Last Sunday’s New York Times Magazine cover article gave readers an in-depth perspective into the lives of Brooke Hopkins and end-of-life ethicist Peggy Battin. The article explores their lives together since Brooke was severely injured in a bicycle accident in 2008. Since the accident, Brooke has been living with quadriplegia and dependent on life-preserving technology.
The article’s author, Robin Marantz Henig, does an excellent job looking at the complexities surrounding health care decisions and how perceptions change throughout a prognosis. What makes their experiences unique is Peggy has devoted her life to researching and publishing articles exploring the ethics around Death with Dignity laws and other end-of-life options.
Since the New York Times Magazine article was published, some individuals have claimed the challenges Brooke and Peggy have faced together somehow detract from her work surrounding end-of-life ethical dilemmas and places Peggy’s support for Death with Dignity laws in conflict with the realities of her and Brooke’s life. As she explained in a Fresh Air interview this week, this simply isn’t the case. From the NPR interview:
“It doesn’t diminish in any way my belief that people—my belief and firmly considered position that people ought to be able, ought to be legally protected, legally empowered to control the character of their own deaths. That is, I do favor legalization of Death with Dignity laws, but that doesn’t mean that these decisions are always easy. There [are] some differences. Brooke is not terminally ill, in any standard sense, although his life in certain ways is precarious, his survival. I’m not a physician, I don’t pretend to be, so under the Death with Dignity laws it would be the physician that made the determination of whether ceding to this request was appropriate or not. … If a physician under these laws were to receive a request from a patient and had any doubts about competency, they would be expected to request a psychological or psychiatric consult.”
Her and Brooke’s experiences add depth to the conversations about self-determination and autonomy. Far too often in our current political climate, issues are distilled into x or y; each of us can only be for or against a concept without any room for a spectrum understanding and feelings.
Very few, if any, ethical dilemmas fit within these strict confines. The world and its inhabitants are complex with many variables. The “right to die” and the “will to live” can exist at the same time, even though they are posited as mutually exclusive. Peggy herself articulates the deeper understanding she has achieved over the last few years experiencing personally what was once academic, “What has changed…is my sense of how extremely complex, how extremely textured, any particular case is.”
Not many families will experience the difficult ethical decisions and intrusive life-extending medical technologies which have become part of Brooke’s and Peggy’s life. We can, however, all learn more about decision-making surrounding our own mortality by examining how this family has approached theirs.
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