ABSTRACT Background To investigate the attitudes of the Swedish population towards participation in research and preferences regarding legally authorized representative when a participant is unable to give informed consent. Methods A national survey conducted by a Swedish analysis and research company on a representative sample of the Swedish population on two occasions (2020 and 2023). The questions were based on the prerequisite that the respondents could not provide informed consent on their own. The questionnaire included two scenarios: one allowing time to consult a legal representative (non‐emergency) and one where research had to start immediately, before consulting a legal representative (emergency). Results In total, 2086 respondents were included in the analysis. A majority were positive to participate in both non‐emergency (81% [1690/2086]) and emergency research (82% [1714/2086]) in situations where they would be unable to provide informed consent. Next of kin was preferred as a surrogate decision maker in 81% (1686/2086) of respondents and less than 1% (11/2086) preferred an unrelated legal representative such as an attorney. Conclusion This study shows that in a representative sample of the Swedish population there is a positive attitude towards research in the acute setting and in critical illness, even in situations when a potential participant cannot receive information and provide informed consent and that a next of kin is the preferred legally authorized representative. Editorial Comment This article reports results of a national survey from Sweden, where it shows that, among Swedish citizens, there appears to be broad acceptance of allowing family members to act as surrogate decision‐makers in informed consent decisions for study participation among acutely critically ill patients who cannot perform consent themselves. At this point in time, Swedish law does not allow this.
ABSTRACT Introduction Treatment in the intensive care unit (ICU) is usually predicated on curative treatment, but continuing all available treatment options may not always be beneficial for the patient or in line with their wishes. However, patients admitted to the ICU are often assessed as incapable of making decisions regarding their care; hence conversations about wishes for treatment are postponed. This study aimed to investigate the experiences of patients who participated in a conversation concerning treatment and care following ICU discharge based on the Danish version of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) form. Method Semi‐structured telephone interviews were conducted with patients who had a conversation about future treatment and care with an intensivist using the ReSPECT form during an ICU admission between November 2024 and July 2025. Relatives who participated in the conversation and were present during the interviews were asked to elaborate on their experiences of the conversation's timing and how they felt about participating in the conversation. Data was analysed using content analysis. Results Nineteen patients were included in the study, of whom 15 patients (83%) participated in a telephone interview. Two themes were identified: Timing of the conversation and Clarifying goals of care and options . Based on these, four sub‐themes were identified, two for each theme: Too soon, but not much later ; Wishes in accordance ; Hard, but necessary and Communicating in an understandable manner . Most patients were satisfied with having had a conversation about future treatment and care. Patients found the conversation relevant and necessary. The intensivists were praised for their communication skills and their ability to know and explain recommendations for future treatment and care. However, most patients believed that the conversation was conducted too soon after recovering from intensive care. They would have preferred to have had the conversation later during their admission. Conclusions Most participating ICU patients found a conversation about future treatment and care relevant but preferred it to be held after ICU discharge. Future research should investigate the benefits of incorporating intensivists in these conversations in general wards. Editorial Comment In this prospective study, former ICU patients were interviewed and asked about their experiences and opinions regarding a structured ReSPECT discussion that had been conducted in the end of their ICU stay. The goal of that interview was advance care planning, involving the patients and their family members. This study reports a qualitative analysis of interviews conducted at least 4 weeks later. Two main themes and four subthemes were identified. Almost all patients remembered having had the discussion, but the content was less clearly remembered. ICU physicians’ communication skills were appreciated. The study assesses a function of our daily work from patient and family perspective, and discusses important issues such as optimal timing of the advance care planning.
