Abstract 145: Not One Decision, but Many: Results of an Interview Study Investigating the Decision-Making Experience of Left Ventricular Assist Device Patients and Their Caregivers

Abstract

The patient decision to receive a left ventricular assist device (LVAD) to address end stage heart failure is an area of much research activity, with two paper-based decision support tools recently validated. In the development of a new, interactive support application for these patients, we sought to record issues experienced by patients and caregivers before and after the LVAD decision and assess their values and concerns in the context of the decision-making experience. We conducted open-ended phone interviews with patients and caregivers, independently and together, who already had gone through the decision-making process to receive an LVAD at a single implant center. Interviewing patients and caregivers together, we were able to observe their interaction, while apart we were able to observe the differing concerns and values of caregivers and patients. Interviews were transcribed and semi-quantitatively assessed using topic coding. This research was approved by the IRBs of Allegheny General Hospital, where the patients were recruited and consented, and Carnegie Mellon University, where the research was conducted. We completed 28 interviews: 15 patient-alone, 10 patient-caregiver together, and 3 caregiver-alone. Most patients were men (n=22), mean age 65 (range 37-82). Of the 3 female patients, the mean age was 66 (range 58-75). Most patients had a spouse as primary caregiver (n=17) and 4 had no caregiver. A significant finding of our qualitative analysis was the repeated refrain that patients felt they “had no choice” in getting an LVAD implant. This sentiment was expressed in most interviews (24 of 28). Examples were, “I didn’t have any alternatives,” and “it was a no-brainer, we had to go forward.” A similar theme of “LVAD or death” was also frequently cited (18 mentions), with examples, “that’s a life and death decision, as far as I’m concerned. And I chose to be alive,” and “if you want to keep your husband or your spouse alive, you do it.” Decisions mentioned in the interviews were about how to adapt to living with an LVAD and whether to get a heart transplant. A common decision was how to wear the LVAD controller with 12 mentions of modified vests being used instead of bags. Managing how to shower was also a common concern (14 mentions). For the patients eligible for heart transplant (n=13), many mentioned stresses of waiting (7 mentions) or fear of another surgery (5 mentions) impacting that future decision. Understanding the patient and caregiver experience is essential for providing support before and after life-changing medical procedures. This interview study demonstrated that the perceived decision of importance (whether to receive an LVAD) is not the decision patients and caregivers are most focused on. We believe future support tools should focus less on the single large decision and more on preparing patients and caregivers for the lifestyle changes and maintenance expected for an LVAD.