|July 25, 2013|
The question of how and when we make end of life decisions continues to highlight important ethical questions. Dr. Peggy Battin’s reflections about her own personal journey with her husband’s catastrophic injury suggest that each decision needs to be approached with fresh eyes to discern the nuances and meanings present in that moment. So often, we believe that we know the answer to these fundamental questions in advance of the moment of decision-making. Yet, as she points out, our experiences are rarely as we have planned or anticipated. Research suggests that what we think we would do in such circumstances may not be what we actually do. Furthermore, how we make such decisions or how our surrogates make them may be guided by more than claims of autonomy and may include concerns about the integrity and well-being of the family over what the individual would actually choose for themselves. In the end, it seems, everyone is searching for a way to create a sense of integrity as a person, family member or clinician.
Given this reality, how ought we to think about such decisions? What processes ought to be in place to support all the people involved in the decision–patients, families, nurses, doctors, and others–to find a place of integrity in the midst of confusion, fear and grief? How do we apply principles such as autonomy to these complex and nuanced situations? Perhaps, the question is how do we design a system that is flexible and responsive enough to accommodate a range of responses to such questions of living and dying? Are there immutable boundaries that ought to be constructed? If so, where would we draw them? These are the questions we are continuing to grapple with and given the significance and meaning of the answers, we must be willing to be in the human struggle with them instead of relying on answers that arise without reflection or principled compassionate action. There are no easy answers.
Cynda Hylton Rushton, PhD, RN, FAAN, is the Anne and George L. Bunting Professor of Clinical Ethics. She holds a joint appointment in the Johns Hopkins University schools of Nursing and Medicine – Department of Pediatrics – and is a founding member and core faculty at the Johns Hopkins Berman Institute of Bioethics