Professor Charles Foster1 argues that the recent decision by the Supreme Court2 on the process of making decisions about medical treatment in people who lack capacity due to a prolonged disorder of consciousness is fostering medical paternalism. He considers that the judgment shows ‘ deference to the guidelines of various organisations ’ and then that ‘ The guidance has effectively become a definitive statement of the relevant obligations,’ concluding that ‘ This usurps the function of the law.’ Healthcare teams make (...) all decisions concerning medical care provided; no-one else can. Both the clinicians themselves, and any guidance provided to them, must comply with the Mental Capacity Act 2005.3 Lady Black’s judgment makes clear that ‘ The basic protective structure is established by the MCA 2005 ’ and that the associated Code of Practice4 ‘ contains valuable guidance ’. She specifically highlights that the decision-maker must ensure that ‘ account has been taken of the patient’s previously expressed wishes and those of people close to him, as well as the opinions of other medical personnel. The MCA 2005 requires this to happen, and is reinforced by the professional guidance available to doctors.’ The Act says: ‘ He must consider, so far as is reasonably ascertainable— 1. the person’s past and present wishes and feelings (and, in …. (shrink)

This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology—giving (...) practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda—imposed by the British Research Excellence Framework— for our actions as scholar‐activists. Finally, we ask how practicing at the borders of academia, advocacy, and activism can inform research—helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front‐line practice, law, and public policy. (shrink)

BackgroundIn the ruling inY[2018], the UK Supreme Court has confirmed that there is no general requirement for the courts in England and Wales to authorise the withdrawal of clinically assisted nutrition and hydration from patients with prolonged disorders of consciousness. The perceived requirement, which originated in a court ruling in 1993, encompassed those in the vegetative state and those in the minimally conscious state. The ruling inYconfirms that the court may still be approached to decide difficult or contested cases, but (...) there is otherwise no routine requirement that the judges be approached.Main bodyThere is much to welcome in this ruling, particularly as it means that these decisions for these patients are no longer (unusually) singled out for a judicial decision, with all the financial and emotional costs that court proceedings can entail. However, there is also a risk that the ruling might have unwelcome consequences. First, there is the possibility that patients might die too soon, particularly if doctors should now adopt the courts’ previous reasoning, which has suggested that patients in the vegetative state lack interests, so treatment may – perhaps must – be withdrawn. Secondly, there is the converse possibility that patients might live too long, since empirical research suggests that – whether intentionally or not – patients’ families, clinicians, and the health system appear to promote treatment-by-default.ConclusionRather than adopt general positions, which may be contestable and potentially risky, this article argues, on a pluralistic basis, that the individual patient should be the focus of any decision made in his or her ‘best interests’. The existing legal framework in England and Wales, which is provided by the Mental Capacity Act 2005, already points in this direction, although more efforts may be needed to ensure that those involved in making these decisions are suitably educated and supported. Fortunately, new guidance from the British Medical Association could help clinicians and families to make decisions in the future, which are appropriate for the incapacitated individual patient in question. (shrink)