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.

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.

Syftet med examensarbetet var att undersöka begreppet livskvalitet inom palliativ vård utifrån ett arbetsterapeutiskt perspektiv. Som metod användes Walker och Avants begreppsanalys. Tre definierande attribut till begreppet livskvalitet framträdde utifrån analysen: livskvalitet är ett subjektivt mått av vardag, livskvalitet utgår från prioriterade högre värden och livskvalitet är föränderligt. Analysen visade även att möjligheten att engagera sig i meningsfulla aktiviteter i vardagen är ett av de mest grundläggande villkoren för att en god livskvalitet ska kunna uppnås för patienter med palliativa vårdbehov. Livskvalitet påverkas av aktivitet respektive passivitet, men dessa faktorer är också en konsekvens av patientens grad av livskvalitet. En god livskvalitet stimulerar till aktivitet och vice versa, en mindre god livskvalitet leder till ökad passivitet. Resultatet visar att det är av stor vikt att arbetsterapeuter inom palliativ vård arbetar utifrån ett personcentrerat förhållningssätt och sätter patienten i ett aktivitetssammanhang relaterat till den unika individens historia, nutid och framtid. Den föränderliga aspekten av livskvalitet medför även möjligheter att förbättra patienternas livskvalitet.

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 / Objective: To investigate timely access to palliative medicines/drugs (PMs) from community pharmacies to inform palliative care service delivery. Design: Mixed methods in two sequential phases: (1) prospective audit of prescriptions and concurrent survey of patients/representatives collecting PMs from pharmacy and (2) interviews with community pharmacists (CPs) and other healthcare professionals (HCPs). Setting: Five community pharmacies in Sheffield, UK and HCPs that deliver palliative care in that community. Participants: Phase 1: five CPs: two providing access to PMs within a locally commissioned service (LCS) and three not in the LCS; 55 patients/representatives who completed the survey when accessing PMs and phase 2: 16 HCPs, including five phase 1 CPs, were interviewed. Results: The prescription audit collected information on 75 prescriptions (75 patients) with 271 individual PMs; 55 patients/representatives (73%) completed the survey. Patients/representatives reported 73% of PMs were needed urgently. In 80% of cases, patients/representatives received all PMs on the first pharmacy visit. One in five had to travel to more than one pharmacy to access PMs. The range of PMs stocked by pharmacies was the key facilitating factor. CPs reported practical issues causing difficulty keeping PMs in stock and playing a reactive role with palliative prescriptions. Confidentiality concerns were cited by other HCPs who were reluctant to share key patient information proactively with pharmacy teams. Inadequate information transfer, lack of CP integration into the care of palliative patients and poor HCP knowledge of which pharmacies stock PMs meant patients and their families were not always able to access PMs promptly. Conclusions: Consistent routine information transfer and integration of pharmacy teams in the care of palliative patients are needed to achieve timely access to PMs. Commissioners of PM access schemes should review and monitor access. HCPs need to be routinely made aware and reminded about the service and its locations. / EJM received research funding from Pharmacy Research UK and Sheffield Teaching Hospitals NHS Foundation Trust as well as support from St Luke’s Hospice, Sheffield. AB and JDM report grants from Pharmacy Research UK during the conduct of the study.

Yes / Nausea and vomiting are common symptoms in palliative care. Haloperidol is often used as an antiemetic in this context, although direct evidence supporting this practice is limited. To evaluate the efficacy and clinical use of haloperidol as an antiemetic in nonpalliative care contexts to inform practice, the authors conducted a rapid review of (i) published evidence to supplement existing systematic reviews, and (ii) practical aspects affecting the use of haloperidol including formulations and doses that are commonly available internationally. In nausea and vomiting related to cancer treatment, haloperidol was superior to control in two small studies. In postoperative nausea and vomiting (PONV), two randomized controlledtrials found treatment with haloperidol comparable to ondansetron. In palliative care, an observational study found a complete response rate of 24% with haloperidol (one in four patients) which would be consistent with a number needed to treat (NNT) of 3 to 5 derived from PONV. There remains insufficient direct evidence to definitively support the use of haloperidol for the management of nausea and vomiting in palliative care. However, generalizing evidence from other clinical contexts may have some validity.

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)