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Altruism has long been taken to be the guiding principle of ethical organ donation in the UK, and has been used as justification for rejecting or allowing certain types of donation. We argue that, despite this prominent role, altruism has been poorly defined in policy and position documents, and used confusingly and inconsistently. Looking at how the term has been used over recent years allows us to define ‘organ donation altruism’, and comparing this with accounts in the philosophical literature highlights its theoretical shortcomings. The recent report from the Nuffield Council on Bioethics reaffirmed the importance of altruism in organ donation, and offered a clearer definition. This definition is, however, more permissive than that of altruism previously seen in UK policy, and as a result allows some donations that previously have been considered unacceptable. We argue that while altruistic motivation may be desirable, it is not necessary.

Over the last decade, patient and public involvement (PPI) has become a requisite in applied health research. Some funding bodies demand explicit evidence of PPI, while others have made a commitment to developing PPI in the projects they fund. Despite being commonplace, there remains a dearth of engagement with the ethical and theoretical underpinnings of PPI processes and practices. More specifically, while there is a small (but growing) body of literature examining the effectiveness and impact of PPI, there has been relatively little reflection on whether the concept/practice of PPI is internally coherent. Here, the authors unpick a 'paradox' within PPI, which highlights a tension between its moral and pragmatic motivations and its implementation. The authors argue that this 'professionalisation paradox' means we need to rethink the practice, and purpose, of PPI in research.

Healthcare workers (HCWs) are often assumed to have a duty to work, even if faced with personal risk. This is particularly so for professionals (doctors and nurses). However, the health service also depends on non-professionals, such as porters, cooks and cleaners. The duty to work is currently under scrutiny because of the ongoing challenge of responding to pandemic influenza, where an effective response depends on most uninfected HCWs continuing to work, despite personal risk. This paper reports findings of a survey of HCWs (n = 1032) conducted across three National Health Service trusts in the West Midlands, UK, to establish whether HCWs' likelihood of working during a pandemic is associated with views about the duty to work. The sense that HCWs felt that they had a duty to work despite personal risk emerged strongly regardless of professional status. Besides a strong sense that everyone should pull together, all kinds of HCWs recognised a duty to work even in difficult circumstances, which correlated strongly with their stated likelihood of working. This suggests that HCWs' decisions about whether or not they are prepared to work during a pandemic are closely linked to their sense of duty. However, respondents' sense of the duty to work may conflict with their sense of duty to family, as well as other factors such as a perceived lack of reciprocity from their employers. Interestingly, nearly 25% of doctors did not consider that they had a duty to work where doing so would pose risks to themselves or their families.

ObjectivesPatient-reported outcome measures (PROMs) collected in clinical trials should be administered in a standardised way across sites and routinely screened for avoidable missing data in order to maximise data quality/minimise risk of bias. Recent qualitative findings, however, have raised concerns about the consistency of PROM administration in UK trials. The purpose of this study was to determine the generalisability of these findings across the wider community of trial personnel. DesignOnline cross-sectional survey. SettingParticipants were recruited from 55 UK Clinical Research Collaboration Registered Clinical Trials Units and 19 Comprehensive Local Research Networks.ParticipantsResearch nurses, data managers/coordinators, trial managers and chief/principal investigators involved in clinical trials collecting PROMs.AnalysisWe undertook descriptive analyses of the quantitative data and directed thematic analysis of free-text comments. Factors associated with the management of missing PRO data were explored using logistic regression.ResultsSurvey data from 767 respondents supported the generalisability of qualitative study findings, suggesting inconsistencies in PROM administration with regard to: the level of assistance given to trial participants; the timing of PROM completion in relation to the clinical consultation; and the management of missing data. Having ≥10 years experience in a research role was significantly associated with the appropriate management of missing PROM data (Odds ratio 2.26 (95% CI 1.06 to 4.82), p=.035). There was a consensus that more PROM guidance was needed in future trials and agreement between professional groups about the necessary components.ConclusionsThere are inconsistencies in the way PROMs are administered by trial staff. Such inconsistencies may reduce the quality of data and have the potential to introduce bias. There is a need for improved guidance in future trials that support trial personnel in conducting optimal PROM data collection to inform patient care.

Background An empirical bioethics analysis exploring what palliative inpatients understand as compassion was planned within an Intercalated BMedSc degree. Limited time was available, so to achieve deadlines, a co-developmental approach was employed maximising clinical/research expertise from hospice and university. Aim To study compassion by forming an effective university-hospice research partnership. Methods A multi-disciplinary research team (MDRT) was created comprising a student, academic researcher, hospice nurse and hospice facilitator. Introductory meetings in January 2016 developed a research strategy appropriate to a hospice inpatient unit (IPU). Three members of the MDRT attended the IRAS committee and on-going support ensured governance permissions were obtained. Recruitment over 8 weeks (March–May 2016) was designed to be symbiotic with clinical care, promoting a good experience of exploratory qualitative interviewing. Results and discussion Intense support of the researcher facilitated timely transition through governance. All IPU patients were screened. Nineteen eligible patients were approached and introduced to the study by the nurse who also communicated with the clinical care teams. Six patients were consented by the student and 15–25 minute semi-structured interviews were conducted. Reasons for non-participation varied from feeling tired or poorly to exclusive interest in interventional research trials. Conclusion A MDRT approach can facilitate a qualitative research study in an inpatient hospice. Knowledge of the clinical setting maximised an effective recruitment strategy. Recruitment barriers included time constraints, patient willingness, patient availability, and perceptions of patient capacity and willingness. Ethics and procedural questions around promoting compassion research participation in this potentially vulnerable population can be addressed. Reference Byrne A, Upton L, Townsend S. Mind the gap: a step forward in supporting hospice-based research. BMJ Support Palliat Care 2014;5(1):4–6. doi:10.1136/bmjspcare-2014-000808

Background As agency and capacity decline towards the end of life, compassion becomes an increasingly important and apposite feature of healthcare. Whilst more compassionate healthcare is being called for, especially in end of life contexts, there is relatively little understanding of what compassion actually is, or how it can be enacted. Aim To conduct an empirical bioethics analysis to explore the concept of compassion and how this is understood by patients, in order to inform an ethical analysis of how compassion ought to be conceived and performed in end of life care (EOLC). Methods An exploratory qualitative approach underpinned by Frith’s Symbiotic Empirical Ethics methodology was used. Six semi-structured interviews were conducted in a UK hospice. Results and discussion Compassion was conceived in different ways by different participants, but 6 key themes emerged that patient’s identified as essential to a compassionate experience: ‘caring motivation’, ‘attentive acts’, ‘caring what I care about’, ‘being relational’, ‘response to suffering’ and ‘time.’ However, these themes are not all compatible. Consequently, each constituent of compassion was explored; examining whether each was necessary for an acceptable definition of compassion. From this analysis, a conceptualisation of compassion in EOLC was developed that focuses on compassion being relational, centred on performing attentive individualistic acts. Conclusion Compassionate care should be based on an individual patient’s needs, and this study acts as a reminder that compassionate acts need not be lengthy. Moreover, compassion is a holistic concept, should be treated as such. Finally, through attentive practice, compassion can be ‘learned’. References Bramley L, Matiti M. How does it really feel to be in my shoes? Patients’ experiences of compassion within nursing care and their perceptions of developing compassionate nurses. J Clin Nurs 2014; 23 (19–20):2790–2799 Dewar B, Adamson E, Smith S, et al . Clarifying misconceptions about compassionate care. J Adv Nurs 2013; 70 (8): 1738–1747 Frith L. Symbiotic empirical ethics: a practical methodology. Bioethics 2012; 26 (4):198–206 Wenrich MD, Curtis JR, Ambrozy DA, et al. Dying patients’ need for emotional support and care from physicians: perspectives of patients with terminal illness, families, and health care providers. J Pain Symptom Manage 2003; 25 (3):236–246