No / This article presents a review of key issues around caring for people in the last hours and days of life. The aim is that community nurses will be able to support patients and families, and to provide and explain decisions and interventions to promote comfort and dignity based on current evidence.

No / Laura Middleton-Green, lecturer and researcher in palliative and end of life care, writes about how attitudes to death influence care of the dying.

No / As a domain of knowledge for healthcare professionals, palliative care is complex and demanding; not least for educators. Effective teaching in palliative care relies on educators both being able to develop and encourage interpersonal skills, and also to capture an authentic sense of the real world in teaching clinical aspects of care. The recommendations of the Francis Report present a challenge to educators: how do we "educate" (literally, "to develop the faculties and powers of") the palliative care providers of the future? How do we ensure they are competent, compassionate communicators? Team-based learning is currently being piloted in at the University of Bradford as a means of achieving these goals. This technique, developed by Larry Michaelson and colleagues in the United States, uses sound pedagogical principles to encourage debate and dissent between small teams related to complex and ambiguous areas of knowledge. The role of the educator is to guide and facilitate discussion, and challenge preconceptions and assumptions. There is minimal use of lectures other than to consolidate conclusions. It was decided to pilot the technique within the palliative care content of the curriculum, because of the opportunities to develop students skills of critical thinking, awareness and compassion. Initial analysis of questionnaire and focus group data within Bradford is overwhelmingly in support; students are demonstrating evidence of increased critical thinking, more effective teamwork, evolving listening skills, and satisfaction at learning in a way which they perceive to be much more akin to clinical practice than didactic lectures and seminars. This presentation will look at the structure of team-based learning, review the evidence, and examine how it was applied specifically to palliative care using scenarios based on Patient Journeys in the last year of life. The opportunities for its use in clinical, interprofessional and post-registration palliative care education will be explored.

No / The clinical and social epidemiology of living with a life-threatening or life-limiting illness, frail ageing, long-term caregiving, and grief and bereavement is well documented in the palliative care, psycho-oncology and psychiatric literature but this investigation asks what interest exists from the mainstream public health sector in these health and illness experiences. This paper reports a content analysis of 7 key British public health journals, 14 major public health textbooks and 3 public health websites employing key word and synonym searches to assess the size and quality of interest in populations related to ageing, dying, caregiving, and grief and bereavement. Compared with other public health issues, such as obesity and tobacco use, for examples, interest in the social experience and epidemiology of end-of-life experiences is extremely low. Reasons for this lack of interest are explored.

No / Context. There is need for tools to help detect pain or lack of comfort in persons unable to communicate. However, pain and (dis)comfort tools have not been compared, and it is unclear to what extent they discriminate between pain and other possible sources of discomfort, or even if items differ. Objectives. To map and compare items in tools that assess pain and the broader notion of discomfort or comfort in people with severe dementia or at the end of life. Methods. Using qualitative content analysis with six classifications, we categorized each item of four thoroughly tested observational pain tools (Pain Assessment in Advanced Dementia [PAINAD], Pain Assessment Checklist for Seniors with Limited Ability to Communicate [PACSLAC], Doloplus-2, and draft Pain Assessment in Impaired Cognition [PAIC]), and four discomfort tools (including distress, comfort, and quality of life in severe dementia or at the end of life; Discomfort ScaleeDementia Alzheimer Type [DS-DAT], Disability Distress Assessment Tool [DisDAT], End-of-Life in DementiaeComfort Assessment in Dying with Dementia [EOLD-CAD], and Quality of Life in Late-Stage Dementia [QUALID] scale). We calculated median proportions to compare distributions of categories of pain and discomfort tools. Results. We found that, despite variable content across tools, items from pain and discomfort tools overlapped considerably. For example, positive elements such as smiling and spiritual items were more often included in discomfort tools but were not unique to these. Pain tools comprised more ‘‘mostly descriptive’’ (median 0.63 vs. 0.44) and fewer ‘‘highly subjective’’ items (0.06 vs. 0.18); some used time inconsistently, mixing present and past observations. Conclusion. This analysis may inform a more rigorous theoretical underpinning and (re)development of pain and discomfort tools and calls for empirical testing of a broad item pool for sensitivity and specificity in detecting and discriminating pain from other sources of discomfort.

No / Complete : FC 16. We aimed to develop a complex intervention to improve end of life care (EOLC) for people with advanced dementia and their carers. We collected data from 4 sources: literature review; qualitative data from health and social care professionals, carers and people with early dementia; quantitative data from people with advanced dementia and their carers; review of UK health and social care policy documents. Method and results: To develop the intervention we synthesised these data. 49 emerging statements were considered in workshops with health and social care professionals across UK to achieve consensus using the RAND Appropriateness Method (RAM) to develop components of the intervention. 1. Prior to workshops we sent invitees the RAM form consisting of 49 statements and asked them to rate these on a scale of 1-9 for appropriateness. 2. At the workshops statements rated as ‘uncertain’ or ‘inappropriate’ were discussed and all 49 items were rated again. 3. Analysis resulted in the retention of 29 statements rated as appropriate. 4. Post workshop attendees were sent the RAM form and asked to rate 29 statements for necessity. All 29 statements were rated as necessary and retained then mapped onto impact theories (Grol 2007) comprised of individual, social interaction, organisational or political/ economic context, and categorised as enablers and barriers for an intervention. Three core intervention components emerged: 1. Integrated systems and approaches to the delivery of careoperational plan 2. Education, training and support for health and social care professionals and carers - utilisation plan 3. Political and economic context dependent on reimbursement and contracting through CCG commissioning. Discussion: The next phase is to pilot components 1 and 2 of the intervention in a naturalistic experiment in one inner city and one suburban locality at different stages of development for services for EOLC for people with dementia and their carers.

No

No / Dear Editor In undertaking studies of palliative care in heart failure and chronic obstructive pulmonary disease (COPD) in the UK, we identified procedural, conceptual and ethical challenges that may arise from one feature of The End of Life Care Strategy for England.1 The strategy presents the question, ‘Would I be surprised if the person in front of me was to die in the next six months or one year?’ as a prompt to initiate discussion of endof-life care needs and preferences (paragraph 3.23). We believe this question is inappropriate in heart failure and COPD and its use will inhibit the initiation of a palliative care approach with these patients.

Yes

No / Few studies shed light on what motivates or discourages patients, carers and professionals for participating in user involvement activities. To identify motivational factors that affect the engagement of service users and professionals with user-involvement activities. Methods: As part of a larger scoping study of user involvement in palliative care, 51 semistructured interviews were conducted with service users, palliative care professionals and experts to explore experiences of user-involvement initiatives. Four user-involvement programmes were also observed. Data were analysed using a thematic analysis technique. A subsequent consultation meeting with 48 service users and professionals discussed the preliminary findings. Results: User involvement has been predominantly developed through a 'top-down' professional agenda. A few highly motivated individuals, both service users and palliative care professionals, are extremely influential in starting and maintaining user involvement. Reported benefits include personal satisfaction and status but barriers are tokenism and time pressures.