From Ovid to Covid: The metamorphosis of Advanced Decisions to Refuse Treatment into a safeguarding issue

Purpose This paper aims to examine Advance Decisions to Refuse Treatment (ADRTs) in the context of the COVID-19 pandemic. We consider the development of ADRTs, the lack of take up and confusion among the general public, clinicians and health and social care staff. Design/methodology/approach The paper is a conceptual piece that reflects on ADRTs in the particular context of COVID-19. It considers professional concerns and pronouncements on ADRTs. Findings ADRTs have a low take up currently. There is misunderstanding among public and professionals. There is a need for raising awareness, developing practice and a need to allay fears of misuse and abuse of ADRTs in clinical, health and social care settings. Originality This paper is original in considering ADRTs as a safeguarding issue from two perspectives: that of the person making the ADRT and being confident in respect for the decisions made, and of clinicians and other professionals being reflexively aware of the need to accept advance decisions and not acting according to unconscious biases in times of crisis. Practical implications We make recommendations that reflexive training and awareness becomes the norm in health and social care, that reform of ADRTs is undertaken to prevent misunderstandings and that the person becomes central in all decision-making processes

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Background: Advance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic. Aim: To investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life. Design and data collection: Qualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total. Setting: General practices and community care settings in the East Midlands of England. Findings: The study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare. Conclusions: Advance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity. Future work: Attention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care. Funding: The National Institute for Health Research Health Services and Delivery Research programme

A Dynamic and Responsive Host in Action Light-Controlled Molecular Encapsulation

This data contains the geometries, energies, frequency, solvent, and PES scan calculations

Collective decision-making appears more egalitarian in populations where group fission costs are higher

Collective decision-making is predicted to be more egalitarian in conditions where the costs of group fission are higher. Here we ask whether Trinidadian guppies (Poecilia reticulata) living in high or low predation environments, and thereby facing differential group fission costs, make collective decisions in line with this prediction. Using a classic decision-making scenario, we found that fish from high predation environments switched their positions within groups more frequently than fish from low predation environments. Because the relative positions individuals adopt in moving groups can influence their contribution towards group decisions, increased positional switching appears to support the prediction of more evenly distributed decision-making in populations where group fission costs are higher. In an agent-based model, we further identified that more frequent, asynchronous updating of individuals' positions could explain increased positional switching, as was observed in fish from high predation environments. Our results are consistent with theoretical predictions about the structure of collective decision-making and the adaptability of social decision-rules in the face of different environmental contexts

Collective decision-making appears more egalitarian in populations where group fission costs are higher

Collective decision-making is predicted to be more egalitarian in conditions where the costs of group fission are higher. Here we ask whether Trinidadian guppies (Poecilia reticulata) living in high or low predation environments, and thereby facing differential group fission costs, make collective decisions in line with this prediction. Using a classic decision-making scenario, we found that fish from high predation environments switched their positions within groups more frequently than fish from low predation environments. Because the relative positions individuals adopt in moving groups can influence their contribution towards group decisions, increased positional switching appears to support the prediction of more evenly distributed decision-making in populations where group fission costs are higher. In an agent-based model, we further identified that more frequent, asynchronous updating of individuals' positions could explain increased positional switching, as was observed in fish from high predation environments. Our results are consistent with theoretical predictions about the structure of collective decision-making and the adaptability of social decision-rules in the face of different environmental contexts

Additional file 2 of A systematic analysis of splicing variants identifies new diagnoses in the 100,000 Genomes Project

Additional file 2. Table S1. Prioritised variants

Additional file 3 of A systematic analysis of splicing variants identifies new diagnoses in the 100,000 Genomes Project

Additional file 3. Table S2. Candidate variants