Caring for People with Severe Brain Injuries: Improving Health Care Professional Communication and Practice Through Online Learning.

Introduction: Severe brain injuries can leave people in prolonged disorder of consciousness resulting in multifaceted medical, nursing, and rehabilitative needs that can be challenging for even the most experienced multidisciplinary team. The complexities of care, communication with families, and best interest decision-making about medical interventions means there is a need for ongoing training in clinical, social, ethical, and legal aspects.

Methods: Using a combination of group discussions, interviews, and questionnaires with learners, this article reports an evaluation of designing and delivering an interprofessional, online work-based course to health care professionals caring for prolonged disorder of consciousness patients.

Supporting families involved in court cases about life-sustaining treatment: Working as academics, advocates and activists.

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.

Deaths after feeding-tube withdrawal from patients in vegetative and minimally conscious states: A qualitative study of family experience.

Background: Families of patients in vegetative or minimally conscious states are often horrified by the suggestion of withdrawing a feeding tube, even when they believe that their relative would not have wanted to be maintained in their current condition. Very little is known about what it is like to witness such a death.

Aim: To understand these families' experience of their relatives' deaths.

When 'Sanctity of Life' and 'Self-Determination' clash: Briggs versus Briggs [2016] EWCOP 53 - implications for policy and practice.

In a landmark judgment in the English Court of Protection, the judge (Charles J) found it to be in the best interests of a minimally conscious patient for clinically assisted nutrition and hydration (CANH) to be withdrawn, with the inevitable consequence that the patient would die. In making this judgment, it was accepted that the patient's level of consciousness - if CANH were continued and rehabilitation provided - might improve, and that he might become capable of expressing emotions and making simple choices. The decision to withdraw treatment relied on a best interests decision, which gave great weight to the patient's past wishes, feelings, values and beliefs, and brought a 'holistic' approach to understanding what this particular patient would have wanted.

Is there a broader role for independent mental capacity advocates in critical care? An exploratory study.

Background: This research explores the current and potential future role of independent mental capacity advocates (IMCAs) in critical care. The Mental Capacity Act (MCA) of 2005 introduced IMCAs as advocates for patients without anyone to represent their best interests, but research suggests that this role is not well understood or implemented. No existing research explores the role of IMCAs in critical care or their potential use when families are judged 'appropriate to act' on the patient's behalf.

Causes and consequences of delays in treatment-withdrawal from PVS patients: a case study of [2016] EWCOP 32.

Life-extending treatment, in the form of artificial nutrition and hydration, is often provided to people in permanent vegetative states (PVS) in England and Wales for many years, even when their family believes the patient would not want it and despite the fact that no court in the UK has ever found in favour of continuing such treatment for a patient with a confirmed PVS diagnosis. The first half of this article presents a close analysis of the recent case of [2016] EWCOP 32. It examines the causes of delay in bringing this case to court and reaching a final judgment.

Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty.

Background: In most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of 'good death' to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency.

Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: family experiences.

Withdrawal of artificially delivered nutrition and hydration (ANH) from patients in a permanent vegetative state (PVS) requires judicial approval in England and Wales, even when families and healthcare professionals agree that withdrawal is in the patient's best interests. Part of the rationale underpinning the original recommendation for such court approval was the reassurance of patients' families, but there has been no research as to whether or not family members are reassured by the requirement for court proceedings or how they experience the process. The research reported here draws on in-depth narrative interviews with 10 family members (from five different families) of PVS patients who have been the subject of court proceedings for ANH-withdrawal.

Anonymising interview data: challenges and compromise in practice.

Anonymising qualitative research data can be challenging, especially in highly sensitive contexts such as catastrophic brain injury and end-of-life decision-making. Using examples from in-depth interviews with family members of people in vegetative and minimally conscious states, this article discusses the issues we faced in trying to maximise participant anonymity alongside maintaining the integrity of our data. We discuss how we developed elaborate, context-sensitive strategies to try to preserve the richness of the interview material wherever possible while also protecting participants.

Participant Anonymity in the Internet Age: From Theory to Practice.

Qualitative researchers attempting to protect the identities of their research participants now face a multitude of new challenges due to the wealth of information once considered private but now readily accessible online. We will draw on our research with family members of people with severe brain injury to discuss these challenges in relation to three areas: participant engagement with the mass media, the availability of court transcripts online, and participants' use of social media. We suggest strategies for managing these challenges via disguise, refining informed consent, and discussion with interviewees.

Physiotherapy for vegetative and minimally conscious state patients: family perceptions and experiences.

Purpose: To examine family perceptions of physiotherapy provided to relatives in vegetative or minimally conscious states.

Method: Secondary thematic analysis of 65 in-depth narrative interviews with family members of people in vegetative or minimally conscious states.

Results: Families place great significance on physiotherapy in relation to six dimensions: "Caring for the person", "Maximising comfort", "Helping maintain health/life", "Facilitating progress", "Identifying or stimulating consciousness" and "Indicating potential for meaningful recovery".

A diagnostic illusory? The case of distinguishing between "vegetative" and "minimally conscious" states.

Throughout affluent societies there are growing numbers of people who survive severe brain injuries only to be left with long-term chronic disorders of consciousness. This patient group who exist betwixt and between life and death are variously diagnosed as in 'comatose', 'vegetative', and, more recently, 'minimally conscious' states. Drawing on a nascent body of sociological work in this field and developments in the sociology of diagnosis in concert with Bauman's thesis of 'ambivalence' and Turner's work on 'liminality', this article proposes a concept we label as diagnostic illusory in order to capture the ambiguities, nuanced complexities and tensions that the biomedical imperative to name and classify these patients give rise to.

Interpreting chronic disorders of consciousness: medical science and family experience.

Rationale, Aims And Objectives: Chronic disorders of consciousness (CDoC) pose significant problems of understanding for both medical professionals and the relatives and friends of the patient. This paper explores the tensions between the different interpretative resources that are drawn upon by lay people and professionals in their response to CDoC.

Methods: A philosophical analysis of data from 51 interviews with people who have relatives who are (or have been) in a vegetative or minimally conscious state.

Grief, anger and despair in relatives of severely brain injured patients: responding without pathologising.

The training and expertise of healthcare professionals in diagnosing and treating pathology can mean that every situation is treated as an instance of illness or abnormality requiring treatment. This medicalised perspective is often evident in clinical approaches to family members of people with prolonged disorders of consciousness. This editorial was stimulated by reviewing an article (final version now published in this issue) concerning the distress of families with severely brain injured relatives,(2) and by reading the larger body of literature to which that article contributes.

Death, treatment decisions and the permanent vegetative state: evidence from families and experts.

Some brain injured patients are left in a permanent vegetative state, i.e., they have irreversibly lost their capacity for consciousness but retained some autonomic physiological functions, such as breathing unaided.

Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives.

In W v M, family members made an application to the Court of Protection for withdrawal of artificial nutrition and hydration from a minimally conscious patient. Subsequent scholarly discussion has centred around the ethical adequacy of the judge's decision not to authorise withdrawal. This article brings a different perspective by drawing on interviews with 51 individuals with a relative who is (or was) in a vegetative or minimally conscious state (MCS).

Reporting consciousness in coma: media framing of neuro-scientific research, hope, and the response of families with relatives in vegetative and minimally conscious states.

This paper examines the public representation of, and family responses to, scientific studies into consciousness in coma-like states. We examine the publicity surrounding high-profile studies using functional Magnetic Resonance Imaging (fMRI) on 'vegetative' or 'minimally conscious' patients and compare this with family views. Our findings show how, with a few notable exceptions, the research was presented as an amazing breakthrough offering a potential 'voice' and choice for patients and hope and comfort for their families.

The 'window of opportunity' for death after severe brain injury: family experiences.

This article builds on and develops the emerging bioethics literature on the 'window of opportunity' for allowing death by withholding or withdrawing treatment. Our findings are drawn from in-depth interviews with 26 people (from 14 different families) with severely brain injured relatives. These interviews were specifically selected from a larger study on the basis of interviewees' reports that their relatives would not have wanted to be kept alive in their current condition (e.

Bimbo or boffin? Women in science: an analysis of media representations and how female scientists negotiate cultural contradictions.

This paper examines the gendered representations of scientists in the UK media. Our analysis reveals the asymmetrical ways in which men and women working in science, engineering and technology are portrayed, in particular through the emphasis on women's appearance and a focus on their exceptional status. It also highlights the way female scientists may be used to "sex up" the discipline in the context of increasing concern about the (un)popularity of science.

The wealthy get healthy, the poor get poorly? Lay perceptions of health inequalities.

Research repeatedly identifies an association between health and socio-economic status-richer people are healthier than poorer people. Richard Wilkinson has posited that socio-psychological mechanisms may be part of the explanation for the fact that socio-economic inequalities run right across the social spectrum in wealthy societies. He argues that polarised income distributions within countries have a negative impact on stress, self-esteem and social relations which, in turn, impact on physical well-being.