Exploring the Lived experience of Having A Terminal Illness*

INTRODUCTION Health care is about curing and healing; art and science, mind and heart, skills and knowledge, technology and compassion, living and dying. What is it like to know that one will die within hours, days, weeks, or months? Does anything change once one has been informed of having a terminal illness? How does that information affect oneself, one’s relationship to others, or one’s sense of the transcendent? Can one find meaning and value in knowing that death is imminent? Is death a topic that even those with a terminal illness avoid? These are some of the questions that led to a research study that can be summarized with a single question: What is the lived experience of having a terminal illness? (9). The World Health Organization defines pal liative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering.and treatment of pain and other problems, physical, psychosocial and spiritual” (10). For the most part, analgesic medication is effective in controlling pain (11-13). What are the psychological, social, or spiritual issues that people with a terminal illness face? The research method used in this study was existential-phenomenological, an approach de signed to understand and articulate the essential structure underlying the experience of the phenomenon under investigation — in this case, a terminal illness. Phenomenological inquiry is “always a project of someone: a real person, who, in the context of particular individual, social, and historical life circumstances, sets out to make sense of a certain aspect of human existence” (14, p. 43). I will address this in the first part of the article. Before describing the study and the results in more detail, I want to set the context in which the research was undertaken and locate myself as the investigator. I did not come to this research naively. My own lived experience prior to the research project was that of a physician working on a palliative care unit that provided service to persons with cancer and/or AIDS at a time when persons with AIDS often died within a year or two of receiving their diagnoses. By the time the study was conducted, I had studied palliative care, I had provided medical care to hundreds of people, and I had been with my family members and a close friend during their experience of dying. And so I knew the experience of being a physician, a family member, and a friend caring for someone with a terminal illness. I didn’t know the lived experience of having a terminal illness. It was in providing medical care for two par ticular patients that I was confronted with my limited understanding of the psychological/spiritual experience of living with a terminal illness. Mrs. B. had been a patient on the palliative care unit for about 10 days. I felt that I knew her reasonably well. Every day I asked her about her pain; every day I made changes to her medication with the belief and the hope that her pain would be diminished or alleviated. The other members of the team also paid close attention to her pain. Nothing seemed to diminish it. On day 5 or 6, I sat down at Mrs. B. ’s bedside. For some reason, I asked her a question I had never asked a patient before: “Could you have a pain in your heart that won’t be affected by medication? ” She paused and then responded tearfully, saying that indeed she Exploring the Lived Experience of Having a Terminal Illness*