Real-time Perspectives of Surrogate Decision-Makers Regarding Critical Illness Research

Abstract

Objective : We undertook the current investigation to explore how the pressures of serving as a surrogate decision-maker (SDM) for an acutely ill family member infl uence attitudes regarding clinical investigation. Methods: We conducted a prospective study involving SDMs for critically ill patients cared for in the ICUs of two urban hospitals. Measurements included participation in focus groups designed to explore perceptions of ICU care and clinical research. Audiotapes were transcribed and analyzed to identify common patterns and themes using grounded theory. Demographic and clinical data were summarized using standard statistical methods. Results: Seventy-four SDMs (corresponding to 24% of eligible patients) participated. Most SDMs were women and described long-term relationships with the patients represented. SDMs described their role as "overwhelming," their emotions were accentuated by the fatigue of the ICU experience, and they relied on family members, social contacts, and religion as sources of support. Altruism was reported as a common motivation for potential study participation, a sentiment often strengthened by the critical illness episode. Although research was viewed as optional, some SDMs perceived invitation for research participation as tacit acknowledgment of therapeutic failure. SDMs expressed a preference for observational studies (perceived as low risk) over interventional designs (perceived as higher risk). Trust in the ICU team and the research enterprise seemed tightly linked. Conclusions: Despite signifi cant emotional duress, SDMs expressed interest in investigation and described multiple factors motivating participation. Consent processes that minimize the effects of anxiety may be one strategy to enhance recruitment.

Is there a role for physician involvement in introducing research to surrogate decision makers in the intensive care unit? (The Approach trial: a pilot mixed methods study)

“…We also found that while RCs' impressions of SDMs rationale for providing consent were similar to those expressed by SDMs, their impressions of why SDMs declined consent were qualitatively different with research personnel highlighting that SDMs were overwhelmed [8/32 (25.0 %)] and did not want to change current treatment [7/32 (21.9 %)]. In hypothetical scenarios, escalating study risk was associated with decreased SDM comfort in providing consent [5,19,20]. While underpowered, we did not find differences in consent rates between strategies or based on investigator or SDM-assigned study risk.…”

“…Instead, SDMs valued the personal attributes of kindness, compassion, consideration, and professionalism in the person approaching them over their professional designation. Similar to others, our SDMs expressed a need to appraise the risks and benefits of participation, the potential for participation to benefit the patient or others, and their trust in the health care team [18,20,26]. Additionally, they valued being approached privately and in-person, when not in crisis, and having time to contemplate their decisions and to reflect on personal and patient values regarding research participation.…”

Strategies for Enhancing Family Participation in Research in the ICU: Findings From a Qualitative Study

“…Because critically ill patients frequently lack decision-making capacity, consent and participation in research often falls to patients’ families 1–5 Sending surveys to family members after the death of a patient is a common method for collecting data regarding the quality of palliative care. A previous study demonstrated systematic differences between patients whose family members completed surveys after a patient’s death in the ICU and those who did not.…”

Perspectives of surrogate decision makers for critically ill patients regarding gene variation research

“…35 Participants were recruited from the surgical and medical ICUs of two tertiary-care institutions (Barnes Jewish Hospital (BJH), St. Louis, MO and Parkland Hospital (PH), Dallas, TX). These study sites were chosen because of their demographic and ethnic diversity.…”