Wednesday, July 17, 2013
Many readers of this blog may know well my dear friends and colleagues, Peggy Battin and Brooke Hopkins. Over the past nearly-five years, they have dealt with Brooke's biking accident which left him essentially unable to move below his shoulders. This Sunday's New York Times magazine will feature a story by Robin Marantz Henig about Peggy and Brooke: how they have thought about dying, autonomy, and living with disability. They are both truly remarkable, and the story is worth reading, again and again, for this alone--as well as for the bioethics thinking it reflects.
A subtheme of their lives is home care. Some of these issues that they and others face are financial--our failure to pay for long term care through traditional insurance, the incentives that favor institutioinalization over living at home, the characterization of expenses such as modifying a shower as not medical, and the sheer expense of equipment such as wheelchairs. But some are regulatory: what type of wheelchair will be covered, what kinds of licensing requirements apply to home aides, and perhaps most troubling what activities can result in decisions to terminate the home health services that are available. Too often, we insist that people must only use devices such as wheelchairs within the home, or that people must only stay within the home except for medical appointments, in order to continue to qualify for home health services.
I fully recognize that all of these issues are contested ones. However, I hope that those reading the story will appreciate the amazing lives that Brooke and Peggy live and the importance of Brooke's being able to live at home for them both, as well as their enormous skill in negotiating the troubling realities of home care today.