Making healthcare decisions in a person's best interests when they lack capacity: clinical guidance based on a review of evidence.

Objective: To clarify the concept of best interests, setting out how they should be ascertained and used to make healthcare decisions for patients who lack the mental capacity to make decisions.

Context: The legal framework is the Mental Capacity Act (MCA) 2005, which applies to England and Wales.

Theory: Unless there is a valid and applicable Advance Decision, an appointed decision-maker needs to decide for those without capacity.

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be in the best interests of a minimally conscious patient for clinically assisted nutrition and hydration (CANH) to be withdrawn, with the inevitable consequence that the patient would die.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.

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).

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.

Calls to a home birth helpline: empowerment in childbirth.

In the UK a woman has the right to decide to give birth at home, irrespective of whether she is expecting her first or a subsequent child and of any perceived 'risk' factors. However, the rate of home births in the UK is very low (around 2%), varies widely across the country and many women do not know how to arrange midwifery cover. The Home Birth helpline is a UK-based voluntary organisation offering support and information for women planning a home birth.

'Kids are just cruel anyway': lesbian and gay parents' talk about homophobic bullying.

Psychologists recognize homophobic bullying as a serious problem for young lesbians and gay men; however, when it comes to children in lesbian and gay households the issue is not so clear cut. Some psychologists sympathetic to lesbian and gay parenting regard it as a problem, but most do not. Despite this, the inevitability and severe psychological consequences of homophobic bullying is a prevalent theme in discussions of lesbian and gay parenting in contexts ranging from custody cases to television talk shows, and is used to implicate lesbians and gay men as unfit to parent.

Attitudes towards lesbians and gay men and support for lesbian and gay human rights among psychology students.

A questionnaire comprising two scales, the short form of the Attitudes Towards Lesbians and Gay Men Scale (ATLG-S; Herek, 1984) and the newly devised Support for Lesbian and Gay Human Rights Scale (SLGHR) were administered to 226 students taking undergraduate psychology courses at universities in the United Kingdom, to assess their attitudes towards lesbians and gay men, and their level of support for lesbian and gay human rights. The results indicated that whilst only a small percentage of respondents expressed negative attitudes towards lesbians and gay men on the ATLG-S, the sample as a whole did not overwhelmingly support lesbian and gay human rights. The lack of support for lesbian and gay human rights is discussed in relation to its implications for psychology students as future practitioners and policymakers.