END-OF-LIFE DECISIONS
By Maryann Napoli
(July 2003)

The Division of Medical Ethics at Weill Medical College of Cornell University has published an interactive workbook for end-of-life decision-making. It stresses the importance of appointing a healthcare proxy, a trusted relative or friend, who will make decisions on your behalf should you become too ill to do so yourself. The workbook takes the reader step-by-step through the process of appointing a proxy while also providing practical guidance on how to develop an effective relationship through meaningful and open discussions with each other.

The time to appoint a healthcare proxy is before illness occurs. Extensive discussions with the healthcare proxy are crucial to ensure that your wishes are fully understood because end-of-life decisions often become complicated as the workbook clearly illustrates. To get the conversation going, a companion video shows the actress Kathleen Chalfant and her husband Henry Chalfant talking in the most intimate, intelligent, emotional, and loving way about what each would want at the end of life. Kathleen had been a proxy for three people and wished that she had had more discussions with them beforehand; Henry's father died painfully after three weeks on a ventilator without a living will to guide his children about his wishes. Married for 36 years, each has agreed to be proxy for the other.

Using the real-life scenarios in the workbook, they take turns imagining themselves as the patient, for example, a person who told her proxy that she never wanted to be kept alive with machines but is now unconscious and in need of a ventilator that will help her recover from a curable pneumonia. And this example: a person told his proxy that he "wanted everything done, no matter what," but years later, after frequent hospitalizations the same person says he's "fed up." The examples from the workbook and the Chalfants' discussions show clearly that telling your proxy, "I never want to be kept alive with machines," isn't always enough to go on.

To Order:

The interactive workbook and companion video were written and produced by Joseph J. Fins, MD, and Barbara S. Maltby, MA, New York-Weill Cornell Medical Center, New York, NY. To purchase a copy of one or both, send a check for $13 payable to "Fidelity, Wisdom and Love" and mail it to Patients and Proxies in Partnership, P.O. Box 437, Kensington, CT 06037-0437. Add $19 for the video. Prices include shipping and handling. For phone or group orders, call (860) 828-2976.