Quality of end-of-life care for women diagnosed with metastatic breast cancer.

Abstract

238 Background: Metastatic breast cancer (MBC) is a progressive, non-curative disease, with multiple therapy options. The toxicities and side effects from these therapies, as well as the signs and symptoms of advancing cancer, can cause patient and family related distress. To address these end-of-life (EOL) care needs, standards of care were established and recommendations provided. However, it is not clear if these standards are comprehensive in describing current MBC populations and their EOL experiences. Methods: This study used a sequential quantitative-qualitative mixed methods design to examine the quality of EOL care. The deceased patient’s designated personal representative (DPR) completed the Quality of Death and Dying (QODD) survey, with a subsequent/optional telephone interview. Results: The DPRs were predominately male (n=18; 72%), white (n=23; 92%), had some college education or more (n=24; 96%), and was the spouse/partner (n=16; 64%). The range in age was 25-95 years (SD 14.51), with the length of relationship varying between 7-63 years (SD 14.38). In the QODD survey (N=25), 40% (n=10), rated the overall quality of their loved one’s dying experience as ‘poor’ (score 0-4), yet 60% (n=15) rated the care they received from their healthcare team as ‘excellent.’ During the interview (N=16), the DPR was then asked to explore what made or what would have made for high quality EOL care. Four major categories emerged: resilience in response to transitions of care and adaptations to lifestyle changes; communication between healthcare providers and the patient/DPR in both content quality and delivery style; perceived support from the healthcare team, family, or spiritual advisors, specifically during changes in treatment goals; and knowledge as it relates to past experiences, when it was perceived as missing, or lack the knowledge regarding how to gather new information. Conclusions: The care needs for both the patient and DPR dynamically evolve throughout an MBC diagnosis and treatment. While resilience, communication, support, and knowledge all play a key role in the perception of the DPR regarding the quality of death experienced by their loved one, it is important to note that these experiences took place well before the EOL occurred and should be considered at the start of MBC treatment.