Decisional Considerations in Left Ventricular Assist Device for Destination Therapy

Thesis (Ph.D.)--University of Washington, 2016-06

End-stage heart failure is a growing problem in the United States as well as world-wide. The definitive treatment in heart failure that is refractory to medical treatment is a heart transplant. But there are a limited numbers of hearts available for transplant and a growing number of patients in need. There has recently been tremendous development in the area of mechanical circulatory support. One of these developments is the left ventricular assist device (LVAD). The LVAD is a pump that assists the failing left ventricle of the heart. The LVAD has proven to increase survival and improve symptoms of end-stage heart failure. Initially the LVAD was used to support patients with heart failure to survive to either recovery or heart transplant, thus termed a bridge therapy. But eventually these devices would be implanted without the intent of heart transplant or recovery, becoming known as destination therapy. A third category of LVAD designation is called bridge to candidacy. In this category patients undergo the implantation of the LVAD and then are later determined whether they are appropriate for heart transplant. For all patients and families who undertake LVAD therapy, there are risks, uncertainty, and benefits of the treatment. All categories of patients are making high-stakes decisions for their care while living under the threat of a life threatening condition. As is often the case in highly technological devices that prolong and sustain life, LVADs come with very serious and complex ethical challenges as well as psychosocial demands on patients and families. The first paper in this manuscript addresses the ethical principle of prospective autonomy. The paper uses Walker and Avant’s method of concept analysis to come to an operational definition of the concept of prospective autonomy. The definition achieved is: Exerting current values, life experiences, and perspective to decide the course of one’s future. The defining attributes of the concept are identified as: oriented to the future and events that have not yet happened, independence in that the individual is choosing their course, competency in that the individual meets a threshold for ability to make a rational and prudent choice, authenticity in that it must reflect the individual’s true self, knowledge that the person must have the pertinent information that is available, and lastly, self-determination. The second paper describes original research investigating the process of decision-making in LVAD for destination therapy. The study was conducted with 11 participants with LVADs for destination therapy. The research found that the core process in decision-making was “no choice”. This core process was sub-divided into two supporting processes: (a) being in a system of care and (b) having already invested so much in the LVAD. Additional interacting process themes were: (a) personal bias, (b) reacting, (c) perceiving what clinicians thought the participant should do, (d) unclear goals and hopes, (e) isolation, and (f) severely constrained planning for the future. The third paper is a secondary analysis from the above mentioned study on decision-making. This manuscript was generated from the unexpected finding of grief around the loss of hope for heart transplant in the participants. The themes identified in this analysis were: (a) taking it in, (b) heart transplant is not perfect, (c) jumping through hoops, (d) mistrust, (e) thinking about the hypothetical, and (f) hope.