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Context Patient-student relationships are at the heart of Longitudinal Integrated Clerkships (LICs). Outcomes for students and preceptors are beneficial, but patient outcomes remain unclear. This systematic literature review explored the current evidence base of patient outcomes in an LIC. Patient outcomes were defined as issues related to patient safety, clinical effectiveness or patient experience.Seven bibliographic databases were searched. A wider search strategy included a hand search of three medical education journals' previous issues, backward/forward citation searching of included studies and of a relevant systematic review. Included studies were quality appraised, and assessed for their strength and level of evidence. A qualitative data synthesis was performed.Databases searches identified 7237 titles. Following the removal of duplicates, titles and abstracts were reviewed against the inclusion criteria. Forty-eight studies had a full-text review. Nineteen met the inclusion criteria. Seven studies were included from the wider search strategy. From the 26 included studies, two major themes were identified. (1) 'A trusting patient-student relationship' contains the sub-themes: 'care and compassion', 'patient education and empowerment' and 'the loss of the student as 'my' doctor'. (2) 'The student acts as an agent of change for the patient' contains the sub-themes: 'patient advocacy', 'supporting the patient to navigate the healthcare system', 'communication between patient and healthcare professional' and 'enhancement of preceptors' care, healthcare services and communities'.LICs provide educational continuity allowing the creation of a trusting patient-student relationship. This relationship leads to students becoming agents of change for patients by enhancing patient outcomes. This review provides further evidence on the benefits of having an LIC as part of the medical education curricula, and implications for its successful delivery. Further research is needed to explore educationally-induced benefits for patients and look at objective assessments of patient health outcomes.

To explore the views of people with Parkinson’s disease and relatives on planning for the future and advance care planning. Three main themes arose from interviews with the participants. This consisted of awareness of advance care planning, uncertainty of living with Parkinson’s disease, and the salience of the decision-making process in advance care planning. Advance care planning in Parkinson’s disease is a complex process and individual to the person involved. Advance care planning gives individuals with capacity the option of planning for their future, and anticipating future decision-making about their treatment or care should they then lose capacity. People with Parkinson’s disease (PD) may develop significant physical and cognitive problems as the disease progresses, which creates a great need for, but significant challenges to, advance care planning. As a result, we set out to explore the views of people with PD and relatives on planning for the future and advance care planning. Qualitative study with semi-structured interviews of thirty-three people with PD and their relatives in the North-East of England. Interviewees with PD were generally not keen to engage with advance care planning in the present, in comparison to the future. Three main themes arose from the data in identifying why this may be the case: (1) ‘Awareness’—which included the limited awareness on purpose of advance care planning and Parkinson’s disease; (2) ‘Uncertainty’—the uncertainty of living with PD and of life; and (3) ‘Salience’—the complex decision-making processes that interviewees engaged in, which were highly variable. The use of advance care planning in PD is influenced by its perception amongst people with PD and their relatives. Health professionals have an important role in raising the salience of health care planning.

BackgroundFrailty is associated with advancing age and increases the risk of adverse outcomes and death. Routine assessment of frailty is becoming more common in a number of healthcare settings, but not in palliative care, where performance scales (eg, the Australia-modified Karnofsky Performance Status Scale (AKPS)) are more commonly employed. A shared understanding of performance and frailty measures could aid interspecialty collaboration in both end-of-life care research and clinical practice.AimsTo identify and synthesise evidence comparing measures of performance routinely collected in palliative care with the Clinical Frailty Scale (CFS), and create a conversion chart to support interspecialty communication.MethodsA scoping literature review with comprehensive searches of PubMed, Web of Science, Ovid SP, the Cochrane Library and reference lists. Eligible articles compared the CFS with the AKPS, Palliative Performance Scale (PPS), Karnofsky Performance Scale or Eastern Cooperative Oncology Group Performance Status or compared these performance scales, in patients aged >18 in any setting.ResultsSearches retrieved 3124 articles. Two articles directly compared CFS to the PPS. Thirteen studies translated between different performance scores, facilitating subsequent conversion to CFS, specifically: AKPS/PPS 10/20=very severe frailty, AKPS/PPS 30=severe frailty, AKPS/PPS 40/50=moderate frailty, AKPS/PPS60=mild frailty.ConclusionWe present a tool for converting between the CFS and performance measures commonly used in palliative care. A small number of studies provided evidence for the direct translation between CFS and the PPS. Therefore, more primary evidence is needed from a wider range of population settings, and performance measures to support this conversion.

The demand for current practical advice in how to conduct research by videoconference is internationally recognised. Many researchers in medical education are transitioning to using online methods for the first time, through design or necessity. This paper aims to provide practical advice on utilising videoconference technology for research, from design to execution. The tips include how to manage important elements such as ethics approval, online etiquette, contingency planning, technology management, and data capture. Recommendations include how to promote participant engagement with online data collection methods, in some cases paralleling the literature around synchronous online learning. The tried and tested tips have been developed by the authors based on their research experience, a literature review and the results of a post-participation survey of medical students on their experiences engaging in research online via videoconference.

ObjectiveTo explore the attitudes towards implantable cardioverter defibrillator (ICD) deactivation and initiation of deactivation discussions among patients, relatives and clinicians.DesignA multiphase qualitative study consisting of in situ hospital ICD clinic observations, and semistructured interviews of clinicians, patients and relatives. Data were analysed using a constant comparative approach.SettingOne tertiary and two district general hospitals in England.ParticipantsWe completed 38 observations of hospital consultations prior to ICD implantation, and 80 interviews with patients, family members and clinicians between 2013 and 2015. Patients were recruited from preimplantation to postdeactivation. Clinicians included cardiologists, cardiac physiologists, heart failure nurses and palliative care professionals.ResultsFour key themes were identified from the data: the current status of deactivation discussions; patients’ perceptions of deactivation; who should take responsibility for deactivation discussions and decisions; and timing of deactivation discussions. We found that although patients and doctors recognised the importance of advance care planning, including ICD deactivation at an early stage in the patient journey, this was often not reflected in practice. The most appropriate clinician to take the lead was thought to be dependent on the context, but could include any appropriately trained member of the healthcare team. It was suggested that deactivation should be raised preimplantation and regularly reviewed. Identification of trigger points postimplantation for deactivation discussions may help ensure that these are timely and inappropriate shocks are avoided.ConclusionsThere is a need for early, ongoing and evolving discussion between ICD recipients and clinicians regarding the eventual need for ICD deactivation. The most appropriate clinician to instigate deactivation discussions is likely to vary between patients and models of care. Reminders at key trigger points, and routine discussion of deactivation at implantation and during advance care planning could prevent distressing experiences for both the patient and their family at the end of life.

Advance care planning gives individuals with capacity the option of planning for their future, and anticipating future decision-making about their treatment or care should they then lose capacity. People with Parkinson's disease (PD) may develop significant physical and cognitive problems as the disease progresses, which creates a great need for, but significant challenges to, advance care planning. As a result, we set out to explore the views of people with PD and relatives on planning for the future and advance care planning.Qualitative study with semi-structured interviews of thirty-three people with PD and their relatives in the North-East of England.Interviewees with PD were generally not keen to engage with advance care planning in the present, in comparison to the future. Three main themes arose from the data in identifying why this may be the case: (1) 'Awareness'-which included the limited awareness on purpose of advance care planning and Parkinson's disease; (2) 'Uncertainty'-the uncertainty of living with PD and of life; and (3) 'Salience'-the complex decision-making processes that interviewees engaged in, which were highly variable.The use of advance care planning in PD is influenced by its perception amongst people with PD and their relatives. Health professionals have an important role in raising the salience of health care planning.

Background Frailty, a decline in reserve, strength and endurance through deficit accumulation, is very common and highly associated with morbidity and mortality. Understanding how to provide palliative care for frail individuals is an international priority. Despite this, frailty is not mentioned in the current UK Palliative Medicine Specialty training curriculum (UK-PMSTC). Aim To synthesise the literature and establish expert consensus on what should be included in a frailty subsection of the UK-PMSTC. This could be referenced by the new curriculum which is due to come into practice in 2022. Methods Setting/Participants The Delphi panel were Subject Matter Experts(SME): Specialist Palliative Medicine Consultants (n=14) and Trainees (n=10) with representation from seven hospital trusts (n=19), seven community services (n=13), nine inpatient units/hospices (n=18) and care home services (n=one) (individuals work across multiple sites). Design Literature Meta-synthesis produced a draft curriculum with Bologna based learning outcomes (LO). The Delphi Study used standard methods and asked SME to rate LO importance for specialist-training completion and provided opportunity to add LO. Process was repeated until 70% consensus was achieved in over 90% of LO. SME divided LO into specific (for inclusion in a frailty subsection) or generic (applicable to other palliative conditions). Results The meta-synthesis produced 113 LO, two were added by SME. Three Delphi rounds concluded 86 LO were specific to frailty whilst 29 were generic. Of the 86 items; 47 were considered essential, 34 desirable and five unnecessary. LO were arranged using clinical practice domains and bloom’s taxonomy. Conclusions We have developed a frailty curriculum that could be used as a subsection for the UK-PMSTC, highlighting the complex and unique palliative needs of those with frailty. Future research is required to inform implementation, educational-delivery and service-provision.

ObjectivesFrailty is common and highly associated with morbidity and mortality, a fact that has been highlighted by COVID-19. Understanding how to provide palliative care for frail individuals is an international priority, despite receiving limited mention in Palliative Medicine curricula or examinations worldwide. This study aimed to synthesise evidence and establish expert consensus on what should be included in a Palliative-Medicine Specialist Training Curriculum for frailty.MethodsLiterature Meta-synthesis conducted by palliative medicine, frailty and education experts produced a draft curriculum with Bologna based Learning-Outcomes. A Delphi study asked experts to rate the importance of Learning-Outcomes for specialist-training completion and propose additional Learning-Outcomes. This process was repeated until 70% consensus was achieved for over 90% of Learning-Outcomes. Experts divided Learning-Outcomes into specific (for inclusion in a frailty subsection) or generic (applicable to other palliative conditions). The Delphi panel was Subject Matter Experts: Palliative-Medicine Consultants (n=14) and Trainees (n=10), representing hospital, community, hospice and care home services and including committee members of key national training organisations. A final reviewing panel of Geriatric Medicine Specialists including experts in research methodology, national training requirements and frailty were selected.ResultsThe meta-synthesis produced 114 Learning-Outcomes. The Delphi Study and Review by Geriatric Medicine experts resulted in 46 essential and 33 desirable Learning-Outcomes.ConclusionsThis frailty curriculum is applicable internationally and highlights the complex and unique palliative needs of frail patients. Future research is required to inform implementation, educational delivery and service provision.

Background: Advance Care Planning (ACP) allows people the opportunity to plan for a time when they may lose capacity. The aim of this study was to determine the extent people with Parkinson’s disease (PD) were aware of ACP, existing plans they held and to explore their own views, as well as their relatives, on planning for the future. Methods: This was a sequential explanatory mixed methods study with a postal quantitative survey to establish awareness and engagement with planning for the future; and qualitative semi-structured interviews to explore the views of people with PD and their relatives on ACP and future plans. Results: 104 questionnaires were analyzed. 76% of respondents had not heard of ACP, while 69% expressed an interest in finding out more about ACP. 78% had a will, and 23% had appointed lasting power of attorneys. All interviewees acknowledged engaging in some aspect of planning. Plans were mostly practical as opposed to health-care related. Interviewees expressed a preference for ACP to be carried out by their PD team, at home, and at a time relevant to their condition. Conclusion: The awareness and understanding of ACP in people with PD is low. While there is desire to be better informed about ACP, this did not translate into desire to engage in ACP. Health professionals should identify people for whom ACP may serve a positive purpose, and proactively address ACP as a continuum with them, while ensuring awareness is raised about ACP, and there is access for who are interested.

BackgroundIn the UK, most people with dementia die in the community and they often receive poorer end-of-life care than people with cancer.ObjectiveThe overall aim of this programme was to support professionals to deliver good-quality, community-based care towards, and at, the end of life for people living with dementia and their families.DesignThe Supporting Excellence in End-of-life care in Dementia (SEED) programme comprised six interlinked workstreams. Workstream 1 examined existing guidance and outcome measures using systematic reviews, identified good practice through a national e-survey and explored outcomes of end-of-life care valued by people with dementia and family carers (n = 57) using a Q-sort study. Workstream 2 explored good-quality end-of-life care in dementia from the perspectives of a range of stakeholders using qualitative methods (119 interviews, 12 focus groups and 256 observation hours). Using data from workstreams 1 and 2, workstream 3 used co-design methods with key stakeholders to develop the SEED intervention. Worksteam 4 was a pilot study of the SEED intervention with an embedded process evaluation. Using a cluster design, we assessed the feasibility and acceptability of recruitment and retention, outcome measures and our intervention. Four general practices were recruited in North East England: two were allocated to the intervention and two provided usual care. Patient recruitment was via general practitioner dementia registers. Outcome data were collected at baseline, 4, 8 and 12 months. Workstream 5 involved economic modelling studies that assessed the potential value of the SEED intervention using a contingent valuation survey of the general public (n = 1002). These data informed an economic decision model to explore how the SEED intervention might influence care. Results of the model were presented in terms of the costs and consequences (e.g. hospitalisations) and, using the contingent valuation data, a cost–benefit analysis. Workstream 6 examined commissioning of end-of-life care in dementia through a narrative review of policy and practice literature, combined with indepth interviews with a national sample of service commissioners (n = 20).SettingThe workstream 1 survey and workstream 2 included services throughout England. The workstream 1 Q-sort study and workstream 4 pilot trial took place in North East England. For workstream 4, four general practices were recruited; two received the intervention and two provided usual care.ResultsCurrently, dementia care and end-of-life care are commissioned separately, with commissioners receiving little formal guidance and training. Examples of good practice rely on non-recurrent funding and leadership from an interested clinician. Seven key components are required for good end-of-life care in dementia: timely planning discussions, recognising end of life and providing supportive care, co-ordinating care, effective working with primary care, managing hospitalisation, continuing care after death, and valuing staff and ongoing learning. Using co-design methods and the theory of change, the seven components were operationalised as a primary care-based, dementia nurse specialist intervention, with a care resource kit to help the dementia nurse specialist improve the knowledge of family and professional carers. The SEED intervention proved feasible and acceptable to all stakeholders, and being located in the general practice was considered beneficial. None of the outcome measures was suitable as the primary outcome for a future trial. The contingent valuation showed that the SEED intervention was valued, with a wider package of care valued more than selected features in isolation. The SEED intervention is unlikely to reduce costs, but this may be offset by the value placed on the SEED intervention by the general public.LimitationsThe biggest challenge to the successful delivery and completion of this research programme was translating the ‘theoretical’ complex intervention into practice in an ever-changing policy and service landscape at national and local levels. A major limitation for a future trial is the lack of a valid and relevant primary outcome measure to evaluate the effectiveness of a complex intervention that influences outcomes for both individuals and systems.ConclusionsAlthough the dementia nurse specialist intervention was acceptable, feasible and integrated well with existing care, it is unlikely to reduce costs of care; however, it was highly valued by all stakeholders (professionals, people with dementia and their families) and has the potential to influence outcomes at both an individual and a systems level.Future workThere is no plan to progress to a full randomised controlled trial of the SEED intervention in its current form. In view of new National Institute for Health and Care Excellence dementia guidance, which now recommends a care co-ordinator for all people with dementia, the feasibility of providing the SEED intervention throughout the illness trajectory should be explored. Appropriate outcome measures to evaluate the effectiveness of such a complex intervention are needed urgently.Trial registrationCurrent Controlled Trials ISRCTN21390601.FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research, Vol. 8, No. 8. See the NIHR Journals Library website for further project information.

Background Improved understanding of how to provide palliative care to the growing number of people living and dying with frailty is an international priority. Appropriate models of care may have similarities and differences to existing specialist palliative care (SPC) provision. Patients who currently access SPC may subjectively be described as frail; however, there is limited data on actual frailty prevalence and how frailty is associated with demographics, diagnoses and outcomes. Methods Specific measures of frailty are not routinely recorded in SPC; therefore, measures of performance that are consistently collected were mapped to frailty level. Hospices North East (a collaborative of independent hospices) have an established dataset detailing the care they provide for whom. Analysis of this dataset established levels of frailty and its relationships. Results The Australia-Modified Karnofsky Performance Status (AKPS) can be mapped to Rockwood’s Clinical Frailty Scale to provide a proxy measure of frailty. 520 discharges or deaths (from 455 patients) occurred in three independent hospices in the Northeast of England from April 1st 2017 to March 31st 2018. Admission AKPS was available on 420 discharges or deaths (from 407 patients). On admission to the hospice the prevalence of very severe frailty (AKPS 10–20) was 26.4%; severe frailty (AKPS 30) was 11.4%; moderate frailty (AKPS 40–50) was 35.5% and mild frailty (AKPS 60) was 17.6%. One-off high levels of frailty and progressively increasing frailty are detrimentally related to prognosis and length of stay. Conclusions There is a significant burden of frailty in the current hospice in-patient population. Therefore, much may be learned from contemporary service provision when considering applicable future palliative care models for those with frailty. As with current patients a two-tier in-patient model comprising of both intensive medically led short stay units and nurse led longer stay units or community beds may be useful.

This article explores new and innovative ways of delivering palliative and end-of-life care (EoLC) within the acute hospital setting. Severe financial pressures in the NHS and social care, combined with the increasing clinical complexity of patients, have raised concerns about the quality of EoLC in hospitals. The creation of hospital palliative care units (PCUs) and other improvement initiatives will be described across two large acute hospital trusts which resulted in a rating of ‘Outstanding’ by the Care Quality Commission (CQC) for their delivery of end-of-life services.

There is little in the literature describing hospital specialist palliative care units (PCUs) within the NHS. This paper describes how specialist PCUs can be set up within and be entirely funded by the NHS, and outlines some of the challenges and successes of the units. Having PCUs within hospitals has offered patients increased choice over their place of care and death; perhaps not surprisingly leading to a reduced death rate in the acute hospital. However, since the opening of the PCUs there has also been an increased home death rate. The PCUs are well received by patients, families and other staff within the hospital. We believe they offer a model for excellence in cost-effective inpatient specialist palliative care within the NHS.

Background When first introduced, the Modern Matron role was designed to have authority on leading on clinical strategy and governance, while also being an active presence on wards and in communities (Department of Health, 2000). Aim As part of a wider partnership that established a multi-site palliative care hospital liaison team and a rapid response service, an innovative NHS Foundation Trust and a leading charity identified that a Modern Matron in Palliative and End of Life Care could support a joint strategy to improve care locally. Method Several studies indicate variation in how Modern Matron roles are implemented in different areas (Savage & Scott, 2004; Read, Ashman, Scott et al., 2004). As the role is untested within a palliative care context, this work aims to better understand how this role works in practice. To explore this, an in-depth, case study interview was conducted with the Modern Matron in Palliative and End of Life Care. Results Thematic analysis identified three priorities for the role: Linking strategy to day–to–day delivery through clinical leadership Creating a seamless service between hospital and community Value in partnership working. Further, the Modern Matron is working to build nursing teams’ confidence in taking appropriate risk to enable improved patient outcomes. Conclusion The interview indicates that using clinical leadership skills to create tangible links between strategy and day-to-day practice, and bridging care between hospital and community are key priorities for the Modern Matron for Palliative and End of Life Care role. The impact will be explored further in a future evaluation of the wider partnership.

Context Good judgement and the ability to make complex decisions are key attributes of a skilled professional. There has been limited study of doctors and their decision making, particularly in relation to making complex decisions. The study aims were to understand how trainee doctors develop practical wisdom through investigating their approach to difficult decision making, understanding the influences on the development of practical wisdom, and identifying potential interventions that may help develop this further. Methods Constructing an understanding of the process of developing practical wisdom was analysed within a social constructivist frame. The study investigated trainee doctors at different stages of their careers. Qualitative semi-structured interviews were used to explore the approaches doctors take to difficult decision making, as well as the key training influences in learning these skills. Constant comparative analysis was carried out within a grounded theory approach. Results Key elements emerged from the data regarding the doctors themselves and the environments they worked in that assisted in developing decision making. This led to the construction of a conceptual model setting out the development of practical wisdom among trainee doctors. The model describes a process of gaining experience in decision making, moderated by key external and internal influences. The important roles of self-efficacy and agency (relational) are highlighted as key enablers of the process. Discussion The implications of this model are considered in relation to postgraduate training of doctors. The importance of training doctors to be self-regulated learners in learning environments that support their development is highlighted. Aspects of the clinical learning environment (structure) such as rotation structures, the culture, supervision and feedback can all be enhanced. Self-efficacy and relational agency, alongside other internal influences, are key factors in accelerating development of practical wisdom. Other studies have shown that these factors can be improved with targeted interventions.

Background shared decision-making (SDM) has been recommended as the gold standard for decision making in end of life care when decisions may be complex and involve multiple possible courses of action. The perspectives of patients, relatives and staff members about decision making at the end of life on hospital wards have been little researched in reaching this recommendation. This presentation analyses the practice of end of life care decision making on hospital wards from the perspectives of patients, relatives and healthcare staff. Methods data collection comprised ethnographic non-participant observation of 280 hours on two acute hospital wards and 36 semi-structured interviews with staff members, relatives, and patients thought to be approaching the end of life. Data were analysed using a constructivist grounded theory approach. Results decision making is an important part of end of life care. However, this research suggests that decision making per se is not the priority of patients and relatives. Instead, the crucial thing is taking part in discussion and being kept informed by staff members. Ongoing dialogue to establish and maintain a shared understanding between healthcare professionals and those who receive care is often the real priority for patients and relatives. Conclusions discussion between patients, relatives and healthcare professionals must be prioritised in clinical practice. Without shared understanding, gained through ongoing dialogue, shared decision making is impossible. Senior healthcare staff must demonstrate such behaviour to their junior colleagues. An environment that supports ongoing dialogue is also needed. Recommendations for clinical practice and future research will be made.

Background Much deep learning is about thinking, talking, reflecting and shaping ideas through interactions with others. ‘Death cafes’ are examples of modified ‘World Cafe’ methods designed to create an informal, relaxed atmosphere where conversation allows people to recognise their own personal values, share knowledge and understand the world around them. This project was created to determine if this could be applied to healthcare professional development. Methods Two ‘death cafes’ were run, one with a Palliative Care team and one a group of hospital-based doctors. Groups of 3–6 people sat at tables with refreshments and a set of cards with stimulus questions on them related to death and end of life care. There was then informal discussion at the tables with people sharing their experiences and gaining new insights based on the group’s response to questions. After the Cafe participants were invited to complete an evaluation looking at its potential benefits, relevance to their role and suggested improvements. Results All participants saw benefits of using the Cafe for their learning. They reported the relaxed atmosphere generated open and interesting conversation and prompted discussion about end of life. The majority felt more confident in discussing death with patients and their families afterwards, including 77% of the Palliative Care team. Many reported they could use this format in their roles for wider team training sessions, medical student teaching or with certain patient groups. Conclusions Death cafes proved to be an effective tool for staff development and increased healthcare professionals’ confidence in discussing death. We will now expand this through using a similar format as an educational tool with medical students. The sessions will focus on training in end of life care; the process will be evaluated in terms of design and learning gain. The results will be available for the conference.

Background: A proportion of newly qualified doctors report feeling unprepared to manage patients with palliative care and end-of-life needs. This may be related to barriers within their institution during undergraduate training. Information is limited regarding the current organisation of palliative care teaching across UK medical schools. Aims: To investigate the evolution and structure of palliative care teaching at UK medical schools. Design: Anonymised, web-based questionnaire. Settings/participants: Results were obtained from palliative care course organisers at all 30 UK medical schools. Results: The palliative care course was established through active planning (13/30, 43%), ad hoc development (10, 33%) or combination of approaches (7, 23%). The place of palliative care teaching within the curriculum varied. A student-selected palliative care component was offered by 29/30 (97%). All medical schools sought student feedback. The course was reviewed in 26/30 (87%) but not in 4. Similarly, a course organiser was responsible for the palliative care programme in 26/30 but not in 4. A total of 22 respondents spent a mean of 3.9 h (median 2.5)/week in supporting/delivering palliative care education (Conclusion: Development, organisation, course evaluation and funding for palliative care teaching at UK medical schools are variable. This may have implications for delivery of effective palliative care education for medical students.

BackgroundEffective training at medical school is essential to prepare new doctors to safely manage patients with palliative care (PC) and end of life care (EOLC) needs. The contribution of undergraduate PC course organisers is central but their collective views regarding role are unknown.ObjectiveTo survey attitudes of PC course organisers regarding their course, organisation, the adequacy of training provided and level of personal satisfaction.MethodsAn anonymised, multifactorial, web-based questionnaire was devised, tested, modified and then sent to lead PC course organisers at all UK medical schools.ResultsData were obtained from all 30 UK medical schools. Organisers agreed/strongly agreed (=agreed) that their PC course was highly rated by students (26, 87%). 25 (83%) agreed their course ‘enabled misconceptions and fears about PC, death, dying and bereavement to be addressed’, ‘delivered quality PC training’ (23, 77%), ‘fulfilled General Medical Council requirements’ (19, 63%), ‘prepared students well to care for patients with PC/EOLC needs’ (18, 60%) and ‘enabled students to visit a hospice and see the role of doctors in caring for the dying’ (17, 57%). Concerns were limited capacity to accommodate students (agreed 20, 66%) and variability in teaching according to location (15, 50%). Most agreed their institution recognised PC training as important (22, 73%), they felt supported by colleagues (21, 70%) and experienced cooperation between stakeholders (20, 67%). All agreed that PC training was essential for undergraduates, while 29 (97%) supported inclusion of a hospice visit in the curriculum. 27 agreed that their role was satisfying (90%), 3 disagreed (10%).ConclusionsApproximately two-thirds of organisers were generally positive about their PC course, institution and role. A minority expressed concerns; these may reflect suboptimal PC training at their medical school and poor preparation of new doctors.

BackgroundImplantable cardioverter defibrillators (ICDs) are recommended for patients at high risk of sudden cardiac death or for survivors of cardiac arrest. All ICDs combine a shock function with a pacing function to treat fast and slow heart rhythms, respectively. The pacing function may be very sophisticated and can provide so-called cardiac resynchronisation therapy for the treatment of heart failure using a pacemaker (cardiac resynchronisation therapy with pacemaker) or combined with an ICD [cardiac resynchronisation therapy with defibrillator (CRT-D)]. Decision-making about these devices involves considering the benefit (averting sudden cardiac death), possible risks (inappropriate shocks and psychological problems) and the potential need for deactivation towards the end of life.ObjectivesTo explore patients’/relatives’ and clinicians’ views/experiences of decision-making about ICD and CRT-D implantation and deactivation, to establish how and when ICD risks, benefits and consequences are communicated to patients, to identify individual and organisational facilitators and barriers to discussions about implantation and deactivation and to determine information and decision-support needs for shared decision-making (SDM).Data sourcesObservations of clinical encounters, in-depth interviews and interactive group workshops with clinicians, patients and their relatives.MethodsObservations of consultations with patients being considered for ICD or CRT-D implantation were undertaken to become familiar with the clinical environment and to optimise the sampling strategy. In-depth interviews were conducted with patients, relatives and clinicians to gain detailed insights into their views and experiences. Data collection and analysis occurred concurrently. Interactive workshops with clinicians and patients/relatives were used to validate our findings and to explore how these could be used to support better SDM.ResultsWe conducted 38 observations of clinical encounters, 80 interviews (44 patients/relatives, seven bereaved relatives and 29 clinicians) and two workshops with 11 clinicians and 11 patients/relatives. Patients had variable knowledge about their conditions, the risk of sudden cardiac death and the clinical rationale for ICDs, which sometimes resulted in confusion about the potential benefits. Clinicians used various metaphors, verbal descriptors and numerical risk methods, including variable disclosure of the potential negative impact of ICDs on body image and the risk of psychological problems, to convey information to patients/relatives. Patients/relatives wanted more information about, and more involvement in, deactivation decisions, and expressed a preference that these decisions be addressed at the time of implantation. There was no consensus among clinicians about the initiation or timing of such discussions, or who should take responsibility for them. Introducing deactivation discussions prior to implantation was thus contentious; however, trigger points for deactivation discussions embedded within the pathway were suggested to ensure timely discussions.LimitationsOnly two patients who were prospectively considering deactivation and seven bereaved relatives were recruited. The study also lacks the perspectives of primary care clinicians.ConclusionsThere is discordance between patients and clinicians on information requirements, in particular the potential consequences of implantation on psychological well-being and quality of life in the short and long term (deactivation). There were no agreed points across the care pathway at which to discuss deactivation. Codesigned information tools that present balanced information on the benefits, risks and consequences, and SDM skills training for patients/relative and clinicians, would support better SDM about ICDs.Future workMultifaceted SDM interventions that focus on skills development for SDM combined with decision-support tools are warranted, and there is a potential central role for heart failure nurses and physiologists in supporting and preparing patients/relatives for such discussions.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Background Studies have shown that graduating medical students consistently feel poorly prepared to communicate in difficult clinical situations and at the end of life. 1 These discussions should not be seen in isolation from other communication. We are concerned that specifically teaching advanced communication in conjunction with end of life care might result in students developing ‘palliative communication skills’, to be used only in specific situations rather than a holistic communication style. We aimed to show the utility of the same skills across a spectrum of communication themes in a range of settings, such as deciding whether to initiate a statin to anticipatory care planning. Methods The project involved a new communication programme, integrating previously separate strands to deliver four half-day sessions for fifth year medical students. The students were given an “Advanced Communication Skills handbook” covering the key areas of: Sensitive discussions (breaking bad news) Decision discussions (risk and escalation) Challenging discussions (strong emotions and errors) The programme used role-play and was delivered by several different disciplines to symbolically emphasise integration. Results The students scored their ability (out of 10) to discuss the key areas listed above prior to the first session and after the final session. The results showed an increase in perceived skill level for each key area and written feedback about the sessions was very positive. Breaking bad news: 5.3 to 7.8 Shared decision-making: 6.1 to 7.8 DNACPR discussions: 4 –to 7.4 Conclusion The feedback for these sessions, in conjunction with the increase in perceived skill level across the key areas suggests that this is an effective way of integrating communication strands and decision making in under-graduate teaching. Reference 1. Sullivan AME et al . End-of-life care in the curriculum: a national study of medical education deans. Academic Medicine 2004;79(8):760–8.

This chapter addresses end-of-life care, incorporating thinking about both the last few days of life and the last year of life. The focus of the first part of the chapter is on identifying those patients who are approaching the end of their life, and planning their care appropriately. For these patients disease-modifying therapies, emergency treatments, palliative care and supportive care must run in parallel. A framework of care across primary and secondary care is set out including key issues around communication, anticipatory planning, clinical decision-making and ethics. The second part of the chapter focuses on the last few days of life and practical steps in managing this stage.

The Association for Palliative Medicine (APM) produced a previous undergraduate palliative medicine syllabus in 1992. This study describes the process of developing the new APM consensus syllabus against the background of changes in medical education and palliative medicine since 1992. The syllabus was derived by means of a Delphi study carried out amongst experts in palliative medicine across Britain and Ireland. Forty-three participants agreed to take part. Three rounds of the Delphi study took place. Consensus (75% agreement) was achieved in over 90% of the outcomes. The new syllabus is broken down into the following sections: basic principles, physical care, psychosocial care, culture, language, religious and spiritual issues, ethics and legal frameworks. Learning outcomes are categorised as essential or desirable. Using a Delphi study, we have developed a consensus syllabus for undergraduate palliative medicine. This is sufficiently flexible to allow all medical schools to ensure that their students achieve the essential learning outcomes by the time they graduate, whereas those with more generous curricular space will additionally be able to deliver selected desirable learning outcomes.

Background Estimation of prognosis is a common request. Many methods have been considered but are often complex or unreliable. Some palliative medicine physicians feel the best guide may be the recent rate of change in physical condition. For example, if a patient perceives their condition has been changing weekly they may have a prognosis of weeks; if day by day the prognosis is likely to be days. No research has been done to show whether this is an accurate guide, despite it being widely used. Methods Adults with cancer admitted to an NHS inpatient specialist palliative care unit were recruited (exclusion criteria: 1. lacking capacity; 2. if it was thought the study may cause unnecessary distress). Patients were asked “how has your condition changed recently?" (plus a further probe of "do you think things have been changing daily/weekly/monthly?" if required) but were not asked directly about prognosis. Ethics approval was obtained. Data was collected on patient9s perception of rate of change, consultant9s estimate of prognosis and actual survival time. Aim To determine whether the proposed research question was a reliable indicator of survival time. Results Eight patients were recruited. There was similarity between patient perceived rate of change, doctor prognosis estimate and actual survival time in most cases. Numbers were smaller than anticipated due to concerns about causing distress in patients, although this did not occur in participating patients.

Background The views of newly-qualified doctors regarding their readiness to care for PC patients have been investigated. 1 By comparison, less is known about the opinions of undergraduate PC leads concerning their course provision, role and institutional support. Aims To investigate the views of undergraduate PC leads across all UK medical schools regarding teaching at their university. Methods A 40 point web-based questionnaire was developed and sent to identified PC leads in all UK medical Schools. This study received ethical approval. Results Results were obtained from all 30 UK medical schools. Nineteen respondents (63%) consider that PC training should be a separate course partially integrated within the curriculum, 10 (33%) fully integrated and 1(3%) would prefer a completely separate course. A minority expressed concerns about PC training being recognised as important (5, 17%), support from university colleagues (5, 17%) dedicated teaching time (10, 33%) and funding (10. 33%). Conclusion The views of PC leads are generally positive across UK medical school. It is suggested that negative opinions may be influenced by local organisational difficulties.

Background The End of Life Strategy makes clear the importance of patient choice. The subsequent drive towards community end of life care masks the reality that even in the best performing areas, over 40% of people will continue to die in hospital. Patient9s preferences change as death approaches, with the popularity of hospices significantly increasing. This paper describes one approach by a NHS trust seeking to improve the delivery of palliative and end of life care. The trust made a strategic decision, alongside community initiatives, to invest in a 19 bedded hospital palliative care unit. Aim To examine the effectiveness of a hospital palliative care unit. Methods The effectiveness of the unit was measured in terms of patient statistics, complexity and quality of care. Results The average length of stay was 13 days, proportion of patients who died 62% and occupancy running over 80%. Patient experience data demonstrates high levels of satisfaction, especially in the domains of pain control, respect and dignity, doctors and nurses. Patients were found to have a poorer performance status and require non-oral drugs than a nearby hospice. Staff satisfaction was high. Overall trust performance in Liverpool Care Pathway measures also improved over this time. Conclusion The unit successfully improved the general dissatisfaction with hospital palliative and end of life care. Positive patient/family feedback and high usage demonstrated that this model could achieve 3 goals: -a better level of palliative care for patients than can be delivered in non-palliative care environments -a cost-effective model: the costs were the same as other medical wards -patient choice. The number of patients who died in a palliative care setting raised the proportion of patients dying in a specialist palliative care environment to the highest in the country. A second unit will open shortly.

Background Sedation is a controversial issue in palliative care. Previous research has explored aspects of administration, concerns of relatives and staff and also ethical issues, predominately in retrospective studies. These studies suggest that we require prospective observational research into the day to day use of sedation. Aims The aim of this research was to describe the normative underpinnings of current hospice practice with respect to the use of sedation in palliative care. Methods This is an ethnographic study of the use of sedation in a palliative care inpatient unit. The primary research methods were participant observation and indepth interviewing. Data was analysed taking a constructivist grounded theory approach. Results Through data analysis 3 overarching concepts were developed. These were (1) the concept of ‘routine’ sedation; (2) the relationship of sedation to ensuring a good dying and death; (3) the fundamental role of values in the use of sedation. This paper will consider the first of these. A ‘routine’ form of sedation was observed in the fieldwork and developed into a conceptual model of how sedation was used in the hospice. This form of sedation enabled sedative drugs to be used with the acceptance of a reduction in patient consciousness when imminently dying. A model of the use of sedation in relation to the patient9s dying trajectory and sequence of dying has been developed and forms the outcome for this part of the research study. Conclusion Routine sedation is integral to the palliative care approach to the dying patient; this study delineates the ways in which this form of sedation becomes acceptable in the context of a UK hospice. This research contributes to the international debate about the use of sedation in palliative care and specifically, is the first study to identify a routine practice of sedation in the UK.

Background The number of patients dying in hospital continues to remain high. One of the challenges in combating this is deciding when to actively manage a patient and when to withhold/withdraw treatment. Advance Care Planning concentrates on patient-driven decisions, planning ahead in case they lose capacity to make decisions. Less attention has focused on clinician-led decisions, especially anticipating problems and planning for clinical deteriorations. Treatment escalation planning is one mechanism of planning the care of a patient at risk of deteriorating. Method Treatment escalation planning was introduced as a pilot in the following settings in a general hospital: Respiratory, Cardiology, Care of the Older, Medical Assessment Unit/General Medicine, Critical Care and Palliative Care. Audits were carried out in each setting, looking at decision making, before and after the pilot were carried out. The outcomes were measured and feedback obtained from staff in relation to ease of use, issues encountered and practicalities. Results The use of Treatment Escalation Plans was popular with junior doctors, especially out of hours. Advantages of using the plans included: creating a culture of thinking ahead, a simple format, and in a few cases patient decisions were affected by the plans. Disadvantages were that most patients during their admission did not need the plans created; the decision making and communication of decisions took extra time. Conclusion Treatment Escalation Planning is a potentially powerful tool in trying to deliver appropriate levels of patient treatment. Dilemmas arising from this study include whether to implement this process for all patients (most will not benefit) or for a selected group (at present the authors are not good at predicting patients who will deteriorate acutely). In addition, it raised a number of ethical questions around the communication of decision making, and the level of patient involvement in clinical decision making.

Background Sedation is a controversial issue in palliative care. Previous research has explored aspects of administration, concerns of relatives and staff and also ethical issues, predominately in retrospective studies. These studies suggest that the authors require prospective observational research into the day to day use of sedation. Aims The aim of this research was to describe the normative underpinnings of current hospice practice with respect to the use of sedation in palliative care. Methods This is an ethnographic study of the use of sedation in a palliative care inpatient unit. The primary research methods were participant observation and indepth interviewing. Data was analysed taking a constructivist grounded theory approach. Results Through data analysis three overarching concepts were developed. These were i) the concept of ‘routine’ sedation; ii) the relationship of sedation to ensuring a good dying and death; iii) the fundamental role of values in the use of sedation. This paper will consider the second of these. The use of sedation at the end of life was found to be motivated by healthcare professionals9 desire to bring about good dying and death. This ‘good dying’ centred on symptom control and relief of distress with the aim of bringing about what was conceptualised as a ‘natural’ death, that is dying in sleep. Sedation was used to facilitate this process. Conclusion This research provides the first empirical evidence of the normative basis to the use of sedation, which lies in the hospice construct of good dying and death. This has important implications for the specialty as it expands to provide care for patients with different illnesses and dying trajectories. Uncertainty about diagnosing dying raises challenges regarding the use of sedation, especially when continuous sedation is used until death. The desire to bring about good dying must be balanced by good decision-making in uncertainty.

Background Sedation is a controversial issue in palliative care. Previous research has explored aspects of administration, concerns of relatives and staff and also ethical issues, predominately in retrospective studies. These studies suggest that the authors require prospective observational research into the day to day use of sedation. Aims The aim of this research was to describe the normative underpinnings of current hospice practice with respect to the use of sedation in palliative care. Methods This is an ethnographic study of the use of sedation in a palliative care inpatient unit. The primary research methods were participant observation and indepth interviewing. Data was analysed taking a constructivist grounded theory approach. Results Through data analysis three overarching concepts were developed. These were 1) the concept of ‘routine’ sedation; 2) the relationship of sedation to ensuring good dying and death; 3) the fundamental role of values in the use of sedation. This paper will consider the third of these. Decisions to use sedation were found in this research to be primarily motivated by values. These values related predominately to the nature of, and requirement to ensure, good dying and death in the hospice. Conclusion Decisions to use sedation are highly evaluative decisions, especially at the end of life. These decisions fundamentally represent the palliative care core values regarding dying in a hospice. This is important as palliative care develops to incorporate patients with different diseases and dying trajectories and as it seeks to provide equity of care to different cultural and social groups. Values-based-practice is an approach which embraces the evaluative nature of decision-making and provides a set of practical tools which are centred on individual patients9 values. Values-based practice is suggested as a model to equip those making decisions about sedation while retaining the ‘framework values’ of the palliative care approach.