Being Mortal, Atul Gawande
Atul Gawande’s Being Mortal transformed the personal pain I felt from witnessing my father at the end of his life into a realization of the systemic need for human-centered design approaches to end of life healthcare. Though he may not call himself a designer, there is something profoundly innovative about Gawande’s approach to thinking about end of life healthcare. At the root of his call to action is the notion that the end of life healthcare system as it exists today has been built for the wrong user: the family of the patient, rather than patients themselves. While family members are key stakeholders in the end of life, their needs and wants are fundamentally different than those of patients. They desire safety and longer lives for their loved ones; patients desire autonomy over their lives that will sustain the quality of their life.
Whose needs win out? We find the answer in the increasing occupation of hospital beds and nursing homes, which are environments that families find to be most accommodating to their needs for their elderly parents and grandparents. Yet if the end of life healthcare system is supposed to serve patients but sacrifices their needs in order to prioritize the needs of families, it has ultimately failed its users, and patients at the end of their lives will fall into this gap. The end of life healthcare system thus requires a reprioritization and humanization of the patient.