STRANGE AND MOURNFUL DAY

False Hope in a Bottle: His wife's life was extended by a few months thanks to experimental drugs. But what is the real cost of extending one's life? (TOM NESI, 6/05/03, NY Times)

[A]ccording to the medical profession, the experimental treatment had worked. Susan lived almost three months longer than the average patient with glioblastoma. Somewhere in some computer database, Susan's experimental regimen will be counted a success. She was a "responder." And therein lies the terrible truth behind the approval of "miracle drugs" on the basis of "tumor shrinkage" or "extended days." Susan's life was extended. But at what cost?

During those final months, we incurred expenses for four ambulance trips, two weeks in a critical care center, a full-time home health-care aide, a feeding tube and electronic monitor, home hospital equipment, occupational therapists, social workers and medication. My wife's treatment cost at least $200,000 (most of which, fortunately, was covered by insurance). I had to greatly curtail my work schedule and hire someone to handle the myriad bills.

I still hear the words of my wife's surgeon after her disastrous third surgery: "We have saved your wife's life. . . . We have given you the ability to spend more quality time with your loved one." And the words she scribbled on a notepad two weeks later: "depressed . . . no more . . . please."

Susan's last half hour was peaceful. We gave her morphine. Her eyes fluttered. I held her hand. Finally, her breathing stopped. On the table next to her were hundreds of pills, nutrition bottles, vials, needles. No longer needed.

Where there's some prospect that someone's life may be saved and their disease defeated, even extravagant expenditures may be justifiable. But where we're talking about people just buying themselves a few more hours, days, weeks, months, it is perhaps better to help them face up to the inevitability of their own imminent mortality. And, one problem with how we deal with these issues is unintentionally revealed in the surgeon's words to Mr. Nesi: "We have given you the ability to spend more quality time with your loved one." In many (most? all?) cases the decisions end up being driven by the needs and desires of others rather than of the patient, who--weakened by disease, drugs, etc.--is unlikely to be in a state that allows them to clearly comprehend and vigorously defend their own best interests. The final indignity we heap upon the dying may well be to use them to serve our own ends. Posted by Orrin Judd at June 11, 2003 12:36 AM