Family Surrogates' Values for the Life-Sustaining Ventilation Decision of Critically-Ill Non-Cancer Patients

Purpose: Family surrogate decision-making for life-sustaining ventilation is an important issue in critical care setting, at that time patients mostly lack of functional capacity to make their own decision. There is limited information about how the non-cancer family surrogates make for this life-matter decision in Taiwan. Thus, the purpose of this study was to understand the family surrogates’ values as whether to forgo or receive life-sustaining ventilation for their critically-ill, life-threatening, non-cancer sick family. Methods: A qualitative study was applied with tape-recorded, open-ended interviews to elicit family surrogates’ experiences and their values as making the decision regarding whether to forgo or receive life-sustaining ventilation. A purposive sample of 12 family members who made or participated for this decision from 12 non-cancer adult patients who had clinical indication for ventilation during intensive-care admission in Northern Taiwan at three months ago. Data was transcribed word-by-word and was analyzed by using constant comparative method. Results: The family participants had age ranging from 22 to 61, were parents, children or husband/wife of the patients. The patients had age between 52 to 86 and respiratory failure related to advanced chronic disease at large. Only one declined ventilation initially and passed away at home. However, six out of the rest resulted in withdrawing the ventilation after all during the study period. The values encompassed in the family surrogate decision-making process reveal one major theme, the life matter regarding being vs death. They characterized as just being alive at the initial phase, but mixed with living with dignity, suffering from ventilation dependence, and even conflicted with caregiving burden after all. The decision-making disclosed both patients’ values and the family participants’ own perspectives. Conclusion: The family surrogate decision-making for ventilation for critically-ill non-cancer patients is difficult and conflicting with combating values. That how to help the family surrogates make an informed decision and fully considering the consequence of each option is warrant for further investigation.