Living beyond the point of no return: Family members’ perspectives on long-term invasive mechanical ventilation dependency in older adults in Japan

Invasive mechanical ventilation (IMV) is a commonly used, life-saving intervention initiated in acutely life-threatening situations. A considerable proportion of patients, particularly older adults, experience inadequate recovery and a poor prognosis. In many countries, such situations prompt reconsideration of continued IMV. In Japan, however, the discontinuation of IMV remains rare. Consequently, patients remain dependent on IMV for prolonged periods of time, which may place a substantial emotional burden on their family members. This impact remains understudied. This qualitative, exploratory multi-case study examined the perspectives of family members on long term IMV dependency of eight older patients in Japan. Semi-structured interviews were conducted, and data were analyzed using an inductive thematic approach, to capture insights from participants’ narratives. Our findings reveal that the patient's clinical course and IMV dependency place a heavy emotional burden on family members. In their perception, IMV was initiated and continued without consideration of patients' values and preferences. Initiating IMV treatment to them felt like an irreversible decision; after initiation of the treatment, continuation was not reconsidered or discussed. Family members indicated that open conversations about the patients' situation and prospects were difficult and rare, not only with medical staff, but also within their own social networks. These findings may help to increase awareness of how IMV dependency impacts patients and their families and stimulate further research. It may also inform strategies to further optimize IMV trajectories from the perspective of family members and ultimately contribute to discussions about appropriate initiation and (dis)continuation of IMV treatment.