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. This may be someone appointed by the patient through a Lasting Power of Attorney, or a Deputy appointed by the court. Otherwise the decision-maker is usually the responsible clinician. Different approaches exist to surrogate decision-making cross-nationally. In England and Wales, decision-making is governed by the MCA 2005, which uses a person-centred, flexible best interests (substituted interests) approach. OBSERVATIONS: The MCA is often not followed in healthcare settings, despite widespread mandatory training. The possible reasons include its focus on single decisions, when multiple decisions are made daily, the potential time involved and lack of clarity about who is the responsible decision-maker. SOLUTION: One solution is to decide a strategic policy to cover more significant (usually health-related) decisions and to separate these from day-to-day relational decisions covering care and activities. Once persistent lack of capacity is confirmed, an early meeting should be arranged with family and friends, to start a process of sharing information about the patient's medical condition and their values, wishes, feelings and beliefs with a view to making timely treatment decisions in the patient's best interests.

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. 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.

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. DESIGN: Qualitative study using in-depth narrative interviews analyzed inductively with thematic analysis. PARTICIPANTS: A total of 21 people (from 12 families) whose vegetative or minimally conscious relative died following court-authorized 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. CONCLUSION: Staff need to be aware of the distinctive issues around care for this patient group and their families. It is 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.

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. It is suggested that families may not be best placed to advocate for their sick family member when they themselves are in a state of shock. AIM: To investigate existing levels of knowledge and awareness of the MCA and understanding of the role of IMCAs in critical care as a prelude to considering whether the role of IMCAs might usefully be extended. The concept of 'IMCA clinics' is introduced and explored. DESIGN AND METHODS: A small-scale qualitative study using thematic analysis of 15 interviews across two NHS sites and a survey of IMCA services were undertaken. RESULTS: Some knowledge of the MCA was evident across both study sites, but training on MCA remains unsatisfactory, with confusion about the role of IMCAs and when they should become involved. Overall, participants felt that the broader involvement of IMCAs on a regular basis within critical care could be useful. CONCLUSIONS: There was evidence of good practice when instructing IMCAs, but further work needs to be conducted to ensure that critical care staff are informed about the referral process. It was clear that expanding the role of an advocate warrants further investigation. RELEVANCE TO CLINICAL PRACTICE: Further training on the role of IMCAs within critical care is required, and good practice examples should be shared with other units to improve referral rates to the IMCA service and ensure that vulnerable patients are properly represented.

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. We draw on our own experience of supporting families, advocating for patients and training healthcare 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.

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.

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". They can have high expectations of what physiotherapy may deliver but also, at times, express concerns about physiotherapy's potential to cause pain or distress, or even constitute a form of torture if they believe there is no hope for "meaningful" recovery. CONCLUSION: Physiotherapists can make an important contribution to supporting this patient group and their families but it is vital to recognise that family understandings of physiotherapy may differ significantly from those of physiotherapists. Both the delivery and the withdrawal of physiotherapy is highly symbolic and can convey (inadvertent) messages to people about their relative's current and future state. A genuine two-way dialogue between practitioners and families about the aims of physiotherapeutic interventions, potential outcomes and patients' best interests is critical to providing a good service and establishing positive relationships and appropriate treatment. IMPLICATIONS FOR REHABILITATION: Families of people in PVS or MCS consider physiotherapy as a vital part of good care. Clear communication is critical if therapeutic input is withdrawn or reduced. The purpose of physiotherapy interventions can be misinterpreted by family members. Physiotherapists need to clarify what physiotherapy can, and cannot, achieve. Families can find some interventions distressing to witness--explaining to families what interventions involve, what they can expect to see (and hear) may be helpful. Physiotherapists and families can attribute different meanings to physiotherapy. Physiotherapists need to identify how families view interventions and modify their explanations accordingly to enhance information sharing.

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.

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. This discussion of the practical and ethical details of anonymising is designed to add to the largely theoretical literature on this topic and to be of illustrative use to other researchers confronting similar dilemmas.

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.

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. In the context of a largely theoretical literature on anonymization, this article offers concrete examples of the dilemmas we faced and will be of illustrative use to other researchers confronting similar challenges.

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 realities.

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. RESULTS: The medical specialist and the lay person tend to draw on two different interpretative frameworks: a medical science framework, which tends to construct the patient in terms of measurable physical parameters, and an interpretative framework that encompasses the uniqueness of the patient and the relative's relationship to them as a social being. CONCLUSIONS: These differences potentially lead to ruptures in communication between medical professionals and relatives such that that an increased self-consciousness of the framing assumptions being made will facilitate communication and enrich understanding of CDoCs.

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. Our concept emerged through a reading of debates within medical journals alongside an analysis of qualitative data generated by way of a study of accounts of those close to patients: primarily relatives (N = 51); neurologists (N = 4); lawyers (N = 2); and others (N = 5) involved in their health care in the UK.

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. It was also prompted by the recent publication of national clinical guidelines in the UK about the management of prolonged disorders of consciousness. In this editorial we highlight the depth and range of emotional reactions commonly experienced by families with a severely brain injured relative. We suggest that clinicians should understand such emotions as normal responses to a terrible situation, and consider the ways in which clinical practice can be adapted to avoid contributing to family trauma.

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. Having discussed the controversial nature of the permanent vegetative state as a diagnostic category, we turn to the question of the patients' ontological status. Are the permanently vegetative alive, dead, or in some other state? We present empirical data from interviews with relatives of patients, and with experts, to support the view that the ontological state of permanently vegetative patients is unclear: such patients are neither straightforwardly alive nor simply dead. Having defended this view from counter-arguments we turn to the practical question as to how these patients ought to be treated. Some relatives and experts believe it is right for patients to be shifted from their currently unclear ontological state to that of being straightforwardly dead, but many are concerned or even horrified by the only legally sanctioned method guaranteed to achieve this, namely withdrawal of clinically assisted nutrition and hydration. A way of addressing this distress would be to allow active euthanasia for these patients. This is highly controversial; but we argue that standard objections to allowing active euthanasia for this particular class of permanently vegetative patients are weakened by these patients' distinctive ontological status.

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.g. in vegetative or minimally conscious states). Our analysis tracks the decision-making 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.