MedicalResearch.com Interview with:
Colleen K. McIlvennan, DNP, ANP
Assistant Professor of Medicine
University of Colorado, Division of Cardiology
Section of Advanced Heart Failure and Transplantation

Medical Research: What is the background for this study?

Response: Destination therapy left ventricular assist device (DT LVAD) patients are often older with significant comorbidities that preclude heart transplantation. As such, the decision to get a DT LVAD is arguably more complicated than the decision to receive a temporary LVAD in anticipation of a transplant. Centers offering LVADs often require the identification of a caregiver prior to proceeding with the implant. Caregivers are commonly female spouses of DT LVAD patients, who are also older with co-morbidities. Understanding their perspective in DT LVAD decision making is extremely important as they are at particular risk for experiencing stress and caregiver burden due to the increased demands on caregiving with DT LVAD.

Medical Research: What are the main findings?

Response: We performed semi-structured qualitative interviews with 17 caregivers: 10 caregivers of patients living with DT LVAD, 6 caregivers of patients who had died with DT LVAD, and 1 caregiver of a patient who had declined DT LVAD. Throughout the interviews, the overarching theme was that considering a DT LVAD is a complex decision-making process.

Additionally, three dialectical tensions emerged:
1) the stark decision context, with tension between hope and reality;
2) the challenging decision process, with tension between wanting loved ones to live and wanting to respect loved ones’ wishes; and
3) the downstream decision outcome, with tension between gratitude and burden.

Medical Research: What should clinicians and patients take away from your report?

Response: Several interventions should be considered for caregivers of patients considering DT LVAD.

First, in order to better prepare caregivers for the burdens of DT LVAD, LVAD programs should continue to invite caregivers to participate in the decision-making process. This helps to address caregivers’ concerns and works to further engage them as active participants.

Second, DT LVAD caregiver-specific tools and resources should be developed to outline responsibilities and the impact on the caregiver’s life.

Third, providing caregivers with tools such as a decision aid may help to manage expectations and relieve the potential for post-decision caregiver burden. It is important for programs to normalize the ambivalence felt by caregivers by informing them that others have experienced this as a very complex decision.

Fourth, ongoing caregiver support groups, separate from patient support groups, can assist in empowering caregivers as well as validating feelings and concerns.

Medical Research: What recommendations do you have for future research as a result of this study?

Response: Future work surrounding caregivers of patients considering DT LVAD should explore the decision process prospectively. Additionally, future studies should investigate the potential correlations between caregivers and their propensity toward certain tensions (e.g. which characteristics make caregivers more likely to have decision regret). This would lend itself to identifying caregivers who would benefit from tailored caregiver support or interventions, with some caregivers potentially needing no interventions at all.

Citation:

ACC15 Abstract 318: Caregiver Experiences with Decision Making in Destination Therapy Left Ventricular Assist Devices: A Qualitative Study

Colleen K McIlvennan, Jacqueline Jones, Larry A Allen, JoAnn Lindenfeld
Carolyn Nowels, Keith M Swetz and Daniel D Matlock