THE ETHICS OF BLOODLESS MEDICINE
By Amanda Schaffer
August 14, 2015
This is the third in a three-part series, “Medicine Without Blood,” about the ways that Jehovah’s Witnesses have changed the way doctors think about blood transfusion. Read Parts One and Two: “How Jehovah’s Witnesses Are Changing Medicine” and “Should Anyone Be Given a Blood Transfusion.”
Pennsylvania Hospital, in downtown Philadelphia, was Colonial America’s first hospital, founded in 1751 by Benjamin Franklin and the physician Thomas Bond. For much of its history, the hospital’s staff treated conditions from pneumonia to gangrene and headaches with aggressive bloodletting, a practice that may have originated in ancient Egypt, and that persisted for millennia, despite the scarcity of evidence that it cured patients of disease. Benjamin Rush, who was a co-signer of the Declaration of Independence and practiced at Penn Hospital in the late eighteenth and early nineteenth centuries, was known by colleagues as the Prince of Bleeders. His enthusiasm arose from the belief that “all disease arose from excitation of blood vessels, which copious bleeding would relieve,” according to the author Douglas Starr. “If the patient fainted, so much the better, for it meant that the harsh measures were taking effect.” During the yellow-fever outbreak of 1793 in Philadelphia, Rush reportedly treated more than a hundred patients a day with bloodletting; years later, the provost of the University of Pennsylvania recalled that “his house was filled with the poor whose blood, from want of a sufficient number of bowls, was often allowed to flow upon the ground.”
Widespread blood transfusion, by contrast, is less than a century old. Yet it, too, was popularly adopted without rigorous testing of when, exactly, it benefitted patients. Just as early practitioners accepted the virtues of draining blood away, most mid-twentieth-century doctors took it on faith that infusing more was better. On a warm Saturday in April, however, more than a hundred Jehovah’s Witnesses gathered in the auditorium at Penn Hospital to learn about a program in bloodless medicine, in which patients choose to forego transfusion under all circumstances, and instead receive, in the course of their care, a range of treatments designed to build up their own red-blood-cell counts and painstakingly conserve as much of their blood as possible.
Jehovah’s Witnesses object to transfusion because they believe that scriptural passages forbid it. But the attendant reasoning—that an individual’s singular qualities, life and soul, are carried in blood—does not fall so far outside of the mainstream imagination. When we get hurt as kids, the first thing we notice is whether it’s bleeding. Blood rushing down an arm or a leg is a badge of honor. But blood also gives us away, revealing embarrassment when it rushes to the face, or lust when it rushes elsewhere. If we are sick or pregnant or dying, the proof is in our blood, more often than in our sweat or tears or spit. If we don’t know what’s wrong with us, we expect our blood to provide an answer. Blood symbolizes murder, birth, passion, danger, and conquest, as when hunters drink from a slain animal. Martian blood is never red like ours. Vampires can’t survive without sucking the lifeblood from people. In movies, when a drop of blood trickles from a wounded hero’s nose we know he is about to keel over. Blood is how we learn what our bodies can and cannot take.
Patricia Ford has led the bloodless-medicine program at Penn since 1998. She is a hematologist and an oncologist with a round face, sandy hair, and a neighborly smile. Before an attentive crowd of Witnesses, she took the stage wearing a white coat with a stethoscope around her neck. She was on call that weekend, and her pockets bulged with notes on pink index cards about the patients upstairs. From early in her career, when she did volunteer work with Jehovah’s Witnesses, Ford began to notice that anemic patients who might otherwise have been given donor blood seemed to do “just fine” without it. About a decade ago, when she and her colleagues matched bloodless and other patients treated at the hospital by diagnosis, they found similar rates of survival, with the bloodless patients leaving the hospital, on average, a day sooner. (Ford’s data did not include trauma victims, because Pennsylvania Hospital does not have a trauma center.) Still, Ford soon became convinced that non-Witness patients received donor blood more often than necessary. She began to apply techniques she’d honed on Witnesses, and the number of transfusions she ordered dropped almost ninety per cent.
Ford is perhaps best known for the work she does performing stem-cell transplants without transfusion. These interventions, which we used to call bone-marrow transplants, have long been given to patients with advanced forms of blood cancer—but always, traditionally, with donor blood. That’s because patients first undergo high-dose chemotherapy, which leaves them unable to produce blood cells of their own for several weeks. On stage, Ford told the audience about the first Jehovah’s Witness to approach her, early in her career, in need of this treatment: a thirty-year-old man with relapsing lymphoma. A stem-cell transplant was his only chance of a cure; without it, she believed he would die in a matter of months. “I didn’t know if anyone could survive the procedure” without a transfusion, Ford told the audience. The patient, however, was committed to moving forward without one, and, remarkably, he seemed to do well. He was in and out of the hospital in two weeks. “No complications, full recovery,” Ford said.
Word spread in the Witness community, and a few months later a twenty-one-year-old woman with Hodgkin’s lymphoma came to Ford in need of the same procedure. This time around, however, she died, “definitely of profound anemia,” Ford said. Blood transfusion might have helped. At first, Ford and her colleagues decided to stop offering stem-cell transplants bloodlessly. But then the young woman’s parents came into the hospital and urged them to reconsider. They believed that future patients could still benefit from this work, and appreciated that their daughter, who would have refused any transfusion even if she knew it would save her life, had at least been given a chance.
Ford was persuaded. She believed that she could do better with experience, and she has. She now boosts patients’ red-blood-cell counts aggressively in advance of transplant, using drugs called erythropoiesis-stimulating agents. To date, Ford has performed more than a hundred and thirty stem-cell transplants on Jehovah’s Witnesses and, in early April, she published a summary of her results, showing a mortality rate of six per cent. This is still higher than the national mortality rate for this procedure, which she cited as between one and 3.5 per cent. (For her non-Witness patients, some of whom she treats with transfusion and some not, depending on the specifics of the case, her over-all mortality rate is on par with the national figures.) She has had no deaths in either Witness or non-Witness patients for stem-cell transplants since 2010. Still, those who refuse to allow for transfusion under any circumstances may pay a price, even in Ford’s hands.
This raises a dilemma that she quickly acknowledges. In general, it would be unethical to offer substandard care to a particular group. That possibility seemed especially unsettling, since the vast majority of those listening to Ford’s speech, who represented prospective patients or former ones, were African-American. Yet Ford has cared for patients in accordance with their wishes: if treatment were not given without transfusion, most Jehovah’s Witnesses would opt out, she said. “Adult patients have the right to accept and decline the things that we, as physicians, offer, and we need to respect that.” Aryeh Shander, of Englewood, offered a more clinical comparison: “If a patient is allergic to antibiotics, you don’t sit around saying, If only we could give her penicillin. You get on with it and hope some good will come.”
The situation is more complicated when it comes to minors. In Ian McEwan’s novel “The Children Act,” a judge must decide whether to insist upon transfusion for a seventeen-year-old Jehovah’s Witness who has leukemia and who cannot receive two critical drugs without also accepting donor blood, according to his doctors. The judge visits the frail boy in the hospital, where he is writing poetry and learning to play violin. He is mature and articulate in his refusal of blood. Yet the judge concludes that he has experienced only an “uninterrupted monochrome” view of life, and that his welfare would be better served by not dying. (As the boy receives his transfusion, his parents, who have testified to their acceptance of religious dogma, weep openly, and he realizes they are weeping with joy.) Bloodless-medicine leaders at Penn Hospital and Englewood said that they had never faced a situation in which a Witness child needed a life-saving transfusion against the wishes of the parents. But if such a case arose, they would be obligated to get a court order, according to Pennsylvania and New Jersey state law.
Watchtower leaders still talk about a case from the nineteen-seventies, in which a hospital in Canada collided with a witness family. In that case, a baby was born with severe jaundice resulting from a condition that causes the destruction of red blood cells. The treatment at the time was to exchange the child’s blood through transfusion. The parents, however, refused; they wanted to try light therapy, which was then experimental, though it has since become the standard of care. When it became clear that the doctors were going to get a court order to require transfusion, the parents, according to lore, smuggled the newborn out of the hospital and drove to another institution, where light therapy was available. Apparently, after the child was exposed to sunlight for several hours in the parents’ convertible, by the time the family reached the second hospital the jaundice had substantially subsided.
In other cases, however, the outcome is less miraculous, and the ethical handwringing persists. The story of a twenty-eight-year-old patient, who was admitted to an Australian hospital in 2008, has reverberated throughout the Witness and bloodless-medicine communities. The patient suffered from advanced leukemia, like the boy in McEwan’s novel. She was also seven months pregnant. In keeping with her faith, she refused transfusion, although she was severely anemic and had low platelet counts. The staff debated whether to deliver the fetus by C-section, but believed the mother would bleed to death during the procedure without donor blood (and might otherwise have a chance of survival). Eventually, the fetus died in utero. The mother proceeded with a stillbirth, then had a stroke, went into multi-organ failure, and died, as well.
In a letter to the Internal Medicine Journal, her physicians grappled with these two “ ‘avoidable’ deaths.” “Not administering blood products in this case undoubtedly contributed to the death of mother and fetus,” they wrote. Although “competent adults may refuse any form of medical intervention—even where that intervention is lifesaving,” the case raises thorny questions about what happens when the wishes of a pregnant woman interfere with the well-being of her fetus. As the woman’s doctors told the Sydney Morning Herald, the case was profoundly unsettling because they “rarely see people die or make a decision that will hasten death.”
Yet the right to die on their own terms has meaning for Jehovah’s Witnesses—as does each story of medical success. Joan Ortiz, who is now at home in Florida, after her bloodless surgery to remove a tumor from her abdomen and spine, said that her experience “is building others’ faith” in her congregation. For a time, she walked slowly, afraid that her stitches would pop. She wore flats instead of heels and struggled with a swollen stomach. But now she’s back to a full exercise regime and, later this summer, she hopes to present her story to thousands of listeners in a religious assembly.
When asked about the Australian case, she said, “Oh, honey, please don’t be sad for her. The two of them will be resurrected, and she’ll get to see her new baby, and neither one of them will have that leukemia.”
“This sister has more of a hope to live in the new world than I do,” she added. “Because I still live here and I could make mistakes.”
QUELLE: http://www.newyorker.com/news/news-desk/the-ethics-of-bloodless-medicine
