Long-term dependence on invasive mechanical ventilation following an acute illness has profound and long-lasting consequences for family members. A study of Japanese families shows that loved ones often perceive the initiation of mechanical ventilation as an irreversible decision, while discussions about treatment preferences, prognosis, and alternatives are frequently lacking. The results underscore the importance of timely communication, shared decision-making, and targeted support for family members.
What happens to family members when an older patient becomes dependent on long-term invasive ventilation following an acute illness? Researchers Monique Daniëls (Erasmus MC) and Stef Groenewoud (IQ Health, Radboudumc) demonstrate that the impact on loved ones is significant and often persists for years.
Virtually all participants described the choice to initiate ventilation as a decision between life and death. In hindsight, that decision turned out to be primarily the beginning of a long-term care journey, the consequences of which were not sufficiently clear beforehand. Many family members perceived the treatment as irreversible once mechanical ventilation had begun. According to the participants, discussions about the patient’s values and preferences, expectations for the future, and the possibility of reconsidering the treatment rarely took place. Even when patients had previously expressed or documented their wishes, these often played no role in the decision-making process
In addition, the study shows that family members bear a heavy emotional burden. Feelings of guilt, doubt, grief, and powerlessness alternate and are rarely shared with others. According to the results, open communication with healthcare professionals and explicit recognition of the role of loved ones make a significant difference. The findings offer concrete starting points for better aligning decision-making regarding long-term mechanical ventilation with the wishes of patients and their families, including through advance care planning, clear communication, and appropriate support for family members.
This study is part of Monique Daniëls’ doctoral research. She will defend her dissertation on November 12, 2026, at Erasmus University Rotterdam.