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 shows that end-stage cancer patients receive chemotherapy troublingly close to death, that end-stage cancer patients are shockingly uninformed of their prognosis and harms of treatments, and that severe emotional pain and suffering remain largely unchecked. The initial Outstanding Investigator Award (OIA) 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 and therapeutic alliances can improve patient prognostic understanding and lead to more informed, value-concordant EoL care –> our Oncolo-GIST approach as a simple, effective way oncologists can feel comfortable communicating the gist of a patient’s prognosis; 3) that healthcare chaplaincy can address frequently high unmet spiritual care needs of patients with advanced cancer and, thereby, also 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) the role of caregivers in promoting better EoL cancer care; 3) the role of healthcare chaplains and 4) psychosocial influences (e.g., therapeutic alliances) in addressing unmet needs of cancer patients at the EoL. I will leverage data, theories, and the clinical and scholarly resources (colleagues and collaborators) developed under the auspices of the current OIA to: improve delivery of EoL cancer care; increase the frequency and effectiveness of their prognostic disclosures; promote cancer patients’ prognostic understanding and therapeutic alliances with their oncologists; and reduce psychosocial distress of patients and caregivers to enhance their mental health and promote their engagement in ACP. Renewal of this OIA has and 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