Purpose of review
The trajectory of living with incurable cancer is characterized by increasing deterioration of the person's body. The aim of this review is to gain insight into the expert knowledge people have about their own lived experiences of bodily deterioration and symptoms in late palliative phases of cancer, and suggest a framework for understanding and studying these experiences.
When assessing the presence, severity and distress of symptoms and problems experienced by patients, it is important to carefully consider choice of instruments, which by nature, tend to target distinct problems, and expand assessment to include narrative approaches. Deterioration of the body and symptom distress can have dire consequences for the individuals, as these threaten the intactness of the person, may lead to desire to end one's life, can act as determinant of place of death, and dominate the sick person's existence.
Understanding the meaning bodily deterioration and symptoms have for patients is intrinsic for optimization of supportive interventions. We suggest that improved integration of knowledge from logical scientific and narrative approaches in research aiming to generate empirical and/or theoretical knowledge, and cross-fertilization of research from closely related areas can contribute to improving care for this vulnerable group of patients.