Varying (preferred) levels of involvement in treatment decision-making in the intensive care unit before and during the COVID-19 pandemic: a mixed-methods study among relatives.

Publication date: Feb 12, 2024

In the intensive care unit (ICU) relatives play a crucial role as surrogate decision-makers, since most patients cannot communicate due to their illness and treatment. Their level of involvement in decision-making can affect their psychological well-being. During the COVID-19 pandemic, relatives’ involvement probably changed. We aim to investigate relatives’ involvement in decision-making in the ICU before and during the pandemic and their experiences and preferences in this regard. A mixed-methods study among relatives of ICU patients admitted to an ICU before or during the COVID-19 pandemic. Relatives in six ICUs completed a questionnaire (nā€‰=ā€‰329), including two items on decision-making. These were analysed using descriptive statistics and logistic regression analyses. Subsequently, relatives (nā€‰=ā€‰24) were interviewed about their experiences and preferences regarding decision-making. Thematic analysis was used for analysing the qualitative data. Nearly 55% of the relatives indicated they were at least occasionally asked to be involved in important treatment decisions and of these relatives 97. 1% reported to have had enough time to discuss questions and concerns when important decisions were to be made. During the first COVID-19 wave relatives were significantly less likely to be involved in decision-making compared to relatives from pre-COVID-19. The interviews showed that involvement varied from being informed about an already made decision to deliberation about the best treatment option. Preferences for involvement also varied, with some relatives preferring no involvement due to a perceived lack of expertise and others preferring an active role as the patient’s advocate. Discussing a patient’s quality of life was appreciated by relatives, and according to relatives healthcare professionals also found this valuable. In some cases the preferred and actual involvement was in discordance, preferring either a larger or a smaller role. As treatment alignment with a patient’s values and preferences and accordance between preferred and actual involvement in decision-making is very important, we suggest that the treatment decision-making process should start with discussions about a patient’s quality of life, followed by tailoring the process to relatives’ preferences as much as possible. Healthcare professionals should be aware of relatives’ heterogeneous and possibly changing preferences regarding the decision-making process.

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Concepts Keywords
Interviews COVID-19
Pandemic Critical care
Relatives Decision-making
Tailoring Family support
Quality of life


Type Source Name
disease MESH COVID-19 pandemic
disease VO time
disease VO LACK
disease IDO quality
disease IDO process
pathway REACTOME Reproduction
drug DRUGBANK Pentaerythritol tetranitrate
disease MESH delirium
disease MESH post traumatic stress disorder
disease MESH infection
disease MESH end of life
disease VO population
drug DRUGBANK Chlordiazepoxide
drug DRUGBANK Coenzyme M
disease MESH coma
drug DRUGBANK Trestolone
disease VO Thing
disease IDO history
disease VO dead
drug DRUGBANK Ibuprofen
drug DRUGBANK Etoperidone
disease VO protocol
disease MESH Emergency
drug DRUGBANK Vorinostat
disease IDO symptom
drug DRUGBANK Methylergometrine
disease MESH critically ill
drug DRUGBANK Platelet Activating Factor
drug DRUGBANK Pyridoxal Phosphate

Original Article

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