We interviewed 13 families of deceased ALS patients who had refused treatment with tracheostomy invasive positive pressure ventilation (TPPV) in order to shed light on patient as well as family experiences.
Patients and family members experienced the process of finding meaning: meaning in living without TPPV for the patients themselves and families, and meaning in them having lived according to this decision for family members. The 11 categories for the process emerged over time. They experienced “the encounter with TPPV”. Regardless of coming to it with “shock or resistance” to TPPV, some patients and family members reached “the decision and expression relatively quickly after the encounter with TPPV”, some experienced “greater conflict and struggle surrounding the decision”. They reached “the final making-decision and confirmation”, and “lived to their fullest until death after reaching their decision”. Family members experienced “both regret and the condemnation of others” before “remembering their past experiences and serving for the dead patients”, “finding positive meaning” and “rebuilding their lives”. Fundamental factors affecting this process were “personality, worldview, and environment”.
Our interviews illustrate the need for greater information, education, and discussion in order for decision-making regarding this immensely dif ficult choice not to result in regret, while enhancing healthcare and nursing systems.
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