Total uncertainty: a systematic review and thematic synthesis of experiences of uncertainty in older people with advanced multimorbidity, their informal carers and health professionals.

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.

Isolating residents including wandering residents in care and group homes: Medical ethics and English law in the context of Covid-19.

This article investigates the lawfulness of isolating residents of care and group homes during the COVID-19 pandemic. Many residents are mobile, and their freedom to move is a central ethical tenet and human right. It is not however an absolute right and trade-offs between autonomy, liberty and health need to be made since COVID-19 is highly infectious and poses serious risks of critical illness and death. People living in care and group homes may be particularly vulnerable because recommended hygiene practices are difficult for them and many residents are elderly, and/or have co-morbidities. In some circumstances, the trade-offs can be made easily with the agreement of the resident and for short periods of time. However challenging cases arise, in particular for residents and occupants with dementia who 'wander', meaning they have a strong need to walk, sometimes due to agitation, as may also be the case for some people with developmental disability (e.g. autism), or as a consequence of mental illness. This article addresses three central questions: (1) in what circumstances is it lawful to isolate residents of social care homes to prevent transmission of COVID-19, in particular where the resident has a strong compulsion to walk and will not, or cannot, remain still and isolated? (2) what types of strategies are lawful to curtail walking and achieve isolation and social distancing? (3) is law reform required to ensure any action to restrict freedoms is lawful and not excessive? These questions emerged during the first wave of the COVID-19 pandemic and are still relevant. Although focussed on COVID-19, the results are also relevant to other future outbreaks of infectious diseases in care and group homes. Likewise, while we concentrate on the law in England and Wales, the analysis and implications have international significance.

Transmucosal drug administration as an alternative route in palliative and end-of-life care during the COVID-19 pandemic.

The Coronavirus disease 2019 (COVID-19) pandemic has led to a surge in need for alternative routes of administration of drugs for end of life and palliative care, particularly in community settings. Transmucosal routes include intranasal, buccal, sublingual and rectal. They are non-invasive routes for systemic drug delivery with the possibility of self-administration, or administration by family caregivers. In addition, their ability to offer rapid onset of action with reduced first-pass metabolism make them suitable for use in palliative and end-of-life care to provide fast relief of symptoms. This is particularly important in COVID-19, as patients can deteriorate rapidly. Despite the advantages, these routes of administration face challenges including a relatively small surface area for effective drug absorption, small volume of fluid for drug dissolution and the presence of a mucus barrier, thereby limiting the number of drugs that are suitable to be delivered through the transmucosal route. In this review, the merits, challenges and limitations of each of these transmucosal routes are discussed. The goals are to provide insights into using transmucosal drug delivery to bring about the best possible symptom management for patients at the end of life, and to inspire scientists to develop new delivery systems to provide effective symptom management for this group of patients.

Between "the best way to deliver patient care" and "chaos and low clinical value": General Practitioners' and Practice Managers' views on data sharing.

OBJECTIVE: In the UK, General Practitioners and Practice Managers are key to enabling health information exchange (typically referred to as 'data sharing'). This study aimed to survey GPs and PMs for familiarity, engagement with and perceptions of patient data sharing. METHODS: Cross-sectional survey. All 107 general practices in England's second largest Clinical Commissioning Group, Cambridgeshire & Peterborough CCG. Descriptive statistics; hierarchical logistic regression; thematic analysis. RESULTS: 405 (64%) responses were received - from 338 (62%) GPs and 67 (71%) PMs. Familiarity and engagement were highest for local frail elderly and end of life care projects (>76% had used). The greatest difference in use concerned the now suspended national care.data initiative: PMs had odds of reporting use 75 times higher than GP partners (95% CI 27-211). Patient confusion was the most pronounced challenge and improved coordination the most pronounced expected benefit. Frequency of discussions with patients varied with IT competence (OR 4.2 for most competent users relative to least, 95% CI 1.7-10.7) and clinical system (OR 0.3, 95% CI 0.1-0.5). Patient reservations were reported more frequently by respondents who rated their IT competence as highest (OR 3.3, 95% CI 1.5-7.6), perceived more data sharing challenges (OR for a 1-point increase in challenges perception score 3.4, 95% CI 2.1-5.6) and by PMs (relative to GP partners, OR 18.0, 95% CI 7.9-41.3). CONCLUSIONS: Familiarity with and use of data sharing projects was high among GPs and PMs. Both their individual and organisational characteristics were associated with the reported frequency of discussions and patients' responses. Improved awareness of the impact of provider characteristics and attitudes on patients' decisions about data sharing may enhance the equity and autonomy of those decisions.

Medical student attitudes to the autopsy and its utility in medical education: a brief qualitative study at one UK medical school.

Attending postmortems enables students to learn anatomy and pathology within a clinical context, provides insights into effects of treatment and introduces the reality that patients die. Rates of clinical autopsies have declined and medical schools have cut obligatory autopsy sessions from their curricula making it difficult to assess medical student perceptions of, and attitudes towards, the educational value of autopsy. Our aim was to investigate these perceptions by designing a brief qualitative study comprising nominal technique and focus group discussions with Cambridge Graduate Course students, all of whom had attended autopsies. Three general themes emerged from the focus group discussions: the value of autopsy as a teaching tool and ways the experience could be improved, the initial impact of the mortuary and the autopsy itself, and the "emerging patient"-an emotional continuum running from cadaver to autopsy subject and living patient. Educational benefits of autopsy-based teaching included greater understanding of anatomy and physiology, greater appreciation of the role of other health care professionals and an enhanced appreciation of psycho-social aspects of medical practice. Students suggested improvements for ameliorating the difficult emotional consequences of attendance. We conclude that autopsy-based teaching represents a low-cost teaching technique which is highly valued by students and has application to many diverse medical specialties and skills. However, careful preparation and organization of sessions is required to maximize potential educational benefits and reduce any negative emotional impact.

Addressing 'the elephant on the table': barriers to end of life care conversations in heart failure - a literature review and narrative synthesis.

PURPOSE OF REVIEW: Heart failure is a life-limiting illness, but with great uncertainty over its prognosis. Policy increasingly states the importance of discussions about end of life care between patients and their clinicians. This study reviews the extent to which there is evidence that these conversations occur for heart failure patients in practice. RECENT FINDINGS: Although several opinion pieces and guidelines on this topic have emerged in recent years, little new empirical data have been published. Papers publishing empirical data since 2005 and other literature suggest that these conversations rarely occur. Many clinicians feel uncomfortable or lack confidence; and there is uncertainty whether patients want such discussions. Barriers and facilitators for discussions with heart failure are identified, regarding the nature of the disease, resource constraints and attitudes. The consequence is that disempowered patients rarely have such discussions: the 'elephant on the table' is rarely addressed. SUMMARY: The wide range of barriers identified all hinder conversations about the end of life with heart failure patients. Individual patient preferences for the timing and content of such conversations must be respected, including the wish of some not to have such conversations at all.

Student attitudes toward cadaveric dissection at a UK medical school.

A more humanistic approach toward dissection has emerged. However, student attitudes toward this approach are unknown and the influences on such attitudes are little understood. One hundred and fifty-six first-year medical students participated in a study examining firstly, attitudes toward the process of dissection and the personhood of the cadaver and secondly, the extent to which gender, anxiety, exposure to dissection, bereavement and prior experience of a dead body influenced these attitudes. Attitudes toward dissection were assessed by of levels of agreement toward eleven statements and by selection of adjectives describing possible feelings toward dissection. Students were asked about recent bereavement, whether they had seen a dead body prior to starting their course and exposure to dissection when completing the questionnaire. Validated instruments were used to measure disposition toward generalized anxiety (Hospital Anxiety and Depression Scale) and toward death anxiety (Collett-Lester Death Anxiety Scale). Between 60% and 94% of students held positive attitudes toward the process of dissection and over 70% of students selected 2 or fewer negative adjectives. Students' attitudes toward the personhood of the cadaver were more disparate. Disposition toward anxiety (particularly death anxiety), and exposure to dissection, influenced attitudes. Female gender and recent bereavement exerted a negative influence. Students with higher levels of anxiety experienced more negative feelings and those recently bereaved were less enthusiastic about dissection. Anticipation of dissection may be worse than reality. Sensitive preparation of students prior to entering the dissecting room for the first time may be beneficial.

Quality of life measures (EORTC QLQ-C30 and SF-36) as predictors of survival in palliative colorectal and lung cancer patients.

OBJECTIVE: Self-reported health-related quality of life (HRQoL) is an important predictor of survival alongside clinical variables and physicians' prediction. This study assessed whether better prediction is achieved using generic (SF-36) HRQoL measures or cancer-specific (EORTC QLQ-C30) measures that include symptoms. METHOD: Fifty-four lung and 46 colorectal patients comprised the sample. Ninety-four died before study conclusion. EORTC QLQ-C30 and SF-36 scores and demographic and clinical information were collected at baseline. Follow-up was 5 years. Deaths were flagged by the Office of National Statistics. Cox regression survival analyses were conducted. Surviving cases were censored in the analysis. RESULTS: Univariate analyses showed that survival was significantly associated with better EORTC QLQ-C30 physical functioning, role functioning, and global health and less dyspnea and appetite loss. For the SF-36, survival was significantly associated with better emotional role functioning, general health, energy/vitality, and social functioning. The SF-36 summary score for mental health was significantly related to better survival, whereas the SF-36 summary score for physical health was not. In the multivariate analysis, only the SF-36 mental health summary score remained an independent, significant predictor, mainly due to considerable intercorrelations between HRQoL scales. However, models combining the SF-36 mental health summary score with diagnosis explained a similar amount of variance (12%-13%) as models combining diagnosis with single scale SF-36 Energy/Vitality or EORTC QLQ-C30 Appetite Loss. SIGNIFICANCE OF RESULTS: HRQoL contributes significantly to prediction of survival. Generic measures are at least as useful as disease-specific measures including symptoms. Intercorrelations between HRQoL variables and between HRQoL and clinical variables makes it difficult to identify prime predictors. We need to identify variables that are as independent of each other as possible to maximize predictive power and produce more consistent results.

The influence of patient and carer age in access to palliative care services.

BACKGROUND: Older patients are less likely to receive palliative care than younger patients. As patient and primary carer age correlate positively, patterns may be due to carer rather than patient age, and reflect better ability to obtain support among younger carers. OBJECTIVE: To investigate how both patient and carer age relate to palliative care use, controlling for relevant variables. DESIGN: Comparison of patients who received community Macmillan nurse specialist advice, Marie Curie nursing or inpatient hospice care with patients who did not, using univariate analysis and multivariate logistic regression. Patient and carer data were collected through electronic service record linkage and carer post-bereavement interviews. SAMPLE: patients referred to a hospice at home service whose primary carer could be interviewed (n = 123). RESULTS: Whilst a cancer diagnosis was an important determinant of access for all services considered, logistic regression shows that carer age, but not patient age, and hospice at home access predicted Marie Curie nursing use. Both patient and carer age predicted use of Macmillan nurse advice. Age of the patient, but not carer age, predicted admission to inpatient hospice, alongside requiring care for over a month (all P < 0.05). CONCLUSIONS: Carer age may be as important a predictor of palliative home care use as patient age. We need to investigate whether younger carers have greater support needs or show greater effectiveness in obtaining help and to assess whether older carers need more assistance in recruitment of support.

Caregiver bereavement outcome: relationship with hospice at home, satisfaction with care, and home death.

This study used a randomized controlled trial design to investigate the impact of hospice at home (HAH) on caregiver bereavement outcome. Secondary analyses considered the association between bereavement, place of death, and carers' assessment of support. Ninety-six informal carers of patients referred to HAH were surveyed six weeks post-bereavement about the quality of terminal care. Carers next completed measures of their own bereavement response and general health six months post-bereavement. There was no evidence that HAH had an impact on bereavement outcome. In contrast, perceptions of inadequate terminal support and high symptom severity were associated with worse carer bereavement response. However, it remains unclear whether carers' retrospective ratings constitute an accurate account of symptoms and care. Home deaths were associated with both better bereavement response and better physical health post-bereavement than were inpatient deaths. Further research is needed to investigate the implications of death at home for the carer.