The Process Used by Family Surrogate Decision Makers to Withdraw Life-Sustaining Treatments in the Blood and Marrow Transplant Population

Abstract

Background: There is limited information about the experience of family surrogate decision makers who make the decision to withdraw life-sustaining treatments (LST) from an individual, and nothing is published about this experience in the blood and marrow transplant (BMT) population. Objective: The purpose of this study was to describe the experience of surrogates who have participated in the decision making process of withdrawing LST from a BMT patient. Method: This study used a phenomenological perspective, using van Manen's (1990) approach to guide the data analysis. In depth, unstructured interviews were conducted with 10 family surrogate decision makers, two to 12 months after the patient's death. van Manen's selective approach was used to identify units of meaning, clusters, themes, and categories that emerged from the data. Findings: The essential themes were: knowing the patient as a person; working through the information, receiving support through trusting relationships; recognizing reality; making the decision; and living with the decision. Conclusion: The results of this study will inform nurses and other health care team members about the experience of surrogates who have chosen to withdraw LST from a BMT patient. Future studies will use this understanding to develop and test interventions for health care providers aimed to decrease the burden of surrogate decision makers. This will promote a peaceful experience for these families and patients, and decrease professional burden of the health care team, who currently does not have evidence based guidelines for these patient/family situations.