False Hope in a Bottle. When is it time to let go?

False Hope in a Bottle

By TOM NESI

PRINCETON, N.J.

Seven months ago, I made the decision to hasten the end of my wife's life. Susan lay in an irreversible coma and had not been fed for 10 days; she was being kept alive solely by fluids. An old family friend stopped by with advice that no one in the medical profession had been able to offer.
"You need to stop giving your wife liquid," he said.
I shook my head. "You cannot deprive a living being of water," I said.
"Your wife is no longer with us," he said. "She died of a brain tumor two weeks ago. Susan needs to rest now."
I still refused to accept the fact and called several of Susan's doctors and members of our family. Each of them reaffirmed that withholding fluid was the humane decision. Indeed, in her living will Susan had spelled out that she did not want "artificial prolongation" of her life either through nutrition or hydration.
For about a year, Susan had been offered numerous medications, including, in the latter stages of her illness, Iressa, which last month was approved by the Food and Drug Administration despite limited data about its effectiveness. Two other experimental drugs, Avastin and Erbitux, are now going through the F.D.A. approval process. With the release last week of new clinical studies, many believe the chances of approval have greatly improved. The process will likely be helped by the F.D.A.'s new program, unveiled this week, to work with the National Cancer Institute to accelerate the development and approval of cancer drugs.
It is hard to argue against making new cancer drugs available to the desperately ill. Certainly, these drugs are a step in the right direction in the fight against the disease. But so far they have been proved only to extend life by a few months in patients whose cancer has been diagnosed as virtually incurable. I think we need to ask ourselves whether offering terminal patients limited hope of a few more months is really beneficial. The question is not whether days are extended, but in what condition the patient lives and at what emotional and financial cost.
My wife was discovered to have glioblastoma, a deadly form of brain cancer, in August 2001. She was 52. The average survival time for patients with this disease is about 11 months. We, of course, hoped for more time.
Susan was treated at a prestigious medical center with access to a wide array of innovative drugs, including a Gliadel wafer, which delivered chemotherapy directly to the site of her tumor. On average, we were told, this treatment extends life by about two months. But Susan suffered a great many problems over the next few horrific months. She was hospitalized five more times and had two more brain surgeries. After a third surgery, she had a stroke that left her almost totally paralyzed and unable to speak or eat — leaving me with the decision to take her off life support.
But according 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.
This is indeed a very sad story . How uncommon do you believe it to be?
Is the few extra months afforded to terminally ill patients worth the effort considering the pain, suffering and cost of keeping one alive? And based upon the quality of life would you call it being alive. Would you want that for yourself or loved ones?