admitted to specialist palliative care units (SPCUs).
Methods: Data were collected as part of a prospective longitudinal observational study in five SPCUs in England, Wales and Northern Ireland (Registration: ISRCTN97567719) to estimate the prevalence of proximal femoral vein DVT in people admitted to SPCUs. The primary outcome for this exploratory substudy was the prevalence of DVT in patients with non-malignant palliative conditions. Consecutive consenting adults underwent bilateral femoral vein ultrasonography within 48 hours of admission. Data were collected on symptoms associated with venous thromboembolism. Patients were ineligible if the estimated prognosis was <5 days. Cross-sectional descriptive analysis was conducted on baseline data and prevalence estimates presented with 95% CIs.
Results: 1390 patients were screened, 28 patients had non-malignant disease and all were recruited. The mean age 68·8 (SD 12·0), range 43–86 years; men 61%; survival mean 86 (SD 108.5) range 1–345 days. No patient had a history of venous thromboembolism. Four (14%) were receiving thromboprophylaxis. Of 22 evaluable scans, 8 (36%, 95% CI: 17% to 59%) showed femoral vein DVT. The level of reported relevant symptoms (leg oedema, leg pain, chest pain and breathlessness) was high irrespective of the presence of DVT.
Conclusions: Our exploratory data indicate one in three people admitted to an SPCU with non-malignant disease had a femoral vein DVT. Although definitive conclusions cannot be drawn, these data justify a larger prospective survey.
Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access.
Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries.
Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs.
Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco).
Participants: Informal carers of decedents who had received palliative care participated in the study.
Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction.
Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.
INTRODUCTION: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people's own homes.
OBJECTIVE: To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.
DESIGN: A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.
SETTING: A hospice in the North East of England, operating in the community, through volunteers.
PARTICIPANTS: Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).
RESULTS: Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.
CONCLUSIONS: Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.
OBJECTIVES: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life.
METHODS: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings.
RESULTS: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and NICE statements presented regarding end-of-life care planning and discussions.
CONCLUSIONS: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity and tensions regarding when these conversations should be initiated and by whom.
Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information.
Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis.
Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record.
Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice.