‘This In-Between’: How Families Talk about Death in Relation to Severe Brain Injury and Disorders of Consciousness

Kitzinger, Celia; Kitzinger, Jenny

doi:10.1057/9781137391919_13

Cited by 18 publications

(17 citation statements)

References 25 publications

(11 reference statements)

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“…The research reported here contributes to the medical sociology literature which explores the social construction of death and dying (Kaufman 2005, Kitzinger and Kitzinger, in press) and, more specifically, to the emerging body of clinical and bioethical literature addressing the ‘window of opportunity’ for allowing death (e.g. Crippen 2005, Cochrane 2009, Honeybul et al 2011, Kon 2009, Wilkinson 2011).…”

Section: Resultsmentioning

confidence: 99%

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

Kitzinger

2012

Sociology Health & Illness

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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.

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Section: Resultsmentioning

confidence: 99%

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

Kitzinger

2012

Sociology Health & Illness

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122

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“…One talked of the bedside vigil as a special family time-we "just sat with her. We were just letting her go" (David, F1) and the death itself was experienced as a "release"-not just from the dying process but from the months or years of the patient (and their family) being suspended (as we found families describing in our earlier analysis) 28 "in limbo"-"between life and death." One interviewee commented "we were sad of course, but just relieved that he is finally at peace" (Hannah, F4).…”

Section: (Sylvia F5)mentioning

confidence: 99%

Deaths after feeding-tube withdrawal from patients in vegetative and minimally conscious states: A qualitative study of family experience

Kitzinger

Kitzinger²

2018

Palliat Med

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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.

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“…5 This complex and ambiguous loss 6 of experiencing of profound loss and grief at the same time the person is still alive and present 5,7–9 has been described by some caregivers as a state of being ‘present, but absent’ 7 and by others as ‘living, but dead’. 10…”

Section: Introductionmentioning

confidence: 99%

The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies

et al. 2017

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Review methods: Studies were included that used quantitative methodologies and psychological measures to investigate experiences. The PRISMA statement was followed with inclusion criteria set a priori. A data synthesis summarised psychological constructs studied.Results: A total of 18 studies (ranging between n=16 -487 participants) met the inclusion criteria with 15 of 18 studies focused on the primary caregiver. A total of 23 standardized psychological measures were identified to assess four primary psychological constructs: Loss and grief, psychological wellbeing changes, burden and use of coping strategies.Conclusions: Small sample sizes, limited variables and reliance on observational methods affected quality. Caregivers do find ways to manage independently, but some exhibit clinically significant psychological distress that does not change over time alone and may get worse.3

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‘This In-Between’: How Families Talk about Death in Relation to Severe Brain Injury and Disorders of Consciousness

Cited by 18 publications

References 25 publications

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

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

Deaths after feeding-tube withdrawal from patients in vegetative and minimally conscious states: A qualitative study of family experience

The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies

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