Photographs by Lee Pellegrini

The Change Agent

The pandemic was a long and grueling reminder of the feelings of distress and voicelessness that nurses can sometimes experience. Now Aimee Milliken, who joined Boston College last year, is helping the Connell School train nurses to confront these challenges.

鈥淚 didn鈥檛 come into nursing to feel like I鈥檓 torturing people to death,鈥 Aimee Milliken thought to herself.听

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. 鈥淪he wasn鈥檛 interactive anymore,鈥 recalled Milliken, now an associate professor of the practice at 糖心vlog直播平台鈥檚 Connell School of Nursing. 鈥淪he鈥檇 been in the intensive care unit for a long time, and she was not making progress. And now she was on a ventilator.鈥 The patient was suffering from the condition anasarca, or body-wide swelling, and 鈥渁ny little puncture wound would just seep as I gave her a bed bath.鈥

The woman鈥檚 family had decided, earlier that day, to keep the patient plugged into life support, and this disturbed Milliken. 鈥淪he was unable to give words to her pain,鈥 the nurse remembered, 鈥渁nd I worried that we were not doing our best by her in terms of her dignity.鈥 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鈥檚 family.

Milliken just kept working by the woman鈥檚 bedside. She didn鈥檛 yet know how to identify it, but she was experiencing a problem that plagues many nurses. It鈥檚 called moral distress. That鈥檚 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 鈥渄o the right thing for patients under conditions of ambiguity or when obstructions occur.鈥

At thirty-five, Milliken is already one of the nation鈥檚 top experts on moral distress鈥攁nd, more generally, on nursing ethics. She harbors a nuanced, authoritative understanding of what it鈥檚 like to be a nurse in a system where doctors鈥 voices get priority and where all the problems that our society delivers to the medical system鈥攔acism, social inequity, limited resources鈥攃an come crashing down on each life-or-death decision. She learned hard lessons as she tended to patients and, later, at 糖心vlog直播平台, where she earned her PhD in nursing in 2017. When Covid struck, she was at Boston鈥檚 Brigham and Women鈥檚 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鈥攖hat nurses need training on ethical matters and a say in ethical decisions鈥攊s in high demand.听

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 糖心vlog直播平台 nursing professor Pamela Grace, she published Clinical Ethics Handbook for Nurses last year. As Grace sees it, Milliken is helping drive 鈥渁 growing trend which sees nurses鈥 voices being heard more, especially as it relates to ethics. They have something to say that hasn鈥檛 always been listened to: They get to hear patients鈥 stories and see what鈥檚 going on with families.鈥

Milliken is that rare scholar who鈥檚 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鈥揵ased bioethics think tank, calls her a 鈥渞ock star,鈥 explaining, 鈥淭here鈥檚 nobody who鈥檚 better at blending the practical and the theoretical.鈥 In 2020, when The Hastings Center was tasked with shaping 鈥渆thical frameworks鈥 tailored for the response to Covid, Berlinger enlisted Milliken鈥檚 help. 鈥淪he can tell me about reality,鈥 Berlinger said. 鈥淪he really understands the rhythms of a nurse鈥檚 work. She knows that nurses aren鈥檛 just robots or algorithms, and she鈥檚 very attuned to the fact that you can have a wonderful plan that just doesn鈥檛 work in practice.鈥

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鈥檚 nursing world. 鈥淧eople died in the Covid pandemic not because of their genetic code,鈥 Gregory said, 鈥渂ut 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鈥檚 skilled and comfortable working with such teams, with both nurses and doctors.鈥

It was for these reasons, among others, that Gregory recruited Milliken to 糖心vlog直播平台. 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. 鈥淎t a Jesuit institution like 糖心vlog直播平台,鈥 Gregory said, 鈥渆thics is the cornerstone of the education we provide.鈥

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. 鈥淚 could do that by a lottery, by putting everyone鈥檚 name in a hat,鈥 she said. 鈥淥r can we say, 鈥楲et鈥檚 look at who鈥檚 going to live the longest?鈥 Can we look at things like kidney function and at whether people have hypoglycemia and diabetes?鈥

Deirdre Callahan, a student working as a registered nurse, had concerns about the latter approach. 鈥淭hat ignores historical inequities,鈥 she said, 鈥渓ike the racism that has impacted the health of Black people in America.鈥

Eventually, Milliken noted that sometimes medical decision makers address Callahan鈥檚 concerns by invoking an 鈥渁rea deprivation index鈥 that ranks census blocks based on socioeconomic conditions. 鈥淚f your neighborhood scores highly for deprivation,鈥 she said, 鈥測ou may actually get a bump up. You may get more access to resources.鈥

When I talked to Callahan after class, she said, 鈥淚 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.鈥 But, Callahan added, 鈥淎dvocacy won鈥檛 fix everything. We also need to bring new nurses into the profession.鈥

It鈥檚 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. 鈥淔or a long time,鈥 she said, her tone reflective and laced with care, 鈥渢here was this sense of, 鈥楲ook, let鈥檚 just get to the vaccine and everything will be okay.鈥 Then, when we had the vaccine, there was quickly a shift to 鈥榃hy aren鈥檛 things back to normal yet?鈥欌 The vaccine didn鈥檛 immediately return us to normal, in part, because early in the pandemic, people couldn鈥檛 get the treatment they needed for longer-term illnesses鈥攃ardiac disease, for example, and cancer. With the vaccines widely disseminated, those patients began filtering into hospitals for the delayed care they required鈥攁long with people who鈥檇 decided against vaccinating and were, as a result, suffering severe Covid symptoms.

TK

鈥淭here was a logjam,鈥 Milliken said. And often nurses took the blame for it: 鈥淲e went from being 鈥楬ealthcare Heroes鈥 to being something like lepers.鈥 And today, with so many nurses quitting, 鈥減atients can鈥檛 get the care they need,鈥 she lamented, 鈥渟o they鈥檙e stuck in their beds in the ICU. And other people can鈥檛 be admitted from the emergency department into those ICU beds.鈥

The health care system, she continued, 鈥渋s a really stressful place to be right now.鈥 In 2020, she personally experienced all of its stressors in undiluted form. She was pregnant with her first child that year, and also just starting out as the director of ethics at Brigham and Women鈥檚. No longer working bedside, this new role put her at the forefront of a developing field that sees practitioners stepping into medicine鈥檚 most conflictual cases and helping doctors, nurses, and families reach decisions on how to proceed. With the hospital鈥檚 resources strapped by Covid, she found herself asking families to reckon with grim questions like, 鈥淚f your mom doesn鈥檛 respond to life support after five days, can we reconsider?鈥

Milliken handled five to ten cases at a time. It would have been an excruciating workload under normal circumstances, but amid the pandemic, she said, 鈥淲e were operating in a war zone and in a complete vacuum of information, without a vaccine. We didn鈥檛 know about the natural history of the disease, and we didn鈥檛 know how to take care of people who were sick. We didn鈥檛 know how contagious it was and we weren鈥檛 sure we had enough medical resources.鈥 Milliken worked with others at the Brigham to shape crisis standards of care that delineated how the hospital might ration ventilators, dialysis machines, and ICU beds. 鈥淲e never actually needed to implement that process,鈥 she said, 鈥渂ut just in the planning, I was experiencing a lot of moral distress. You name a symptom of stress, and I was experiencing it. I couldn鈥檛 sleep. I couldn鈥檛 stop thinking about work, and there was this tension between needing to be there to support my colleagues and my protective parental instinct.鈥

Milliken relieved her stress in part by strolling around her neighborhood with her husband. But these walks came at such a traumatic time that in early 2021, after the birth of her son, they proved haunting. 鈥淎s the sun came out and the snow melted and the birds started chirping,鈥 she said, 鈥渨ell, those are usually really exciting things for me, but I started getting anxious, and I realized I was experiencing PTSD. The change in the season was triggering me.鈥澨

When she was eight years old and cavorting about on her family鈥檚 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.听

That first deep dive into the medical world wasn鈥檛 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, 鈥淪he鈥檇 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.鈥

Still, Milliken, whose left arm still bears a long, stitched scar from her fasciotomy, said it wasn鈥檛 the surgeons who most impacted her. 鈥淚t was the nurses at the hospital who were my buddies,鈥 she explained. 鈥淭hey supported me and cared for me. They let my mom sleep in the room鈥檚 second bed the whole time I was there, and when I asked them to burn my toast鈥擨 liked it extra crispy鈥攖hey just started giving me burnt toast every morning.鈥

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听 alive. Today, Milliken understands that this was happening because Americans often lack ethical vocabulary. 鈥淲e don鈥檛 do a good job talking about death in this country,鈥 she said. 鈥淚t鈥檚 hard for us to say, 鈥楬ey, Dad, what should I do if something catastrophic happens?鈥 Because he鈥檒l probably just say, 鈥楲et鈥檚 just cross that bridge when we get there.鈥欌 Even when patients prepare advanced directives, the documents often mean little. 鈥淭hey might not discuss them,鈥 Milliken explained, 鈥渟o their family doesn鈥檛 know the context behind the decisions. And so there鈥檚 this weight of responsibility that falls onto the surrogate decision makers. No one can ever feel like they gave up on dad.鈥澨

Working in the ICU, Milliken felt so alienated from the values of compassionate care she鈥檇 been taught as an undergrad that she decided that nursing was in need of structural change. So in 2011 she began pursuing a master鈥檚 in nurse management at Yale. While in New Haven, she took a class on ethics. 鈥淎 light bulb went off,鈥 she said. 鈥淚t was like, 鈥極h my God, they鈥檙e talking about the sort of cases that bothered me and there鈥檚 language for it.鈥 So I decided at that point to focus on ethics.鈥澨

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鈥 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鈥 readiness by asking them thirty-three questions, such as whether restraining an intubated patient 鈥渁lways has鈥 or 鈥渕ay have ethical implications.鈥澨

In Boston, Milliken worked in local hospitals, often听on ethically fraught cases. In 2013, when two terrorists听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鈥攏ineteen-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. 鈥淭alk about moral distress,鈥 Milliken said. 鈥淭he whole听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.鈥

Milliken is always striving toward the order and civility that prevailed in Boston after those 2013 bombs went off. She doesn鈥檛 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 鈥渋ncreasing frustration and anger鈥 nurses were feeling toward unvaccinated patients. Then, even as she empathizes with her weary colleagues, she insists that they must transcend the 鈥渃ulture of blame鈥 and 鈥済ive attention to the full range of human experiences and鈥espond with an attitude of respect toward both those who hold to anti-vax preferences鈥nd those who are vaccine hesitant.鈥 Because nurses working in the Covid-19 ICU 鈥渕ay not understand the potential impacts of social determinants on vaccine decision-making,鈥 she continues, a proactive colleague 鈥渃ould help them 鈥榗onnect the dots鈥 between issues such as public education, housing, urban development, and vaccination tendencies.鈥

Milliken believes that today鈥檚 nurses can only feel agency if they take action鈥攊f, that is, they see caring as not just a bedside act but a fight to remake 鈥渢he context in which care is provided,鈥 she said. 鈥淓ven if you鈥檙e 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.鈥 From there, she summed up her role educating and training nurses at 糖心vlog直播平台: 鈥淲e have to craft clinicians who get involved,鈥 she said, 鈥渁nd we need to give them a really solid foundation in ethics, so that they can all be ambassadors with a toolkit of ethical knowledge.鈥

In some ways, the future of nursing boils down to numbers. To stay viable, the medical听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. 鈥淵ou can see my son鈥檚 fire truck behind me,鈥 she said, beaming. 鈥淗e鈥檚 two-and-a-half now. He knows everything about trucks.鈥

Transitioning, Milliken explained that she鈥檚 been working in hospitals since she was a sophomore in college. 鈥淎nd we鈥檝e always been talking about an impending nursing shortage,鈥 she said. 鈥淭hen Covid became this accelerant where the 鈥榠mpending鈥 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.鈥

Change will come, Milliken is convinced, if nurses are given a voice鈥攁nd also if the rest of us proffer a little care to these caretakers. 鈥淣urses are feeling burnt out,鈥 she said. 鈥淭hey鈥檙e feeling drained, and people are doing a lot of work around resilience. They鈥檙e saying, 鈥業f you鈥檝e experienced something stressful, go do yoga. Download Headspace [a meditation app] and do some mindfulness work.鈥 My challenge with those sorts of interventions is that they鈥檙e very individually focused.鈥

The problem, Milliken said, is that 鈥渕oral distress is really a system-level problem, which interventions targeted at the individual are ineffective at addressing.鈥 So, in March, Milliken took a more systemic approach, co-organizing a daylong workshop at 糖心vlog直播平台 entitled 鈥淯sing the Liberal Arts to Explore and Heal from Moral Distress.鈥 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 糖心vlog直播平台 a capella ensemble. The intent, Milliken explained, was to 鈥減rovide a multi-modal immersive experience where, in community, people could work through the feelings and emotions.鈥

The workshop was just part of Milliken鈥檚 larger quest to build a 鈥渕oral community鈥 for nurses. 鈥淲e need to create spaces for ethical discussion,鈥 she said. 鈥淲e need to assemble groups in hospitals鈥攏ot just nurses but physicians as well鈥攖o talk about difficult cases. People need to be able to feel safe saying, 鈥楾hat was distressing.鈥 We need to create a community in which disagreement is normalized and everyone feels comfortable speaking up.鈥 She paused鈥攎aybe 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. 鈥淲e鈥檙e not there yet,鈥 she said, 鈥渂ut I鈥檓 trying very hard to get us there.鈥澨


Bill Donahue is a writer living in New Hampshire.


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