What question did this study set out to answer?

To describe the envisioned roles of very old patients and their next of kin in shared decision-making during critical illness.

June 20, 2026Open Access

Intensive care under uncertainty: a qualitative study of how older patients and their relatives wish to contribute to decision-making

Key Points

To describe the envisioned roles of very old patients and their next of kin in shared decision-making during critical illness.
Conducted a qualitative survey among 202 very old Norwegian outpatients (aged 80+) and 153 next-of-kin from November 2021 to March 2023.
Applied cross-case thematic analysis to free-text responses regarding participation in decision-making.
Identified five main categories of desired contributions from participants.
Participants expressed the need for scientific knowledge to inform decisions.
Highlighted the importance of incorporating personal knowledge into care plans.
Identified four additional ways to improve decision-making and enhance patient security during critical illness.

Abstract

To describe how patients and their next of kin envision participating in shared decision-making in the event of critical illness in advanced age. Very old patients wish to contribute to the decision process by offering their personal ways of coping with and adapting to medical uncertainty. To provide personalised intensive care, the personal knowledge of very old patients and their next of kin needs to be included in clinical decision-making. Given the importance of shared decision-making in critical illness in advanced age, we aimed to explore how very old patients and their next of kin envision their contribution to the decision-making process. From November 2021 to March 2023, we conducted a survey among Norwegian outpatients aged 80 and over and their next of kin. We studied their perspectives on hypothetical scenarios of acute, life-threatening illness warranting admission to the intensive care unit (ICU). In this sub-study, we conducted cross-case thematic analysis of free-text responses addressing patients’ and next-of-kins’ participation in shared decision-making. Of 202 very old and 153 next-of-kin respondents, 210 participants provided 339 free-text comments relevant to this research question. Vi identified five main categories, describing how participants wished to contribute to the decision process: (1) Seeking scientific knowledge, (2) Contributing personal knowledge, (3) Tailoring care to the heterogeneity of older age, (4) Improving the process of decision-making, and (5) Strengthening security. Applying a framework for medical uncertainty and uncertainty tolerance, we found that all five of them comprised ways of coping with or adapting to the multidimensional uncertainty characterising clinical decisions when very old patients fall critically ill. These findings highlight the need to include patients’ and family members’ personal knowledge in clinical decision-making, and to facilitate the presence of next of kin when very old patients require critical care. ClinicalTrails.gov NCT05149040 (October 31, 2021)

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