Neurologic Critical Care

Adapting to a New Normal After Severe Acute Brain Injury: An Observational Cohort Using a Sequential Explanatory Design

Rutz Voumard, Rachel MD^1,2; Kiker, Whitney A. MD^3,4; Dugger, Kaley M. BA¹; Engelberg, Ruth A. PhD^3,4; Borasio, Gian Domenico MD²; Curtis, J. Randall MD^3,4; Jox, Ralf J. PhD^2,5; Creutzfeldt, Claire J MD^1,4

Author Information

¹ Department of Neurology, Harborview Medical Center, University of Washington, Seattle, WA.

² Palliative and Supportive Care Service, Department of Medicine, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.

³ Division of Pulmonary, Critical Care and Sleep Medicine, University of Washington, Seattle, WA.

⁴ Cambia Palliative Care Center of Excellence, University of Washington, Seattle, WA.

⁵ Institute of Humanities in Medicine, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s website (http://journals.lww.com/ccmjournal).

Drs. Rutz Voumard, Curtis, Jox, and Creutzfeldt designed the study and wrote the protocol. Drs. Rutz Voumard, Kiker, Dugger and Creutzfeldt were responsible for data acquisition and management. Drs. Rutz Voumard, Dugger, Engelberg and Creutzfeldt did the data analysis and interpretation. Drs. Kiker, Borasio, Jox, and Curtis did a critical review of the data analysis. Drs. Rutz Voumard and Creutzfeldt wrote the draft of the article. All authors contributed to writing, review and approved the final version of the protocol.

The acronym SuPPOrTT stands for the four questions we asked clinicians and family members: 1) Do the patient or family require social, spiritual, or emotional Support? 2) Does the patient have Pain or other distressing symptoms? 3) Does the family have concerns about Prognosis or treatment Options? and 4) Do we need (re-)address goals-of-care or Target Treatment to patient-centered goals?

Dr. Rutz Voumard received funding a grant from the Swiss National Science Foundation (P400PM_186732). Dr. Dugger’s institution received funding from the National Institutes of Health (NIH) and Swiss National Science Foundation; she received support for article research from NIH and Swiss National Science Foundation. Dr. Creutzfeldt’s institution received funding from a career development award from the National Institute of Neurological Disorders and Stroke (K23 NS099421). The remaining authors have disclosed that they do not have any potential conflicts of interest.

All coauthors had full access to all the data in the study and had final responsibility for the decision to submit the publication.

Requests for access to the data reported in this article will be considered by the corresponding author.

For information regarding this article, E-mail: [email protected]

Critical Care Medicine 49(8):p 1322-1332, August 2021. | DOI: 10.1097/CCM.0000000000004947

Abstract

OBJECTIVES:

Treatment decisions following severe acute brain injury need to consider patients’ goals-of-care and long-term outcomes. Using family members as respondents, we aimed to assess patients’ goals-of-care in the ICU and explore the impact of adaptation on survivors who did not reach the level of recovery initially considered acceptable.

DESIGN:

Prospective, observational, mixed-methods cohort study.

SETTING:

Comprehensive stroke and level 1 trauma center in Pacific Northwest United States.

PARTICIPANTS:

Family members of patients with severe acute brain injury in an ICU for greater than 2 days and Glasgow Coma Scale score less than 12.

MEASUREMENTS AND MAIN RESULTS:

At enrollment, we asked what level of physical and cognitive recovery the patient would find acceptable. At 6 months, we assessed level of recovery through family surveys and chart review. Families of patients whose outcome was below that considered acceptable were invited for semistructured interviews, examined with content analysis.

RESULTS:

For 184 patients, most family members set patients’ minimally acceptable cognitive recovery at “able to think and communicate” or better (82%) and physical recovery at independence or better (66%). Among 170 patients with known 6-month outcome, 40% had died in hospital. Of 102 survivors, 33% were able to think and communicate, 13% were independent, and 10% died after discharge. Among survivors whose family member had set minimally acceptable cognitive function at “able to think and communicate,” 64% survived below that level; for those with minimally acceptable physical function at independence, 80% survived below that. Qualitative analysis revealed two key themes: families struggled to adapt to a new, yet uncertain, normal and asked for support and guidance with ongoing treatment decisions.

CONCLUSIONS AND RELEVANCE:

Six months after severe acute brain injury, most patients survived to a state their families initially thought would not be acceptable. Survivors and their families need more support and guidance as they adapt to a new normal and struggle with persistent uncertainty.

Article Keywords

Keywords
family members, goals-of-care, neuropalliative care, prognosis uncertainty, severe acute brain injury, shared decision-making

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Adapting to a New Normal After Severe Acute Brain Injury: An Observational Cohort Using a Sequential Explanatory Design