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

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

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 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

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

Increasing understanding and uptake of advance decisions in Wales

An ‘Advance Decision’ is a legally binding record (given statutory force by the Mental Capacity Act 2005) of the treatments that someone wishes to refuse if they lose capacity to make such decisions for themselves in future. The Mental Capacity Act 2005 refers to them as ‘Advance Decisions’ (s. 24(1)): given widespread confusion about the terminology associated with end-of-life planning tools, we have often opted in this report to use the term ‘Advance Decisions to Refuse Treatment’ (ADRTs), Barriers to uptake of ADRTs include misunderstanding about what is involved; scepticism about whether they will be respected; and the mistaken belief that an ADRT is unnecessary if people have already informed family members or healthcare professionals of their wishes. There is widespread misunderstanding about the power of family members to give or withhold consent for adult relatives, and misinformation and confusion about the distinctive legal status of ADRTs (compared with other advance planning tools). This report examines the legal position and identifies ways of increasing awareness and uptake of ADRTs in Wales. It suggests that the Welsh Government has a key role to play, alongside partner organisations such as charities, in promoting better understanding of ADRTs and ensuring that people’s right to refuse treatment is respected through: - Public education, media engagement and cultural events to encourage people to plan for potential future loss of capacity; - De-bunking the myth that ‘next of kin’ have decision-making powers and correcting official forms that may mislead people about the legal status of their own or a relative’s expressed wishes; - Facilitating access to well designed ADRT forms/guidance and skilled support, both for the general population and for particular groups; - Normalising ADRTs (e.g. offering registration when patients sign up with a GP); - Training relevant practitioners to ensure that they understand what ADRTs are (and when they are valid and applicable), are able to provide appropriate guidance or referral, and can act in accordance with the law concerning them; - Creating an All-Wales national repository – flagging key emergency decisions and ensuring accessibility of full ADRT documentation

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

Abstract 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.g. in vegetative or minimally conscious states). Our analysis tracks the decisionmaking processes that have led to the situation in which life-sustaining treatments continue to be delivered to these patients -maintaining them in a state that some families describe as a 'fate worse than death'. We show how the medico-legal 'window of opportunity' for allowing the patient to die structures family experience and fails to deliver optimal outcomes for patients. We end with some suggestions for change

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). Most professional medical ethicists have treated the issue as one of life versus death; by contrast, families—including those who believed that their relative would not have wanted to be kept alive—focused on the manner of the proposed death and were often horrified at the idea of causing death by ‘starvation and dehydration’. The practical consequence of this can be that people in permanent vegetative state (PVS) and MCS are being administered life-prolonging treatments long after their families have come to believe that the patient would rather be dead. We suggest that medical ethicists concerned about the rights of people in PVS/ MCS need to take this empirical data into account in seeking to apply ethical theories to medico-legal realitie