"Often Relatives are the Key [ ]" -Family Involvement in Treatment Decision Making in Patients with Advanced Cancer Near the End of Life.

BACKGROUND: Family communication has been increasingly recognized as an important factor in decision making near the end of life. However, the role of the family in decision making is less studied in oncology settings, where most patients are conscious and able to communicate almost until dying. The aim of this study was to explore oncologists' and nurses' perceptions of family involvement in decision making about forgoing cancer-specific treatment in patients with advanced cancer. MATERIALS AND METHODS: Qualitative semistructured interviews with 22 oncologists and 7 oncology nurses were analyzed according to the grounded theory approach. The results were discussed against the background of the clinical and ethical debate on family role near the end of life. RESULTS: We could identify two approaches shared by both oncologists and nurses toward family involvement. These approaches could be partly explained by different perception and definition of the concept of patients' autonomy: (a) a patient-focused approach in which a patient's independence in decision making was the highest priority for oncologists and (b) a mediator approach with a family focus in which oncologists and nurses assigned an active role to patients' family in decision making and strived for building consensus and resolving conflicts. CONCLUSION: The main challenge was to involve family, increasing their positive influences on the patient and avoiding a negative one. Thereby, the task of both oncologists and oncology nurses is to support a patient's family in understanding of a patient's incurable condition and to identify a patient's preference for therapy. IMPLICATIONS FOR PRACTICE: This study focused on oncologists' and oncology nurses' perceptions of family involvement in decision making about treatment limitation in patients with advanced cancer who are able to communicate in a hospital setting. Oncologists and oncology nurses should be aware of both positive aspects and challenges of family involvement. Positive aspects are patients' emotional support and support in understanding and managing the information regarding treatment decisions. Challenges are diverging family preferences with regard to treatment goals that might become a barrier to advanced care planning, a possible increased psychological burden for the family. Especially challenging is involving the family of a young patient because increased attention, more time investment, and detailed discussions are needed.

Self-perception versus professional assessment of functional outcome after ablative surgery in patients with oral cancer.

PURPOSE: The extent of functional impairment after ablative surgery in the orofacial region may be directly reflected in a reduction in Quality of Life. This study intended to compare the patients' perception with an objective functional evaluation of the orofacial system in order to bilaterally distinguish direct influence factors. METHODS: A total of 45 patients were included in this study and were asked to complete the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-30) and the Head and Neck 35 Module (H&N 35). Afterward one independent speech therapist evaluated the patients applying the Frenchay Dysarthria Assessment regarding four main categories: mouth opening, tongue motility, swallowing and intelligibility. Comparisons between groups were performed using Whitney-Mann U-Wilcoxon test and calculating Spearman's rho. RESULTS: Overall the professional assessments by the speech therapists revealed significantly higher scores regarding intelligibility, swallowing and mouth opening when compared to the patients' self-perception. Smaller tumor sizes, no bone resection and local reconstruction techniques led to significantly better functional outcomes, when assessed by speech therapists. Swallowing was perceived significantly better by patients in cases of local reconstruction. CONCLUSIONS: From the professionals' point of view differences were perceived in more items compared to the patients' self-assessments, who widely experienced a more severe functional impairment. Physicians should take this into account when discussing adverse therapy effects with the patients.