Editor's Note

MEDICALLY FUTILE

When do we know a case is truly hopeless?

Last week two magazines arrived in my mailbox with thought-provoking articles that made me wonder how do we know which cases are, or are not, medically futile? 

The first article, in the March 24 issue of Time, was about a paralyzed French journalist, the former editor in chief of France's Elle magazine.  In December 1995, at the age of 43, Jean-Dominique Bauby was stricken with a massive stroke, leaving him able to move only his left eyelid.

Time gave credit to the nurses who cared for him:  “By telegraphing a series of blinks, Bauby let his nurses know that his mind was alive and well inside its immobile frame.  They responded by reciting a special alphabet to him with the understanding that Bauby would blink at letters he wanted written down. Repeating the process resulted in words, sentences, and entire discussions.”

The French patient started his blink-writing career with a letter to friends to reassure them that he was not the virtual vegetable he seemed.  Editors who read the letter proposed he write a book.  And so he did.  Composing every day before sunrise, dictating letter by letter, blink by blink, to an employee of the magazine.

Bauby died 72 hours after finishing the 137-page work.  His book, Le Scaphandre et le Papillon (The Diving Bell and the Butterfly) has sold out in France and the English translation has just become available in the United States.  It is a celebration of life by a man who could not move or speak. An inspiration, to be sure, but also a message of caution for all of us in health care as we try to determine what treatment is worthwhile, what is not, and for whom.

To order the book,     click on the image above.

The other notable article, in the March/April Healthcare Forum Journal, discussed medical futility and the new terms being bandied about in managed care.  The term medical futility is based on the assumption that some expectations of patients are so unrealistic or so infinite that they are untenable. Some nurses, physicians, and other providers are often frustrated with cases they deem medically futile, and they are urging their institutions to set more limits on what care the system will provide in such situations.

I understand the frustration providers feel when caring for the patient dependent on g-tubes, respirators, and much more for what seems to be an entirely useless and completely difficult life.  But what about Bauby and others like him, who remind us of how wrong we can be when we label a person beyond hope or a case medically futile?

Few of us would have the tenacity to blink-write a book. And few of us would volunteer to be the one to tell patients and families that the hospital will withhold care because we've decided their case is medically futile.  Some cases do seem useless, and some do not.  How do we tell the difference?  And when?

Barbara Bronson Gray, MN, RN
Editor in Chief