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  • Field Notes
  • Nancy Berlinger, Deputy Director

“Take it and read.” It’s never a good day when someone has to turn to “ethical guidelines.” This was one of the observations from the January 2007 plenary meeting of The Hastings Center’s Guidelines on End of Life Care project. We talked a lot about what will prompt someone to open (or point and click on) the document that will result from it. Here are some other insights from our team of clinicians, legal experts, and scholars:

Assume a messy situation.

Assume that someone is suffering, and that someone else doesn’t know how to make the right decision about how to relieve the suffering. There may be conflict over this decision, more often within the clinical team than within the family.

Remember that ambivalence is typical in end of life decision-making. The medical environment is a hostile environment for ambivalence. The legal environment assumes no one is ambivalent about these decisions. Public policy around advance directives assumes you know exactly what you want and don’t want—but later, you may be ambivalent about these choices.

Remember that the person looking for ethical guidance is a person in distress.

Our imagined reader is the archetypal “clinician at the bedside.” We aim to keep our Guidelines close to the reality of this clinician and the decisions he or she presents to patients and families. We imagine other readers, as well: ethics committees and consultants; administrators who set priorities on and commit resources to end of life care; medical and nursing educators; policy-makers, who are also part of end of life care through statutes, case law, and public policy; scholars; journalists; and advocates.

But back to that clinician. That’s the reader I think about the most—the one who reminds me of another distressed reader. In a famous passage in Book VIII of his Confessions, Augustine of Hippo describes a spiritual crisis so intense he does not want even his dearest friend to witness it: “I moved away far enough to avoid being embarrassed even by his presence.” He hears a child singing, “Take it and read, take it and read.” He tries to remember—this is a lovely detail—“whether there was any kind of game in which children used to chant words like these.” Concluding that he’s hearing something more than children at play, he opens his Bible, reads a sentence or two of Paul, and “it was as though the light of confidence flooded into my heart and all the darkness of doubt was dispelled.”

We do not expect to get the same instantaneous effect from our Guidelines. But we can hope to give some confidence, dispel some doubt, bring some light. [End Page c2]

Nancy Berlinger, Deputy Director
Associate for Religious Studies


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Archived 2012
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