Caregivers of destination LVAD patients benefit from support, too

Patients aren’t the only ones impacted by destination therapy left ventricle assist device (LVAD) implants. Caregivers should be part of decision-making and they need support and tools to help them process the change, according to a study.

Using a qualitative, semi-structured interview method, Colleen K. McIlvennan, DNP, ANP, of the Section of Advanced Heart Failure at the University of Colorado School of Medicine in Aurora, and colleagues interviewed 17 caregivers of patients with destination therapy (DT) LVAD. They included caregivers of deceased (six) and living patients (10) who chose to undergo DT LVAD and those who had declined DT LVAD (one). Most caregivers interviewed were female relatives, the majority being spouses or widows. One caregiver was a male friend.

They found that the complex decision-making process could be broken down into three domains: decision context, process and outcome. Caregivers, at the time of patient decision-making, frequently faced a context of years of witnessing a patient's poor health prior to the procedure; had a tense balance between hope and concern; and were frequently faced with a sense of urgency to make decisions quickly before a patient became ineligible or died. They also, in cases where a patient was found ineligible for transplant, faced few alternatives that would prolong a patient’s life.

This led to a decision process replete with mixed emotions, where uncertainty and a desire to keep loved ones longer might conflict with a patient’s own wishes. Clinician relationships, McIlvennan et al found, had a profound effect on whether a caregiver felt relief or frustration surrounding DT LVAD decision-making.

Ultimately, outcomes of those decisions created some tensions as well. Caregivers were both grateful and burdened; there were aspects to life following the patient’s implant that neither they nor the patients were prepared for.

McIlvennan et al wrote that interventions were needed to “better prepare caregivers for burdens of DT LVAD,” to provide caregivers with tools and resources specific to them to better manage expectations and burdens. They suggested offering caregivers support groups separate from patient support groups to allow an outlet for empowering and validating feelings and concerns. Caregiver needs and concerns were frequently placed after those of the patient, they noted.

Patricia M. Davidson, RN, PhD, of Johns Hopkins University School of Nursing in Baltimore, and colleagues agreed in an editorial that providing patients and caregivers alike with realistic expectations of the benefits, burdens and risks of DT LVAD was important to better manage strain. Davidson et al reminded clinicians that the burden to caregivers is not just physical, mental or social, but also financial.

“Families, particularly caregivers, require support and we also need to monitor their capacity and resources over time. A diverse literature across many conditions presents family caregiving as a mix of benefits and burdens. Interventions to minimize burdens are urgently needed,” Davidson et al wrote.

“As our society and healthcare system becomes increasingly dependent on this valuable labor sources, we need to develop systematic, scalable and sustainable models of interventions that meaningfully engage informal caregivers in the healthcare team.”

The study was published online March 10 in Circulation: Cardiovascular Quality & Outcomes.