The talk of the town
December 2011 -- Items appearing in The New Yorker over the past year offer amazingly varied portraits of nursing. They range from John Colapinto's relatively good December 2010 portrait of the powerful Duchenne muscular dystrophy advocate and nurse Pat Furlong ("Mother Courage"), on the one hand, to physician Jerome Groopman's October 2011 article about the NICU ("A Child in Time"), which reflects the writer's physician-dominated vision of health care. A short letter printed in late November in response to Groopman's NICU piece offers a more holistic vision, describing a mother's appreciation of the breastfeeding and kangaroo care initiatives her child received in the NICU. Another notable item is Ian Frazier's fair, if somewhat bemused, April 2011 "Talk of the Town" piece about a Brooklyn event held by Caribbean-American nurses to celebrate the achievements of Mary Seacole ("Two Nurses"). And a full-page University of Phoenix ad in the same issue presents a real nurse as a leading health expert and executive. But business writer Ken Auletta's October 2011 "annals of communication" piece about Jill Abramson's ascendancy to the editorship of The New York Times includes a brief description of the extensive health care Abramson received after a bad vehicle accident that suggests that only physicians played any role. All in all, The New Yorker remains fairly typical of the elite media when it comes to nursing. The magazine is certainly capable of providing its influential readership with helpful and accurate information about the role nurses play in health care, especially in shorter, less prominent items like the "Talk of the Town" piece and the mother's letter in response to Groopman. But it's more likely to ignore or condescend to nursing in "serious" articles about health care or other matters, especially when the magazine relies on physician contributors or experts. We urge the New Yorker's editors to think carefully about whether the work of the magazine's writers reflects the real nature of nursing.
The ends and the means
John Colapinto's piece "Mother Courage" about Duchenne advocate Pat Furlong ran in the magazine's 2010 year-end issue (December 20 and 27). The piece explains that Furlong is "a health educator and a former nurse" whose sons Patrick and Christopher developed Duchenne muscular dystrophy, a "rapid, fatal muscle-wasting disease that affects males almost exclusively." Furlong fought for years to increase attention and research funding for the relatively rare disease, continuing even after both her sons had died. The piece presents Furlong more as a fierce and extraordinarily effective parent activist in the Lorenzo's Oil tradition than a health expert (thus the title "Mother Courage"). Other nurses have had a major impact on health care, but it's hard to imagine a New Yorker piece about any of them as nurses. Still, the Furlong piece does link her success to her nursing background at a few points, and the overall portrait of her as a smart, ruthlessly resourceful health leader (who acts like Nurse Jackie at some points) clearly has value.
The initial description of Furlong as "former nurse" is not great; why is she no longer a nurse but still a health educator? Nurses are health educators, and they do not cease to be nurses just because they no longer practice clinically. We doubt Furlong's husband Tom, referred to here as a "family-practice physician," would be called a "former physician" even if he had stopped practicing. In any case, the article notes that Furlong saw early on that something was going on with her two boys, and she took them to see physicians. Her husband "dismissed her fears." But she persisted. The piece explains:
"As a nurse, Furlong had spent years examining illness. She grew up in Cincinnati . . . and in 1969 she earned a nursing degree from Mount St. Joseph's, a local college. "I'm fascinated by medicine--what we can do and can't do," she told me. In graduate school, at Ohio State, she ran the intensive care unit at the campus hospital. But her experience caring for adult patients was of no help in trying to understand what was wrong with the boys."
It might have been nice to hear a little more about the graduate degree--was it in nursing?--but this passage does convey that Furlong got an undergraduate degree in nursing and that she "ran the intensive care unit." (One quibble--why is it referred to as the "campus hospital" rather than the "university hospital," which we assume it actually was? Campus clinics don't have ICUs.)
Eventually, as symptoms persisted, an orthopedic surgeon recognized Duchenne. A neurologist at Cincinnati Children's Hospital confirmed the diagnosis and laid out the "dire prognosis"--those affected are usually in a wheelchair by their teens, then completely immobile, and finally die of cardiac or respiratory failure, "often before the age of twenty." Since the disease's first description by a French neurologist in 1861, no drug had been developed that affected its "inexorable" course. The neurologist did not stop at telling Furlong there was "no hope and no help" for her sons, but actually attacked her for having had her second son, telling her she should have known because the disease is genetic, so she "could have aborted the second pregnancy," while that son, then 4, was sitting on her lap! (She later learned that she is among the cases in which "the mutation occurs spontaneously.) Furlong, who claims she was generally mild-mannered at the time, grabbed the physician's tie, pulled him to her nose, and said, "If somebody should have been aborted today, you're the one."
The piece notes that the diagnosis divided Furlong and her husband. He, "as a physician, tended to accept the prevailing medical view that nothing could be done." Scientists generally see little reason to specialize in rare diseases like Duchenne, which occurs only "once in every thirty-five hundred live male births." And "as a nurse, Furlong understood that her sons would probably die of Duchenne. Still, she believed that she could somehow save them." Furlong was determined to fight. The piece notes that she is, at sixty-four, a "tall, attractive woman with a dramatic presentation" (meaning her makeup and clothes) who "blends unyielding resolve with self-deprecating humor and a certain sadness." Furlong has been
singularly effective as a parent activist, not only in spurring research into a cure for the disease but in working with doctors and drug companies to improve care. In 2001, she helped lobby Congress to pass legislation that has allocated more than 400 hundred million dollars for research into muscular dystrophy, of which more than a hundred and sixty million has gone to Duchenne research--far outstripping the research money raised for Duchenne by the Muscular Dystrophy Association. Dr. Steve Groft, the director of the Office of Rare Diseases Research at the National Institutes of Health, told me recently that much of the current clinical research into the disease is the result of Furlong's efforts: "She has been the major mover with Duchenne muscular dystrophy--around the world."
This is a great summary of Furlong's role as "parent activist," though it is marred by the predictable phrase "doctors and drug companies." Isn't anyone else involved in Duchenne care, such as nurses like Furlong herself?
Furlong began her quest to help her sons right after their 1984 diagnosis by taking out a $100,000 bank loan, forging her husband's signature on the loan form. (Hello, Nurse Jackie?) Furlong's husband objected, but did not ask for the money back. Furlong then traveled to "medical centers" in the U.S. and Europe, learning about the disease and who the major players were. She found that little was going on, and few physicians and researchers were willing to talk to her because most would "do anything to avoid meeting with distraught mothers." So Furlong would "impersonate a doctor on the phone, then arrive at meetings dressed for the part. 'I would wear something very professional and the highest heels possible,' she said. 'Of course, I'd start crying the minute I sat down with them--so they knew.'" Before long, Furlong persuaded an Indiana researcher to begin a clinical trial and include her sons, using some of the bank money. Another clinical trial using steroids--a treatment with serious side effects--could not guarantee that her sons would not get placebos, so she asked her husband to prescribe steroids. He refused, and she, furious, forged his signature on a prescription, though she did not fill it. Treatments failed to halt her boys' decline, and they were almost completely paralyzed by their early teens.
In 1994, Furlong formed a patient-advocacy group called Parent Project Muscular Dystrophy. Furlong organized an information-sharing meeting for researchers in Ontario, starting with Eric Hoffman, a prominent geneticist at the University of Pittsburgh. But Hoffman initially declined to attend the meeting, telling Furlong in his office that no researcher would attend. Furlong grabbed an issue of TIME magazine she saw with a cover story about French Anderson, a pioneering University of Southern California geneticist. Furlong told Hoffman that Anderson was coming to the meeting. Hoffman looked doubtful. So Furlong flew to California to see Anderson and "installed herself in his waiting room until he emerged."
"I told him the whole story," she says. "I'm in tears: 'You have to do this, I made up a big lie, oh, my gosh--I'm crazy, I'm a liar, but you have to come!' He just said, 'OK.'" Furlong shrugged. "I think he was afraid of me."
Furlong says that the Ontario meeting, which included several of the world's leading experts on Duchenne, "galvanized everyone." The researchers were amazed that the parents were not hysterical and did not expect magic. The parents began raising money, and in 1995, the Duchenne Muscular Dystrophy Research Center, the first of its kind in the world, opened at Pitt.
But also in 1995, the health of Furlong's sons declined, and they died. After Patrick had been admitted to the hospital, and Furlong had stayed with him all night, he told her she should get his father to take over while she went home to shower, "jok[ing] that 'having a doctor around was much better than a nurse.'" When Furlong reached home, her husband called. Patrick had died.
Furlong pushed on, even though few parents "remain committed to fighting Duchenne's after their child's death," according to University of Pennsylvania gene researcher Lee Sweeney, the Parent Project's Senior Scientific Advisor. Furlong was motivated in part by a comment one of her sons had made while very young to the effect that of course she should not just want her sons cured, but all boys with the disease. Furlong began working on Groft at the NIH Office of Rare Diseases Research, persistently asking what was being done: "I am, by nature, a pest." But Groft says that Furlong's unusual knowledge of the disease also made her persuasive. "With her training in nursing, she had a very good understanding of diseases and the needs of patients and families, and, as a mother of patients, she knew very well what her needs were." Groft's own tiny office could not help Furlong much, so she met with others at NIH, and after years of lobbying, in 2000 managed to get NIH to convene a two-day "workshop" for researchers in the disease.
Still, that was not going to be enough, so the Parent Project hired a DC lobbyist in putting together a bill that would compel NIH to fund a number of muscular dystrophy research centers, including two for Duchenne. In early 2001, there was a Senate hearing with the NIH director. The gallery was filled with muscular dystrophy patients and their families. Furlong testified, noting that Duchenne gets only one one-thousandth of the NIH budget, and offering a powerful anecdote from years earlier in which, during an argument with her eight-year-old son, he asked her to imagine that he was "in a midlife crisis." Furlong noted: "In fact, he was."
In December 2001, the Muscular Dystrophy CARE Act became law. Sweeney notes that this "changed the landscape entirely," with millions of dollars for research motivating researchers to focus on Duchenne. In the following decade, the number of trials and studies vastly increased, and the Parent Project now has an annual budget of $5 million and affiliates throughout Europe. It also invests small amounts in research directly, often choosing companies that need startup capital, and the piece discusses some specific drug research projects on which Furlong and Sweeney have focused, particularly the drug ataluren. The piece also describes Furlong's longstanding efforts to persuade Cincinnati Children's Hospital, where her sons got their diagnosis, to establish a multidisciplinary Duchenne care and treatment center. The article reports: "Thanks in part to Furlong's efforts, which included fundraising for the hospital, Cincinnati Children's is now the leading clinical treatment center for Duchenne in the country."
The piece says that "doctors who attend Furlong's conferences often report a kind of conversion experience." One of these is Linda Cripe, a pediatric cardiologist at Cincinnati Children's who in 2008 played a key role in bringing about one of the first heart transplants for a Duchenne child. The piece relates some of Furlong's own interactions with this 17-year-old boy and his father during a recent follow-up visit to the Cincinnati hospital. Furlong discusses treatment options with the father, dispensing what she calls "therapeutic doses of hope." The article notes that the transplant recipient would almost certainly have died but for Cripe's argument that he should get a heart and Furlong's long effort to "reform" Cincinnati Children's. The recipient tells Furlong she's "like an angel." She "scoff[s]" and, chuckling, asks him to tell her husband. The piece says that Furlong and her husband have "repaired their relationship," though she says that her actions since the Duchenne diagnosis remain "an open wound."
The piece closes with quotes from Furlong about her long-term goals, which seem to center on efforts to "buy time" for kids with Duchenne. She says: "It's about looking at the landscape and seeing where you can play in this chess match, see how you can maximize the impact on research, see how you can apply that directly and quickly to the kids."
On the whole, this is a great portrait of Furlong as a clever, ruthless, and stunningly effective patient advocate, and it does link her work to some extent to her nursing expertise. Goff explains that her nursing background made her especially persuasive in lobbying NIH, and we can assume that was the case in her efforts with other physicians and legislators as well. We also liked how Furlong deflected the "angel" comment with a reference to her husband that made clear she is not at all an angel, but a real human who might not always be easy to get along with. Indeed, the piece makes clear that she is not just human but someone who does not shrink from legal or ethical boundaries; readers may believe that the ends do or do not justify these means, but in any case, her actions hardly reinforce any nursing stereotype. One curious thing is that the piece does not give a clear sense of what progress has been made on Duchenne treatment and care since Furlong's efforts began. But we suppose that isn't really the main subject of the article.
On the other hand, the main thing is clearly that Furlong is a strong mother figure. We won't say that reinforces the maternal image of nursing, because Furlong is really pretty far from that stereotype, but it is notable that apart from the descriptions of Furlong's actions and background, the profession is largely absent from the piece. Hasn't Furlong ever discussed Duchenne with the nurses who care for patients? Haven't her efforts to improve care had any impact on the nursing of these patients? What do nurses do at Cincinnati Children's, the "leading" treatment center for Duchenne? We hear plenty about research to find a drug that will cure the disease, but there is little about work to improve the wellbeing of patients in other ways, such as physical and social therapies. So although the central figure in the article is a nurse, the piece still seems to reflect a somewhat physician-focused view of health care; it's all about cures and drugs, with no quote from any other nurse and no discussion of the nursing care of Duchenne patients.
The nursing diaspora
Ian Frazier's short "Talk of the Town" item, which appeared in the April 25, 2011 issue, was headlined "Bedside Manner: Two Nurses." The two nurses in question are Mary Seacole and Florence Nightingale.
But the piece is really about Seacole, and a recent Women's History Month tribute to her held at St. Francis College in Brooklyn by the Society for the Advancement of the Caribbean Diaspora. Nightingale is mainly there to set the stage and act as a kind of foil. The item begins by telling us that Nightingale "strongly disapproved" of Seacole, though "that did not stop either of them." Nightingale "invented the profession of nursing and became famous for her work on the battlefields of the Crimean War." Seacole grew up in Jamaica, had a Scottish father, "knew native remedies learned from her Jamaican mother," "travelled widely, and offered to nurse soldiers in the Crimean War with Nightingale." "Turned down," she went anyway, "tended the wounded on both sides, constructed a hotel-clinic from scrap, and handed out wine and hot tea to the soldiers. They loved her. Nightingale wished she would go elsewhere." The piece never makes clear exactly what problem Nightingale had with Seacole, and readers are left to guess. What was it? Racism? Disapproval of traditional remedies? Wine and tea not helpful?
Moving on to specifics of the Brooklyn event, the item notes that Seacole is well-known to Jamaican nurses, and Society president Minna Hamilton LaFortune, the event MC, is quoted as saying that Seacole is "someone we as Caribbean women model ourselves on." The remainder of the piece consists of "bullet points of the evening." These provide random bits of information about Seacole and nursing. We learn that Seacole published a bestselling 1857 autobiography describing her foreign adventures, that later in life she became "a masseuse to Alexandra, Princess of Wales," and that there "is, or soon will be, a statue" of Seacole in London.
But there is actually more on nursing generally. Claudette Powell, "R.N., M.A.," the event moderator and a leader of Caribbean-American nurses' groups, said that another purpose of the event was to "recognize the noble profession of nursing." Donareen Denny, "R.N., a nurse educator at SUNY Downstate Medical Center," spoke about "the higher risk of stroke among black women." Frazier recounts a few basic bits of information from Denny and others in a deadpan way that may or may not be mocking the speakers for giving information that the writer thinks is too basic, off-point, or just a little odd. For instance, Denny evidently gave advice for recognizing stroke and getting to the hospital within an hour to limit the damage. Frazier notes: "That hour is sometimes called the golden hour." Oh. At the event, "audience participation was encouraged," and we hear that 83-year-old "Miss Ruby" swore by her "insecticide-free all-natural diet." Another woman complained of the smell of cigarette smoke on the clothing of health aides, but Arlene George, "R.N.," reportedly said that "some of the most competent nurses in the world might happen to be smokers, so [the complainer] should keep an open mind."
The longest and most helpful bullet is devoted to "Dr. Pamella Hosang, the unofficial dean of Caribbean nurses in New York." "Dr. Hosang" "jumped" into nursing as an 18-year-old in Jamaica and she "nursed and taught nursing" for 52 years before retiring.
She began as a registered nurse, kept studying, and became a community health nurse, a nurse researcher, a mid-wife, and a public-health nurse. She got her Ed.D. in nursing from Columbia.
Hosang spoke on "Opportunities in Nursing." Some of Frazier's descriptions again veer into an odd deadpan voice. We hear that there are many opportunities, "because nurses are everywhere." It's not just hospitals and "doctors' offices," but also industry, schools, and "informatics (computer sciences)." "There are nurses at airports." And "'nothing is more exciting than being a nurse,' [Hosang] added, to nods of approval." Hosang admitted that while she admired Seacole, Nightingale was her "lifelong hero" because she had "raised nurses from their previous lowly status as domestic servants, or even prostitutes, and made nursing a great calling."
On the whole, the item seems bemused about these proceedings, and possibly about those kooky little nurses generally. Who knows what they'll get up to next?! And it's not clear to us that Seacole is rightly considered a nurse at all; some of the information about her use of and experimentation with traditional medicines suggests that her work was more like that of a physician or a traditional healer. But on balance the piece provides some helpful bullets of information that might just pierce the public's armor of stereotypes about nursing. The information about Nightingale won't add much to most people's understanding; the item doesn't mention her other public health achievements. But the statements that nurses can be researchers and that they work in informatics are helpful, and to some extent, so is the portrait of nurses delivering advice about stroke and health diets, though again, the item presents those parts ambiguously. But the piece is surprisingly good in including nursing credentials, from the "R.N."s to the advanced degrees; there are doctorates in nursing!
Tomorrow's health care leaders
Later in the same (April 25) issue, a surprisingly helpful full-page ad for the University of Phoenix appears. The ad shows a woman in a business suit looking upward and the headline: "Offering a faculty of industry professionals to inspire tomorrow's health care leaders." This woman is identified at the bottom of the page as "Diane Wilson, MSN/MHA, College of Nursing, Chief Operating Officer, Community Tissue Services." The block of text in the upper right explains the University's "cutting-edge," "team-based" health care management curriculum:
Because most of our instructors and many of our students are experts in their fields, they can share industry insights gained through years of experience. It's an approach to education where accomplished students like Diane Wilson, already a CEO before enrolling, can debate new ideas on how to build a more reliable, efficient and sustainable health care system for all of us.
There's a lot of good stuff here, though it may require more attention than many readers will pay to a conventional print advertisement. Wilson is not one of the "faculty of industry professionals." But she is an "accomplished student" who, since "already a CEO," is presumably an "expert" in her field and, as one of "tomorrow's health care leaders," is able to "debate new ideas" and help build the health care system of the future (we realize some health executives' visions of the future don't seem to include much direct care nursing). The text at the bottom of the ad identifies Wilson as a COO of "Community Tissue Services," which sounds impressive, though the ad does not explain what it is. In fact, it's a major Ohio-based non-profit tissue bank. ("College of Nursing" presumably refers to the relevant division of the University of Phoenix). We also like the ad's inclusion of Wilson's degree, which should at least convey that she has or is getting a joint masters degree, though we're not sure how many readers will know what "MSN/MHA" is. Maybe those with an interest in the health care programs described in the ad will know. And at least the joint degree is there; Wilson's own employer, the tissue bank, fails to even identify its COO as a nurse in its online "fact sheet," though the CEO and "medical director" listed with her get their "M.D."s listed. In any case, although the University of Phoenix ad doesn't necessarily say much about nurses generally, it does present nurses as people who at least can become expert health leaders.
NICU nurses: Swaddling, handing, sitting, walking, placing candles, helping, and letting
The October 24, 2011 issue includes "A Child in Time: New frontiers in treating premature babies," a "medical dispatch" by regular New Yorker contributor and Harvard physician Jerome Groopman. The piece focuses on decisions to treat or not treat NICU patients. Groopman presents a typically physician-centric vision of health care, with physician work dominant and only physicians consulted as experts (along with one social worker, briefly). No nurses are even named. This is especially striking in the NICU context, where highly skilled nurses play a leading role. Granted, one key focus here is physician research, but nurses also perform research on the care of premature babies and they spend much more time providing skilled care to those babies than anyone else does. Yet when Groopman looks at the NICU staff, he seems to see only physicians. As a result, that's what New Yorker readers see.
Groopman describes the NICU at his hospital, Boston's Beth Israel Deaconess Medical Center, with its photos of those babies who survived and prospered, and the names of those who did not. Groopman's main guide here and throughout the article is "senior neonatologist" Camilia Martin, who co-wrote a text on NICU treatments. Groopman starts describing those treatments:
At my hospital, four medical professionals receive each baby: an attending neonatologist, a fellow in training, a respiratory therapist, and a specialized nurse.
If that ranking suggests that Groopman will involve other NICU health clinicians in his discussion, think again; his article consults only the senior neonatologists. And note not only the dead-last placement of the nurse, but the description "specialized nurse." "Specialized"? In what? Are they neonatal intensive care nurses? Or do they just "specialize" in handing babies to parents? (Stay tuned.) We suppose the general designation "medical professionals" is all right, though the non-physicians are better described as "health professionals" rather than with a term that implies they are just a part of "medicine," i.e., what physicians practice. Yet this passage is probably the closest the piece comes to suggesting that NICU nurses have any real skills.
The article moves on to describe what the babies typically experience, offering a series of statements about things that are mostly done by NICU nurses. Yet each of those statements is presented in the passive tense, which wipes out the nursing role and implies, in the context of this article, that physicians are essentially responsible for them all. So an infant "is moved" to the NICU, fluid and debris "are suctioned" from a baby's mouth, a mask "is fitted" over the baby's mouth, and a replacement surfactant "is percolated" into the baby's lungs. Granted, physicians do or play a role in the final action described. But obviously there is no chance their role will be lost here. Indeed, even in this passage, we soon hear that "when the doctors cut the umbilical cord, they thread a thin catheter . . . into the umbilical vein." And a long paragraph about the high-tech incubators the hospital uses is given entirely to Martin, as if she would know more about them than the nurses who actually use them 24/7.
The piece describes the baby President John Kennedy and Jackie Kennedy lost in 1963, after the child was born at 32 weeks. Martin says that virtually all babies born that late survive now. Groopman attributes the much better survival rate today "in part" to the discovery by Harvard pediatrician Mary Ellen Avery that premature babies need to be given surfactant, the lack of which causes the air sacs in their lungs to collapse. When this finding was finally embraced, in the 1980s, premature babies' lung function improved greatly, but they still faced many other challenges, leading Groopman to make these remarkable assertions:
Until recently, neonatal care involved little more than warm blankets and supplemental oxygen. Today, the technologies of the NICU save increasing numbers of infants whose lungs, brain, gastrointestinal tract, skin, and immune system are not ready for life outside the womb.
So apparently, until "recently" the nurses who have long provided the vast majority of NICU care were basically handing out blankets and checking the oxygen. That, of course, is incorrect; nurses have treated NICU babies with cutting-edge technology well beyond blankets and oxygen since at least the 1980s. But today, according to Groopman, advanced "technologies" are saving babies by themselves, which is funny, because we thought it was the nurses who ran most NICU technology, about which physicians often have little clue.
The main subject of the piece is how "families and medical professionals" "decide whether to treat" a premature infant at delivery and during months in the NICU. Groopman discusses at length the appropriate ways to make these treatment determinations, including the traditional use of gestational age and a more recently developed Web-based algorithmic calculator that takes other factors into account as well. These important determinations are very much about quality of life, so you might think that it would require consulting the health professionals with a holistic focus who spend more time with the actual patients than anyone else. But apparently not. The discussion does, however, include quotes from three additional physician researchers.
The piece describes a couple who had premature triplets at Beth Israel in 2004 following an IVF procedure. Martin was "the attending neonatologist on call." Much of what happened to the first baby is described in the passive voice (she "required a high-frequency oscillatory ventilation machine"; "antibiotics were infused"), which again hides nursing expertise. Yet "Martin began to press oxygen into the baby using a hand bag, which is a bellows apparatus." Martin must have been responsible for all the other stuff, too, or else, as we've seen, the technology ran itself. We hear about the discussions between Martin and the parents about how far to go. After the sad decision was made to remove supporting technology and the baby was near death, "[a] nurse in the NICU swaddled the baby and handed her to" the mother. Perhaps the nurse had specialized training in swaddling.
Groopman moves on to consult "Dr. Stella Kourembanas," "the chief of the Harvard Division of Newborn Medicine at Children's Hospital Boston" who studies how to improve lung function in premature infants, about how hard it is to predict how such babies will develop. The piece describes research by "Dr. Saroj Saigal," a Canadian physician who found that those who had been born prematurely reported a high quality of later life. But Groopman notes that the "uncertainties" can lead to a "rift between patients and caregivers," describing a lawsuit in which parents sued a hospital for keeping their severely disabled baby alive--requiring a potentially long lifetime of home care by the parents. The article includes a number of quotes from Kourembanas about these difficult decisions. All of them assume that only families and physicians are involved. Kourembanas tells Groopman that "senior neonatologists may disagree about intensive treatments"--that is, treatments managed primarily by nurses.
In one surprising paragraph, Groopman writes that Sheleagh Somers-Alsop, "the senior clinical social worker in the NICU" at the hospital where Groopman practices, "works with families, physicians, and nurses." She describes a "pendulum" that swings back and forth between the old authoritarian model in which physicians simply delivered "verdicts" about stopping care and the more recent approach of giving families more say. The social worker says that parents should not be expected to make the decisions on their own and she stresses that it's natural for parents to feel some doubts and ambivalence about the decision afterwards. We can't say if Somers-Alsop gave Groopman much indication of the roles that social workers, nurses, or other non-physicians play in the NICU; we can say there's virtually none of that in the piece.
Then it's back to the physicians and their research. Camilia Martin and gastroenterologist Steven Freedman recently found that premature babies suffer problems because of an imbalance of lipids, and Martin is working on "cocktails" of fats to more accurately reflect what is given by the pregnant mother. There's no discussion of whether it might help to increase breastfeeding, which is a remarkably good approximation of what is given by the pregnant mother, though it can't really be presented as a high-tech physician treatment, as "cocktails" can. Groopman also addresses the economics of the NICU, consulting John Zupancic, a neonatologist and "expert in health-care economics" who argues that, though the NICU is very expensive, it can be a "good investment" to the extent surviving babies can contribute to society for decades afterwards.
Groopman ends the piece with a description of his NICU's annual memorial service. As Groopman describes it, "nurses in scrubs sat with families that had lost infants," and, as the names of infants were read, "the NICU nurses who had cared for the baby walked with the family members to the memorial tree and placed a small candle beneath it." Although Groopman apparently could not fail to notice these nurses, he can and does exclude them from comment or even being named. Instead, we hear about the roles of a named minister and a named Jewish chaplain in the service, and then we get an extended passage with quotes from a teacher named Maria whose son died in the NICU in 2003. We learn that "at each point in [the infant's] care, the doctors and nurses consulted with Maria and her husband." One day, Maria notes, "I called in the morning, and his nurse said, 'You know, he just doesn't look right today.'" The child was dying. The parents rushed to the hospital, and the "nurses were really great about helping us. They let us wash him and dress him."
It's good that nurses are recognized as playing some role in this final part of the piece, and not just because a parent noticed them; even Groopman did, briefly. However, that role will clearly strike readers as unskilled supportive care. It's all sitting, walking, placing candles, helping, and letting. The two arguable exceptions--the consulting and the statement that the dying child didn't "look right"--are too vague to make much difference. And the "look right" statement is a great example of how nurses have been trained to undermine themselves, providing their expert opinions in a way that masks their own knowledge and skill. And of course, since the piece cites no nurse as an expert, the portrait of nurses as low-skilled helpers is complete.
A revealing coda to the Groopman article came in the form of one of the many letters the New Yorker printed in response, in the November 21, 2011 issue. The first letter, from Francine Hochberg of Washington, DC, draws a contrast between the "scientific advances in treating premature babies" that Groopman describes and the "emphasis on holistic care" that impressed Hochberg during her premature daughter's experience in the NICU.
In the NICU, amid all the twenty-first century technologies, I was encouraged by physicians and nurses to pump breast milk. Less than a week after her birth, my daughter was consuming my milk by tube, and at eight weeks old she began trying to breastfeed. The NICU staff also urged my husband and me to do "kangaroo care"--we held our daughter to our bare chests, which helped regulate her temperature and her heart rate, and gave us much need physical contact with our fragile little girl. Our daughter was extremely fortunate and simply needed a quiet, warm, controlled environment in which to grow. The NICU provided that as well as a skilled and supportive staff; we are especially grateful for the humanity that they shared with us.
Here again, it's a NICU mother who notices the nurses; indeed, in some ways she seems to understand the NICU better than Groopman does. Yet her letter is still inadequate. The two main elements of the NICU that she describes, breastfeeding and kangaroo care, are not just nice, comforting things to do. They are state of the art measures that likely played a key role in saving her daughter's life and that have, not coincidentally, been championed primarily by expert nurses. And nurses do not just advocate for these critical measures, but nurse scientists have played a leading role in research showing their value. So while we thank the writer for recognizing nurses and nursing initiatives, even this letter greatly understates the nursing role.
Times not changing enough
In the same October 2011 issue as Groopman's NICU article, business writer Ken Auletta has an "annals of communication" piece titled "Changing Times: Jill Abramson takes charge of the Gray Lady." The article describes Abramson's recent ascendancy to the editorship of the New York Times. She is the paper's first female editor. One anecdote, included to demonstrate Abramson's resiliency, is about injuries she suffered after a truck knocked her down and rolled over her in the street, crushing her foot, snapping her femur, breaking her pelvis, and causing "extensive internal injuries." Here is Auletta's description of the health care Abramson got:
An ambulance rushed her to Bellevue Hospital's trauma center, where a doctor said that if the rear wheel had struck her thigh just two inches higher she'd have been killed. Surgeons administered blood transfusions, inserted a titanium rod in her leg, and told her that she needed to spend six weeks in bed. Many months of painkillers, excruciating rehab, and physical therapy followed, as she progressed from wheelchair to crutches to cane. Her oldest friend, Jim Lax, who is now a physician, said that she experienced a kind of "post-traumatic stress," including bouts of anxiety and depression.
This passage is a little tour de force of damaging physician-centrism. Note the lack of nurses and physical therapists, even though they surely provided the vast majority of the skilled health care here. And how only physicians are consulted. And that the surgeons supposedly "administered" the blood transfusions; nurses certainly did that. And that when physicians are not presented as doing the work of others, the work is described passively; no one conducted the physical therapy, it just "followed." Abramson spent six weeks in bed, apparently without any professional company except the painkillers. We guess that since the surgeons' work was basically done at that point, only the patient's work remained. In reality, of course, nurses provide hundreds of hours of skilled, life-saving care to patients with severe injuries like these.
The New Yorker is not closed to the idea that nurses might have something more than hand-holding to offer patients and society. But to provide a fair picture of modern health care, the magazine will have to overcome the still-dominant assumption that physicians are everything.
Send the authors of these articles your thoughts. Here's how:
John Colapinto for his article "Mother Courage" about Duchenne advocate nurse Pat Furlong at firstname.lastname@example.org
Jerome Groopman about his physician-centric NICU piece at email@example.com
Ian Frazier for his "Talk of the Town" piece "Two Nurses" at firstname.lastname@example.org
University of Phoenix for its ad about Diane Wilson at email@example.com
Ken Auletta for his annals of communication piece about Jill Abramson's bad vehicle accident that suggests that only physicians played any role at firstname.lastname@example.org
Thank you! Please let us know if any of the authors reply to your letters.