Exploring Patient Perspective At End Of Life: Qualitative Interviews With Terminally Ill Patients

This study examines the thoughts and feelings of patients facing terminal illness through qualitative interviews. To give patients the most agency in forming their stories, we do not frame the investigation with a specific hypothesis. By having open-ended discussions with patients without structured questions, we allow the patients to provide the content on which we form further questions and hypotheses. We interviewed 15 patients with terminal illness, beginning each discussion by asking them to tell us about their thoughts during this period of their lives. We examined the interview transcripts and identified 15 topics commonly mentioned during the interviews: quality of life, course of illness, approaches to treatment, personal goals, hopes, fears and worries, decisions of daily living, place of living, family, prior experiences with death and dying, religion, timeframes, memories, attitude and emotion toward dying, and adjustment. After recognizing these categories, we reviewed what patients said regarding each category and identified themes. While these vary depending on the topic, one overarching theme centered on self-identity. We found that many patients possessed a strong sense of self, which was changed by illness. Much of patient experience with terminal illness was related to how the illness affected their identities, and subsequently how they strive to preserve their identities throughout end of life. Care providers can benefit from this information in several ways. Recognizing what patients discuss most in these interviews can help providers focus on areas of importance in their discussions with patients. Understanding patient experience in the context of their thoughts and feelings, particularly those framed by their self-identities, can improve patient care. Gaining familiarity with the framework in which patients perceive themselves and their illnesses can help care providers better address patient needs and concerns