Surrogate decision-making for people with disorders of consciousness: considering the control-preferences of informal caregivers before implementing multimodal testing.

backgroundHistorically, individuals with disorders of consciousness (DoC) have often been subject to prognostic pessimism and therapeutic nihilism, leading to clinical decisions that became self-fulfilling prophecies. Recent advances in neurodiagnostics -particularly multimodal assessments of consciousness- offer new opportunities to reduce diagnostic ambiguity and to potentially improve rehabilitation outcomes. These developments have the potential to support more effective care planning. Given their central role in surrogate decision-making, informal caregivers are increasingly recognised as key participants in this evolving process. Yet, little is known about the distribution of their preferred roles in decision-making, especially in light of emerging, technology-informed models of diagnosis. Two research questions guided a multicenter study within the PerBrain project: (1) To what extent do informal caregivers differ in their preferences regarding control over decision-making and (2) does a majority of informal caregivers prefer a collaborative model over other forms of decision-making?

methodsA cross-sectional survey using a modified version of the Control Preferences Scale (CPS) -which measures a person's preferred level of control in medical decision-making- was conducted with informal caregivers of persons with DoC in three medical units in Italy and Germany between March 2021 and June 2023. The participating medical centers were part of the PerBrain project, which investigates multimodal consciousness assessment. Caregivers were recruited consecutively, and data were analysed using descriptive statistics, chi-square tests, and t-tests to assess cross-national differences.

resultsSeventy caregivers completed the survey. Preferences regarding decision-making roles varied: 34 (48.6%) favoured a passive role, 26 (37.1%) preferred a shared or collaborative role, and 10 (14.3%) expressed a preference for an active role. When ranked across all six possible positions (from active to passive options), the collaborative approach was most frequently among the top three choices: 26 (37.1%) ranked it first, 20 (28.6%) second, and 19 (27.1%) third. Statistically significant cross-country differences emerged (χ²(2) = 7.408, p = .025), with German caregivers demonstrating a stronger preference for active participation than their Italian counterparts.

conclusionHealthcare professionals should be attentive to the diversity of decision-making preferences expressed by family caregivers of patients with DoC shortly after the transition from intensive to rehabilitation care. Although SDM is widely regarded as the normative standard in clinical practice, our findings reveal a discrepancy between this standard and the actual preferences of informal caregivers in two similar care settings in two different European countries. The findings add to the literature on uncertainty in surrogate health-care decision-making for people with DoC and raise questions of whether SDM should even be implemented, when it is not the preferred approach of (future) surrogate decision-makers.

trial registrationThe study protocol was registered at ClinicalTrials.gov (identifier: NCT04798456). The study was retrospectively registered on 15 March 2021 for the purpose of transparency. The protocol had been finalized before the start of the data collection. Further details can be accessed at https://clinicaltrials.gov/ct2/show/NCT04798456 .