Search

Funder: Health Education England Academic Clinical Lectureship, Funder: National Institute for Health Research (NIHR), OBJECTIVES: uncertainty pervades the complex illness trajectories experienced by older adults with multimorbidity. Uncertainty is experienced by older people, their informal carers and professionals providing care, yet is incompletely understood. We aimed to identify and synthesise systematically the experience of uncertainty in advanced multimorbidity from patient, carer and professional perspectives. DESIGN: systematic literature review of published and grey qualitative literature from 9 databases (Prospero CRD 42021227480). PARTICIPANTS: older people with advanced multimorbidity, and informal carers/professionals providing care to this group. Exclusion criteria: early multimorbidity, insufficient focus on uncertainty. ANALYSIS: weight-of-evidence assessment was used to appraise included articles. We undertook thematic synthesis of multi-perspective experiences and response to uncertainty. RESULTS: from 4,738 unique search results, we included 44 articles relating to 40 studies. 22 focused on patient experiences of uncertainty (n = 460), 15 on carer experiences (n = 197), and 19 on health professional experiences (n = 490), with 10 exploring multiple perspectives. We identified a shared experience of 'Total Uncertainty' across five domains: 'appraising and managing multiple illnesses'; 'fragmented care and communication'; 'feeling overwhelmed'; 'uncertainty of others' and 'continual change'. Participants responded to uncertainty by either active (addressing, avoiding) or passive (accepting) means. CONCLUSIONS: the novel concept of 'Total Uncertainty' represents a step change in our understanding of illness experience in advanced multimorbidity. Patients, carers and health professionals experienced uncertainty in similar domains, suggesting a shared understanding is feasible. The domains of total uncertainty form a useful organising framework for health professionals caring for older adults with multimorbidity., SE is funded by a Health Education England Academic Clinical Lectureship SB is part funded by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE) programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. SH is jointly funded by The Dunhill Medical Trust and British Geriatrics Society [Grant ref. JBGS20\5]

Funder: NIHR Applied Research Collaboration East of England, Funder: Health Education East of England, BACKGROUND: The impact of assisted hydration on symptoms and survival at the end of life is unclear. Little is known about optimal strategies for communicating and decision-making about this ethically complex topic. Hydration near end of life is known to be an important topic for family members, but conversations about assisted hydration occur infrequently despite guidance suggesting these should occur with all dying people. AIM: To explore the views and experiences of doctors experienced in end-of-life care regarding communicating with patients and families and making decisions about assisted hydration at the end of life. DESIGN: Qualitative study involving framework analysis of data from semi-structured interviews. SETTING/PARTICIPANTS: Sixteen UK-based Geriatrics and Palliative Medicine doctors were recruited from hospitals, hospices and community services from October 2019 to October 2020. RESULTS: Participants reported clinical, practical and ethical challenges associated with this topic. The hospital setting provides barriers to high-quality communication with dying patients and their families about assisted hydration, which may contribute to the low incidence of documented assisted hydration-related conversations. Workplace culture in some hospices may make truly individualised decision-making about this topic more difficult. Lack of inclusion of patients in decision-making about assisted hydration appears to be common practice. CONCLUSIONS: Proactive, routine discussion with dying people about hydration-related issues is indicated in all cases. There is room for debate regarding the limits of shared decision-making and the benefits of routine discussion of assisted hydration with all dying people. Clinicians have to navigate multiple barriers as they strive to provide individualised care.

Supplemental material, sj-pdf-1-pmj-10.1177_02692163221097309 for Medical communication and decision-making about assisted hydration in the last days of life: A qualitative study of doctors experienced with end of life care by Arjun Kingdon, Anna Spathis, B�rbara Antunes and Stephen Barclay in Palliative Medicine

Additional file 4. Summarised free-text responses to post-workshop open questions about most and least helpful aspects, suggested changes and any other comments.

Additional file 2. Survey questions for evaluation of health professional training workshop

Additional file 6. Exploratory factor analysis of items for familiarity, confidence and attitudes.

Additional file 5. Potential barriers to implementation anticipated by the post-course respondents

Additional file 3. Pre-post workshop change in current practice in assessment and management of chronic breathlessness: non-Likert response questions