The second patient? Family members of cancer patients and their role in end-of-life decision making

• Main Authors: Katsiaryna Laryionava, Timo A. Pfeil, Mareike Dietrich, Stella Reiter-Theil, Wolfgang Hiddemann, Eva C. Winkler
• Format: Article
• Language: English
• Published: BMC 2018-02-01
• Series: BMC Palliative Care
• Subjects: Medical oncology; Medical ethics; Communication; Palliative care; End-of-life decisions; Family members
• Online Access: http://link.springer.com/article/10.1186/s12904-018-0288-2

Abstract Background Family members are important companions of severely ill patients with cancer. However, studies about the desirability and difficulties of integrating relatives in the decision-making process are rare in oncology. This qualitative study explores the family role in decisions to limit treatment near the end of life from the professionals’ point of view. Methods Qualitative in-depth interviews were conducted with oncologists (n = 12) and nurses (n = 6) working at the Department of Hematology/Oncology at the University Hospital in Munich, Germany. The data were analyzed using a descriptive qualitative methodology and discussed from a medical ethics perspective. Results Four major themes played a central role in the perception of the medical staff in regard to family members. (1) Family impact on patients’ treatment preferences. (2) Strong family wish for further treatment. (3) Emotional distress of the family related to the involvement in end-of-life decision-making. (4) Importance of knowing family structures. Conclusions The important role of the family members in patients’ disease process is recognized by oncologists and oncology nurses. However, this does not seem to lead to an early involvement of the family members. Developing and establishing a systematic assessment of family members’ needs and wishes in order to provide a specific-tailored support should become a priority for interdisciplinary clinical research in the near future.