Severe brain injury, PVS & MCS by Celia Kitzinger
Anonymising qualitative research data can be challenging, especially in highly sensitive contexts... more 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.
Why are patients in permanent comas routinely kept alive?
Aruna Shanbaug died with pneumonia in May 2015 after 42 years in a vegetative state. She was 25 y... more Aruna Shanbaug died with pneumonia in May 2015 after 42 years in a vegetative state. She was 25 years old when, in 1973, she was raped and strangled, leaving her with severe brain damage. Her survival for so long is testimony to the dedicated care provided for her by generations of nurses at the hospital in Mumbai where she had worked. But should we routinely deliver life-prolonging treatments over years or even decades to people who have no realistic chance of ever regaining consciousness?
Purpose: To examine family perceptions of physiotherapy provided to relatives in vegetative or mi... more 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.
Clinical Rehabilitation, 2014
The training and expertise of healthcare professionals in diagnosing and treating pathology can m... more 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.
Elder Law Journal, 2014
Advance Decisions (formerly known as 'living wills' have statutory force under ss. 24-26 of the M... more Advance Decisions (formerly known as 'living wills' have statutory force under ss. 24-26 of the Mental Capacity Act in England and Wales. They allow people to specify which medical treatments they wish to refuse (e.g. clinically assisted nutrition and hydration) under specified circumstances (e.g. with advanced dementia) in the event that they subsequently lose the capacity to make or communicate those refusals themselves. To be effective in practice advance decisions must (1) reflect the client's wishes; (2) be available when needed; (3) meet with compliance from health care providers (or, in necessary, the courts). This article lays out ways in which solicitors can assist clients on all three fronts. Solicitors who are aware of the findings reported here will be able to maximise the likelihood that a client's wishes for refusal of treatment will be respected.
Qualitative researchers attempting to protect the identities of their research participants now f... more 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.
Anonymising qualitative research data can be challenging, especially in highly sensitive contexts... more 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.
Giving treatment to a patient who cannot consent to it is
lawful only if (a) it is in the patien... more Giving treatment to a patient who cannot consent to it is
lawful only if (a) it is in the patient’s best interests to receive
it and (b) the patient has made no prior legal decision
refusing it. In law, the key question is not whether withholding or
withdrawing treatment from a severely brain injured patient
is lawful, but rather whether it is lawful to administer
treatments without consent. That question should be asked
about every treatment the person receives. Drawing on our research based on interviews with 65 relatives of people in vegetative or minimally conscious states, the timeline presented in this booklet is a condensed and simplified representation of the legal situation as laid out
in the Mental Capacity Act 2005 (together with its Code of
Practice) and the professional advice given in the national
clinical guidelines from the Royal College of Physicians. It highlights a set of ‘decision points’ at which the legality of administering or continuing with life prolonging treatments should be considered when a patient
is unable to consent.
Journal of Medical Ethics, 2014
In W v M, family members made an application to the Court of Protection for withdrawal of artific... more 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.
Throughout affluent societies there are growing numbers of people who survive severe brain injuri... more 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.
It’s almost like living with a dead person. Some people say, ‘you’ve still got her’. No I haven’t... more It’s almost like living with a dead person. Some people say, ‘you’ve still got her’. No I haven’t. (Mother of a daughter in a permanent vegetative state, caring for her at home.)
I only thought in terms of life and death … not this, this in-between. (Father of a son, who had been in a minimal conscious state.)
And I’d thought of every single possibility. But I hadn’t thought of this one. Because I didn’t even know it existed. (Sister of a woman in a permanent vegetative state.)
These comments encapsulate some common themes in how people describe having a severely brain-injured relative in a coma-like condition, medically known as a ‘disorder of consciousness’. In the past it was highly unusual for such individuals to survive very long after the initial trauma that caused their injury....
Medicine, Health Care and Philosophy, 2014
Some brain injured patients are left in a permanent vegetative state, i.e., they have irreversibl... more 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.
Legal Studies, 2014
This paper addresses, from a socio-legal perspective, the question of the significance of law for... more 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.
We are both social science professors with established research careers in the area of health and... more We are both social science professors with established research careers in the area of health and communication. We are the founding Co-Directors of the York-Cardiff Chronic Disorders of Consciousness Research Centre -an interdisciplinary group of scholars across two universities carrying out research on the historical, sociological, ethical, legal and economic aspects of coma, the vegetative state and the minimally conscious state. More information is available on our websites at:
Abstract This article builds on and develops the emerging bioethics literature on the 'window of ... more 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 (eg in vegetative or minimally conscious states).
M, Polly, and the right to die
Another landmark right-to-die case hit the U.K. headlines last week. A High Court judge ruled, in... more Another landmark right-to-die case hit the U.K. headlines last week. A High Court judge ruled, in W v M & Ors [2011] EWHC 2443 (Fam), that a 52-year- old woman in a minimally conscious state (after contracting viral encephalitis nearly 10 years ago) cannot be allowed to die (by having artificial nutrition and hydration withdrawn) as her family says she would want. Media responses covered the full range of views – from very critical (“’M’ condemned to suffer”) to supportive ("Families must not have the right to play executioner") on the judge’s decision.
Read more: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=5557&blogid=140#ixzz1bPXELnrW
This article builds on and develops the emerging bioethics literature on the 'window of opportuni... more 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.
M, Polly, and the right to die
Another landmark right-to-die case hit the U.K. headlines last week. A High Court judge ruled, in... more Another landmark right-to-die case hit the U.K. headlines last week. A High Court judge ruled, in W v M & Ors [2011] EWHC 2443 (Fam), that a 52-year- old woman in a minimally conscious state (after contracting viral encephalitis nearly 10 years ago) cannot be allowed to die (by having artificial nutrition and hydration withdrawn) as her family says she would want. Media responses covered the full range of views – from very critical (“’M’ condemned to suffer”) to supportive ("Families must not have the right to play executioner") on the judge’s decision.
Read more: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=5557&blogid=140#ixzz1bPXELnrW
Conversation Analysis by Celia Kitzinger
The skills of talking with women who have had unhappy birth
experiences rarely find a place in mi... more The skills of talking with women who have had unhappy birth
experiences rarely find a place in midwifery education. Nor is it
apparent from the literature just what these skills are, or how
they can be implemented in the moment-by-moment unfolding
of an interaction. Yet this is a vital part of any relationship that
offers continuous support to women through the transition to
motherhood. We have recorded more than 400 calls to the Birth
Crisis help-line, and used conversation analysis to explore the
skills deployed in these interactions. We show some examples
from the calls and describe how we use our analyses as a basis
for workshops with midwives and other caregivers.
Uploads
Severe brain injury, PVS & MCS by Celia Kitzinger
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.
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.
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.
lawful only if (a) it is in the patient’s best interests to receive
it and (b) the patient has made no prior legal decision
refusing it. In law, the key question is not whether withholding or
withdrawing treatment from a severely brain injured patient
is lawful, but rather whether it is lawful to administer
treatments without consent. That question should be asked
about every treatment the person receives. Drawing on our research based on interviews with 65 relatives of people in vegetative or minimally conscious states, the timeline presented in this booklet is a condensed and simplified representation of the legal situation as laid out
in the Mental Capacity Act 2005 (together with its Code of
Practice) and the professional advice given in the national
clinical guidelines from the Royal College of Physicians. It highlights a set of ‘decision points’ at which the legality of administering or continuing with life prolonging treatments should be considered when a patient
is unable to consent.
I only thought in terms of life and death … not this, this in-between. (Father of a son, who had been in a minimal conscious state.)
And I’d thought of every single possibility. But I hadn’t thought of this one. Because I didn’t even know it existed. (Sister of a woman in a permanent vegetative state.)
These comments encapsulate some common themes in how people describe having a severely brain-injured relative in a coma-like condition, medically known as a ‘disorder of consciousness’. In the past it was highly unusual for such individuals to survive very long after the initial trauma that caused their injury....
Read more: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=5557&blogid=140#ixzz1bPXELnrW
Read more: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=5557&blogid=140#ixzz1bPXELnrW
Conversation Analysis by Celia Kitzinger
experiences rarely find a place in midwifery education. Nor is it
apparent from the literature just what these skills are, or how
they can be implemented in the moment-by-moment unfolding
of an interaction. Yet this is a vital part of any relationship that
offers continuous support to women through the transition to
motherhood. We have recorded more than 400 calls to the Birth
Crisis help-line, and used conversation analysis to explore the
skills deployed in these interactions. We show some examples
from the calls and describe how we use our analyses as a basis
for workshops with midwives and other caregivers.