Background: Illness narratives with meaningful, competent and targeted content have been shown to provide useful guides for patient decision-making and have positive influences on health behaviors. The use of narratives in decision aids can confer a sense of structure, plot and context to illness experiences and help patients make treatment decisions that feel sensible, informed, and transparent.
Aim: This paper presents narratives of suffering and healing from patients and their caregivers with advanced heart failure who engaged in decision-making regarding Left Ventricular Device Assist (LVAD) treatment.
Methods: Narratives were collected from in-depth interviews with patients who accepted (n = 15) versus declined (n = 15) LVAD implant, LVAD candidates who had received education about LVAD and were in the process of making a decision (n = 15), and caregivers (family or significant others) of LVAD patients (n = 15).
Results: Participants shared "restitution" narratives that most commonly conveyed a shift from pre-implant physical suffering and "daily hell," fatigue so intense it "hurts," along with emotional suffering from inability to engage with the world, to post-implant improvements in mobility and quality of life, including positivity and family support, adaptation on a "journey," "getting one's life back" and becoming "normal" again.
Conclusion: For LVAD patients, other patients' illness narratives can help to give meaning to their own illness and treatment experiences and to more accurately forecast treatment impacts on lifestyle and identity. For clinicians, patient narratives can enhance patient-practitioner communication and understanding by highlighting perspectives and values that structure patients' clinical experiences.
Keywords: LVAD; illness narratives; patient experience; suffering and healing.