Dying in America is more difficult than ever – and in many ways our healthcare system hurts more than it helps. While 70% of Americans report a preference to die at home, only about 30% of us achieve that outcome. The days of multigenerational households, where our mothers cared for our grandmothers in back bedrooms, have been largely replaced by family members separated by long distances. As a result, the prospect of caring for loved ones in late life has changed from being a potential inconvenience to a complex, expensive, and emotionally fraught undertaking. Patients, caregivers, and families are caught in a bind. I draw on a decade of research to examine why the lived experience of death and dying is so often at odds with healthcare ideals, who gets hurt by these differences, and how patients and caregivers can intervene for their own benefit. When we don’t get the end-of-life care we want, it is not necessarily due to “bad choices” but rather whole healthcare landscapes that influence death and dying.
Here is a link to an article I wrote for Maria Shriver’s Sunday Paper, outlining 3 key lessons about how to get more of the end-of-life care you want.