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

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.

Figure 1a.

Patients’ presumed goals-of-care at enrollment: “Looking at 6 months or so from now, how much better does your loved one need to get that they would say that ‘all of this medical care was worth going through’?”, n=184.

1. As long as he/she survives, even if he/she remains unconscious - unable to interact with the environment or people - (Survive)

2. As long as he/she is awake even if with limited interaction - for example, able to look around but not recognize, or able to smile but not understand or speak – (Awake)

3. As long as he/she can think and communicate, even if it is not the way he/she used to be (Think & Comm)

4. Only if he/she can return to their previous, normal cognitive abilities (Back to normal)

5. As long as he/she survives, even if he/she remains unconscious (Survive)

6. As long as he/she is awake even if bedridden and/or dependent on others for toileting and feeding (Awake)

7. As long as he/she can walk, toilet and feed him/herself independently - without needing help - (Independent)

8. Only if they can return to previous, normal physical abilities (Back to normal)

Figure 1b.

Actual outcomes 6 months after SABI among patients that survived the hospital stay in relation to their goals-of-care as initially presumed by their families, n=102 and 98.

Figure 2.

Conceptual Model of the two key themes identified in this study as they relate to long-term outcome after SABI.