Background: Patients presented with the option of undergoing ventricular assist device (VAD) therapy are by definition very sick, and often in crisis. They are typically told that they have a high likelihood of dying in the next year without VAD. Though most patients have improved functional status and quality of life (QoL), repeated hospitalizations and potentially catastrophic complications in the post implant period can be burdensome.
Objective: To assess for decisional regret or ambivalence about VAD implant.
Methods: During a 3 year pilot program of outpatient palliative care embedded in a cardiology/CT surgery clinic, all post VAD implant patients were referred to palliative care as part of routine care. As part of their assessment, they were administered a survey consisting of a 5 question decision regret scale that has been validated for a wide range of treatment decision making, and has correlated well with decision satisfaction and decisional conflict. The results were entered into a QI database. On a scale of 0 (no regret) to 100 (regret), scores >25 were considered to reflect significant ambivalence about their decision to have VAD implant. Scores between 10-25 were defined as mild ambivalence. Patients were also administered the PHQ-9 depression inventory.
Results: 129 unique patients were seen as outpatients over a period of 49 months. 102 (79%) completed decision regret surveys. Of these, the majority (64/102, 63%) scored 0, 7/102 (7%) scored > 25, and another 29/102 (28%) scored between 10 and 25. The average age of the patients scoring > 25 on the scale was 46, compared with the average age of 55 of the whole cohort. Of those that expressed some degree of ambivalence (n=36) about their decision, 11/35 (31%) met criteria for at least moderate depression on the PHQ-9, compared with 18% for the whole cohort. Though 26% of the total cohort had VADs as BTT, 20/36 (44%) ambivalent patients and 3/7 (57%) very ambivalent patients were living with their VAD as BTT. The percent of patients expressing ambivalence < or > 6 months post implant was equivalent (33%).
Conclusions: In this preliminary study, as expected, a majority of patients do not regret their decision. However a significant minority expressed some ambivalence about this decision, and a small number expressed significant ambivalence. Ambivalence was more common in those who are younger, those with VAD as BTT, and in patients with depression. Ambivalence is likely a marker for patients whose expectations for quality of life with VAD are not being met. It is important to recognize pre-implant that patients have different decision-making needs, and that managing their expectations may be a key component of helping them to adjust post VAD. It is also important to identify those patients who would benefit from more post implant support to optimize their quality of life.