Assessment of patients’ and caregivers’ informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making

• Published in: The Journal of heart and lung transplantation Vol. 34; no. 9; pp. 1182 - 1189
• Main Authors: Blumenthal-Barby, Jennifer S., Kostick, Kristin M., Delgado, Estevan D., Volk, Robert J., Kaplan, Holland M., Wilhelms, L.A., McCurdy, Sheryl A., Estep, Jerry D., Loebe, Matthias, Bruce, Courtenay R.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.09.2015
• Subjects: Adult; Aged; Attitude; caregivers; Caregivers - psychology; Decision Making; Female; heart failure; Heart Failure - therapy; Heart Transplantation; Heart-Assist Devices; Humans; Informed Consent; Interview, Psychological; Life Style; Male; Middle Aged; Patients - psychology; shared decision making; Surgery; transplant; ventricular assist device; ventricular assist device; shared decision making; heart failure; caregivers; informed consent; decision making; transplant
• ISSN: 1053-2498; 1557-3117
• DOI: 10.1016/j.healun.2015.03.026

Several organizations have underscored the crucial need for patient-centered decision tools to enhance shared decision-making in advanced heart failure. The purpose of this study was to investigate the decision-making process and informational and decisional needs of patients and their caregivers regarding left ventricular assist device (LVAD) placement. In-depth, structured interviews with LVAD patients, candidates and caregivers (spouse, family members) (n = 45) were conducted. We also administered a Decisional Regret Scale. Participants reported LVAD decision-making to be quick and reflexive (n = 30), and deferred heavily to clinicians (n = 22). They did not perceive themselves as having a real choice (n = 28). The 2 most prevalent informational domains that participants identified were lifestyle issues (23 items), followed by technical (drive-line, battery) issues (14 items). Participants easily and clearly identified their values: life extension; family; and mobility. Participants reported the need to meet other patients and caregivers before device placement (n = 31), and to have an involved caregiver (n = 28) to synthesize information. Some participants demonstrated a lack of clarity regarding transplant probability: 9 of 15 patients described themselves as on a transplant trajectory, yet 7 of these were destination therapy patients. Finally, we found that decisional regret scores were low (1.307). Informed consent and shared-decision making should: (a) help patients offered highly invasive technologies for life-threatening disease get past the initial “anything to avoid thinking about death” reaction and make a more informed decision; (b) clarify transplant status; and (c) focus on lifestyle and technical issues, as patients have the most informational needs in these domains.