Improving access to palliative care to mitigate multi-dimensional breast cancer suffering.
Authors: Felicia Marie Knaul, William E. Rosa, Lukas Radbruch, Xiaoxiao Jiang, Valentina Vargas, Afsan Bhadelia, Héctor Arreola-Ornelas, Marissa Coppola
Journal: Journal of Clinical Oncology (2024)

e24084 Background: The breast cancer (BC) divide persists as a global health and equity challenge. IARC data show that in low human development index (HDI) countries – 1/27 women is diagnosed with BC in their lifetime and 1/48 die from it. In very high HDI countries, BC is more common (1/12), but death is much less so (1/71). Hence, BC generates a substantial burden of serious health-related suffering (SHS) worldwide, and a particularly high and unmet demand for end-of-life care in poorer countries. This research links to three Lancet Commissions (LC): the forthcoming report of LC on BC, follow-up to LC Global Access to Palliative Care (PC), and LC on Cancer and Health Systems. We apply the concept of SHS to delineate and measure PC need for BC. This research is the first to explore disease-specific SHS, building on previous estimates that did not differentiate across cancers. Focusing on BC adds knowledge on: experiences of suffering across the cancer continuum including survivorship; dimensions of suffering specific to women and especially young women; and, differences in symptoms of suffering by stage of diagnosis. Methods: To identify symptoms and dimensions of suffering and to estimate the BC-specific SHS burden, 14 experts, most from the Lancet BC Commission, based in 12 countries of varying HDI, participated in: 1) an online survey on days of SHS and days receiving PC; 2) focus groups to discuss BC need for generalist and specialist PC from time of diagnosis; and 3) structured interviews to refine and deepen data. Results: Stage IV disease and end-of-life account for most PC consultations; no PC consultations were recommended in earlier stages. Experts concluded BC-specific SHS must be differentiated for metastatic disease based on staging, and highlighted symptoms of suffering associated with gender, reproductive age and sexuality ignored in previous work. They estimated an annual average PC need of approximately 175 days for decedents, and over 50 days per year for non-decedents estimated to live 4 years with SHS. Unmet need is high as BC decedents reported receive about 75 days, and non-decedents about 90 days of PC prior to the last year of life. Oncology experts focus on PC being only for final disease stage, yet PC experts stress the need for earlier PC integration into the BC trajectory, including survivorship. Conclusions: With 669,500 deaths in 2023, the burden of BC-specific SHS total is estimated at over 118 million days a year. These numbers represent suffering from pain, dyspnea, fatigue, as well as range of other symptoms that could benefit from PC. Yet, PC is unavailable for the majority in low- and middle-income countries. In addition, some BC symptoms of suffering are under-recognized globally. Health and cancer should prioritize this substantial opportunity to respond to patient, family and caregiver suffering by investing in appropriate PC access and capacity development.