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 relative’s deaths. Design: Qualitative study using in-depth narrative interviews analysed inductively with thematic analysis. Participants: Twenty-one people (from 12 families) whose vegetative or minimally conscious relative died following court-authorised withdrawal of artificial nutrition and hydration. All had supported treatment-withdrawal. Findings: Interviewees were usually anxious in advance about the nature of the death and had sometimes confronted resistance from, and been provided with misinformation by, healthcare staff in long-term care settings. However, they overwhelmingly described deaths as peaceful and sometimes even as a ‘good death’. There was (for some) a significant ‘burden of witness’ associated with the length of time it took the person to die and/or distressing changes in their appearance. Most continued to voice ethical objections to the manner of death while considering it ‘the least worst’ option in the circumstances. Conclusions: Staff need to be aware of the distinctive issues around care for this patient group and their families. It’s important to challenge misinformation and initiate honest discussions about feeding-tube withdrawal and end-of-life care for these patients. Families (and staff) need better support in managing the ‘burden of witness’ associated with these deaths

Causes and consequences of delays in treatment-withdrawal from PVS patients : a case study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [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 Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32. It examines the causes of delay in bringing this case to court and reaching a final judgment. It draws not only on the published judgment, but also on the two authors' involvement in supporting the family (before, during and subsequent to the court hearings) as a result of their academic and policy-related work in this area. This includes conversations with the family and with members of the clinical and legal teams, and observations in court. The second part of the article draws out the ethical and practical implications of the findings for theory and policy and suggests ways forward in relation to (a) the provision and inspection of care for these patients; (b) legal practice in relation to 'best interests' and (c) the perceived requirement under English law for a court application before life-prolonging treatment can be withdrawn from PVS patients-even in the absence of any 'in principle' opposition

Why futile and unwanted treatment continues for some PVS patients (and what to do about it)

In August 2017 a judge sanctioned withdrawal of clinically assisted nutrition and hydration from a patient who had been sustained in a vegetative state for twenty-three years, finding it “overwhelmingly in his best interests” for treatment to stop, allowing him to die. Injured in 1994, this patient had continued to receive life-sustaining treatment long after clinicians, and his family, had abandoned any hope for recovery and with no evidence that he would have wanted to be kept alive this way. Based on interviews with his parents, and the court hearing, we explore how it came about that he received this treatment for so long. We contextualize this in relation to our wider research about the treatment of severely brain injured patients and ask why, despite guidelines, policies and statute concerning best interests decision-making, thousands of patients in permanent vegetative states are similarly maintained in England and Wales without any formal review of whether continuing clinically assisted nutrition and hydration is in their best interests. We consider the implications for ethics, policy and practice in relation to patients with prolonged disorders of consciousness more broadly, highlighting in particular the actions that need to be taken by clinicians, inspection bodies, Clinical Commissioning Groups and Health Boards across England and Wales

Why futile and unwanted life-prolonging treatment continues for some patients in permanent vegetative states (and what to do about it): Case study, context and policy recommendations

In August 2017 a judge sanctioned withdrawal of clinically assisted nutrition and hydration from a patient who had been sustained in a vegetative state for twenty-three years, finding it “overwhelmingly in his best interests” for treatment to stop, allowing him to die. Injured in 1994, this patient had continued to receive life-sustaining treatment long after clinicians, and his family, had abandoned any hope for recovery and with no evidence that he would have wanted to be kept alive this way. Based on interviews with his parents, and the court hearing, we explore how it came about that he received this treatment for so long. We contextualize this in relation to our wider research about the treatment of severely brain injured patients and ask why, despite guidelines, policies and statute concerning best interests decision-making, thousands of patients in permanent vegetative states are similarly maintained in England and Wales without any formal review of whether continuing clinically assisted nutrition and hydration is in their best interests. We consider the implications for ethics, policy and practice in relation to patients with prolonged disorders of consciousness more broadly, highlighting in particular the actions that need to be taken by clinicians, inspection bodies, Clinical Commissioning Groups and Health Boards across England and Wales

Representing young people's sexuality in the 'youth' media

This paper reports findings from a content analysis of the main messages about sexuality in media outlets consumed by young people. It examines how sexuality is represented and the level of sexual health information provided in some UK magazines and TV programmes targeted at young people. Our findings show that such outlets included a vast range of useful discussion including information about health concerns and in-depth exploration of issues such as consent and examples of couples exploring whether or not they were ‘ready’ for sex. In particular, the right of girls to ‘say no’ was vividly fore-grounded in several teen dramas and magazines. However, coverage was also characterized by certain limitations. A clear pattern was evident whereby contraception and managing ‘how far to go’ were depicted as women's responsibility. There was a limited range of representations for young men, a lack of positive images of lesbian and gay teenagers, and a failure to represent diversity. There were also no examples of how people might raise concerns such as safer sex. In this context, health educators need to be aware of both the richness and the limitations of current mainstream representations in order to work with and through the media to improve the quality and range of material for young people

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 policy makers. </p

When ‘Sanctity of Life’ and ‘Self-Determination’ Clash: Briggs v 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. We draw on our own experience of supporting families, advocating for patients, and training health care professionals in similar situations to consider the implications of the published judgment for policy and practice with patients in prolonged disorders of consciousness and their families

Law in everyday life and death: a socio-legal study of chronic disorders of consciousness

This paper addresses, from a socio-legal perspective, the question of the significance of law for the treatment, care and the end-of-life decision making for patients with chronic disorders of consciousness. We use the phrase ‘chronic disorders of consciousness’ as an umbrella term to refer to severely brain-injured patients in prolonged comas, vegetative or minimally conscious states. Based on an analysis of interviews with family members of patients with chronic disorders of consciousness, we explore the images of law that were drawn upon and invoked by these family members when negotiating the situation of their relatives, including, in some cases, the ending of their lives. By examining ‘legal consciousness’ in this way (an admittedly confusing term in the context of this study,) we offer a distinctly sociological contribution to the question of how law matters in this particular domain of social life

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. We analyse the empirical evidence to understand how family members perceive and experience the process of applying to the courts for ANH-withdrawal and consider the ethical and practice implications of our findings. Our analysis of family experience supports arguments grounded in economic and legal analysis that court approval should no longer be required. We conclude with some suggestions for how we might develop other more efficient, just and humane mechanisms for reviewing best interests decisions about ANH-withdrawal from these patients

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. In order to gain direct access to the issues that are of concern to women when planning a home birth, 80 calls to the helpline were recorded. The aims of this paper are to document the problems that callers to this helpline report having when trying to arrange home births and to explore the strategies the call-taker uses in helping women to exercise their right to birth at home. The paper concludes that women are not easily able to exercise their right to choose the place of birth and suggests a number of recommendations for action