“THE BOOK OF MY LIFE”: NARRATIVES OF SELF ABOUT ILLNESS, DEATH AND DYING IN ONCO-HEMATOLOGICAL PATIENTS IN PALLIATIVE CARE

Cancer is a multifactorial disease that, in certain cases, may result in a condition with no possibility of cure, as observed in some hematologic malignancies, such as Multiple Myeloma (MM). Although incurable, MM can be managed through treatments aimed at alleviating and controlling symptoms, with the goal of promoting an improved quality of life. This clinical reality refers to the field of palliative care that constitutes a multidisciplinary therapeutic approach designed to provide comprehensive care that extends beyond the strictly medical-clinical domain, encompassing psychosocial and spiritual dimensions as well. The aim of this study is to explore the meanings and interpretations constructed by patients with MM regarding their illness, death, and dying, as well as the elaboration of these experiences through self-narratives produced by the participants. This qualitative study comprised a sample of 6 patients, with a mean age of 74 years. Most participants had completed either primary or secondary education. All participants were receiving outpatient follow-up care at a public hematology center in the state of São Paulo. A workshop was proposed for the creation of an autobiographical book, or a book of self-narratives. This workshop was conducted in 2 groups of 3 participants each, over a total of 6 sessions. The sessions sought to explore aspects of life before, during, and after the onset of illness. Mediating activities were employed to facilitate the production of materials for inclusion in the book. All sessions were audio-recorded, and the recordings were fully transcribed. Produced materials were documented through photographs. Additional instruments included a sociodemographic questionnaire, the Critério Brasil, semi-structured interviews, and psychoanalytic narratives. Data were analyzed through a psychoanalytic lens, guided by an engaged, implicated psychoanalytic approach. Preliminary findings indicate that MM imposes significant changes. These include increased restrictions, such as the need for retirement – meaning cessation of work due to the diagnosis – and greater physical impairment, primarily due to pain. The moment of diagnosis was generally experienced as traumatic, with particular emphasis on the intense pain associated with the biopsy procedure, as well as the loss of pleasure in eating, linked to taste alterations during chemotherapy or bone marrow transplantation. The concepts of death and dying emerged prominently during this critical initial treatment phase and, while later assuming a less central role, were continuously revisited. Spirituality was identified as a key source of support throughout the entire process. The family – particularly the nuclear family – was highlighted as the primary support network. The development of self-narratives for inclusion in the book, combined with the shared experience of the group setting, proved valuable in supporting these patients. This process not only fostered opportunities for self-reflection and reframing of the illness experience but also created a safe and caring space to address sensitive issues that often go unnoticed or are repressed during treatment. This research is supported by CAPES. Process number: 88887.999621/2024-00