Courtenay R Bruce1, Kristin M Kostick2, Estevan D Delgado2, Lidija A Wilhelms2, Robert J Volk3, Martin L Smith4, Sheryl A McCurdy5, Matthias Loebe6, Jerry D Estep6, Jennifer S Blumenthal-Barby2. 1. Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas; Bioethics Program, Houston Methodist Hospital, Houston, Texas. Electronic address: cbruce@bcm.edu. 2. Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas. 3. Department of Health Services Research, M.D. Anderson Cancer Center, University of Texas, Houston, Texas; Houston Methodist DeBakey Heart and Vascular Center and J.C. Walter Jr Transplant Center, Houston Methodist Hospital, Houston, Texas. 4. Department of Bioethics, Cleveland Clinic, Cleveland, Ohio. 5. School of Public Health, University of Texas, Houston, Texas. 6. Houston Methodist DeBakey Heart and Vascular Center and J.C. Walter Jr Transplant Center, Houston Methodist Hospital, Houston, Texas.
Abstract
BACKGROUND: A greater understanding of how beliefs and perceptions inform LVAD placement refusals can help ensure that standards for informed decision making are met. We report on the factors that influence refusal and what accounts for changes in decliners' decision-making process when, and if, that occurs. METHOD AND RESULTS: We identified candidates (8 bridge to transplant; 6 destination therapy, 7 without designation) who declined LVAD placement (n = 21), 11 of whom were identified prospectively from February 2014 to March 2015, and 10 of whom were identified retrospectively with the use of our program database. Of these 21 decliners, 11 candidates persistently declined LVAD placement, with a median time of 175 days elapsing between time of LVAD offer and March 4, 2015. Ten candidates declined for an average of 224 days before agreeing to LVAD placement. From March 2014 to March 2015, we conducted structured interviews with LVAD decliners. Interviews were audio recorded, transcribed verbatim, and analyzed quantitatively with the use of Atlas.ti. The findings reflect that refusal can evolve over time. Decliners report that their initial refusals were made reflexively, but the 10 decliners who ultimately opted for LVAD placement changed their decisions as symptoms worsened. Decliners have concerns about the impacts of LVAD treatment on mobility, and they distrust LVAD technology. Some decliners believe LVAD placement would affect their ability to receive a transplant. Finally, decliners believe that they are not sick enough for LVAD placement when they are stabilized with medical management. CONCLUSIONS: Decliners' perspectives are integral for improving informed consent and refusal processes. Our analysis revealed decliners' decision-making processes and factors influencing their decisions. We provide several clinically based practical recommendations based on our findings.
BACKGROUND: A greater understanding of how beliefs and perceptions inform LVAD placement refusals can help ensure that standards for informed decision making are met. We report on the factors that influence refusal and what accounts for changes in decliners' decision-making process when, and if, that occurs. METHOD AND RESULTS: We identified candidates (8 bridge to transplant; 6 destination therapy, 7 without designation) who declined LVAD placement (n = 21), 11 of whom were identified prospectively from February 2014 to March 2015, and 10 of whom were identified retrospectively with the use of our program database. Of these 21 decliners, 11 candidates persistently declined LVAD placement, with a median time of 175 days elapsing between time of LVAD offer and March 4, 2015. Ten candidates declined for an average of 224 days before agreeing to LVAD placement. From March 2014 to March 2015, we conducted structured interviews with LVAD decliners. Interviews were audio recorded, transcribed verbatim, and analyzed quantitatively with the use of Atlas.ti. The findings reflect that refusal can evolve over time. Decliners report that their initial refusals were made reflexively, but the 10 decliners who ultimately opted for LVAD placement changed their decisions as symptoms worsened. Decliners have concerns about the impacts of LVAD treatment on mobility, and they distrust LVAD technology. Some decliners believe LVAD placement would affect their ability to receive a transplant. Finally, decliners believe that they are not sick enough for LVAD placement when they are stabilized with medical management. CONCLUSIONS: Decliners' perspectives are integral for improving informed consent and refusal processes. Our analysis revealed decliners' decision-making processes and factors influencing their decisions. We provide several clinically based practical recommendations based on our findings.
Authors: Kristin M Kostick; Charles G Minard; L A Wilhelms; Estevan Delgado; Mackenzie Abraham; Courtenay R Bruce; Jerry D Estep; Matthias Loebe; Robert J Volk; J S Blumenthal-Barby Journal: J Heart Lung Transplant Date: 2016-01-21 Impact factor: 10.247
Authors: Inna Tchoukina; Keyur B Shah; Jennifer T Thibodeau; Jerry D Estep; Anuradha Lala; David E Lanfear; Nisha A Gilotra; Salpy V Pamboukian; Douglas A Horstmanshof; Dennis M Mcnamara; Donald C Haas; Ulrich P Jorde; Rhondalyn C Mclean; Thomas M Cascino; Shokoufeh Khalatbari; Blair Richards; Matheos Yosef; Cathie Spino; J Timothy Baldwin; Douglas L Mann; Keith D Aaronson; Garrick C Stewart Journal: J Card Fail Date: 2019-12-04 Impact factor: 6.592