A Special Challenge and a 24/7 Responsibility: Caring for a Family Member with a Mechanical Heart at Home
By Jesus (Jessie) Casida, PhD, RN, CCRN-CSC, APN-C, a Robert Wood Johnson Foundation Nurse Faculty Scholar
Mechanical hearts such as left-ventricular assist devices (LVADs, see websites below) have evolved from a life-saving technology to a viable option for sustaining life and improving the quality of life for patients with end-stage heart failure. Whether the LVAD is implanted as a bridge or an alternative to heart transplant, a family caregiver has to assist the patient in implementing the complex home care regimen.
My experience with LVAD caregivers began in 1990, which I had a first-hand experience with the evolution of the technology and first witnessed the day-to-day challenges faced by caregivers. A reliable and competent caregiver who will be responsible for helping the patient to carry out the home care regimen is the first step in the planning process LVAD implant.
As an advanced practice nurse, I was responsible for training and evaluating the caregivers’ readiness, and long-term follow-up. Discharge preparations for caregivers are complex and include completion of “LVAD Care” training and competency validation through written tests and skill demonstrations. Moreover, the patient’s home is fitted with the appropriate electrical outlets and voltages, and the local hospital and emergency services are notified prior to discharge.
Here is a snapshot of a typical daily routine of an LVAD caregiver at home:
The caregiver’s day begins with inspection of the integrity of the cables connected to a controller (computer) and power source, followed by switching the patient from electric to batteries. Next, the caregiver checks vital signs, LVAD pumping mode of operation and speed as well as wattage , and conducts self-tests of controller/battery. After carefully examining the exit site (wound on the lower abdominal area) for healing and signs of infection where the internal LVAD cable protrudes, the caregiver changes the sterile dressing and secures connecting cables under a belt-like material or an abdominal binder.
If a patient is allowed to take a shower, the caregiver executes a procedure using a shower bag to tuck cables, batteries, and controller thus preventing water damage to the circuit, which is done first before wound care. Next set of tasks include cleaning, and simultaneously checking proper functioning, of the cables, battery clips, spare batteries, power module, battery charger, and emergency power pack. Upon completing these tasks, the caregiver records vital signs, LVAD parameters, equipment check, and medications on a log.
Since LVAD recipients are not allowed to operate motor vehicles, caregivers are by default the designated drivers. Travels and clinic visits are well-planned, with spare batteries, controllers, battery charger, LVAD manuals and logs at hand.
During the night, the patient is reconnected again to a power module and the caregiver ensures that the 25-foot electrical cable is untangled. (The cable is needed to avoid switching electric-battery and vice versa when using the toilet at bedtime).
This sums up a caregiver’s day having a trouble-free LVAD, to be repeated again the following day.
But what if the LVAD pump speed and/or watts are going up or down accompanied by varying levels of alarms? Even worse, what if there is a device malfunction or system failure is imminent? How can a caregiver, generally a lay person, be well prepared to troubleshoot, and carry out the actions required to manage the problem expeditiously? Survival of the patient relies on a properly functioning LVAD, so time is critical!
Over the years, I have been amazed with caregivers’ perseverance in learning and managing the complexity of LVAD care and that is the impetus for my passion to pursue a research program on caregiving and self-care in mechanical circulatory support. I am interested in further understanding the mechanism that underpins adaptive behavioral responses of caregiving and associated health outcomes.
Research in this area is extremely limited. Since my first publication about spouses as caregivers in 2005, less than a handful of studies on this topic have been published. Nonetheless, the limited information provides us with the beginning evidence of the many challenges faced by LVAD caregivers.
Synthesis of the limited data revealed that LVAD caregiving is a 24/7 task, and an overwhelming responsibility – particularly during the first month after discharge. Findings like constant worrying with the wear and tear, device malfunction/failure, and device-related complications are some of the identified causes of caregiver’s excessive vigilance, anxiety, uncertainty, less personal time, tension in the family, fatigue, burden, and risk for post-traumatic stress disorder.
In spite of the many challenges, most caregivers were satisfied with their roles and grateful that their loved ones have the second chance at life with the LVAD.
LVAD caregiving science is in its infancy and requires more rigorous research involving diverse types of caregivers and LVAD indications. I welcome comments, suggestions, and partnership to advancing the science in this field specifically targeting burden, adaptive responses, and caregivers’ quality of life.
Useful Websites about LVAD and Total Artificial Hearts
A Robert Wood Johnson Foundation Nurse Faculty Scholar, Jessie Casida is an Assistant Professor at Wayne State University College of Nursing in Detroit, Michigan. He received his MS in Critical Care Nursing from Columbia University and PhD in Health Sciences from Seton Hall University. His research and scholarship activities are anchored on his extensive clinical and leadership background in cardiac surgical critical care. Dr. Casida teaches acute/ critical care and advanced practice leadership in the master’s and doctoral programs, and guides graduate students with their scholarly work. He is also a volunteer mentor for students aspiring to become nurses. Additionally, Dr. Casida serves as chair/leader or member of committees in several professional organizations at local, regional and national levels.