The Change Agent

“I didn’t come into nursing to feel like I’m torturing people to death,” Aimee Milliken thought to herself. 

It was 2009. Milliken, twenty-two at the time and just graduated from college, was working at Concord Hospital, in New Hampshire, and caring for an elderly woman whose condition was dire. “She wasn’t interactive anymore,” recalled Milliken, now an associate professor of the practice at BC’s Connell School of Nursing. “She’d been in the intensive care unit for a long time, and she was not making progress. And now she was on a ventilator.” The patient was suffering from the condition anasarca, or body-wide swelling, and “any little puncture wound would just seep as I gave her a bed bath.”

The woman’s family had decided, earlier that day, to keep the patient plugged into life support, and this disturbed Milliken. “She was unable to give words to her pain,” the nurse remembered, “and I worried that we were not doing our best by her in terms of her dignity.” Milliken asked herself, Why is the family doing this? And she had no real answers, in part because she was working at night and had little interaction with the patient’s family.

Milliken just kept working by the woman’s bedside. She didn’t yet know how to identify it, but she was experiencing a problem that plagues many nurses. It’s called moral distress. That’s a term that the ethicist Andrew Jameton minted in 1984, thinking of nurses. Milliken has since refined the concept. Moral distress, she wrote in one journal article, is the anguished feeling nurses get when they try to “do the right thing for patients under conditions of ambiguity or when obstructions occur.”

At thirty-five, Milliken is already one of the nation’s top experts on moral distress—and, more generally, on nursing ethics. She harbors a nuanced, authoritative understanding of what it’s like to be a nurse in a system where doctors’ voices get priority and where all the problems that our society delivers to the medical system—racism, social inequity, limited resources—can come crashing down on each life-or-death decision. She learned hard lessons as she tended to patients and, later, at BC, where she earned her PhD in nursing in 2017. When Covid struck, she was at Boston’s Brigham and Women’s Hospital, serving as the executive director of the Ethics Service. Now, in the wake of the pandemic, which crowded hospitals and caused such havoc in medicine that roughly 30 percent of all nurses left the profession, her essential message—that nurses need training on ethical matters and a say in ethical decisions—is in high demand. 

This spring, Milliken was the keynote speaker at two medical conferences, one hosted by Duquesne University, the other by Dartmouth-Hitchcock, a leading medical provider in northern New England. With her fellow BC nursing professor Pamela Grace, she published Clinical Ethics Handbook for Nurses last year. As Grace sees it, Milliken is helping drive “a growing trend which sees nurses’ voices being heard more, especially as it relates to ethics. They have something to say that hasn’t always been listened to: They get to hear patients’ stories and see what’s going on with families.”

Milliken is that rare scholar who’s at once deeply familiar with the ethical theory of Immanuel Kant and with how to change the sheets on a hospital bed while barely disturbing the patient lying in it. Nancy Berlinger, a researcher at The Hastings Center, a New York–based bioethics think tank, calls her a “rock star,” explaining, “There’s nobody who’s better at blending the practical and the theoretical.” In 2020, when The Hastings Center was tasked with shaping “ethical frameworks” tailored for the response to Covid, Berlinger enlisted Milliken’s help. “She can tell me about reality,” Berlinger said. “She really understands the rhythms of a nurse’s work. She knows that nurses aren’t just robots or algorithms, and she’s very attuned to the fact that you can have a wonderful plan that just doesn’t work in practice.”

Connell School of Nursing Dean Katherine Gregory, who is the former associate chief nursing officer at the Brigham, worked closely with Milliken at the hospital and sees her as keenly attuned to the political dynamics framing today’s nursing world. “People died in the Covid pandemic not because of their genetic code,” Gregory said, “but because of their zip code. They died because they were marginalized. Aimee understands that, and she understands that none of the complex problems hospitals now grapple with can be placed in a silo. They need to be addressed by interdisciplinary teams, and she’s skilled and comfortable working with such teams, with both nurses and doctors.”

It was for these reasons, among others, that Gregory recruited Milliken to BC. As Gregory sees it, the nurse ethicist was the perfect hire in a fraught post-pandemic world awash in questions about understaffed hospitals and unequal access to health care. “At a Jesuit institution like BC,” Gregory said, “ethics is the cornerstone of the education we provide.”

On a cold April afternoon, thirty-five nurse practitioners in training, all graduate students in the Connell School, met for a Nursing Ethics class that Milliken was teaching with Fr. Richard Ross, S.J. At the lectern, Milliken cogitated aloud on how health care authorities might fairly distribute limited medical resources such as respirators and personal protective equipment. “I could do that by a lottery, by putting everyone’s name in a hat,” she said. “Or can we say, ‘Let’s look at who’s going to live the longest?’ Can we look at things like kidney function and at whether people have hypoglycemia and diabetes?”

Deirdre Callahan, a student working as a registered nurse, had concerns about the latter approach. “That ignores historical inequities,” she said, “like the racism that has impacted the health of Black people in America.”

Eventually, Milliken noted that sometimes medical decision makers address Callahan’s concerns by invoking an “area deprivation index” that ranks census blocks based on socioeconomic conditions. “If your neighborhood scores highly for deprivation,” she said, “you may actually get a bump up. You may get more access to resources.”

When I talked to Callahan after class, she said, “I like the way Aimee points out how we can act as advocates. If nurses can find ways to make changes, I think that would reduce their frustration.” But, Callahan added, “Advocacy won’t fix everything. We also need to bring new nurses into the profession.”

It’s true that hospital staffing shortages will likely soon worsen: A 2022 survey found that up to 47 percent of all US health care workers plan to leave their positions by 2025. And Milliken, in her neat, uncluttered Maloney Hall office, explained how Covid has brought her profession to such a perilous spot. “For a long time,” she said, her tone reflective and laced with care, “there was this sense of, ‘Look, let’s just get to the vaccine and everything will be okay.’ Then, when we had the vaccine, there was quickly a shift to ‘Why aren’t things back to normal yet?’” The vaccine didn’t immediately return us to normal, in part, because early in the pandemic, people couldn’t get the treatment they needed for longer-term illnesses—cardiac disease, for example, and cancer. With the vaccines widely disseminated, those patients began filtering into hospitals for the delayed care they required—along with people who’d decided against vaccinating and were, as a result, suffering severe Covid symptoms.

When she was eight years old and cavorting about on her family’s deck in Madbury, New Hampshire, Aimee Milliken fell six feet down onto concrete, breaking her arm so badly that her ulna stuck through the skin. As she spent the next three weeks at nearby Wentworth-Douglass Hospital, the broken bone grew infected. Her muscles swelled until they were painfully constricted by the surrounding fascia, and at one point, when she was all alone in her room, a doctor came in and told her that he might need to amputate. 

That first deep dive into the medical world wasn’t just traumatic. It was fascinating for Milliken, and she engaged her doctors in nuanced conversations about the gentamicin beads they implanted into her arm for antibiotic purposes. A fascial surgery helped save the limb, and when she returned home, her mother, Barb Milliken, recalled, “She’d watch surgeries on the Discovery Channel while eating and not feel like it was disgusting. When she went to a dinner at school in sixth grade and there was a salmon laid out, she was really intrigued by the eyeballs.”

Still, Milliken, whose left arm still bears a long, stitched scar from her fasciotomy, said it wasn’t the surgeons who most impacted her. “It was the nurses at the hospital who were my buddies,” she explained. “They supported me and cared for me. They let my mom sleep in the room’s second bed the whole time I was there, and when I asked them to burn my toast—I liked it extra crispy—they just started giving me burnt toast every morning.”

Milliken went on to study nursing at the University of New Hampshire. Upon graduation, she started at the ICU in Concord and found herself facing a dynamic that still prevails: Even as patients languished on life support, their prospects for survival bleak, their families insisted on keeping them  alive. Today, Milliken understands that this was happening because Americans often lack ethical vocabulary. “We don’t do a good job talking about death in this country,” she said. “It’s hard for us to say, ‘Hey, Dad, what should I do if something catastrophic happens?’ Because he’ll probably just say, ‘Let’s just cross that bridge when we get there.’” Even when patients prepare advanced directives, the documents often mean little. “They might not discuss them,” Milliken explained, “so their family doesn’t know the context behind the decisions. And so there’s this weight of responsibility that falls onto the surrogate decision makers. No one can ever feel like they gave up on dad.” 

Working in the ICU, Milliken felt so alienated from the values of compassionate care she’d been taught as an undergrad that she decided that nursing was in need of structural change. So in 2011 she began pursuing a master’s in nurse management at Yale. While in New Haven, she took a class on ethics. “A light bulb went off,” she said. “It was like, ‘Oh my God, they’re talking about the sort of cases that bothered me and there’s language for it.’ So I decided at that point to focus on ethics.” 

At Yale, Milliken helped the Hastings Center shape guidelines on end-of-life care. Then, when she came to Boston College to pursue a PhD, she wrote her dissertation on nurses’ ethical awareness, working with Larry Ludlow, a professor in the Lynch School of Education and Human Development, to develop an Ethical Awareness Scale. This tool assesses nurses’ readiness by asking them thirty-three questions, such as whether restraining an intubated patient “always has” or “may have ethical implications.”  

In Boston, Milliken worked in local hospitals, often on ethically fraught cases. In 2013, when two terrorists planted two homemade bombs at the finish line of the Boston Marathon, killing three people and injuring hundreds, Milliken was the charge nurse overseeing two colleagues tasked with caring for the one surviving bomber—nineteen-year-old Dzhokhar Tsarnaev, who arrived at Beth Israel Deaconess Medical Center with severe wounds sustained during a shootout with the authorities. He stayed there for a week, watched over day and night by police, as his victims were treated in a separate unit at the hospital. “Talk about moral distress,” Milliken said. “The whole city had been impacted and suddenly we became the epicenter of the fallout. We felt at once appalled by the behavior of our patient and committed to providing him with excellent care. There was an overwhelming sense of sadness to the moment, but also a pride that we were able to come together as a hospital and a city to create an environment where he could get the care he needed and the authorities could be there as they needed to be there to move him on to the next step in the process.”

Milliken is always striving toward the order and civility that prevailed in Boston after those 2013 bombs went off. She doesn’t acquiesce to chaos. Rather, she tries to understand it and to come up with a pragmatic course of action. In one 2022 paper, she meditates on the “increasing frustration and anger” nurses were feeling toward unvaccinated patients. Then, even as she empathizes with her weary colleagues, she insists that they must transcend the “culture of blame” and “give attention to the full range of human experiences and…respond with an attitude of respect toward both those who hold to anti-vax preferences…and those who are vaccine hesitant.” Because nurses working in the Covid-19 ICU “may not understand the potential impacts of social determinants on vaccine decision-making,” she continues, a proactive colleague “could help them ‘connect the dots’ between issues such as public education, housing, urban development, and vaccination tendencies.”

Milliken believes that today’s nurses can only feel agency if they take action—if, that is, they see caring as not just a bedside act but a fight to remake “the context in which care is provided,” she said. “Even if you’re working sixty hours a week, you can follow the news and vote and maybe participate in research and scholarship. Pick research questions that impact your patients and your working environment.” From there, she summed up her role educating and training nurses at BC: “We have to craft clinicians who get involved,” she said, “and we need to give them a really solid foundation in ethics, so that they can all be ambassadors with a toolkit of ethical knowledge.”

In some ways, the future of nursing boils down to numbers. To stay viable, the medical system needs more nurses, Milliken told me during our final meeting, which happened over Zoom as she hunkered down at home in a brightly painted room scattered with toys. “You can see my son’s fire truck behind me,” she said, beaming. “He’s two-and-a-half now. He knows everything about trucks.”

Transitioning, Milliken explained that she’s been working in hospitals since she was a sophomore in college. “And we’ve always been talking about an impending nursing shortage,” she said. “Then Covid became this accelerant where the ‘impending’ shortage turned into an actual acute, right-now problem. And so I think a lot of people are trying to think of creative solutions. Meanwhile, Covid has drawn a lot of people to the helping professions. If we change the profession quickly enough, we will be able to retain the newcomers.”

Change will come, Milliken is convinced, if nurses are given a voice—and also if the rest of us proffer a little care to these caretakers. “Nurses are feeling burnt out,” she said. “They’re feeling drained, and people are doing a lot of work around resilience. They’re saying, ‘If you’ve experienced something stressful, go do yoga. Download Headspace [a meditation app] and do some mindfulness work.’ My challenge with those sorts of interventions is that they’re very individually focused.”

The problem, Milliken said, is that “moral distress is really a system-level problem, which interventions targeted at the individual are ineffective at addressing.” So, in March, Milliken took a more systemic approach, co-organizing a daylong workshop at BC entitled “Using the Liberal Arts to Explore and Heal from Moral Distress.” The twenty or so participants discussed what causes moral distress and how to mitigate it, not only in nursing but in other caring fields such as social work, theology, and teaching. Then the group took in performances from both a modern dance troupe and a BC a capella ensemble. The intent, Milliken explained, was to “provide a multi-modal immersive experience where, in community, people could work through the feelings and emotions.”

The workshop was just part of Milliken’s larger quest to build a “moral community” for nurses. “We need to create spaces for ethical discussion,” she said. “We need to assemble groups in hospitals—not just nurses but physicians as well—to talk about difficult cases. People need to be able to feel safe saying, ‘That was distressing.’ We need to create a community in which disagreement is normalized and everyone feels comfortable speaking up.” She paused—maybe a second of silence, and I became aware, suddenly, of how swiftly her considered words had been rushing at me, and of how her hungry idealism seems never to sleep. Then she stated the obvious. “We’re not there yet,” she said, “but I’m trying very hard to get us there.” 

Bill Donahue is a writer living in New Hampshire.