Research from behavioural sciences shows that people reach decisions in a much less rational and well-considered way than was often assumed. The doctrine of informed consent, which is an important ethical principle and legal requirement in medical practice, is being challenged by these insights into decision-making and real-world choice behaviour. This article discusses the implications of recent insights of research on decision-making behaviour for the informed consent doctrine. It concludes that there is a significant tension between the often non-rational choice (...) behaviour and the traditional theory of informed consent. Responsible ways of dealing with or solving these problems are considered. To this end, patient decisions aids are discussed as suitable interventions to support autonomous decision-making. However, current PDAs demand certain improvements in order to protect and promote autonomous decision-making. Based on a conception of autonomy, we will argue which type of improvements are needed. (shrink)

Compassionate care is a foundation of the National Health Service. However, several high-profile inquiries into healthcare failures in the NHS suggest compassion is often absent in our hospitals. Ensuing policies mandate healthcare professionals to ‘show more compassion’ but, as the psychological evidence-base indicates, this instruction neglects the complexity of this social emotion. This paper applies the psychological research on compassion to modern healthcare settings with the aim of creating a better understanding of the pathways leading to uncompassionate care. A review (...) of the empirical evidence suggests a range of psychological factors modulate compassion. In particular, the psychological literature indicates the human compassion system is adaptive, highly attuned to its environment. As such, a healthcare professional’s ability to experience and display compassionate behaviour will be, in part, determined by the environment in which they practise; that is, aspects of the organisational environment will either facilitate or inhibit compassion. This paper argues that the typical organisational set-up of a modern healthcare setting seriously undermines compassionate care. Organisational features frequently associated with uncompassionate care include the understaffing of hospital wards, excessive working shift patterns and the dogged focus on achieving service efficiencies—each has been identified as contributing to the alarming breakdown of compassionate care at the centre of several healthcare failings. Policies focusing on culture change in the NHS neglect the growing psychological evidence base on compassion, but by applying a psychological understanding of compassion to healthcare settings, we can begin to adequately understand and address the real causes of uncompassionate care. (shrink)

Recent years have seen the rise of ‘Just Culture’ as an ideal in the patient safety movement, with numerous hospitals and professional organisations adopting a Just Culture response to incidents ranging from non-culpable human error to intentional misconduct. This paper argues that there is a deep problem with the Just Culture model, resulting from its impoverished understanding of the value of punitive, fundamentally backward-looking, practices of holding people accountable. I show that the kind of ‘accountability’ and ‘punishment’ contemporary Just Culture (...) advocates endorse disrespects both patients and providers. I claim, first, that punishment is good because it respects participants in the healthcare system by restoring an equilibrium of social and moral status that wrongdoing disturbs, and, second, that it only does so when it communicates a backward-looking message of resentful blame. (shrink)

It is often claimed that medical professionals are subject to conflicting duties in their role morality. Some hold that the overridden duty taints the professional and generates a patient claim to a form of moral compensation. This paper challenges such a ‘compensation view’ of conflict and argues that it misleadingly makes the role morality into a personal contract between professional and patient. Two competing views are therefore considered. The ‘unity view’ argues that there are no real conflicts between professional duties. (...) Hence, there can be no residual duties that are impossible to discharge and no special claim on the part of the patient. It is argued that this fails because the institutional nature of the role morality requires us to accept possibility of conflict. The paper articulates and defends a third view, where conflict triggers a professional duty of restitution. This duty is not a matter of making amends for a previous wrong, but rather a matter of rebuilding a trusting relationship that has been damaged due to blameless circumstances. (shrink)

Patients have received experimental pharmaceuticals outside of clinical trials for decades. There are no industry-wide best practices, and many companies that have granted compassionate use, or ‘preapproval’, access to their investigational products have done so without fanfare and without divulging the process or grounds on which decisions were made. The number of compassionate use requests has increased over time. Driving the demand are new treatments for serious unmet medical needs; patient advocacy groups pressing for access to emerging treatments; internet platforms (...) enabling broad awareness of compelling cases or novel drugs and a lack of trust among some that the pharmaceutical industry and/or the FDA have patients’ best interests in mind. High-profile cases in the media have highlighted the gap between patient expectations for compassionate use and company utilisation of fair processes to adjudicate requests. With many pharmaceutical manufacturers, patient groups, healthcare providers and policy analysts unhappy with the inequities of the status quo, fairer and more ethical management of compassionate use requests was needed. This paper reports on a novel collaboration between a pharmaceutical company and an academic medical ethics department that led to the formation of the Compassionate Use Advisory Committee. Comprising medical experts, bioethicists and patient representatives, CompAC established an ethical framework for the allocation of a scarce investigational oncology agent to single patients requesting non-trial access. This is the first account of how the committee was formed and how it built an ethical framework and put it into practice. (shrink)