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The Ethics of Blodless Medicine

How Jehovah’s Witnesses Are Changing Medicine

Amanda Schaffer

This is the first in a three-part series, “Medicine Without Blood,” about the ways that Jehovah’s Witnesses have changed how doctors think about blood transfusion. Read the second and third installments, “Should Anyone Be Given A Blood Transfusion?” and “The Ethics of Bloodless Medicine.”

In the Book of Acts, the apostle Paul urges congregants to abstain “from things sacrificed to idols, from blood, from what is strangled, and from sexual immorality.” Jehovah’s Witnesses, apparently alone among Christian groups, believe this verse, along with others, prohibits them from accepting blood transfusions, no matter how dire the circumstance. As Joan Ortiz, a Witness in her sixties, recently told me, it’s as much a sin to take a blood transfusion as to have an extramarital affair. In this interpretation of Scripture, those who comply will prosper and enjoy good health. Those who don’t can be cut off from their people and denied resurrection. “Everything about us is carried in our blood,” said Ortiz. “Our personality, our sicknesses, all the good things about us. It’s who we are. It’s our soul.” It should not be mixed, even if life depends on it.

Though Witnesses accept virtually all other medical interventions, the stricture against transfusion can affect their care. Patients may need donor blood when they lose their own blood rapidly, as a result of a car crash or surgery, or when they develop severe anemia—for instance, during cancer treatment. In the past several decades, specialty programs in “bloodless medicine” that cater to Jehovah’s Witnesses have grown up at dozens of hospitals.

Surprisingly, doctors’ experience in these programs has often led them to order blood far less frequently for other patients, as well. Some bloodless medicine experts have also helped lead a national movement calling for more sparing use of transfusion. Donor blood comes with risks for all patients, including the potential for immune reactions and infections. And clinical trials have shown that, for a broad range of conditions, restrictive transfusion practices do not lead to worse outcomes than liberal ones. In recent years, the American Medical Association has listed transfusion as among the most overused therapies in medicine.

An institution that has pioneered work in bloodless medicine is Englewood Hospital and Medical Center, in New Jersey. Englewood has long drawn patients from around the country and the world to its specialty program, and it is where, in early March, I met up with Joan Ortiz. By eight o’clock in the morning, she had been prepped for surgery and was waiting anxiously in a gleaming O.R, as staff members disentangled tubing, hung bags of fluid, and prepared to remove a large tumor from her abdomen and spine. A blue and white surgical gown was draped over her small frame. Her dyed-black hair, gathered earlier that morning into a youthful side ponytail, was now loose around her shoulders. Ortiz lives in Florida, but she was born in the Bronx to a Jewish mother and Christian father and she spent much of her life on Long Island. At the age of seventeen she married her first husband, and at age eighteen she began to think seriously about religion. When Jehovah’s Witnesses knocked on her door one day and offered to study the Bible with her, she was receptive to their outreach. As the conversation progressed, she found their textual knowledge compelling, along with the promise that the righteous would live for eternity on Earth. “I never wanted to live up in heaven,” she said. “I didn’t want wings.” Eventually, she was baptized as a Jehovah’s Witness, and then she and members of her new community persuaded the rest of her family to join the religion, too.

Ortiz had never before been in an operating room. She had, in fact, “never had anything worse than a cold or the flu.” But in January, she had begun to feel a slight pressure in her side, as though she had to go to the bathroom. Over the next few days, the pain intensified and she began to hobble. After consulting with doctors and receiving a CT scan, she was diagnosed with a spinal and retroperitoneal schwannoma, a tumor that arose from a nerve in the spine and ballooned outward into her abdomen. Biopsies showed that it was not malignant, but it had grown unchecked, probably for years, and wrapped itself around nervous tissue, blood vessels, and bone.

In hindsight, Ortiz said she thinks this type of tumor runs in her family. Decades earlier, her mother, who was living at her house, had felt dizzy and lightheaded and hurried to the bathroom. A few minutes later, what looked like “this big huge thing the size of a football dropped out of her and splashed in the toilet and blood shot up everywhere.” Her mother hadn’t known about a tumor, but when it broke loose, “I could just hear the blood running out of her, ‘glug, glug, glug.’ ” She was wrapped in thick black rubber and rushed to the hospital by ambulance, but died shortly thereafter. “She knew there was nothing she could do,” Ortiz said. “She was faithful and loyal. So she said a prayer and went to sleep.”

When Ortiz received the schwannoma diagnosis, she was committed to avoiding her mother’s fate, but said that, like her mother, she would never consider a transfusion. She signed herself in to a hospital in Florida that she believed would be sensitive to her beliefs. The doctors there, however, said that surgery would involve too much blood loss and could not be performed safely without transfusion. At a second hospital, also in Florida, Ortiz was once again turned away. “We have to use blood,” she said a doctor told her, “and if you’re not going to take it we can’t do anything here.” Finally, she reached out to Englewood, which, since the nineteen-nineties, has developed a reputation for performing complex neurological, vascular, and orthopedic surgeries, many of which can involve substantial blood loss, without the use of transfusion. Abe Steinberger, a neurosurgeon who has been treating Witnesses for twenty years, agreed to work with Ortiz. “We’ll just have to be meticulous in the dissection of the tumor and make sure we stop the bleeding before it starts,” Steinberger told her, with brisk confidence. Ortiz decided to travel north.

Still, bloodless medicine requires more than surgical skill, as Steinberger himself also stressed. It rests on a myriad of small precautions and coordinated, blood-saving techniques that begin well in advance of surgery. When Ortiz had pre-operative testing done in Florida, on the advice of a nurse who was familiar with Witnesses, she insisted that the phlebotomist use pediatric tubes and draw the minimum amount possible.

In the O.R. at Englewood, Ortiz lay on her stomach, on a large cushion designed to prevent the compressing of veins, as a young anesthesiologist named Margit Kaufman cheerfully and confidently double-checked the tubes around her. Kaufman first rotated through Englewood in 2012, while completing a fellowship in critical-care medicine. The hospital’s culture of respect for patients’ wishes, borne of its work with Jehovah’s Witnesses, drew her in—as did the skills its doctors had cultivated in caring for these patients. The hospital now minimizes the use of transfusion even in those who do not object to the practice, and who, at other institutions, would be likely to receive blood. Kaufman said that it was almost a year before she transfused a single operating-room patient at Englewood, a stark contrast to her experience during training, where she provided the procedure multiple times per month.

On Kaufman’s signal, a nurse anesthetist began to draw blood from Ortiz. It was startling, at first, to see rich, maroon liquid flow out of her body and enter the long thin plastic tubes through which it would travel to a collection bag on the floor. But the plan was to keep this blood in reserve, until the end of the operation (or a moment of crisis) when it could be re-infused. In the meantime, a pale fluid, called hetastarch, flowed into Ortiz’s body, diluting her circulation so that when she bled she would lose fewer red cells. Kaufman had promised never to detach the tubing connecting Ortiz’s body to the blood; it would remain part of a supplementary circuit—in her view, never actually “leaving.” (Many Jehovah’s Witnesses object to transfusions of their own blood if it has been stored externally for a prolonged period.)

When Steinberger made an incision in Ortiz’s back and began to work down to her spine, suctioned blood also flowed into a small device on the floor, called a cell-salvage machine. The blood passed first through a filter, which trapped bits of fat and bone, then entered the reservoir, where a centrifuge spun it to separate out the red blood cells. These were then washed with saline and filtered again, so that they could be returned to the body later on. Typically, the team salvages every possible red cell, even suctioning blood from bits of gauze used at the surgical site, Kaufman told me. “In most O.R.s, they throw all that away.”

Of course, not every case goes according to plan. One older Jehovah’s Witness who underwent surgery at Englewood had severe anemia and died in the I.C.U. when his organs failed, a situation that transfusion might well have averted. “That was very difficult,” said Kaufman, who was directly involved in the case but declined to share other details. “But we had to remind ourselves we were respecting his wishes. Patients have the right to determine their care.” In another case, when Steinberger was operating on a young woman from Louisiana who had a large brain tumor, she began to hemorrhage, and he decided to stop the surgery. He and his colleagues closed her up and waited several weeks, during which time she was treated to build up her red cell count. Then she returned to the O.R. and Steinberger completed the surgery.

By early afternoon, he had disconnected the tumor from Ortiz’s spine, and a second team arrived to work on the portion in her abdomen. “Now if they yank on it, I’m not worried we’ll have a horrendous disaster,” in which her spinal cord would be damaged and might become paralyzed, he said. Operating-room staff turned Ortiz onto her side, and the incoming surgeons positioned themselves on opposite sides of the table and then made a fresh incision. Leaning in, with headlamps nearly touching, they cut through muscle and exposed the bulk of the tumor: a luminous white orb tinged with blood. Eventually, they disentangled it from a phalanx of blood vessels. Lyall Gorenstein, a thoracic surgeon who had been at Englewood for around a year, headed into the doctors’ lounge, visibly relieved. He had performed four or five surgeries on Jehovah’s Witnesses but this had been one of the largest. “It’s very stressful as a surgeon, dealing with a tumor that has the potential for massive bleeding and knowing you don’t have the option of transfusion,” he told me. “It’s like being a trapeze artist with no safety net.”

A few hours later, when Ortiz awoke, she could sit up by herself in a chair. The next day, she was able to stand and take a few steps. The doctors told her she would need to “walk, walk, walk,” which, she joked, is what Jehovah’s Witnesses like to do anyway, going door to door and talking about their faith.

http://www.newyorker.com/news/news-desk/how-jehovahs-witnesses-are-changing-medicine

AUGUST 13, 2015

Should Anyone Be Given a Blood Transfusion?

THE NEW YORKER

BY AMANDA SCHAFFER

This is the second part in a three-part series, “Medicine Without Blood,” about the ways that Jehovah’s Witnesses have changed the way that doctors think about blood transfusion. Read the first and third installments, “How Jehovah’s Witnesses Are Changing Medicine” and “The Ethics of Bloodless Medicine.”

The United States’ full embrace of blood transfusion began during the Second World War, when large-scale blood donation and mobilization became part of the war effort. “Your blood, as a gift, is unlike money, unlike time or work,” one radio broadcast, titled “Women at War,” announced. It was a gift “to an American soldier or sailor, who may live to save all that you count precious in the world.” One Marine Corps correspondent described the arrival of blood at a medical station in the Pacific: “the wine-colored bottles were held aloft above the prone bodies [of wounded men] and the stuff was doing its miraculous work.” It was the “most precious cargo on this island of agony.” Japanese troops had nowhere near the same access to blood, which only heightened its symbolic power. The Germans, too, were hampered by a refusal to collect from non-Aryans, a policy that “eventually frustrated even their own physicians,” according to the journalist Douglas Starr, whose book “Blood: An Epic History of Medicine and Commerce” details this history.

After the war, donated blood became an integral part of Western medicine. Advances in care, including open-heart surgery, artificial kidney replacements, and trauma work “consumed huge amounts of blood,” Starr writes. Doctors also transfused patients to top off their hemoglobin levels following procedures like tonsillectomies, appendectomies, and even childbirth. Yet, in the thrall of wartime transfusion, blood had never been treated like an experimental drug and subjected to rigorous, randomized clinical trials assessing risk and benefit. Its power was intuitive. Doctors observed that patients with anemia seemed to feel better following transfusion. “The patients looked rosy and felt full of energy,” one older doctor told me. No one was thinking yet about adverse effects.

This made it difficult for Jehovah’s Witnesses who developed anemia or needed major surgery. The religion’s governing body had decided that passages in the Bible, which instruct adherents not to consume blood, meant that they should avoid transfusion. The mixing of blood seemed to them a form of existential contamination. Yet most Witnesses still wished to receive medical care. And “in some doctors’ minds, there was confusion,” Zenon Bodnaruk, of Hospital Information Services at the Jehovah’s Witnesses’ world headquarters, in Brooklyn, told me. Some doctors believed that the religious objection to blood transfusion was tantamount to a refusal of care. One frequent scenario involved patients with heart disease who needed coronary-artery bypass grafts or cardiac-valve-replacement surgeries, both of which involved substantial blood loss and were nearly always accompanied by transfusion. Jehovah’s Witnesses were repeatedly turned away by cardiac surgeons or “asked to reconsider their religious position on blood,” Bodnaruk said.

Still, a small number of doctors were willing to accommodate requests for bloodless treatment. In the late nineteen-seventies, Watch Tower leaders decided to cultivate relationships with these physicians. In the late eighties, the governing body approved a large-scale effort to help Witnesses find sympathetic care, according to Bodnaruk. In the early nineties, one of the institutions that Witnesses contacted was Englewood Hospital and Medical Center, in New Jersey, which welcomed them. Aryeh Shander, a voluble, grandfatherly man who was then the chief of anesthesiology at Englewood, became an important advocate for their cause. His empathy for religious minorities was strong, he said, because his mother was a Holocaust survivor and had impressed on him the importance of “always looking out for human rights.” At the same time, he had developed an academic interest in blood transfusion, which he believed, based mainly on intuition, was overused in surgery. There wasn’t any real evidence yet to prove him right or wrong.

From the beginning, the bloodless program at Englewood enjoyed anecdotal success. In small observational studies, the witnesses’ surgical outcomes seemed to match those of other patients undergoing the same procedures. By the late nineteen-nineties, Shander and his team were committed to applying the lessons of bloodless medicine to non-Witness patients. Englewood was not alone in this experience. Numerous bloodless-medicine programs had sprung up around the same time in the United States, thanks to the Jehovah’s Witnesses’ advocacy.

Meanwhile, the prevailing attitudes toward blood had grown more fraught, in the U.S. and elsewhere. Since the late nineteen-sixties, when patients with hemophilia began to use clot-promoting proteins that were derived from large pools of donor blood, they had been vulnerable to infection, especially hepatitis. In the early eighties, however, with the emergence of AIDS, risks soared. Before the development of an H.I.V. screening test for donors, in 1985, almost half of all hemophiliacs became infected with the virus.

Lawrence Tim Goodnough, who is now the director of the transfusion service at Stanford Medical Center, was a fellow in hematology oncology just as the H.I.V. epidemic began. His experience with hemophiliacs, in particular, inspired in him a lifelong interest in reducing patients’ exposure to blood. “I was not coming primarily from a Jehovah’s Witness point of view,” he said. But as bloodless-medicine programs developed, in the late nineteen-eighties and nineties, he found that the clinicians running them made natural bedfellows. Their experience was “key to showing how often you can get patients through complex hospitalizations, surgical and medical, without blood transfusions.”

In 1999, the first strong evidence to validate this perspective emerged. In arandomized controlled trial published in the New England Journal of Medicine, Canadian researchers found that more restrictive blood-transfusion practices could often be just as good for patients—or better. Interestingly, the lead researcher, a critical-care specialist named Paul Hébert, had expected to demonstrate just the opposite. He and his colleagues enrolled more than eight hundred critically ill patients in intensive-care units. These patients were not actively losing blood, but they suffered from anemia, a problem in which the blood lacks sufficient hemoglobin and struggles to transport oxygen through the body. Hébert and his team randomly assigned them to receive red-blood-cell transfusions either on a liberal or restrictive basis. After thirty days, the two groups had equivalent mortality. Among patients who were younger than fifty-five or who had less severe conditions, the probability of death was actually lower for those treated under the more restrictive guidelines.

At first, Hébert said he did not believe the results. But over the years, his work has been recognized as “one of the landmark papers in transfusion medicine,” according to Courtney Hopkins, the Chief Medical Officer of the American Red Cross’s eastern division. Numerous other randomized controlled trials have confirmed his core finding, as well. Researchers have compared restrictive and liberal transfusion strategies in critically ill children. They’ve also studied adults with septic shock, gastrointestinal bleeding, and traumatic brain injury, and those undergoing high-risk hip surgery. These papers have either found no difference between the two groups or have found better outcomes in those receiving less blood. (One exception has been patients with acute coronary events, such as heart attacks, for whom the evidence is mixed and may support more liberal transfusion, Hébert said.) Most physicians conducting this research have not worked in programs for Jehovah’s Witnesses. But the Witness community has taken note. So too have leaders of bloodless-medicine programs, many of whom are passionate advocates for reducing transfusion whenever possible. (The Society for the Advancement of Blood Management, the first national organization dedicated to this goal—founded by Shander, Goodnough, and others—has played a key role in disseminating best practices regarding patients’ blood.)

Hospital administrators have also zeroed in on the emerging evidence, because it allows them to cut costs associated with transfusion. “Maybe it was the great recession or maybe the winds of health reform,” Goodnough said, but since around 2009, an increasing number of hospitals have established programs dedicated to using blood more conservatively. From 2008 to 2011, the last year for which national data are available, transfusion in the U.S. decreased by more than eleven per cent—and, according to the American Red Cross, that trend has continued. Even blood bankers have joined the chorus; their major professional organization in the U.S, the American Association of Blood Banks, now sponsors workshops that teach techniques like boosting red blood cells before surgery, avoiding unnecessary blood draws and recycling blood cells to patients during procedures. “I’m teaching providers to use less of the product we sell,” Dr. Hopkins of the Red Cross said, “but that’s because we want to do what’s best for patients.”

From a medical standpoint, restricting transfusion may be helpful for a range of reasons. When red blood cells are stored, they become more rigid and undergo chemical changes that make them less efficient at carrying oxygen. (And, when doctors know that they won’t be able to transfuse, they may work harder to build up blood-cell counts and avoid squandering cells.) The extent to which transfusion may cause further, low-grade risks is hard to assess, since subtle harms—as well as subtle gains—can easily go unrecognized in patients who are already critically ill. For reasons that are not entirely clear, donor blood can suppress recipients’ immune systems, or it can trigger overactive immune responses, thanks to the waste products the cells secrete. A bag of blood that’s been sitting in storage is “like a dirty fish tank you haven’t cleaned in a month,” Patricia Ford, a hematologist at Pennsylvania Hospital, told me. And of course, while the risk of H.I.V. infection is now extremely low in the developed world, proponents worry about new pathogens.

This isn’t to say that transfusion is useless—just that it’s not nearly as useful as people used to believe. “I firmly believe that transfusions save lives,” Hébert said. “I transfuse in my practice all the time, just a little less than I used to.”

http://www.newyorker.com/news/news-desk/should-anyone-be-given-a-blood-transfusion

AUGUST 14, 2015

The Ethics of Bloodless Medicine

THE NEW YORKER

BY AMANDA SCHAFFER

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.”

http://www.newyorker.com/news/news-desk/the-ethics-of-bloodless-medicine