Behavioral and Psychosocial Effects on Study Outcomes in End-Stage Cancer Treatment (BEST End-Stage Cancer Study)

Despite great strides that have been made in the understanding and treatment of cancer, the number of cancer deaths remains on the rise and cancer remains the 2nd leading cause of death in the United States (US). Not only is the number of people dying of cancer increasing, but the quality of those deaths is alarmingly poor. End-of-life (EoL) care in the US has been deemed a public health crisis by the National Academy of Medicine -- a conclusion bolstered by disturbing findings from my group. My research has shown that end-stage cancer patients receive chemotherapy troublingly close to death, that end-stage cancer patients are shockingly uninformed of their prognosis and the harms of EoL treatments, that racial/ethnic minority groups receive dramatically inferior EoL cancer care, and that severe emotional pain and suffering remain largely unchecked. The current Outstanding Investigator Award (OIA) research has identified and targeted psychosocial factors to address these problems; the results have proved paradigm-shifting and practice-changing. For example, we showed that: 1) “palliative chemotherapy” does not “palliate” and may actually do more harm than good -> highlighting the need for oncologists to recognize the harms of “overtreatment” and refrain from prescribing chemotherapy to patients they deem close to death; 2) oncologist prognostic communication can improve patient prognostic understanding and lead to more informed, value-concordant EoL care, but it occurs infrequently, and ineffectively –> our Oncolo-GIST approach as a simple, effective way oncologists can feel comfortable communicating the gist of a patient’s prognosis; 3) that “one size does not fit all” in addressing disparities in EoL cancer care->our Divine Intervention targeting black patients’ medical mistrust and spiritual care needs as a way to promote advance care planning (ACP); 4) that psychosocial distress is an important influence on, as much as outcome of, EoL decision-making->our EMPOWER psychosocial intervention targeting “experiential avoidance” to promote caregiver psychosocial adjustment and engagement in ACP. Going forward, this OIA will focus on: 1) oncologist communication; 2) cancer disparities; and 3) psychosocial distress. I will leverage data, theories,and the clinical and scholarly resources (colleagues and collaborators) developed under the auspices of the current OIA to: improve oncologist delivery of high quality EoL cancer care; increase the frequency and effectiveness of their prognostic disclosures; promote cancer patients’ prognostic understanding; ensure the equitable delivery of EoL cancer care; and reduce psychosocial distress of patients and caregivers to enhance their mental health and promote their engagement in ACP. Renewal of this OIA will enable me to conduct research helping to ensure that dying cancer patients and their caregivers receive the highest quality of EoL cancer care possible.