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 / Aims: To determine who provides bereavement support in the community, what sources are perceived to be the most or least helpful and for what reason, and to identify the empirical elements for optimal support in developing any future compassionate communities approach in palliative care. Design: A population-based cross-sectional investigation of bereavement experiences. Sources of support (informal, community and professional) were categorised according to the Public Health Model of Bereavement Support; most helpful reasons were categorised using the Social Provisions Scale, and least helpful were analysed using inductive content analysis. Setting and participants: Bereaved people were recruited from databases of funeral providers in Australia via an anonymous postal survey (2013–2014). Results: In total, 678 bereaved people responded to the survey. The most frequently used sources of support were in the informal category such as family, friends and funeral providers. While the professional category sources were the least used, they had the highest proportions of perceived unhelpfulness whereas the lowest proportions of unhelpfulness were in the informal category. The functional types of helpful support were Attachment, Reliable Alliance, Social Integration and Guidance. The five themes for least helpful support were: Insensitivity, Absence of Anticipated Support, Poor Advice, Lack of Empathy and Systemic Hindrance. Conclusion: A public health approach, as exemplified by compassionate communities policies and practices, should be adopted to support the majority of bereaved people as much of this support is already provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. This study has provided further support for the need to strengthen the compassionate communities approach, not only for end of life care for dying patients but also along the continuum of bereavement support. / Health Department of Western Australia.

Yes / Modern, advanced healthcare detects and monitors long-term and life-limiting illness more comprehensively than ever before. However, death is now often considered medical failure, and is a virtually taboo topic of conversation in daily life. At a time when the societal relevance of archaeology is under scrutiny more than ever before, the AHRC-funded Continuing Bonds Project – a collaboration between archaeology and palliative care – explores the potential of the past to promote discussion. Not only does archaeology illuminate the diversity of practice surrounding death, the past provides a safe, distanced platform for considering death, dying and bereavement today. Through archaeological and ethnographic case studies, health and social care professionals and students consider topics such as place, choice and identity, in both personal and professional life. This article examines participant responses to a variety of archaeological material and presents post-workshop reflections which demonstrate the success of archaeology in opening up conversations and increasing confidence in discussing this most enduring and problematic of life events. / Arts and Humanities Research Council

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.

No / Almost 50,000 children and young people are affected by life-limiting conditions in the United Kingdom, around a third of which use children's hospices. Anecdotal evidence suggests that cannabinoid-based medicines (CBMs), specifically cannabis oil (CO), are being used by families with increasing frequency to manage distressing symptoms. The use of most nonprescription CBMs in the United Kingdom remains illegal. The objective of the study was to identify the prevalence of CO use by families who use children's hospices in the United Kingdom, and the approaches taken by those services to manage it. Design: An electronic survey was sent to each of the 54 children's hospices in the United Kingdom between May and July 2018, comprising 10 questions. Results: Forty children's hospices from across the four countries of the United Kingdom responded to the survey, representing 74% of British children's hospices. About 87.5% of hospices knew of children who use CO therapeutically. Sixty-nine percent of those hospices have received requests to administer CO during an episode of care. Approaches by organizations around CO management varied across the sectors, including arrangements for storage, administration, and recording of its use. Hospices highlighted how the lack of available guidance made decision making more challenging. Only a third of responding organizations routinely questioned families about the use of cannabis when prescribing medicines. Conclusion: CO is used extensively by children who use children's hospices. Despite recognizing the use of CO, many hospices are unable to support it. There is a need for clear guidelines on how hospices should approach the care needs of children, allowing hospices to meet the needs of children who use CO, and families in a safe, consistent, and relevant way, safeguarding all children, families, and professionals within the organization.

No / In recent years, as the prevalence of prescribers has increased, there has been discord and confusion around exactly how to refer to prescribers who are not doctors (Nuttall and Rutt-Howard, 2020). Professional regulators continue to define prescribers by specific profession, using terms such as ‘nurse prescriber’ (Nursing and Midwifery Council, 2018a), ‘pharmacist prescriber’ (General Pharmaceutical Society, 2018) and ‘allied health professional prescriber’ (Health and Care Professions Council, 2016). However, there is a broader range of literature using the collective term of ‘non-medical prescribers’ (All Wales Medicines Strategy Group, 2017; Department of Health Northern Ireland, 2020; NHS England, 2020; Scottish Government, 2020), highlighting the multidisciplinary nature of contemporary prescribing practices across the UK, and the shared responsibility of prescribers for assuring safe and effective practice. Within this chapter, we refer to prescribers collectively, as non-medical prescribers. Although this chapter has been written with the four countries of the UK in mind, it is important that you consider any country-specific, and profession-specific guidelines.

The study sought to research and develops a universal palliative care measurement tool that will track the performance of informal caregivers to dying persons across the diversity of the South African cultural and religious groupings. The major inferences drawn from this study was that a generic domain, sub-items and intervals could be identified for palliative care; that a reliable measurement tool could be developed and that outcomes of care programs for dying persons in terms of effectiveness and efficiency could be numerically quantified. With the ability to measure now been realised, the ability to manage the outcomes became the new challenge. / Nursing Sciences / M.A. (Health Studies)

Innerhalb der Palliativmedizin - als multiprofessionellem Unterstützungskonzept für fortgeschritten unheilbar erkrankte Patienten – ist die SAPV als „relativ neue“ Versorgungsform seit 2007 eine gesetzlich festgelegte Struktur. Sie soll vor allem die bessere ambulante Versorgung von Patienten mit inkurablen Erkrankungen mit ausgeprägten komplexen Belastungen in den Bereichen körperlicher und psychosozialer Symptome sowie pflegerischen Hilfebedarfes, unter besonderer Berücksichtigung von Selbstbestimmung und Förderung von Lebensqualität, gewährleisten. In dieser Dissertation wird erstmalig ein Patientenkollektiv einer Universitätsklinik beschrieben, das durch die SAPV der Klinik für Palliativmedizin der UMG im Jahr 2011 behandelt wurde. Hierzu werden epidemiologische, klinische Symptome und Belastungen der Patienten, sowie deren Behandlungsintensität statistisch dargestellt, erläutert und schließlich im Kontext diskutiert.

The study sought to research and develops a universal palliative care measurement tool that will track the performance of informal caregivers to dying persons across the diversity of the South African cultural and religious groupings. The major inferences drawn from this study was that a generic domain, sub-items and intervals could be identified for palliative care; that a reliable measurement tool could be developed and that outcomes of care programs for dying persons in terms of effectiveness and efficiency could be numerically quantified. With the ability to measure now been realised, the ability to manage the outcomes became the new challenge. / Nursing Sciences / M.A. (Health Studies)