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. 2017 Feb;20(2):170-176.
doi: 10.1089/jpm.2016.0286. Epub 2016 Oct 20.

Is There Hope? Is She There? How Families and Clinicians Experience Severe Acute Brain Injury

Rachael E C Schutz  1 , Heather L Coats  2 , Ruth A Engelberg  2 , J Randall Curtis  2 , Claire J Creutzfeldt  3
Affiliations

Is There Hope? Is She There? How Families and Clinicians Experience Severe Acute Brain Injury

Rachael E C Schutz et al. J Palliat Med. 2017 Feb.

Abstract

Background: Patients with severe acute brain injury (SABI) raise important palliative care considerations associated with sudden devastating injury and uncertain prognosis.

Objective: The goal of this study was to explore how family members, nurses, and physicians experience the palliative and supportive care needs of patients with SABI receiving care in the neuroscience intensive care unit (neuro-ICU).

Design: Semistructured interviews were audiotaped, transcribed, and analyzed using thematic analysis.

Setting/subjects: Thirty-bed neuro-ICU in a regional comprehensive stroke and level-one trauma center in the United States. We completed 47 interviews regarding 15 patients with family members (n = 16), nurses (n = 15), and physicians (n = 16).

Results: Two themes were identified: (1) hope and (2) personhood. (1) Families linked prognostic uncertainty to a need for hope and expressed a desire for physicians to acknowledge this relationship. The language of hope varied depending on the participant: clinicians used hope as an object that can be given or taken away, generally in the process of conveying prognosis, while families expressed hope as an action that supported coping with their loved one's acute illness and its prognostic uncertainty. (2) Participants described the loss of personhood through brain injury, the need to recognize and treat the brain-injured patient as a person, and the importance of relatedness and connection, including personal support of families by clinicians.

Conclusions: Support for hope and preservation of personhood challenge care in the neuro-ICU as identified by families and clinicians of patients with SABI. Specific practical approaches can address these challenges and improve the palliative care provided to patients and families in the neuro-ICU.

Keywords: ICU/critical care issues in palliative care; hospital-specific palliative care issues; neurology-specific areas of palliative care; prognostication.

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