Perspectives on Death and Dying by the Bereaved Designated Personal Representatives of Women Diagnosed With Metastatic Breast Cancer.

Abstract

Metastatic breast cancer (MBC) is a complex disease with variability in disease subtype, length of survival, treatment selection, symptom burden, and, ultimately, end-of-life (EOL) care. Influencing factors that contribute to the complexity of this disease are socioeconomic factors, provider differences, and patient and family preferences. Because of this variability, it is challenging for health care providers to know when treatments are no longer helpful but contribute to a poor quality of end-of-life care and a poor death experience for both patients and their families. Determining the unique point, based on their own values and goals, at which patients and their family members feel that MBC treatment becomes unhelpful and unwanted, is difficult to ascertain. Of the 25 individuals who participated in the Quality of Death and Dying survey, 16 individuals participated in an interview to provide a reflection of the patient's EOL experience and its congruence with their wishes. Four major categories emerged as primary priorities essential to high quality end-of-life care, that is, resilience, communication, support, and knowledge. Without tailored and precise care, patients with MBC will continue to receive prolonged, inappropriate, and costly treatment, resulting in a potentially unacceptable poor-quality EOL and death experience.