Caregiver Perspectives on End-of-Life Experiences of Patients With Left Ventricular Assist Devices.

Caregiver Perspectives on End-of-Life Experiences of PatientsWith Left Ventricular Assist Devices To the Editor In an article published in a recent issue of JAMA Internal Medicine, McIlvennan et al1 found that the bereaved caregivers of patients with left ventricular assist devices (LVADs) reported feelingsofconfusionandabandonment.How to support patients with LVADs and their caregivers in endof-life issues in an era of increasing destination therapy (DT) is a crucial issue. When considering end-of-life issues of LVAD-DT, McIlvennan et al1 should have mentioned the importance of the informed consent process. As the endpoint of LVAD-DT is patient death, patients, caregivers, and VAD teams must anticipate end-of-life issues at the beginning of therapy, including device discontinuation. Before introducing LVAD-DT, the VAD teamshouldprovide specific information regarding caregiver burden,2 in addition to information related to the procedure, risks, benefits, and alternative treatment options. As not all patients (and caregivers) who provide consent to the LVAD treatment fully understand it, even after implantation.3 Informed consent should not be a single event where patientsare informedandtheir consentobtainedbut ratheraprocess that continues for the duration of wearing a VAD. In a research participation context, a continuing consent process could address the factors relevant to an individual’s decisionmaking process; the nature of the research itself, participants’medical conditions, or participants’ preferences and interests may change unexpectedly after the initial informed consent.4 This would apply to the clinical situation of LVADDT.ThemedicalconditionandothercircumstancesofLVAD-DT patients and caregivers could change during the long treatmentperiod. Patientswhoconsent toLVAD-DTand their caregivers are facedwithday-to-daydecisions in the context of an extended period in which increasing symptoms adversely affect their daily lives. The IC process encompasses providing information via the IC form and signing the letter of consent. Patients and caregivers can reconsider both their daily liveswithanLVADandtheendpointof the therapybeforesigning; the VAD team can understand the concerns of patients and caregivers regarding therapy and partake in the treatment path, step-by-step, when providing information. Moreover, the processes via an IC form can record the decisionmakinghistory of bothpatients and caregivers. Continuing to progressively provide information will lead to better education asMcIlvennan et almentioned.1 The ethical and psychosocial needs of both patients and caregivers will change with thechronicprogressive illness trajectory.Thisgradual andcontinuous approach5 IC process could contribute to preparing patients and caregivers for the end of life with an LVAD.