Patient experiences of pain and pain management at the end of life: a pilot study.

Cancer pain is a difficult symptom for patients to handle, causing patients extreme discomfort and a decreased quality of life. To support independent pain control for patients with refractory pain while staying in their home, an intrathecal approach for continuous pain management with patient-controlled extra doses from an external pump was implemented. Pain management was supported by a structured guideline for the nursing interventions: To enhance the understanding of how the patients experienced their pain and the continuous pain management at the end of life, a pilot study was conducted. The study followed a qualitative design with unstructured tape-recorded interviews. Three themes emerged from the analysis: (1) The pain was dreadful, reminding the patient of the cancer and the uncertainty of the future; (2) the need to reveal and conceal pain coexisted; and (3) the pain management and structured guideline contributed positively to gain a new perspective on health in which pain did not play the central role. The conclusion is that patients need to communicate their experiences of the pain to manage the pain adequately, while at the same time they need to conceal it to manage their everyday environment. Forthcoming research will focus on the relation between the pain and the way patients experience cancer and on the experience and specific needs of their family.