July 10th, 2014
Behind the Patient Decision-Making Process for a Destination-Therapy LVAD
CardioExchange’s John Ryan interviews Colleen K. McIlvennan, Larry A. Allen, and Daniel D. Matlock about their study on how patients choose whether to get a left ventricular assist device (LVAD) as destination therapy. The study is published in Circulation: Cardiovascular Quality and Outcomes.
From October 2012 to September 2013, researchers interviewed 15 patients who opted for a destination-therapy LVAD and 7 who had declined the therapy. Accepters of the therapy either made the choice automatically (11 patients) or after substantial reflection (3 patients); all 7 decliners were reflective in their approach to decision making. (One patient’s approach did not clearly fit into either category, largely because of his inability to focus during the interview.) The automatic group was characterized by a fear of dying and an overriding desire to live as long as possible, whereas the reflective group went through a reasoned process of weighing risks, benefits, and burdens. Regardless of the approach, most patients experienced the decision as a highly emotional process, and many sought family and/or spiritual support.
Ryan: Briefly explain what drew you to do the study.
McIlvennan, Allen, and Matlock: With medicine’s expanding array of life-prolonging technologies, older people with chronic illness are increasingly offered invasive interventions. As clinicians who spend an increasing amount of time and energy in the field of mechanical circulator support, we feel that the destination-therapy LVAD is a prime example of how advances have created challenging decisions with complex tradeoffs. Typically, patients are faced with a decision either to undergo a major operation (with significant lifestyle changes) for a chance at prolonging life or to forgo therapy and live their remaining days under palliative or hospice care. The difficulty of this situation is amplified by the extension of LVAD destination therapy into an increasingly older population with multiple comorbidities.
The prevailing approach to patient decision support has been a combination of impersonal consent forms, overly positive industry marketing materials, and education about the particulars of the device. What we have seen at the individual patient level is a high-degree of emotion, confusion, and unrealistic expectations.
We found a scarcity of literature on how people make decisions about LVAD destination therapy — or any life-threatening medical decision. Therefore, we aimed to explore the decision-making process of patients who are considering this life-prolonging therapy, in order to inform future development of decision support tools.
Ryan: The paper is quite interesting. What surprised you most about your findings?
McIlvennan, Allen, and Matlock: Our findings show that some patients offered an LVAD as destination therapy cognitively assess the situation and reason the through risks and benefits (a “reflective” decision). For others, the desire to live supersedes such reflective processing, and the decision is largely intuitive (an “automatic” decision). The study shows that for many people, particularly those with an automatic response, major interventions designed to delay impending death appeal directly to their primal desire for self-preservation and may alleviate their fear of death. This desire is so strong that it effectively suppresses other considerations; many patients do not necessarily wish to know about side effects and burdens — or even the extent to which the destination-therapy LVAD actually prolongs life.
This finding is discordant with the current paradigm for informed consent, which assumes that patients will be extremely cognitive in their approach, largely ignoring the importance of human emotions and behaviors. Although information is essential for informed consent and is helpful to some patients, our results show that cognitive weighing of theoretical risks and benefits played a secondary role in the decision-making process for many patients.
Ryan: I was intrigued by the lack of a difference in decision regret between the automatic and reflective groups, even though the automatic group appeared to have more complications. Do you think this was related to the active role the patients played in the decision making.
McIlvennan, Allen, and Matlock: The fact that we saw no difference in decision regret is probably attributable the study’s lack of statistical power to test the difference. Other literature shows that patients who have a more active role in decision making have less regret. Unfortunately, we are unable to make any conclusions about regret, given our small sample size.
Ryan: One of the “accepters” said, “’God, you’re in charge. Do what you do.’ So they decided to put an LVAD in me.” Of secondary influences like this one, which were the most influential in determining whether people were accepters or decliners?
McIlvennan, Allen, and Matlock: Overwhelmingly, the choice whether to accept a destination-therapy LVAD was largely explained by a patient’s decision process (either automatic or reflective); however, many patients said that they considered other factors. Spirituality and religious beliefs were frequently discussed across both automatic and reflective decision types. Relationships with family and friends were the most commonly cited influences. Many patients sought guidance from a spouse, a close friend, or God. Interestingly, many of the decliners (all in the “reflective” group) said they were “not afraid of death.” This statement was not just spiritual, but seemed to reflect some inner reconciliation of an innate existential angst.
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Share your reflections on how patients go about choosing or declining a destination-therapy LVAD.