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Background: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs., Aim: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours., Design: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners., Setting: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland., Results: People who died in Scotland in 2016 ( n  = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified., Conclusion: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

Background and Purpose: Stroke is the second commonest cause of death worldwide and a leading cause of severe disability, yet there are no published trials of palliative care in stroke. To design and evaluate palliative care interventions for people with stroke, researchers need to know what measurable outcomes matter most to patients and families, stroke professionals, and other service providers., Methods: A multidisciplinary steering group of professionals and laypeople managed the study. We synthesized recommendations from respected United Kingdom and international consensus documents to generate a list of outcome domains and then performed a rapid scoping literature review to identify potential outcome measures for use in future trials of palliative care after stroke. We then completed a 3-round, online Delphi survey of professionals, and service users to build consensus about outcome domains and outcome measures. Finally, we held a stakeholder workshop to review and finalize this consensus., Results: We generated a list of 36 different outcome domains from 4 key policy documents. The rapid scoping review identified 43 potential outcome measures that were used to create a shortlist of 16 measures. The 36 outcome domains and 16 measures were presented to a Delphi panel of diverse healthcare professionals and lay service users. Of 48 panelists invited to take part, 28 completed all 3 rounds. Shared decision-making and quality of life were selected as the most important outcome domains for future trials of palliative care in stroke. Additional comments highlighted the need for outcomes to be feasible, measurable, and relevant beyond the initial, acute phase of stroke. The stakeholder workshop endorsed these results., Conclusions: Future trials of palliative care after stroke should include pragmatic outcome measures, applicable to the evolving patient and family experiences after stroke and be inclusive of shared decision-making and quality of life.

Objectives: To analyse patterns of use and costs of unscheduled National Health Service (NHS) services for people in the last year of life., Design: Retrospective cohort analysis of national datasets with application of standard UK costings., Participants and Setting: All people who died in Scotland in 2016 aged 18 or older (N=56 407)., Main Outcome Measures: Frequency of use of the five unscheduled NHS services in the last 12 months of life by underlying cause of death, patient demographics, Continuous Unscheduled Pathways (CUPs) followed by patients during each care episode, total NHS and per-patient costs., Results: 53 509 patients (94.9%) had at least one contact with an unscheduled care service during their last year of life (472 360 contacts), with 34.2% in the last month of life. By linking patient contacts during each episode of care, we identified 206 841 CUPs, with 133 980 (64.8%) starting out-of-hours. People with cancer were more likely to contact the NHS telephone advice line (63%) (χ 2 (4)=1004, p<0.001) or primary care out-of-hours (62%) (χ 2 (4)=1924,p<0.001) and have hospital admissions (88%) (χ 2 (4)=2644, p<0.001). People with organ failure (79%) contacted the ambulance service most frequently (χ 2 (4)=584, p<0.001). Demographic factors associated with more unscheduled care were older age, social deprivation, living in own home and dying of cancer. People dying with organ failure formed the largest group in the cohort and had the highest NHS costs as a group. The cost of providing services in the community was estimated at 3.9% of total unscheduled care costs despite handling most out-of-hours calls., Conclusions: Over 90% of people used NHS unscheduled care in their last year of life. Different underlying causes of death and demographic factors impacted on initial access and subsequent pathways of care. Managing more unscheduled care episodes in the community has the potential to reduce hospital admissions and overall costs., Competing Interests: Competing interests: No support from any additional organisations for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Objective: Multimorbidity is increasingly common in the last year of life, and associated with frequent hospital admissions. The epidemiology is well described, but patient perspectives are less understood. We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care., Design: Multicentre study including serial, multiperspective interviews with patients and their family carers; an interpretive analysis of experiences and understanding of living with advanced multimorbidity., Participants: We recruited patients and their family carers using established UK clinical guidance for the identification of people anticipated to be in their last year of life., Settings: An acute admissions unit in a Scottish regional hospital; a large English general practice; a London respiratory outpatient clinic., Results: We analysed 87 interviews with 37 patients and 17 carers. They struggled with multiple changing medications, multiple services better aligned with single conditions such as cancer, and a lack of coordination and continuity of care. Family carers spoke of physical, mental and emotional exhaustion and feeling undervalued by professionals. Patients and carers frequently saw deteriorating health as part of 'growing old'. Many used a 'day-to-day' approach to self-management that hindered engagement with advance care planning and open discussions about future care. 'Palliative care' and 'dying soon' were closely related concepts for many patients, carers and professionals, so rarely discussed., Conclusions: Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Background: Do not attempt cardiopulmonary resuscitation (DNACPR) decisions aim to prevent unwanted and/or clinically inappropriate CPR attempts. As the NHS Scotland DNACPR policy has become embedded into clinical practice there has been greater awareness of the need to discuss DNACPR decisions with patients who would not benefit from CPR; however, little is known about how nursing and medical staff experience these discussions., Aim: This study aimed to explore clinician experiences of discussing DNACPR decisions with patients in a Scottish specialist palliative care inpatient and community setting., Method: Semi-structured face-to-face interviews were held with 11 specialist palliative care clinicians. These were transcribed and thematic analysis was undertaken., Results: The clinicians found DNACPR discussions challenging and experienced anxiety before discussions took place. They found it most appropriate to discuss DNACPR in the context of wider end-of-life discussions and in response to patient triggers. Patient-clinician relationships were complex and could make the conversation easier or more difficult. Negative patient reactions were rare and discussions were thought to provide some patients with a sense of relief., Conclusion: The clinicians reported finding DNACPR discussions worthwhile and that they continue to discuss DNACPR decisions with patients despite the challenges. Recommendations for discussing DNACPR with patients are outlined.

Background: Care coordination is defined as good communication between professionals to enable access to services based on need., Aims: To explore patients' experience of care coordination in order to inform current debates on how best to coordinate care and deliver services in end-of-life for patients with lung cancer and those with chronic obstructive pulmonary disease (COPD)., Methods: A qualitative study involving serial interviews was performed in 18 patients recruited from three hospital outpatient clinics situated in a hospital. Interviews were transcribed verbatim and data were analysed thematically., Results: Data comprised 38 interviews. Patients experiencing services related to lung cancer reported good access enabled by the involvement of a keyworker. This contrasted with COPD patients' experiences of services. The keyworker coordinated care between and within clinical settings, referred patients to community palliative care services, helped them with financial issues, and provided support., Conclusions: For patients with lung cancer, the keyworker's role augmented access to various services and enabled care based on their needs. The experiences of patients with COPD highlight the importance of providing a keyworker for this group of patients in both secondary and primary care.

Background: Advance care planning is being promoted as a central component of end-of-life policies in many developed countries, but there is concern that professionals find its implementation challenging., Aim: To assess the feasibility of implementing advance care planning in UK primary care., Design of Study: Mixed methods evaluation of a pilot educational intervention., Setting: Four general practices in south-east Scotland., Method: Interviews with 20 GPs and eight community nurses before and after a practice-based workshop; this was followed by telephone interviews with nine other GPs with a special interest in palliative care from across the UK., Results: End-of-life care planning for patients typically starts as an urgent response to clear evidence of a short prognosis, and aims to achieve a 'good death'. Findings suggest that there were multiple barriers to earlier planning: prognostic uncertainty; limited collaboration with secondary care; a desire to maintain hope; and resistance to any kind of 'tick-box' approach. Following the workshop, participants' knowledge and skills were enhanced but there was little evidence of more proactive planning. GPs from other parts of the UK described confusion over terminology and were concerned about the difficulties of implementing inflexible, policy-driven care., Conclusion: A clear divide was found between UK policy directives and delivery of end-of-life care in the community that educational interventions targeting primary care professionals are unlikely to address. Advance care planning has the potential to promote autonomy and shared decision making about end-of-life care, but this will require a significant shift in attitudes.

Background: Since 2012, all GP practices across Scotland have been supported to take a systematic approach to end-of-life care, by helping them to identify more patients for palliative care through a Palliative Care Directed Enhanced Service (DES). We aimed to understand the impact of this initiative. Methods: Routine quantitative data from the 2012/13, and 2013/14 DES were collected from regional health boards, analysed and discussed. Qualitative data were collected from a sample of 2012/13 DES returns and analysed using Thematic Analysis. Results: Data were received from 512 practices in nine Scottish Health boards for the 2012-13 DES and 638 practices in 11 Health boards for 2013-14. A sample of 90 of the returns for 2012-13 was selected for qualitative analysis. In 2012-13, 72 % of patients who died of cancer were listed on the palliative care register (PCR) before death while 27 % of patients who died as a result of non-malignant conditions were listed on the PCR. In 2013-14, cancer identification remained the same but identification of people dying with other long-term conditions had improved to 32.5 %. We identified several key issues needed to improve palliative care in the community. The need for training to identify patients with palliative care needs (particularly non-cancer); communication skills training; improvements in sharing information across the NHS; under-resource of and lack of coordination with district nurses; improvements in information technology; and tools for working with enlarged palliative care registers. Conclusions: The DES helped more patients with long-term conditions (LTC) receive generalist palliative care. Approaching generalist palliative care as anticipatory care could facilitate communication between GPs and patients/ families and remove some barriers to early identification of palliative care needs. Improvement of information technology and use of identification tools like the SPICT™ may improve professionals' communication with each other and help may make identification and management of patients easier. [ABSTRACT FROM AUTHOR]

Background Coordination of care for individuals with advanced progressive conditions is frequently poor. Aim To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life. Design and setting A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service. Method Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed. Results Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators. Conclusion Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly. [ABSTRACT FROM AUTHOR]