title: Is 'informed consent' an 'understood consent' in hematopoietic cell transplantation?
abstract: Hematopoietic cell transplantation (HCT) is a complex and highly specialized medical treatment that is associated with significant risks, including death. Furthermore, transplantation is offered to patients who often have no other curative treatment alternatives. The routine-consent process for HCT typically occurs before HCT and is influenced by many factors related to patients, physicians and the transplant per se. These factors can impede the consent process and subsequently result in a failure of proper engagement in and an understanding of the procedure with resultant adverse consequences influencing patients and even the patient-physician relationship. We contend that informed consent is a dynamic and ongoing process and that better patient education can assist in the decision making, fulfill the ethical principle of respect for autonomy and engage the patient to maximize compliance and adherence to therapy. This manuscript reviews the key literature pertaining to the decision-making and consent process in HCT and proposes guidelines for improving the consent process. Strategies for improving patient comprehension, engagement and enhancing consent forms are discussed.
authors.affiliation: Division of Hematology/BMT, Department of Medicine, Medical College of Wisconsin, Center for International Blood and Marrow Transplant Research, Milwaukee, WI, USA.
authors.forename: A
authors.initials: A
authors.lastname: D'Souza
authors.affiliation: Division of Hematology/BMT, Department of Medicine, Medical College of Wisconsin, Center for International Blood and Marrow Transplant Research, Milwaukee, WI, USA.
authors.forename: M
authors.initials: M
authors.lastname: Pasquini
authors.affiliation: Center for Bioethics and Medical Humanities, Medical College of Wisconsin, Milwaukee, WI, USA.
authors.forename: R
authors.initials: R
authors.lastname: Spellecy
mesh_terms: D004989:Ethics; D018380:Hematopoietic Stem Cell Transplantation; D006801:Humans; D007258:Informed Consent; D010349:Patient Compliance; D010817:Physician-Patient Relations