For the masses in the middle -- people who may have to borrow and scrape to pay for care -- finding the best of the best can be just as important.
Ruth Medina, 25, had a good prognosis with standard medical treatment when she suffered a recurrence of Hodgkin's disease, a cancer of the lymphatic system. But, raised a Jehovah's Witness in San Jose, she refused to submit to the life-saving procedure, a stem cell transplant, unless providers would guarantee that no blood would be transfused into her body -- even if her life hung in the balance. Almost no providers would sign on for such a deal. Without the transplant, she would die.
FOR THE RECORD
Bone marrow transplant: A June 23 Health article about bloodless stem-cell transplants, "Hodgkin's Disease Treatment Without A Blood Transfusion," incorrectly stated that six patients of Dr. Michael Lill had died in part because of their wishes to forgo transfusions. Actually, only one patient undergoing the technique died, Lill says, most likely because of the patient's disease, not the transplant itself.
Then she found Dr. Michael Lill, director of the blood and marrow transplant program at Cedars-Sinai Medical Center's Samuel Oschin Comprehensive Cancer Institute.
"A number of people think it's peculiar that I do this. Most of my colleagues are happy that I do it, and not them," Lill says. He developed a procedure called a bloodless transplant in which the patient's hemoglobin count is raised as high as possible before surgery, greatly reducing the chance that a transfusion will be needed. "We don't waste a drop of blood." He's done it 20 times or so, always for people who, rather than accept a blood transfusion, would forgo any care and surely die. And, in part because of their wishes to forgo transfusions, six of his patients have died.
Lill is an atheist, but a strong believer in patient autonomy. "You have to be prepared to respect their wishes, even if you disagree," he says. "And even if it may result in the patient's death."
Medina's own oncologist was unaware of Lill's technique. Church members, who had formed a health committee dedicated to finding care within the strictures of the religion -- and providing legal advice -- knew of Lill's procedure. She followed up, finding details through her own Internet searches.
Lill is one of only two physicians in the country (the other is Dr. Patricia Ford at the Center for Bloodless Medicine and Surgery at Pennsylvania Hospital) who offer the procedure to people whose religious convictions lead them to prefer death to a blood transfusion. "These people wouldn't otherwise be helped," Lill says. "The world is full of people who hold completely different beliefs to yours. You can still respect them."
Her oncologist knew of her beliefs. Medina showed him the results of her search, convinced him of her determination to have a bloodless transplant, or no transplant at all, and enlisted him in her effort to get the approval she needed from her HMO, Kaiser Permanente. "My transplant went very well," she says. "I'm blessed."