An increasing number of older people will experience the challenges of living with both cancer and dementia. However, despite a heightened disease burden in the dementia population and evidence of inequities in diagnosis and access to cancer treatment compared to people without dementia, little is known about the extent to which inequities persist at the end of life and the implications of cognitive capacity on the end-of-life decision-making in oncology.
This project entails two studies: 1) To characterize the extent to which end-of-life healthcare use among US people who died with cancer differs from those with a coincidental diagnosis of dementia; 2) To describe perceptions/experiences of professionals working in inpatient oncology in Belgium towards end-of-life decision-making with people who have cancer and cognitive impairment/dementia (i.e. (the assessment of) capacity to inform decision-making; decision-making processes and outcomes; goals of care discussions/advance care planning; initiation of palliative care).
In Study 1 we will perform retrospective analyses of US Surveillance, Epidemiology, and End Results (SEER)-Medicare linked data. Study 2 will include qualitative interviews with professionals from multiple disciplines working in hospitals in Belgium with adults who have cancer and cognitive impairment and/or dementia.
This project hopes to provide insights into a rapidly growing understudied population, that is currently vulnerable to health inequities in end-of-life care. Findings from Study 1 will highlight potential priorities for optimizing care at the end of life in the US. Study 2 may inform development of professional guidance on end-of-life decision-making in Belgium.
Dr. Joni Gilissen
Prof. Jennifer S Temel ( Massachusetts General Hospital Cancer Center, Boston, MA, USA)
Prof. Ellen P McCarthy (Hinda and Arthur Marcus Institute for Aging and Harvard Medical School, Boston, MA, USA)