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Background: A conceptual model of effective symptom management was previously developed from interviews with multidisciplinary healthcare professionals (HCP) working in English hospices. Here we aimed to answer the question; does a HCP data-derived model represent the experience of patients and carers of people with advanced cancer?, Methods: Semi-structured interviews were undertaken with six patients with advanced cancer and six carers to gain an in-depth understanding of their experience of symptom management. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation. Inductive framework analysis was used to align data with themes in the existing model. A deductive approach was also used to identify new themes., Results: The experience of patients and carers aligned with key steps of engagement, decision making, partnership and delivery in the HCP-based model. The data aligned with 18 of 23 themes. These were; Role definition and boundaries, Multidisciplinary team decision making, Availability of services/staff, Clinician-Patient relationship/rapport, Patient preferences, Patient characteristics, Quality of life versus treatment need, Staff time/burden, Psychological support -informal, Appropriate understanding, expectations, acceptance and goals- patients, Appropriate understanding, expectations, acceptance and goals-HCPs, Appropriate understanding, expectations, acceptance and goals- family friends, carers, Professional, service and referral factors, Continuity of care, Multidisciplinary team working, Palliative care philosophy and culture, Physical environment and facilities, Referral process and delays. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and COVID-19. Constructs that did not align were Experience (of staff), Training (of staff), Guidelines and evidence, Psychological support (for staff) and Formal psychological support (for patients)., Conclusions: A healthcare professional-based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Additional domains were identified. We make four recommendations for change arising from this research. Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles; improved access to communication skills training for staff and review of patient communication needs. Further research should explore the symptom management experience of those living alone and how these people can be better supported., (© 2024. The Author(s).)

Background and Objective: In modern Britain, palliative and end-of-life care is governed by quality standards and guidance, which should consider spiritual and psychological needs. However, there are significant gaps in provision of services which was highlighted during the coronavirus disease 2019 (COVID-19) pandemic where many individuals and families suffered profound spiritual and existential distress. Significant gaps remain in the provision of services to support patients with spiritual and psychological needs which can affect the management of physical symptoms. During the medieval period in Western Europe, it was important to prepare well for death throughout life. It has been suggested that lessons may be learned from medieval preparations for death which might benefit those approaching end-of-life in contemporary society. It is therefore timely to consider medieval attitudes to death and reflect on how these might inform modern end-of-life care. The objective of this review is to synthesise literature addressing modern end-of-life care in the UK and contrast this with literature on preparations for death during the medieval period in Western Europe. Our aim is to determine whether there is wisdom to be gained from history which could inform our approaches to end-of-life care today., Methods: Using online databases and broad keyword searches along with experts in the field of medieval history, we identified literature and translations of texts with a focus on preparations for death during both periods. These were narratively synthesised and discussed., Key Content and Findings: A key finding is that the medieval attitude to death was as an integral part of life, whereas in modern society death is not usually considered until the situation arises. The review highlights a need for a better understanding of the individuality of spiritual and existential needs during end-of-life care in modern society, which will vary according to individual choice, culture, societal group, religion, and belief., Conclusions: The lessons we can learn from our medieval counterparts include the need for lifelong and individual preparations for the end of life, with emphasis on spiritual needs. Alongside palliative interventions, we need to take time to appreciate what gives individuals spiritual support and provide the resources to facilitate this.

Objective: Cancer patients in Zimbabwe typically access health services with advanced disease, limiting treatment choices and lessening the likelihood of positive treatment outcomes. We outline experiences of patients with advanced cancer prior to interaction with palliative care services to identify targets for future intervention development to enhance care delivery in Zimbabwe., Methods: Participants were purposively sampled adult patients with advanced cancer. We adopted a thematic approach to guide a qualitative secondary data analysis exploring factors influencing support sought by participants, external factors influencing decision making across the disease trajectory and the process for seeking and accessing palliative care., Results: Participants reported fragmented and uncoordinated care, from initial symptom experience and throughout disease progression. A recurring notion of disjuncture was present through participants' experiences of gaps, breaks and discontinuity across the disease trajectory. Each step had a beginning and end without clear routes for transition with movement between steps as a result of happenstance or informal encounters., Conclusion: Targets for intervention development at the patient and family level exist that may reduce the disjuncture currently experienced between need and care provision. A holistic response that incorporates engagement with policy actors is critical to addressing prominent financial constraints for patients., (© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)

Background: Early provision of palliative care, at least 3-4 months before death, can improve patient quality of life and reduce burdensome treatments and financial costs. However, there is wide variation in the duration of palliative care received before death reported across the research literature. This study aims to determine the duration of time from initiation of palliative care to death for adults receiving palliative care across the international literature., Methods: We conducted a systematic review and meta-analysis that was registered with PROSPERO (CRD42018094718). Six databases were searched for articles published between Jan 1, 2013, and Dec 31, 2018: MEDLINE, Embase, CINAHL, Global Health, Web of Science and The Cochrane Library, as well undertaking citation list searches. Following PRISMA guidelines, articles were screened using inclusion (any study design reporting duration from initiation to death in adults palliative care services) and exclusion (paediatric/non-English language studies, trials influencing the timing of palliative care) criteria. Quality appraisal was completed using Hawker's criteria and the main outcome was the duration of palliative care (median/mean days from initiation to death)., Results: One hundred sixty-nine studies from 23 countries were included, involving 11,996,479 patients. Prior to death, the median duration from initiation of palliative care to death was 18.9 days (IQR 0.1), weighted by the number of participants. Significant differences between duration were found by disease type (15 days for cancer vs 6 days for non-cancer conditions), service type (19 days for specialist palliative care unit, 20 days for community/home care, and 6 days for general hospital ward) and development index of countries (18.91 days for very high development vs 34 days for all other levels of development). Forty-three per cent of studies were rated as 'good' quality. Limitations include a preponderance of data from high-income countries, with unclear implications for low- and middle-income countries., Conclusions: Duration of palliative care is much shorter than the 3-4 months of input by a multidisciplinary team necessary in order for the full benefits of palliative care to be realised. Furthermore, the findings highlight inequity in access across patient, service and country characteristics. We welcome more consistent terminology and methodology in the assessment of duration of palliative care from all countries, alongside increased reporting from less-developed settings, to inform benchmarking, service evaluation and quality improvement.

Background: Despite increasing evidence of the benefits of early access to palliative care, many patients do not receive palliative care in a timely manner. A systematic approach in primary care can facilitate earlier identification of patients with potential palliative care needs and prompt further assessment., Aim: To identify existing screening tools for identification of patients with advanced progressive diseases who are likely to have palliative care needs in primary healthcare and evaluate their accuracy., Design: Systematic review (PROSPERO registration number CRD42019111568)., Data Sources: Cochrane, MEDLINE, Embase and CINAHL were searched from inception to March 2019., Results: From 4,127 unique articles screened, 25 reported the use or development of 10 screening tools. Most tools use prediction of death and/or deterioration as a proxy for the identification of people with potential palliative care needs. The tools are based on a wide range of general and disease-specific indicators. The accuracy of five tools was assessed in eight studies; these tools differed significantly in their ability to identify patients with potential palliative care needs with sensitivity ranging from 3% to 94% and specificity ranging from 26% to 99%., Conclusion: The ability of current screening tools to identify patients with advanced progressive diseases who are likely to have palliative care needs in primary care is limited. Further research is needed to identify standardised screening processes that are based not only on predicting mortality and deterioration but also on anticipating the palliative care needs and predicting the rate and course of functional decline. This would prompt a comprehensive assessment to identify and meet their needs on time.

Objective: Psychological distress is common in palliative care patients. The 2004 National Institute of Healthcare and Excellence (NICE) guidance for supportive and palliative care for adults with cancer, which remains contemporary, recognised that access to psychological support was inconsistent and often inadequate. Their 4-tier model requires multidisciplinary psychological assessment at key points. Implicit is the need for improved training and support for staff and equity in service provision. This survey was designed to determine the levels of self-reported competence amongst healthcare staff in the psychological assessment and screening of patients in adult hospices in England and their awareness of the NICE guidelines. Methods: A short anonymised online questionnaire was sent to 164 hospices to determine perceptions of healthcare professionals (HCPs) on their own competence in screening and assessment of distress, provision of therapies and levels of training and supervision. Results: Responses were received from 140 HCPs in approximately thirty-eight hospices. Key findings included self-reported needs for training and supervision. Over a quarter of nurses (28.8%) and AHPs (27.8%) had no level 2 training, and only half of nurses, AHPs and physicians were aware of the NICE guidelines. Access to level 3 specialist psychological services was lacking and some HCPs felt unable to screen and assess patients for referral to specialist services. Conclusions: Consistent, standardised training in assessment of psychological needs is required to ensuring delivery of high-quality care for psychological needs. Areas for future development identified include essential communication skills and high-quality supervision for those delivering psychotherapeutic interventions. [ABSTRACT FROM AUTHOR]

Background Pharmacists can contribute to improved patient outcomes, improve medicine knowledge, reduce drug costs and minimise errors. However, their role within hospice-based services is not well described. Objective The objective of this paper was to explore the role of pharmacists within UK hospices. Methods: Methods include an online survey and follow-up telephone contact of pharmacists working in UK hospices assessing pharmacist provision, duties, communication, medicine sourcing and training. Results Eighty-nine responses were received from 82 hospices (response rate 50%). Pharmacists had a role in 75% of hospices providing between 6.6 min and 5.5 hrs of pharmacist support per bed per week. The most frequent duty reported was provision of medicines information to the clinical team. Access to patient records varied considerably: 13% had full read and write access to GP records while 29% had no access. Job-specific training had not been received by 36% of the respondents and 47% reported training needs including basic training in palliative care. Conclusions: Three-quarters of UK hospices have pharmacy provision, although this falls below the recommended levels in the majority. Hospice pharmacists lack access to training and records. Medicines sourcing for hospices is variable and could provide opportunities for efficiencies with further research. [ABSTRACT FROM AUTHOR]