Serving as a healthcare worker in a conflict zone is an experience that is characterized by peculiar and unimaginable challenges. This commentary is an exposition on twelve collated stories of healthcare providers currently serving or who have previously served in war. The stories bring to bear the heaviness of emotions such as fear and guilt that the authors grappled with, while concurrently showing that they embody virtues such as altruism, self-sacrifice, courage, and solidarity. In these stories, we see highlighted recurrent (...) ethical themes including the tension between the duty to others and the duty to self, prioritization and allocation of scarce health resources, ethics of research in war, ethics of virtue and the lasting effects of war. This commentary thus explores and heightens our awareness of the interplay between personal morals and the translation of these into ethics of healthcare provision in war. In so doing, the commentary urges us to reflect on ways by which we can engage the discourse pertaining to war and healthcare ethics. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When a Conflict Collapses on a Child: An (Aborted) Medical Evacuation of a Hazara Toddler During the Kabul Airport Blast and the Taliban TakeoverAyesha AhmadI work in the capacity of an academic researching conflict in Afghanistan. My commitment is rooted in the firm terrain of friendships that merged into sisterhood of the Afghan terrain spaning decades of war but which is also the home of poetics and legacies that (...) refuse to be clouded by the traumas of the land.As a medical ethicist situated in global health, I perceive the inadequate focus on recognising the mental health needs born from living in war as a moral injustice and a form of silencing the suffering. This injustice should be held by the geopolitical hands that play the chords of conflict.However, such research is all too often concluded before it can develop as too dangerous, or too risky, or even as unethical because potential participants are perceived (often, unjustifiably so) to be too vulnerable.Another peril of research is the boundary drawn between a particular experience of the research objective and the life experience of the research participant. Connecting as a researcher and in a personal capacity, I fell into a chasm unseen in the context from where I work in London, United Kingdom.I remember the evening before Kabul city fell to the forced control of the Taliban. My friends reminisced during a nightfall reflection on the battles where the city walls had barricaded its inhabitants from centuries of invaders trying to access the valley of a city surrounded by mountains. Kabul city is a haven for war. Its geographic location makes it desirable to conquer, but part of its desirability is because of how the mountains envelop where the languages, ethnicities, religions, and stories of the Silk Road have settled and rested. Once conquered, the city protects you. And Kabulis felt safe. And to that end, on that fateful night, we ended our conversation in the confidence of hope; that Kabul city would not fall, and with the heart of the country still intact, Afghanistan would be saved.The dawn arrived and so did the approach of the Taliban to the city gates. There were frantic and rapid whispers that transformed into screams. And then the moment came, the Taliban were within the city walls.The juxtaposition between the regular London traffic heaving and breathing, and the frantic, panicked sounds of horns and vehicles fleeing in Kabul that I heard through WhatsApp audios in the background to friends narrating their journey home, was as stark as the peace and war they both echoed. [End Page 167]Soon the stories started speaking, pleading, paining, pressuring—stories seeking survival. In the dawn, instead of the sun breaking the sky, I broke the morning to a friend during a telephone conversation who had just awoken and had not yet received the news. I told my friend that the Taliban were in Kabul city. The reaction was grief, just like the grief I had heard in their voice a few months prior when their beloved father had passed away and entered the grave before they had breathed the new dawn. In the dusk, instead of the moon shining upon the city, women, families, and children were sheltering from the darkness of the grave closing amid their breathing bodies.Then, the blast came. In the energy of the quest for safety, people, walking like pilgrims, surrounded Kabul airport, queuing like worshippers. Prayers died. Hell rose. The waiting crowd was fired upon. The air did not offer breath; instead, a final moment of the sound of war that had blighted lives.In the crowd was a family who I dedicate this article to. I write the story of the father, the mother, the daughter, and the son of that day. The family was Hazara, a disputed and discriminated ethnic minority in Afghanistan, of a legacy traced to the invasion of Genghis Khan, the founder of the Mongol Empire. Theirs is a story of travellers and a soil of stories; a particularly profound story because the parents had specialised in geology and were experts of the stones of their long heritage. Yet, still, they... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Soldiers of the Invisible Front: How Ukrainian Therapists Are Fighting for the Mental Health of the Nation Under FireIrina Deyneka and Eva RegelIrina DeynekaWhen the Russian army attacked my country, I became a volunteer for a hotline offering psychological support to those in crisis; refugees, those who were under the shelling, those who were hiding in bomb shelters, and who were directly in the zone of fighting. People were (...) lost and disoriented by constant bombing, by the fact that their country was under attack. Once, I had a woman who lived in Mariupol on one of these calls. I was living then in another city, Odessa, but was experiencing the same horrors of war that my client was—the shelling, uncertainty, and despair. We were processing my client’s feelings of grief and anxiety when I heard the sirens on her end. I offered to stop our session so she could seek shelter. She told me she would not have time to find shelter and wanted to continue our meeting. And so, we continued... But soon, Odessa’s sirens broke the silence, and it was my turn to decide what to do; should I continue our session or try to find a bomb shelter for myself? I decided to stay because I thought that was the right thing to do morally, professionally, and personally.I eventually left Odessa, but only after a bomb destroyed a house next to mine, and I saw a family, my neighbors, perish in the destruction. I am now a member of one of Slovakia’s Non-Governmental Organizations (NGOs) and work in a mobile brigade providing medical and psychological support to refugees. I can remember every one of my clients. Children, adults... I can remember their stories, their traumas, their memories of the horrors of war and devastation. Sometimes I meet with them only once, and they move on to another refugee center or are on their way to a Western part of Ukraine, trying to escape the war. And frequently, I do not know how many sessions I will be able to have with clients. Sometimes it is only one time, and sometimes we can meet for many months. Initially, I thought, What can I do in one therapy session? Now, I know that I can do a lot. I can provide people who survived the most inhuman conditions and witnessed death and destruction around them with a space and time to talk through and process their experiences. I am their support, and they lean on me as they try to make sense of what has happened to them and their country. I always tell my clients that my goal as a psychotherapist is to help them withstand, survive, and hold on while still being able to continue to function in a country at war. All I can do is treat each of the therapy sessions as our last one and try to provide as many strategies and skills as possible to cope with anxiety and depression, to be able to function, and to live in the present.Every session is about installing hope, moving slowly forward, and away from traumatic events. One of my clients, a 14-year-old boy, was diagnosed with a neurological condition, involuntary facial muscle spasm, or tics. He was barely talking when I first saw him, and I decided to use art therapy as a trauma-processing tool during one of the therapy sessions. He was drawing an explosion, fire, and destruction of his neighbor’s house. He blacked out the horrors of his experience to preserve his strength. Yet, he began slowly remembering his experiences, re-creating the story of his trauma, and making memories. I was fortunate to work with [End Page E4] him for many months, carefully and thoughtfully helping him re-create the sorry of his trauma, helping to become its witness. Ultimately, it was great to see that he could control his memories and his emotional stress; he felt empowered and in control.Eva RegelThis is the story of Irina Deyneka, one of many Ukrainian psychotherapists working in Ukraine, providing mental health support to a nation ravaged by... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Liberating BreathElizabeth DotsenkoFunding. Elizabeth Dotsenko, MD, is supported by the Loyola University Chicago–Ukrainian Catholic University Bioethics Fellowship Program, funded by the National Institutes of Health Fogarty International Center (D43TW011506).The war in Ukraine started not in 2022, but in 2014. Some of my relatives have been living under occupation for the past nine years. After a year of occupation, parts of Ukrainian society stopped paying attention.But on February 24th (...) 2022, that changed. The whole country was awakened by missile attacks in almost every region. Kyiv, the capital, was heavily shelled by air strikes, and from the North, South, and Eastern borders, Russian troops entered our territory with long convoys of military vehicles. In one moment, we all woke up in a country at war.I have experience working in conflict zones. In 2017, I worked in Iraq in Internally Displaced Persons (IDP) camps for one year. On the 25th of February, 2022, my colleagues and founders of STEP-IN, the NGO with whom I used to work in Iraq, initiated a Zoom call. We decided immediately to start work in Ukraine—without any funding. Although my only previous work experience was being a doctor, I ended up taking on managerial responsibilities and established a Ukrainian branch of STEP-IN. I was also mother of a 1.5-year-old girl in a country of war. To say it was challenging is an understatement.In the first week of the full-scale invasion, STEP-IN opened a crisis intervention point on the Ukrainian-Slovak border crossing, where people could get psychological help and warm meals. We provided shelter and a place to sleep for those waiting in overcrowded border points.As soon as we received our first grant, we started a mobile medical team in the Western part of Ukraine, where thousands of IDPs were relocated. They were living in schools, huge sports halls without any privacy, kindergartens, churches, and at the end, any building that could provide shelter from winter weather.My colleague and I assessed the region and settled on ten permanent, consistent locations for biweekly visits. Aside from my role as coordinator, I also worked as a doctor for the first few weeks because we struggled to recruit any Ukrainian doctors. However, within a month, we had a full team with a psychotherapist and medical doctor. The team traveled through the Trascarpathian region in Western Ukraine and provided free consultations with physicians and psychotherapists as well as medicines, hygiene kits, and social services.After the de-occupation of northern Ukraine, the tension and hopelessness seem to have decreased. People started smiling on the streets. I feel like I can finally breathe and live. At the beginning of the war, my husband and I, with our young daughter, fled from Kyiv and were not sure we would ever be able to return. After the de-occupation, life started to feel more stable. During one of STEP-IN’s assessment trips, my husband and I visited our home. In such a situation, very small things unexpectedly become [End Page E1] very valuable to me. I was so happy to see pictures on the wall, a ceramic bowl I brought from Iraq and our child’s favorite toys.The project in the Transcarpathian region had been ongoing for a few months, and in October 2022, I went to work there for a week as a physician to cover for someone else. We were searching for a new candidate and didn’t want our beneficiaries to remain without medical help, especially in the peak flu season.There is a day that I remember vividly in all its details. I remember the smell in the room and how the light from the window lay on my patient’s face. It was Tuesday, and each Tuesday, we went to the Protestant church guesthouse, where around sixty IDPs were hosted. The church was one of my favorite places to work because the administration was very supportive and caring toward IDPs. Unfortunately, that was not the case everywhere. From the moment I arrived at a location, it was apparent how the IDPs were treated. Their eyes were the best... (shrink)

In 12 narratives, medical workers from Afghanistan, Darfur, Gaza, Iraq, Israel, Myanmar, and Ukraine describe the day-to-day challenges of providing quality medical care in austere conflict zones. Faced with severe shortages of supplies, overwhelmed by sick and injured civilians and soldiers, and subject to constant attacks on medical personnel and facilities, the contributors to this collection confront difficult dilemmas of justice, medical impartiality, neutrality, burnout, and moral injury as they struggle to fulfill their duties as medical professionals, military officers, and (...) conscientious citizens. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When Ethics Survives Where People Do Not: A Story From DarfurGhaiath HusseinI was not new to Darfur. I had been here before, although I wore a different hat as I literally walked under the burning April sun along the wide, dusty, unpaved streets of Nyala, South Darfur, to “headquarters.” It was to be another interesting, but normal, peaceful, and safe day as I led the Sudanese household survey in (...) South Darfur, then the largest of all Darfur states. That was in 2006, a few years after I joined the Federal Ministry of Health. My office overlooked the Nile, but getting out of the capital city of Khartoum was always the best part of working there. I had the opportunity to meet real people in their real places, where they are home and at ease.Overall, the data collection team’s work went according to plan. Most of the randomly selected villages were visited as planned or replaced according to protocol. But this morning was anything but normal. A few days earlier, while visiting a village in a nearby town, Kass, my team was able to make a single phone call to us, the leadership [End Page 162] team, composed of two colleagues from Darfur and myself, indicating the team had no reception—the nearest signal was an hour’s drive away. The team leader assured me that they had started collecting data and promised to call every day or every other day. They were a team of six young men and women (I called them boys and girls because they were so young and innocent) between the ages of 20 and 25, all from Darfur. Two of them were in love and participated in the survey collection to save the per diem for their wedding.The time I was expecting their call came, but the call did not come. Then another day, then another, then another.One of the management team was in charge of the security update, and that morning he asked me in a shaky voice if we could have a private meeting as soon as I entered the room. He informed me that the village where my team was located had been attacked by the Janjaweed, the notorious militia known for its ruthless, brutal attacks that leave nothing behind, but men killed indiscriminately, houses and children on fire, and women raped. I recalled my experience in Darfur the year before when I mechanically asked a woman if she had lost a family member in the last six months and what the cause of death was. She burst into tears. I tried to calm her down. Finally, she told me that her few-month-old baby had been burned alive in front of her own eyes. Before I could even imagine the fate of the boys and girls on the team, a call came in. It was not from the team, but from a crying mother who asked me to “bring her daughter back.” She told me she did not want her daughter killed or raped. I cannot remember what I said because I was in shock and did not want anyone to see this, especially the other teams. The last thing I needed was to see the panic for which I was not trained to manage.I had no time to waste. I had no exit or contingency plan in the 224-page survey guide that explained how to collect the data, how to ask the questions, how to sort and safely store the paper questionnaires, how to enter the data. It seemed to provide extensive guidance on everything except for the only instruction I needed at the time—How to keep my teams safe under fire. I took the first flight to the survey’s national headquarters in Khartoum seeking help. I was promised to be put in contact with the intelligence and army in the region through the government agency responsible for organizing humanitarian work in the country. In fact, none of them were in the attacked village. My colleagues on the management team seemed more hardened to the conflict than I was. For me it was something I followed on the news... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Why We StayVladyslava Kachkovska, Iryna Dudchenko, Anna Kovchun, and Lyudmyla PrystupaFunding. Vladyslava Kachkovska, MD, PhD is supported by the Loyola University Chicago– Ukrainian Catholic University Bioethics Fellowship Program, funded by the National Institutes of Health Fogarty International Center (D43TW011506).We are a group of physicians and professors in the Department of internal medicine at Sumy State University in Ukraine, located 20 miles from the border with Russia. We have been (...) working together for ten years and, against the background of the war, have become more than colleagues, more than a hematologist, an allergist, a pulmonologist and a rheumatologist. We are now one organism that works for the benefit of patients, coordinating humanitarian supplies, teaching medical students, and at the same time worrying incredibly about our children, but trying to maintain our psychological homeostasis.Over the past year and a half, we have learned many things. Dividing everything that surrounds us into primary and secondary concerns, we learn how to live without electricity during the winter and how to preserve the water supply. We realize material possessions are not important, as at any moment you may lose everything. After covering the basic needs of our families, we do not try to save money, but rather the opposite: we spend all the rest on drugs and supplies for those who are in need now. Of all that we have learned, one thing we have not learned is indifference, which is not possible during this time of constant loss of acquaintances, colleagues, and friends. We find balance only in our constant work. We have patients with medically complex conditions, and we prioritize them and their needs.Our multidisciplinary teamwork before the war brought us great pleasure: interesting clinical cases and successful work with our patients, frequent training abroad, scientific research, and work with medical students and residents.On February 24, 2022, our priorities changed. In addition, each of us faced a dilemma: whether to take our children to a safe place or stay. Balancing our emotional experiences and work is challenging, but mutual support, daily communication, and a heavy workload help us maintain a sense of normalcy. Still, we are sure this “normal” is adapted to our conditions and will not apply in peacetime. Moreover, since the beginning of the war, we have experienced dissonance between our established moral and bioethical principles, our virtues, and the main goal of medicine—preserving human life and dignity—with the surrounding events caused by the war. Daily deaths of Ukrainian civilians and soldiers, innocent children, domestic animals, abuse, rape of women, children, and older adults, demonstrative torture, the humiliation of human dignity, and criminal behavior of the enemy have altered our worldview. We are challenged by the central ethical and Christian dilemma, which our generation is unlikely to cope with—to accept everything we are going through and forgive.During the last year, we have noticed that the occupation, life in the border area, and daily shelling affect our patients, dividing them into two main groups. The first group includes patients with complex psychological issues who are looking for a physical explanation for their symptoms. This group in particular overloads the healthcare system. Since few mental health specialists are [End Page 158] available for consultations, other physicians often have to act as psychologists to reassure these patients. The second group of patients are those who do not seek medical help because they believe that their health problems are simply caused by the constant stress of war and thus they are indifferent to their health and ignore symptoms such as weakness, weight loss, chronic pain, or enlarged lymph nodes.Every day we work with patients whose lives have been negatively affected by war. Each has stories about the loss of loved ones, the loss of homes, or constant emotional stress related to relatives who are currently fighting in the armed forces. These stories cannot leave us indifferent. We live this experience together with our patients, in reality and not in the abstract, and we feel their emotions. To do otherwise would be impossible in our realities. In addition to qualified medical care, we take on the duties of psychologists because sometimes, this is the... (shrink)

There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID-19 unvaccinated family member, or use of a non-standard blood supplier. We address the ethical challenges posed by these issues. We (...) describe the current screening and safety processes for standard blood donation and explore the importance of donor anonymity and challenges with directed donation and non-standard blood suppliers. We present an ethical framework using the Best Interest Standard, the Zone of Parental Discretion, and the Harm Principle when considering these refusals. Finally, we provide recommendations for how to approach these requests as they potentially become more commonplace in pediatrics. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Burma’s Healthcare Under Fire: My Experience as an Exiled Medical ProfessionalP. P. KyawI used to work as a medical doctor in a less developed state than many big cities in Burma1 that experienced prolonged civil wars and current similar atrocities decades before the urban areas of the country experienced them. Before everything started, I was responsible for the medical management of the most vulnerable communities and had been struggling (...) with pandemic-related medical activities. Those were the happiest years of my life. I was with one of the best international organizations, where every effort I made was directly delivered to the patients with no unnecessary paperwork. The system was efficient, my colleagues were supportive, and I had a good work-life balance. I supported my family and whoever needed temporary financial support, played music weekly, met good friends who I hung out with every weekend, and [End Page 164] found hobbies like gardening and crocheting. I was content and happy. I even postponed my plans to get registered as a doctor in the Western world.Before moving to this beautiful ethnic state in 2019, I previously worked as a government medical doctor in Yangon, the capital. As much as I loved working in those civilian hospitals, I could not support myself with a monthly pay of $100-$150 USD. It was a hard decision to leave the service because it meant I could not pursue the medical specialty that I had always longed for and had to leave like-minded supportive colleagues. In Myanmar, unless you are a civil servant, you cannot pursue further clinical specialties. However, after leaving the government’s service to work in humanitarian medical assistance in hard-to-reach areas of Burma, I learned that life is still beautiful outside my comfort zone, until February 2021 when the coup began. Democratically elected members of the country’s ruling party were overthrown by the military, which then bestowed power in a military junta.I expected the election prior to the coup in November 2020 to be an uphill battle for Burma, but nothing more. I was still in denial when I first heard the news from one of the town’s NGO staff. The person had to travel on a motorbike to inform everyone that the junta had staged the coup. No telephone or internet was working at that time. My colleagues and I cried in our office, saying, “We are so young, and the future is still ahead. I don’t think this is going to last long. Maybe it will be over in a few days or, at most, a few weeks.” Once the peaceful protests started nationwide, my friends and I provided medical cover for the protesters, initially for minor medical problems such as low sugar, low blood pressure, injuries from accidental minor slips and falls, etc. Never in my life had I imagined that I would be taking care of bullet wounds and people injured by live rounds. While learning about gunshot wounds in forensic medicine, I thought, “Oh, this is not going to be very useful because Burma is not America, and I am not going there.” Then suddenly, it became too real and more useful than I would’ve liked it to be.I always think back to one especially bloody day when many people in the town were shot with live rounds. We assisted many patients. Usually, we would go around with the protest groups until they were over in the late afternoon. The protesters were always peaceful. There were no riots, no harmful acts, or vandalism. Only when the protesters were cruelly dispersed with tear gas, high-pressure pumps, rubber bullets, and live rounds (to the head) did they decide to defend themselves while still making their voices heard. The only defenses people had to counteract the live rounds were things like metal covers, firecrackers, and slingshots.One afternoon in March 2021, my team and I took an early break for lunch—unaware that some people would lose their lives that afternoon. We followed the local protests through Facebook Live while having lunch and started to hear firecracker sounds. A few seconds later, we knew... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:An Unsettling AffairZohar LedermanAdults should not bury babies. Whenever that happens, you know something in the world has gone awry.Similarly to most Israeli Jews, I had to enlist in the military when I was 18. As part of my basic military training, I had to guard a certain settlement in the West Bank for two weeks. The drill was what we call “4–8”: four hours of guarding, eight hours (...) of rest. I was supposed to stand on my feet throughout my shift without eating, reading, or doing anything that might distract my attention. The terrorists are coming, we were told, and they are bloodthirsty. You can save lives! Well, not that of the terrorist, obviously.I did very little guarding during those two weeks. I was too busy coping with depression and loneliness, although I am only now aware of the latter. Desperately struggling to keep my head above water, I did what I could to survive. I read books, lots of books. I remember reading Nietzsche’s Zarathustra’s parable of one’s development in the desert. You start off as a lion, then a camel, and finally a child. If I could bestow only one piece of advice to my younger self, it would be to pack lightly, as even the camel’s back can only take so much. My laziness paid off. Nothing happened during that time. My older brother was kind enough to drive for an hour and bring me and my comrades the best candy Israel has to offer, and Coke. So I snacked, drank, and read.Two years later, I was called to the very same settlement as an emergency medical technician, just about to commence medical school. I was accompanied by my brother, who was then in paramedic school. We were in the midst of a family dinner in one of the too-many Jewish holidays. A terrorist attack occurred—a terrorist penetrated a house while everyone was asleep and shot everything that moved, including a male baby. Being only a couple of months old, his body occupied less than a quarter of the ambulance gurney. The upper part was bare; the lower part was wrapped in a diaper. There was no blood, no obvious visible signs of trauma on his body, except for a small hole in his right arm, just under the bicipital muscle, right where the brachial artery is.Talking about the ethics of futile care seems out of sync in such moments, even if I were aware then of the debate. When a baby is dying, you do everything to save him. Two fingers on the chest, 15 chest compressions, 2 breaths. That is what we had to do then, and that is what we did. Needless to say, the pale body did not respond. My brother and I drove the small body to the morgue. I could do nothing but stare at it throughout the 50-minute drive. There is something wrong in a world where this kind of thing happens. I promised the baby that I would fix it.I have not fixed it. But I have been trying.I am now an emergency medicine physician and a bioethicist. I have not been involved in other terrorist attacks since then, but I have seen my share. Some deaths feel natural and even due; others feel cruel, untimely, and unjust. The latter takes away a tiny bit of your soul and makes you question your role in the world. By being the best physician I can be, I hope to prevent future cruel, unjust, and untimely deaths, one person at a time. But there is only so much a physician can do.Similarly to others working in bioethics, my research spans several topics, from clinical to public health ethics. A few topics, however, are particularly close to my heart, and the Israeli occupation is one of them. The untimely death of the baby drives this passion.I could not save that baby. No one could. But as a physician and a privileged academic I can choose to channel my efforts to make them count towards preventing other cruel, untimely, and unjust deaths. Through... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Full Collection of Personal NarrativesZohar Lederman, Ola Ziara, Rachel Coghlan, Oksana Sulaieva, Anna Shcherbakova, Oleksandr Dudin, Vladyslava Kachkovska, Iryna Dudchenko, Anna Kovchun, Lyudmyla Prystupa, Yuliya Nogovitsyna, Ghaiath Hussein, Kathryn Fausch, P. P. Kyaw, Ayesha Ahmad, Richard W Sams II, Handreen Mohammed Saeed, Artem Riga, Ryan C. Maves, Elizabeth Dotsenko, Irina Deyneka, Eva V. Regel, and Vita Voloshchuk• An Unsettling Affair• How We Keep Caring While Walking Through Our Pain• (...) Adjusting Laboratory Practices to the Challenges of Wartime• Why We Stay• A Semi-Personal Story from a Ukrainian NGO Professional (or a Semi-Professional Story from a Ukrainian Person) Living through the War• When Ethics Survives Where People Do Not: A Story From Darfur• Burma’s Healthcare Under Fire: My Experience as an Exiled Medical Professional• When a Conflict Collapses on a Child: An (Aborted) Medical Evacuation of a Hazara Toddler During the Kabul Airport Blast and the Taliban Takeover• The Vagaries and Vicissitudes of War• Providing Care to a Potential Aggressor: An Ethical Dilemma• One Surgeon’s Experience During Armed Conflict in Ukraine• The Limits of Our Obligations• A Liberating Breath• Soldiers of the Invisible Front: How Ukrainian Therapists Are Fighting for the Mental Health of the Nation Under Fire• Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineCopyright © 2023 Johns Hopkins University Press... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Limits of Our ObligationsRyan C. MavesDisclaimers. No funding was utilized for this manuscript. Dr. Maves is a retired U.S. Navy officer, and the opinions contained herein are his own. The opinions in this manuscript do not reflect the official opinion of the Department of the Navy, Department of Defense, nor of the U.S. Government.In 2012, I was a commander in the United States Navy, deployed to the NATO (...) Role 3 Multinational Medical Unit in Kandahar Airfield (KAF), Afghanistan. The KAF Role 3 began as a tent hospital under Canadian command, built along the flight line at Ahmad Shah Baba International Airport as [End Page 176] part of an expanding NATO base. By the time of my arrival, it was a small but capable brick-and-mortar building under U.S. Navy command, with four operating rooms, two CT scanners, and a busy intensive care unit (ICU).Not long before my deployment, the KAF Role 3 was described as one of the busiest trauma hospitals in the world. Casualties arrived every day, usually by helicopter. Blast injuries from improvised explosive devices (IEDs) were common, ranging in severity from concussions in passengers in armored vehicles, to multiple amputations from blast injuries with concomitant thoracic, abdominal, and pelvic trauma. KAF had a daytime population of over 30,000 in 2012, and our hospital was effectively the referral center for the region, so patients with non-surgical diagnoses were similarly common: myocardial infarctions, seizures, pulmonary emboli, and endemic infections, to name a few.As an infectious disease (I.D.) specialist, I functioned mainly as a hospitalist, managing patients postoperatively, but I also provided any consultative support when needed. During mass casualty events, the intensivists and I would act as backups in the trauma bay, freeing up the surgeons for the most acutely injured patients. It turned out that an I.D. doctor’s skillset lent itself well to acute trauma evaluations; we are well known for having an eye for fine details, combined with low-grade paranoia. These traits served me well during what I came to describe as “my involuntary trauma fellowship.”Our patients could be divided into five key groups: Afghan National Security Forces (ANSF, including the army and national police), non-Afghan coalition military (mostly U.S. and other NATO members), Afghan civilians, NATO civilian contract staff, and the Taliban. Our approach to each of these groups was different. For all patient groups, we would provide the same emergency care, including acute resuscitation and immediate life-saving surgery. It was after this emergency care period that our management plans diverged.For coalition forces, our next priority after acute resuscitation and stabilization was to assess whether a patient could remain in theater. Stable patients with relatively minor injuries could often undergo rehabilitation at KAF; many personnel could subsequently return to combat duty with their units. More seriously-injured patients would be transported out of Afghanistan within 24-48 hours (if not faster). Usually, this would involve stops at Bagram Airfield near Kabul and then Landstuhl Regional Medical Center in Germany before reaching a military hospital in their home countries. There were few limits on whom could be transported. Dedicated critical care air transport teams (CCATT) included intensivists, respiratory therapists, and critical care nurses, who could manage the most unstable patients on board what was effectively a flying ICU. The “lung team” in Landstuhl could fly to KAF to start patients with severe respiratory failure on extracorporeal membrane oxygenation (ECMO) and then fly them out on maximal support.NATO civilian contractors would receive comparable care, although the exact details of how they would be transported out of theater would depend on their home countries and the nature of their contract. We cared for one civilian contractor with newly-diagnosed HIV infection whom we were able to stabilize on the ventilator, get him extubated, start on initial antiretroviral therapy, and transport him home with a referral to his local HIV care program.Afghan soldiers were part of the coalition, but there was no distant home country where we could transport them. They were home. After their resuscitations and surgeries, we would arrange transfer to the Kandahar Regional... (shrink)

‘War is definitely hell on earth’. All too often, we hope the hell will be short-lived, over in a few days, and yet, as we know from experience, hell can go on and on and on. For healthcare workers who provide care to victims of conflict, the work raises many ethical dilemmas. The stories showcased in this edition of NIB share the experiences of a handful of brave individuals and how they navigated their professional ethical obligations as well as their (...) personal convictions during times of conflict. Adeptly portrayed are various approaches to ethical dilemmas, such as adhering to the ethical imperative of medical impartiality, the limits of professional and personal responsibility, coping with moral distress, and the power of humanity, evident through the collective efforts of strangers to help others. This commentary reflects on the ethical grey zones of being a healthcare provider in conflict, as there is no single right way of fulfilling professional obligations, each context being different. As several stories highlight, whilst stressful, the solidarity and comradery of working in a healthcare team can provide great support, purpose, and motivation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Semi-Personal Story from a Ukrainian NGO Professional (or a Semi-Professional Story from a Ukrainian Person) Living through the WarYuliya NogovitsynaI live in Kyiv with my husband and two daughters. On 24 February 2022, my husband woke me up at 5 am tapping me on the shoulder and saying, “Yulia, wake up. There are bombings outside. The war started”. [End Page 160]That day was our younger daughter’s birthday. She (...) turned six. We had planned a birthday party for her with friends, cake, candles and birthday gifts. Instead, we had to move both daughters to the bathroom where there are no windows so that broken glass did not hurt them if a missile hit.I am the Program Director at Tabletochki Charity Foundation, Ukraine’s largest childhood cancer NGO (https://tabletochki.org/en/). For 11 years before the war, we have been fostering childhood cancer care in Ukraine—through our direct assistance to families, support of pediatric oncology units, professional development of medical personnel, and advocacy.The Russian invasion of Ukraine in February 2022 dramatically changed the healthcare system landscape in Ukraine. The physical threat, treatment disruption, exposure of immunosuppressed patients to improper conditions in bomb shelters and cellars, interruption in supplies, infrastructure damage, logistics failure, and funding constraints have been among the most manifested immediate and deferred implications of the war for the health-care system in Ukraine.That said, the biggest professional challenge was uncertainty and inability to plan. You have nothing to rely on in developing at least a short-term strategy. This may sound speculative and unimportant—who bothers about uncertainty when there is a physical threat to your life? But this is a wrong perception—uncertainty paralyzes and disables long before a bullet or missile reaches you.War also brings the collapse of relationships, partnerships, and coalitions. It depletes and limits resources, whether human, financial, or emotional. Scarce resources make hospitals, healthcare professionals, and NGOs compete for patients, donors, and financing. The war and the external threat unite only for a short period of emergency response. Once the situation transitions to a protracted conflict, people and institutions start fighting for their own survival.My family stayed in Ukraine but moved to Lviv, a city in Western Ukraine, which turned into an evacuation hub for children with cancer. More than 1,000 children with cancer were evacuated and referred for treatment abroad through the SAFER Ukraine collaborative initiative by St. Jude Global, Tabletochki, West-Ukrainian Specialized Children’s Medical Center (WUSCMC), and other international and local partners.During the first months of the war, we worked hand-in-hand day and night to bring critically ill children to safety and treatment. We sent evacuation convoys from Lviv to Poland twice a week, the largest one with 71 families, included four buses and 11 ambulances. We slept 4-5 hours per day. Within two weeks, my hands and legs were trembling from constant tension, concentration, and tiredness.And even this extremely fast-responding and effective evacuation may be questioned. We have been facing an ethical dilemma—whether the safety needs of the existing patients prevail over the needs of future patients in diagnostics and treatment in Ukraine. We discussed more than once whether we should stop evacuation and referral of children to European hospitals to sustain the Ukrainian childhood cancer care system and prevent it from degradation. It is very uncomfortable to confront such questions. Could our heroic efforts to evacuate as many Ukrainian children with cancer as possible turn into an evil for future patients to come? By evacuating patients, we left pediatric oncology units empty, without work for Ukrainian pediatric oncologists, and the usual pathways for diagnostics and treatment were disrupted. A healthcare system without patients is like a cardiovascular system without blood.My family returned to Kyiv in August 2022 for our daughters to continue their schooling. There were (and still are) only five to seven kids in a class; other children left Ukraine or switched to online studies. My husband and I decided that our children will attend school offline—despite the regular missile attacks. This is a private school; we pay for it. In such a way... (shrink)

This symposium includes twelve narratives from individuals or groups who have worked to help the sick and injured receive healthcare during armed conflict. Four commentaries on these narratives are also included, authored by experts and scholars in the fields of bioethics, human rights, sexual violence in armed conflict, the forced displacement of civilians, and policy development for resource constrained healthcare. The goal of this symposium is to call attention to the the difficulties and ethical dilemmas of providing healthcare during violent (...) armed conflict. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Vagaries and Vicissitudes of WarRichard W Sams III remember standing in the kitchen of our home on Camp Pendleton—a United States Marine Corps base in Southern California—listening to National Public Radio (NPR) and doing dishes in the fall of 2002. President Bush announced to the world that he was considering a pre-emptive invasion of Iraq on the pretext of Saddam Hussein harboring weapons of mass destruction (WMD). Three (...) months later, as a Navy Family Physician, I deployed with a surgical company in support of Operation Iraqi Freedom. Reflecting on the situation with a like-minded close friend, I was not sure— would this be a just war? A necessary war? In my mind, it did not rise to the level of conscientious objection, yet the rightness of invading another country with all the anticipated death and destruction was not clear.En route to Kuwait, we laid over in Spain. While fixed to a TV in a holding area, I watched the Secretary of State make a case to the United Nations (UN) and the world that removing Hussein from power would protect us from mobile anthrax labs that could kill tens of thousands. I thought to myself, Either he is absolutely right, and we are protecting our country and the rest of the free world, or he is terribly mistaken and we are embarking on a disaster.As we trained, prepared, and waited in our tents to invade, we listened to the news on “Voice of America” with a hand crank radio. Thousands of citizens from nations around the world protested. Pope John Paul II, a man well acquainted with the tragedy of war, even spoke out about the planned invasion. “War is not inevitable. It is always a defeat for humanity.” He admonished our leaders that war needed to be the very last option. As a man of faith, I was troubled by his resolute, thoughtful opposition to the crusade I was embarking on. As the day of the invasion approached, scud missiles flew over our camp and we scurried into bunkers, day and night, with our gas masks donned to protect us from possible WMD attacks. In March, with the announcement of a “shock and awe” missile attack on Hussein’s palace, the invasion commenced.Within a day of flying by helicopter into enemy territory to set up a surgical company, the fog of war set in. A series of mass casualties streamed in from nearby Nasiriya. We received dozens of injured enemy combatants and American soldiers. Most troubling were the civilians. An entire extended family fleeing for their lives stumbled into an Iraqi minefield meant for us: a mother dead, the men with shrapnel wounds, and an aunt lost both of her legs. Then there was the little boy. By doctrine, our leaders reassured us we would not care for children. Yet, out of instinct, the field corpsmen scooped up all injured, including children, and [End Page 170] brought them to us. The five-year-old’s legs were blown to bits. We had no pediatric supplies. The anesthesiologist heroically intubated the child’s tiny airway with a urinary catheter and placed an adult IV. The surgeons corrected the wounds the best they could. Hours later, in futility, we performed chest compressions on his tiny mangled body.A day later, the worst sandstorm in a decade struck the area. We struggled to keep the patient-filled tents erect. A Marine appeared on the scene out of the darkness (you could not see beyond your nose in the storm) exclaiming we were going to condition one—lock and load our weapons due to an imminent threat. As healthcare professionals, Geneva Conventions dictated we were to use weapons only in self-defense. We chambered our 9-millimeter pistols to defend our patients and ourselves while Marines formed a defensive perimeter. I thought to myself, Great I’m gonna be shot up and die during a freaking sandstorm in Iraq. Hours later, we were told to stand down. The threat was not from approaching enemy combatants but from shepherds running from the crossfire. I had a small nervous breakdown, sleep deprived and under duress... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Providing Care to a Potential Aggressor: An Ethical DilemmaHandreen Mohammed SaeedFollowing the abrupt fall of almost a third of its territory in 2014 to armed militias, Iraq fell into civil war turmoil. As a direct result of the armed conflicts, hundreds of thousands of Iraqis were displaced or subjected to atrocious human rights violations with physical, sexual, and psychosocial abuse. While the scenes on the TV provided only a (...) glimpse of what was happening on the ground, the true stories circulating about people’s suffering left me personally in absolute shock. Among those who suffered the most from the offences were marginalized religious and ethnic minority groups, who were viewed and treated as infidels by the aggressor militants. Those marginalized communities not only endured displacement due to the armed conflicts but they were also mass-exterminated, sexually abused, and underwent massive destruction of their towns and villages.In 2016, I was working for Ministry of Health as a primary care physician in a small town in Iraqi Kurdistan, which hosted tens of thousands of internally displaced people (IDPs) from one of those marginalized minority communities. I had the opportunity to hear their tragic stories firsthand as they fled for their lives in 2014. Working in those communities as a primary care physician allowed me to truly understand their feelings and emotions and reflect on their experiences while providing healthcare services. This experience sparked an interest in humanitarian work, in which I could be close to areas of need and involved in providing physical health first-aid and also psychological and social first-aid; all crucial in addressing the future health consequences experienced by people going through humanitarian crises. In the same year, 2016, I joined an international medical organization and started working in remote and low-resource settings in northern Iraq as a humanitarian physician. Our projects included a variety of primary care, psychosocial, and urgent care services targeting refugees, IDPs, and vulnerable host communities in areas near conflict zones. The projects were designed and implemented with the hope that the most vulnerable populations have access to our services.In October 2016, the Iraqi authorities launched a massive military operation known as the “Battle of Mosul” to regain control of Mosul, the second-largest city in Iraq. As an emergency medical humanitarian organization, we had to be near the battlefield and respond to the unfolding humanitarian crisis on a daily basis. As the official security forces backed by the international alliance started to advance, tens of thousands of people, including some militants and their families, fled Mosul and headed towards areas controlled by the Kurdistan Regional Government’s forces in the north, where our organization was operational. Some of them sought refuge in one of our medical facilities in northern Iraq, which was operated by local staff, [End Page 172] including members from some of the minority communities that had suffered the most from the militants’ aggression in 2014. The patients entering our facilities were mainly older adults, women, and children, but we were also visited by a small group of potential militants who were either injured, malnourished, or just seeking help and refuge. As a neutral, impartial, independent, humanitarian organization compliant with medical ethics, we were committed to providing healthcare services to anybody in need without discrimination or judgment.As we responded to the humanitarian crisis unfolding before our eyes, some of our staff members came forward and raised valid questions about the ethics of treating patients potentially involved in serious human rights violations. With tears in her eyes, one nurse approached me and stated, “Seeing these people reminds me of all the girls and women who went missing from my village and are now being sold as sex slaves in Syria”. The staff expressed serious concerns about their ability to provide care to patients who may have been involved in mass killing, torture, and the destruction of their own towns, as well as sexual abuse against their family members, friends, and people in their communities. Due to the psychological and physical trauma caused by the militants’ conquest, the staff was reluctant to provide medical care to these patients, as seeing and hearing them brought back... (shrink)

Armed conflict can destroy both a healthcare system and the people who comprise it. Where the facilities themselves may take decades to rebuild, this collection of essays is evidence of the remarkable resilience of healthcare providers working in these conflict zones. Twelve narratives are shared by doctors, nurses, and other staff working in current crises in places such as Afghanistan, Darfur, Gaza, Iraq, Myanmar, Syria, and Ukraine. The essays reveal logistical, personal, and ethical challenges of providing fundamental healthcare services under.

In this case study, I consider Mr. A, a Jehovah’s Witness with chronic vertebral osteomyelitis in need of surgical debridement. Prior to proceeding to the OR, he was unwilling either to explicitly consent to or refuse blood transfusion, while indicating he was open to transfusion intraoperatively, if the team judged it necessary. Ethics was consulted to determine if it would be morally justifiable for the team to proceed with blood transfusion during the course of surgery without Mr. A’s documented consent (...) to being transfused. I argue that in this case, what might be termed indirect consent—namely, delegating decision-making regarding some possible course of action without explicitly consenting to the course of action itself—may be sufficient for discharging the clinician’s ethical obligation to obtain consent. Identifying information has been changed or omitted to protect patient confidentiality. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Adjusting Laboratory Practices to the Challenges of WartimeOksana Sulaieva, Anna Shcherbakova, and Oleksandr DudinFunding. Oksana Sulaieva, MD, PhD is supported by the Loyola University Chicago–Ukrainian Catholic University Bioethics Fellowship Program, funded by the National Institutes of Health Fogarty International Center (D43TW011506).After 500 days of the unjust war initiated by the Russians, we look back to reflect on the challenges our medical laboratory faced during these early days. On the (...) morning of February 24th, we were awakened by the dreadful roar of sirens, the sound of which filled us with adrenaline and anxiety. Although our team had considered the risks of Russian military aggression and thus updated our emergency plan at the beginning of 2022, the first day of the war revealed that nobody was truly ready for the bombing, air alarms, tanks on the streets of towns and cities, violence and murders of civilians. That morning the city’s transportation system collapsed, and the flow of cars cluttered all the roads as people were trying to leave the city and escape the upcoming atrocities and death. Serious and disquieted people hurried along the streets—some people rushed to shelters, and others went to the military registration and enlistment offices to fight against Russian aggressors for the life, independence, and sovereignty of Ukraine.We hurried to work, committed to performing our duties. Our medical laboratory serves more than 750 hospitals in Ukraine. Despite fear and uncertainty, we walked to the lab, taking our children and alarm case1 with documents and essential things. Months later, people asked us why we went to the laboratory instead of leaving the city or even the country. At that moment, our [End Page 155] professional duties were an anchor linking us to each other against fear and panic. Our responsibility to provide patients and physicians with the results of blood testing, pathology, and molecular reports outweighed our fears of the war. We had to complete the testing of all the samples delivered to the laboratory to provide our customers—who include children, pregnant women, diabetic and cancer patients—with data essential for identifying accurate diagnoses and effective treatments. So we spent the first days of the war in the laboratory. At the same time, we had obligations and responsibilities to our staff as well. We had to consider how to manage our employees’ protection along with continuous laboratory services provided under endless air alarms and bombings. Many healthcare facilities in eastern regions and around Kyiv were affected by missiles or completely destroyed. Of our sixty laboratory offices around Ukraine, ten were damaged or abandoned due to occupation. Several of our fleet cars were also damaged and riddled with bullets. Many employees in the regional offices in Melitopol, Kherson, Mariupol, Chernihiv, and in suburbs of Kyiv such as Bucha and Irpin lost their homes as a result of massive military operations or occupation. Dozens of our employees joined the Ukrainian armed forces to defend civilians and fight against aggressors. Many others became volunteers, involved in blood donation, medical care for the wounded, cooking, and serving the troops. And still, we had to continue our work and protect our staff at the same time. We also helped each other by sharing our goods, medication, homes, cars, warmth, and support. Some pathologists stayed at the workplace for several days moving between pathology stations, microscopes and shelters, and sleeping on the floor but continuing to work.Our main challenge was the regular terroristic attacks on healthcare facilities situated far away from the front line, which in fact, violated international humanitarian law regarding respect for human rights during armed conflicts. During the first weeks of the war, the magnitude of military aggression, massive bombing, and air attacks undermined the healthcare system and endangered laboratory staff and patients. We prioritized protective measures. Some of our laboratory staff and facilities were evacuated from Kyiv to Lviv in western Ukraine. The partial relocation of our laboratory to Lviv was also driven by the displacement of several million Ukrainians to the western part of the country.We were able to arrange relatively safe accommodations for our laboratory employees and their families in Lviv. Under strikes and alarms, our... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineVita VoloshchukFebruary 24th was a day that has left a mark in the memory and on the lives of every Ukrainian person. My husband and I work together [End Page E5] in a hospital. He had gone into work early to conduct a kidney transplant that had been scheduled for that day. Suddenly, whilst on my way (...) to work that morning, I heard a strange sound—it was an air-raid siren. Before that, I had never heard such a sound. I went through all the possible options of what it could be. Of course, watching the morning news had never been a habit either. The next thing that astonished me was that the taxi I had ordered was taking an unnaturally long time to turn up. When I got into the taxi, I noticed that the taxi driver was really upset and silent for half of the journey. He then said, “A war has begun...”“War? So? The war has been going on since 2014.”“You don’t understand,” he said. “Russia is launching missile attacks all over the territory of Ukraine; Russian troops are coming from the east and north of Ukraine. They want to capture the capital of Ukraine.” (Kyiv).Arriving at the hospital, I saw confused faces everywhere. The morning meeting began with a discussion of how we were to act in any possible situation that may occur. We were to discharge patients from the hospital, as many as possible. The arrangement of a bomb shelter began (although I didn’t even think that such a thing existed in our hospital), along with the strengthening of the hospital’s windows, and the increase of supplies such as medicine and food. Of course, the boy who expected a kidney transplant did not receive it because no one knew what to expect at any second or where a hostile Russian missile might hit, as Russian missiles hit not only military objects but residential buildings, hospitals, and memorials as well.Children who had to continue therapy remained in the hospital. As soon as we heard the sound of an air-raid siren, we had to go down into the bomb shelter. This happened 5-10 times per day. Families with palliative and chronically ill children began to call and ask for advice on how to proceed in such a situation. As many children were on artificial respiration devices, others needed oxygen therapy, and sputum of mucus from the upper respiratory tract. All this required uninterrupted power supplies and appropriate equipment. Later that day, a doctor from Poland called me and asked if our pediatric patients needed help, saying it would be better if they were moved to Poland, where they would be safer and have the correct equipment. We started organizing evacuations for chronically ill and palliative patients.Seven days after the war began, parents from other regions, where the situation was more dangerous, began calling, asking for help evacuating. The hospital began to work intensively round the clock. Some patients moved in, and others were evacuated abroad. Some did not want to go. They continued treatment in the hospital, which turned into a hub for patients who had come from more dangerous, occupied territories; patients who were forced to leave their motherland to continue treatment.Since the beginning of the war, I have been responsible for transferring palliative patients and other patients with gastrointestinal diseases abroad. After the massive invasion, everything changed in our country. It is important to say that during the war, Lviv is safer than any other Ukrainian city, still air-raid sirens often go off, and everyone needs to run immediately to shelters for their safety. Palliative patients need special care. It is very difficult to run with patients several times per day during an air-raid siren or live with these children for a long time (2-3 weeks) in shelters because of the explosions occurring around them.It is impossible to move some patients to safety because they need appropriate medical equipment or mechanical ventilation is necessary. In shelters, there are crowds, and the high risk of... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:How We Keep Caring While Walking Through Our PainOla Ziara and Rachel CoghlanAuthor Dedication. To my dear brother Omar Ziara, a bright doctor, entrepreneur, and community advocate who was killed in an Israeli bombing in November 2023.May your soul rest in peace and may your memory remain alive in our hearts. May your unborn child grow up to become the wonderful man that you were. Forever loved by all.Palestinian-American (...) poet, Suheir Hammad, writes:Occupation means that every day you die, and the world watches in silence. As if your death was nothing, as if you were a stone falling in the earth, water falling over water.And if you face all of this death and indifference and keep your humanity, and your love and your dignity and you refuse to surrender to their terror, then you know something of the courage that is Palestine.I am a doctor from the Gaza Strip in Palestine. I live through acute war and protracted occupation. I work under missiles and through scant resources. I experience risks and dangers and face abominable choices made from nightmares. I know heartbreaking death.As doctors here, we fear, suffer, cry, and grieve alongside our patients and their families. This is my story of how we continue to care.Summer 2014 A Fifty-Two-Day War: How To Stay And How To Keep Them SafeThe huge bombardment strikes close to the hospital, scattering glass and rubble. It brings an abrupt end to my rare, quiet pause for coffee. Are the babies hit? We sprint to the Neonatal Intensive Care Unit, our full attention only on those infants, hastily checking every crib. My thoughts are frenzied. What if the next missile strikes us? Will I be able to rescue them? Will I have time to carry their tiny bodies outside through wreckage and fire? How will I choose who to save, and who to leave behind? Could I choose? Will I even be able to think lucidly, act logically for those babies if the fire consumes us? We stay.Somewhere, a house razed to the ground, a mother and her children dead. This time, our babies are safe.Summer 2014 A Fifty-Two-Day War: How To Cast Off Danger And How To Find ConsolationA missile shatters our neighbour’s roof. I am about to leave home for my evening shift. I check on my shaking mum; she is okay, not hurt at least. I ring the senior doctor. I am sorry. I am coming. I will be a little late. Two further missiles hit, wiping out the next-door building completely. No, do not send an ambulance for me. It is too dangerous. I will come [End Page 153] alone. Trembling through the dust and darkness, I leave on foot to reach those babies. I must compose myself. We are needed there to bring calm, to keep caring.And we gamble our lives to seek distraction and comfort for ourselves. We find solace through unbearable pain in our caring.Winter, Spring, Autumn, Summer, Any Day: How To Question Purpose And How To Feel HelplessIt is an ordinary night shift in ‘quiet’ times. Tonight, all the beds are occupied. All the ventilators are taken, forcing life into small, sick faces. At dawn, the phone call comes. A new baby struggling to breathe is on his way. I call around. No more beds to take him here or anywhere. No more ventilators—here or anywhere. Bring him here. We will care for him.He is in a very bad way. He needs immediate life-saving care. We take turns manually ventilating him, working to the hissing rhythm of the Ambu Bag1—inflating, deflating, inflating. Our arms ache. We keep pumping the bag. Do not stop. The moment when the morning shift arrives is our moment of salvage. We can go home. We have made it through the night without medicines, machines, disposables, or enough manpower, our arms throbbing. We have kept him alive.But he is so fragile, the system is fragile, we are fragile. Dare I even ask—is it worth it? Is it worth a baby surviving the... (shrink)

Routine infant circumcision is one of the most common surgical procedures performed in the U.S. Despite its broad societal acceptance, the practice is not without controversy. The stories included in this symposium offer rich insight into the diverse set of attitudes, values, and beliefs related to the practice of circumcision. They additionally offer insight into the complex web of personal, interpersonal, and social dynamics that inform the circumcision choices parents make for their children, the reasons parents make them, and how (...) others can influence decisional choices. More broadly, these narratives raise important ethical questions mirrored today in broader contemporary bioethical and public discourse on the scope and limits of parental authority to make decisions for their children, power dynamics in medical decision making, and the ethics of healthcare activism. In this commentary, I discuss three sets of themes related to the ethics of circumcision running through the symposium narratives, comment on the ethical tensions and questions which emerge from each set of themes, gently problematize some of the rhetoric surrounding the ethical permissibility of circumcision, and gesture towards the future of bioethical inquiry on circumcision discourse. (shrink)

Comatose survivors of cardiac arrest may die following withdrawal of life-sustaining therapy (WLST) due to poor neurologic prognosis. Family members, acting as surrogate decision makers, are frequently asked to decide whether the patient should continue to receive ongoing life-sustaining therapy such as mechanical ventilation in this context of risk of death following removal. Sometimes, physicians and family members disagree about what is in the patient's best interest, and this conflict causes distress for both families and medical personnel. This article examines (...) themes recorded in the medical records of 24 cardiac arrest patients at Columbia University Medical Center (CUMC) whose families chose to pursue continued life support despite physician recommendations for withdrawal. In documented conversations between patients' families and their providers, the most prominent themes included faith in miracles, the inappropriateness of "playing God," the value of more time with the patient, and differences in how providers and family members perceived the patient's status. (shrink)

This commentary examines twelve stories in which parents recount how they (and often their co-parent) decided whether or not to circumcise their newborn sons. Several debated whether this should be their decision to make. The stories offer an intimate glimpse into people's efforts to do the best for children in a context of incomplete and changing information and intense public controversy. The commentary explores the diverse meanings and contradictory commonsense beliefs that surround foreskin removal in the United States today. Considering (...) these parents' reflections—and their silences—can help us appreciate the real-life consequences of debates about the ethics of male circumcision. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ease of CareTravis CearleyRoughly nine years ago, I was deer hunting on a friend's property just outside of Canaan, Missouri, where he had graciously provided me access to one of his premier tree stands. It was early in bow season and even though the calendar had suggested it was Autumn, the weather mirrored a classic Missouri August morning, muggy and thick. Dressed in my lightest hunting gear, I had (...) just gotten settled—bow in lap, arrow knocked, binoculars ready—when I felt a stinging sensation in my calf. Slowly hiking up my pant leg so as not to make too many sudden movements, I saw a familiar yet harrowing sight: Seed ticks had invaded my socks, and I was covered from the mid-calf down with black pulsating parasites. I knew instantly (as many outdoorsmen know) that my hunt had come to an end. Somewhere on the hike down the hillside or the climb into the tree, I had stepped on a nest of ticks, and the rest of my morning was shot (no pun intended). I quickly clambered out of the stand, made my way back to my friend's house and proceeded to strip down in his front yard. Left with only one option, I placed all "infected" articles of clothing in a burn pile, took my naked self to the nearest hose, rinsed feverishly in his yard, and checked every inch of my body for burrowed residents. You see, removal—complete and thorough—is the only way to keep the tick from becoming an unwelcome guest, causing itching and burning, or even spreading disease.The seed tick is an especially menacing foe. He can be invisible to the naked eye. He is faster than you would expect. He travels in herds. However, all ticks, regardless of size, are capable of causing weeks of discomfort. This discomfort and concern multiplies based on where the tick chooses to lodge itself. You see, there is a spot on the base of a man's penis where the penis itself meets the scrotum—a private, quiet, warm and damp location—that is particularly enticing to the tick. As an avid outdoorsman and lover of nature, I have had my fair share of uninvited guests attempt to call this place home. Multiple times in my life, I have taken caution in the painstaking removal of ticks in all sorts of locations, and I will tell you, few tasks are more galling or difficult than removing one burrowed next to the crease of the scrotum just under the penis itself. It seems they are keenly aware of the small bit of extra skin that exists on this part of the male anatomy, and part of me believes that they are also aware of the difficulty it presents. [End Page 79]At the time of the Canaan seed tick attack, my wife was pregnant with our first son who was due to be born that coming December. I am now the father of three sons. As a family, being outside is our favorite pastime. We run, we play, we chore; and whenever we can, we spend time in the woods. Whether we are exploring the various state parks of Missouri or rambling through the treelines of the family farm, some of the happiest times we spend as a family include nature. Nature means bugs; and even as a veteran tick assassin, I wasn't really prepared for the painstaking process of removing one from my son's nether regions. A few shivers, a few gasps and more than a few tears—juggling the "Get it off me, dad" with the "Don't worry, Daddy does this all the time"—nothing builds trust like tweezing a parasite from another person's scrotum. It is these moments that also remind me of how thankful I am for the absence of foreskin.I am a circumcised father of three circumcised boys. My wife and I chose to have our sons "clipped" after their births and by a medical professional. When my wife and I discussed whether or not to have them circumcised, I consistently came back to the same thought: "What benefit could foreskin... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Declining Circumcision for My Premature NewbornDionne DeschenneIn 1993, I was pregnant with my first of three sons and was busy preparing for his arrival. Unlike most parents, who focus much of their time on decorating the nursery and buying supplies, I was researching the medical decisions that I would need to make in the moments and weeks following his birth. Having worked in a hospital while a pre-medicine student, (...) I had heard the cries of babies undergoing tests and procedures shortly after birth and knew I needed to be clear on the necessity of those tests and procedures if I was going to consent to them for my baby.My husband was in the Navy and out to sea for six months, so I took a few college courses to pass the time. One was a philosophy course on ethics, and I chose the bioethics of infant male circumcision as the focal point of my coursework that quarter. This allowed me to work through my findings in a racially, religiously, and age-diverse classroom under the guidance of a skilled professor. I was shocked to learn that even the American Academy of Pediatrics (AAP) at that time acknowledged that there were no known medical benefits that resulted from circumcision. How, I wondered, could parents allow their newborns to undergo such a harrowing experience for no reason?As the months passed and the birth of our first son grew nearer, I had everything ready—all of the decisions made, the doctors prepared, and the hospital selected. All of that preparation went out the proverbial window when I contracted pneumonia at 30 weeks. I was admitted to the Naval Hospital and treated for a week before being airlifted to a nearby Army Hospital when my condition worsened. After a few days there, the doctor came in very early one morning to wake me. Our son's heart rate was slowing, and we were at risk of losing him. They needed to immediately perform an emergency Cesarean section to preserve his life. I was terrified, knowing the potential myriad adverse effects his pre-term birth could cause.We were rushed into the OR and within seconds I had an epidural in my back. Moments later, my perfect, tiny but silent baby was whisked from the room to be attended to by a highly skilled and immensely respected NICU team. My husband followed to keep a watchful eye on our son while I was taken to Recovery. A few hours later, I was allowed to join my husband and son in the NICU.Our baby was beautiful, but so tiny that my husband could hold him in one hand. He weighed four pounds and had an enormous needle in the top of his head. The nurse explained to me that the IV needle was in the best location for administering the IV fluids and medications that our baby needed. His pre-term birth had introduced the need for several tests and treatments I had not anticipated. This was immensely distressing for me as someone who wanted to research and understand so that I could make well-informed and ethical decisions. Keep in mind that this was in the days before smartphones. In fact, we didn't even have cell phones at that time! In order to do research, I needed to find a medical text within the hospital that I could read, or get to a library. I had an abdomen full of staples, couldn't drive, and refused to be away from my baby, so going to the library was not an option.Under the conditions, I relied on the hospital staff to help me understand the risks, benefits, and necessities of each procedure or test that they recommended. We formed a relationship of mutual respect. I think this was due to the in-depth [End Page 89] conversations we had during that time. That mutual respect we developed likely led to a remarkable conversation toward the end of our son's first week in the NICU. Our doctor was making his rounds when a nurse asked if we wanted to have our son circumcised that day since the doctor... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:My Circumcision Decision:A Journey of Inquiry, Courage and DiscoveryLaurie EvansBefore becoming a mother, I was teaching parents to massage their babies and offering trainings for professionals. To promote my work, in 1984, I exhibited at the Whole Life Expo in New York City. When I returned to my booth after a break, I noticed someone had left a pamphlet by Edward Wallerstein, who wrote "Circumcision: An American Health Fallacy." (...) Since I am naturally curious, I read it. Disturbed, I thought of tossing it. But, how could I be teaching a nurturing technique for newborns and avoid this topic? As a Jewish woman, how would I make the decision for my own future sons? Little did I know this one piece of paper would lead me on a path of inquiry that would change my life.One of the presenters at this conference was Dr. Robert Mendelsohn, an Orthodox pediatrician. Although Dr. Mendelsohn realized some parents would allow circumcision for religious reasons, he was honest enough to dispel every medical myth and explain the harm of removing normal functioning tissue. He also described possible complications from removing the foreskin, including infection, hemorrhage, and although rare, death.To learn more, I read whatever I could find on the topic. I attended midwifery and childbirth conferences to promote my work and prepare for when I became pregnant. I decided to ask about circumcision, but the conversations were awkward and I received little helpful information. I found that circumcision was a taboo topic; few people wanted to talk about it. Why? Doctors who perform circumcisions, nurses who recommend it, and parents who consent to it do not want to face the reality of the harm they cause. Instead of facing the pain, they avoid the topic, and the procedure continues. Most men do not want to discuss or think about their own circumcisions. I learned that we need to have compassion during these conversations.A Jewish ritual ceremony (bris) is performed on the eighth day after the boy's birth, and includes circumcision and prayers. At a bris, friends and relatives are invited to observe and celebrate. It is part of my heritage. I tried to talk to my relatives about the information I had found, but everyone refused to discuss it. This avoidance made my decision very difficult. Then, for the first time, I was invited to a bris; I didn't want to attend. However, I had been at the boy's birth, so I decided to go to offer support. During the circumcision, my reaction was intense: I wanted to take the baby and run. I felt like an accomplice. I wanted to grab people by the [End Page E2] shoulders and scream, "How dare you?" I vowed I would never attend another bris, and I made the decision to write publicly instead of anonymously.I still had doubts, because I didn't know one intact adult male. What if I were to have a son, keep him intact, and he developed a complication later in life? I have learned that doctors are not taught non-invasive solutions, so most circumcisions performed after infancy are unnecessary. A Jewish doctor recommended a circumcision for a seventynine year old man who had a persistent rash that would not respond to treatment. Our organization suggested that he apply topical acidophilus. After he followed the recommendation, the rash disappeared, so he canceled the circumcision.In 1985, I became pregnant. Like many women I spoke to, I didn't want to face the circumcision decision, so I prayed for a girl. Our childbirth educator shared about male circumcision, which led to conversations with my husband. These tense interactions ended in an impasse. I wondered how this decision would impact my marriage. I experienced immense relief that my firstborn was a girl. Time was on my side.One day while walking in New York City, I serendipitously crossed paths with my childbirth educator. She was going to the United Nations to oppose female circumcision. I was in my 30s and had a master's degree in teaching. I had studied massage and anatomy. Yet, I had never heard about this tribal ritual. I had... (shrink)

Discharges against medical advice (AMA) make up a significant number of hospital discharges in the United States, and often involve vulnerable patients who struggle to obtain adequate medical care. Unfortunately, much of the AMA discharge process focuses on absolving the medical center of liability for what happens to these patients once they leave the acute setting. Comparatively little attention is paid to the ethical obligations of the medical team once an informed decision to leave the acute care setting AMA has (...) been made. Via a case narrative, we offer an ethical framework that we believe can help guide an ethically defensible AMA discharge process. By emphasizing our duty to provide the best care possible under the circumstances, we contend, our ethical obligations to promote the patient's best interests can still be met despite their decision to leave the acute setting against medical advice. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Circumcision:Ordinary and Universal in My CommunityAllan J. JacobsMy1 circumcision experiences are remarkable mostly for their ordinariness. My wife Danaë gave birth to our son Perseus2 while I was a resident in obstetrics and gynecology in a city where we had no family. Perseus was circumcised in a Jewish brit milah3 ceremony on the eighth day of his life, as were my wife's and my male ancestors back into ancient (...) times. We were relieved because Perseus had just recovered from a potentially serious condition. After a difficult forceps delivery, his blood bilirubin rose almost to the point where he might have developed the dreaded kernicterus syndrome. Kernicterus can cause permanent severe motor, intellectual and visual impairment. It was unclear whether he would be discharged from the hospital in time. He had to spend a week in restraints under a bright light whose frequency degraded bilirubin. Happily, he came home the day before the scheduled brit.Our four parents attended the brit. Danaë's father was the sandek,4 being granted the honor of holding our son on his lap during the circumcision ceremony. The mohel, or circumciser, was the local Conservative rabbi. We were mildly anxious because he didn't do many circumcisions in this city with few Jews. Perseus cried briefly after he was circumcised. The circumcision undoubtedly was far less stressful than treatment of elevated bilirubin. The circumcision certainly was less painful than the prodding and sticks for the many blood tests he had to undergo in the hospital, not to mention the pain of his difficult forceps delivery. Perseus did not seem to have much discomfort in his penis afterward, and had no circumcision complications.After the brit, our parents and my resident colleagues ate refreshments and chatted for an hour or so. A brit milah is a happy occasion, but not an elaborate one. It marks the end of the joy, anxiety, and excitement of the child's birth and its aftermath and is followed by the less exalted rhythm of feedings, diaper changes, and sleep deprivation.At the brit, our boys are assigned Hebrew names and confirmed in the Biblical covenant between God and the Hebrew people established between God and Abraham, and reaffirmed between God and Moses. Regardless of the historical truth of the formation of the covenant, it is accepted as a myth tantamount to [End Page 71] truth. In other words, regardless of its literal truth, such a myth is to be regarded as true because it concretizes God's demands or a moral truth. The covenant is real for me whether or not there was a historical Abraham. As with other religious commitments, the obligation to circumcise our sons is unprovable, but binding. On this basis, Perseus's ancestors on both sides were circumcised in brit milah ceremonies for many centuries into the past.My two grandsons were circumcised as well. Achilles was circumcised among friends and relatives. The mohel was an experienced obstetrician who was certified to officiate at a brit milah following the practices of Conservative Judaism. He administered adequate analgesia with topical local anesthetic cream followed by an injected regional block. Achilles slept through his circumcision, suffered no complications, and had little discomfort afterward. My other grandson had a circumcision performed as an infant outside the context of Judaism and is not being raised as a Jew.The two brit milah in my family were beautiful, dignified ceremonies, welcoming the infants into the Jewish fold, and bestowing their Hebrew names.5 Some of my relatives, including Perseus's son, had circumcisions performed in a medical setting without a ceremony. None of the many boys in my family had obvious short- or long-term problems with their circumcisions. My social circle has many Reform and Conservative Jews. I have never heard any Jewish man in my circle of acquaintances complain about his circumcision. Circumcision is a given. Problems are rare, and an exposed glans is the norm. Our men typically enjoy sex and have no difficulty in fathering children. Circumcision is part of the comforting cocoon of custom and tribe that helps to protect us as a group. It also reinforces Jewish endogamy... (shrink)

This commentary draws upon the author's experience in bioethics and as a physician, ordained Rabbi, and certified Mohel (a Jewish professional qualified to perform infant male circumcisions (MC)). People's identity and adherence to a religious belief are frequently cited reasons for deciding whether to circumcise their male children. For Jewish and Muslim males, circumcision is considered essential. In this commentary, the author uses his medical, religious, and bioethical knowledge, expertise, and experience to address common arguments used in opposing nontherapeutic male (...) circumcision of minors. In these narratives, half of the parents agreed with circumcision, and half did not. The parents against circumcision cite human rights violations, security, privacy, and bodily integrity issues and refer to circumcision as genital mutilation, while those who agree argue that circumcision should be done for religious reasons to prevent health issues, promote hygiene and cleanness, avoid cancer, or for later sexual enjoyment. After evaluating the evidence, the author states that parents should be free to either consent or decline MC for a son. Though a reoccurring theme in these narratives was for mothers to leave the circumcision decision up to their male partners, the author concludes that women have considerable power regarding the decision. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Mitzvah of the BrisThomas McDonaldHaving worked as a clinician in emergency medicine, internal medicine, and urgent care for a number of years, I've treated plenty of patients with skin infections. On a few rare occasions, some have casually mentioned that they were thinking about getting circumcised as adults to prevent reoccurring, frequent infections like Jock Itch. I think you're probably more likely to experience that kind of problem if (...) you're uncircumcised. Jock itch is a fungal infection, and fungus likes dark, hot, sweaty places on our bodies. These infections are nothing serious—they are just sort of annoying for the patients experiencing them.I have two sons—both were circumcised, but my experience as a clinician did not play a role in the decision. My sons' mother is Jewish, while I grew up Catholic. I attended a Catholic high school and went to religious education classes until I was confirmed [End Page 77] as a teenager. Both of my parents are pretty serious Catholics. I can't remember ever missing a Sunday service. I always thought any sons I had would be circumcised, even before I was married and before I married someone who was Jewish.When we were expecting our first baby, my son's mother and I didn't really talk about circumcision or debate whether we should do it or not. Is it more socially acceptable to be circumcised versus not? I'm not exactly sure why, but I think the answer is probably yes. It seems like circumcision is the norm in our society. My son's mother wanted our son to be circumcised too but thought it would be great to have a bris. With my Catholic background, I didn't know the details about what was involved with a bris at the time. She explained that a person comes to the house (or to a relative's house) and circumcises the baby. All the relatives attend. It would be a party! At the time, the thought of throwing a party at a relative's home to celebrate a circumcision was amusing to me. Before the conversation with my son's mother, I assumed that the bris was probably done in the hospital with everyone attending there. But she went on to explain that a person who is trained to do it—a mohel—does this work as their main job and makes sure that the baby is anesthetized and that sterile techniques are used.To be clear, I didn't ever think that my sons wouldn't be circumcised. I just thought it would happen in the hospital rather than in Baba's living room, followed immediately by a meal of deli meat sandwiches. But the bris sounded like it would make a nice memory for the family, so I agreed to it. I was always (and still am) interested in Jewish traditions. I think they're pretty cool, so I was all in. I assume there could have been some pressure from my son's mother's family if the bris was something I didn't want to do, but that wasn't an issue since I was completely on board.There is an episode of Seinfeld called "The Bris" in which Elaine and Jerry are nervous about the duties they must perform for a bris when they agree to become godparents to a Jewish couple's newborn. Elaine is charged with booking the mohel and asks Jerry, "Where am I going to find a mohel!" Jerry responds, "Oh, finding a mohel is a piece of cake. Any idiot can find a mohel. I have the tough job—I have to hold the baby while they do it! How would you like that job?"I don't know how much planning goes into a bris. Unlike Elaine and Jerry, I did nothing. I just showed up that day. If someone asked me how to find a mohel, I wouldn't have an answer. It's possible my son's mother found and booked the mohel, or her family may have set it up. They have roots where we were living at the time, so they may have gotten... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Proudly Jewish—and Averse to CircumcisionLisa Braver MossI've always had a strong sense of my Jewish identity—and I've always had grave misgivings about circumcision. It used to seem that these [End Page 86] statements were at odds with one another. Now I'm on a mission to integrate the two.I'm married to a man who's also Jewish. In the late 1980s, we had two sons, whose circumcisions I agreed to. Brit (...) milah (the covenant of circumcision) is intended as a spiritually meaningful act symbolizing the agreement between God and the Jewish people. But for me, the experience was so upsetting that I didn't feel God's presence. In spite of all the arguments in favor—the weight of tradition, wanting my boys to be accepted in the Jewish world, and so on—I came to regret my acquiescence.I began to explore reasons to question circumcision from a Jewish point of view, publishing articles in Jewish magazines and speaking at conferences. Rather than focusing on the medical pros and cons, I wrote about Jewish law and ethics, and spoke with many rabbis. I was hoping to deepen Jewish dialogue on this topic, which was oddly off-limits in a culture that values intellectual inquiry.Besides helping me understand more about Judaism, my research and writing was a way of living with my guilt. I had succumbed to—and put my boys through—a tradition that went completely against my maternal instincts. This schism had made me doubt myself as a new mother. What kind of parent was I if I couldn't be a fierce protector of my newborn baby? It was not a positive or welcoming way for me to enter into motherhood.I blamed myself. I hadn't done medical research before my boys were born, trusting instead in the longevity of the tradition and the claim that circumcision is more hygienic. I bought into the medical justifications for circumcision—all of which, I later learned, fail to acknowledge the erogenous nature of foreskin tissue and its physiological function. If I'd known more; if I'd thought more deeply about infant trauma; if I'd taken my own spirituality more seriously—I would have fought for a different outcome, despite the pressure I felt as a Jewish person.Years went by. I wrote a novel about Jewish circumcision, then co-wrote a book of alternative bris ceremonies for families opting out of circumcision. Slowly, I came to understand that blaming myself for agreeing to circumcise my sons was not only a waste of time, but also missed the larger point. I'm not alone in my objections to this ancient tradition. Indeed, many Jewish parents get through the event with white knuckles, emotional detachment, alcohol, or sedatives rather than with genuine religious feeling. Shouldn't their spiritual authenticity matter? Shouldn't mine have mattered?In Judaism, every commandment (of which circumcision is one) should be approached with kavanah, or spiritual intent. Thus, my non-spiritual feelings about the circumcision tradition are problematic from a Jewish point of view. I should have been able to tell the rabbi I didn't really believe circumcision was what God wanted me to do. I wish I'd been guided in coming to a decision that reflected my actual spirituality. Instead, all that seemed to matter to anyone was getting the deed done.Going against my instincts and spirituality was not just my failing—it also represented an institutional failing. Jewish leaders and rabbis aren't trained to respond compassionately to those averse to circumcision. Even parents merely questioning the practice may be subjected to judgment, lectures, and condescension. Parents deciding not to circumcise may face all that and more: in some synagogues in the U.S., boys that have not been circumcised are currently being denied bar mitzvah.________In the Jewish world, we tend to look upon circumcision as the one monolithic tradition: we assume that every Jewish male is circumcised and that no one talks about or questions this. The truth is that throughout our history, there have been males who, for various reasons, did not undergo the ritual... (shrink)

Newborn male circumcision has potential benefits and advantages as well as disadvantages and risks. Families will at times have medical questions regarding newborn male circumcision that clinicians must be prepared to answer.

In lieu of an abstract, here is a brief excerpt of the content:Surprised DivideAnonymous OneAnonymous OneNot long after our daughter was born, my wife and I were expecting a son. We were busy new parents, so her pregnancy with our second child went by quickly and without a lot of the fuss that a first pregnancy brings. To our surprise, our son was born a few weeks early but aside from a little jaundice he was a happy, healthy baby.My parents (...) were caring for our daughter while we were at the hospital. After my son's birth, we were excited for them to bring our daughter up to the hospital to visit her new baby brother. The hospital photographer came by and took photos of our two kids together and photos of our son swaddled and sleeping soundly in a basket. Other family members stopped by to meet the new baby as well. It was a happy time.Little did we know that a couple of hours later we would be faced with a communication breakdown. My wife and I usually pride ourselves on how well we are able to communicate and plan our future.I grew up heavily Catholic, attending parochial schools through high school graduation. Meanwhile, my wife's family are Unitarian Universalists. You could not have two more polar opposite religions! We are used to having different points of view. We have always talked through many of life's choices and have both had to make compromises in order to have a successful relationship. It was on that happy day of my son's birth that we discovered we forgot to discuss one important topic.As our family was gathered in my wife's hospital room, joyfully celebrating the newest addition, the doctor entered the room to check on my wife and said it was time to do the circumcision if we wanted.Without hesitation, I responded in the affirmative, then the doctor and I looked over at my wife, who was staring at us with saddened, conflicted eyes. I was confused. Didn't she want the same thing for our son that I did? Surprisingly we never discussed this decision, at least not that I remember. I don't recall her ever telling me she was against it.My wife stated that she wasn't prepared to make a decision because she didn't know what our son would want and she was worried about him experiencing pain. She worked hard for 9 months to grow this baby boy, and he was so little. I understood her anguish in the thought of letting someone alter his tiny body.I am circumcised myself. My background provided me guidance and an expectation that this would be happening, so it was a nonissue for me. I never considered a scenario in which my son would not be circumcised. In truth, it felt ridiculous to even contemplate not circumcising him. My words of reassurance that it would be fine and my explanation to my wife that this was just one of the many decisions we would need to make for him and our other child did little to settle her.It was clear that no one (including me) had discussed this with my wife prior to this point, which was unfortunate. The doctor described the process and tried to reassure my wife that it was a safe and minor procedure. This still left my wife in a conflicted state. The other men in my family there visiting at the time chimed in to reassure my wife that this is what our son would want. She reluctantly agreed to the circumcision, giving in to peer pressure I suppose. I'm confident that an alliance of circumcised men telling her that our son would also want to be circumcised is what swayed her. Frankly, I'm glad they happened to be there when the doctor stopped by to help back up my position.But while our son was out of the room undergoing his procedure, my wife remained conflicted and saddened. We were both surprised at each other's response. My opinion on this was coming from the position of expectation and tradition, while she was worried about not knowing... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Circumcision and Regrets from the Mother of Three SonsMaría Viola SánchezI am a psychologist and a radio talk show host for 25+ years. Both of my parents spoke English as their second language. I was raised by immigrants who demanded that "we speak English because we are Americans." I have four adult children, three sons, and a daughter.I gave birth to my children in the mid-80s. They are very (...) close in age and remain dear friends to this day. While I was a professional with a career when my children were born, I took a leave to work part-time and largely, to be a stay-at-home mother for nearly ten years. I was very involved with all their academic and extracurricular activities. I became a single mother when they were 2, 4, 6, and 7 years old, which served to redouble my parenting efforts to compensate for the absence of their father.My dirty secret is that I circumcised my three sons. I did so out of sheer ignorance. I am ashamed and deeply saddened by my decision at the time of their births. This is a burden that I will live with for the rest of my life. Something that I took away from them and that I can never repair.Here's the justification for my ill-informed decision. My father was circumcised, my two brothers were circumcised, and my then-husband was circumcised. I blindly assumed all males were to be circumcised. Further complicating the circumstances surrounding their births and the decision to circumcise them is the fact that their father is Jewish. He most likely would have given me pushback on not circumcising our sons, even though we had agreed to raise our family as Roman Catholics, my religion.After delivering my sons, I was asked, "Who would you like to circumcise your son?" My reply was, "Who has performed more of these procedures? And please bring my son to me to nurse after you have finished." Not one person, not one family member, not my son's father, any healthcare providers, not my pediatrician, or my OB/GYN asked me, "What are your thoughts about circumcising your son?" Had I been asked that question, I might have pondered the concept that there was a decision to be made, not a procedure that was necessary, as is the case with cutting the umbilical cord. When my infant sons were brought to me to nurse, they were sobbing so violently that they were unable to latch on to my breast. One can only surmise that no numbing agents were applied or anesthesia given, further compounding my burden of responsibility. Imagine their trauma!Over the course of my radio career, I hosted a program for an American non-profit national media organization, and one of my guests, Steven Svoboda, was scheduled to promote his newly founded organization, Attorneys for the Rights of the Child (ARC). Steven has remained a colleague. I've interviewed him a dozen times over the decades to promote ARC's amazing work. Steven is the one that first opened my eyes to the ridiculousness of male circumcision. Subsequently, I now understand that circumcision is unnecessary, not medically mandated and that the procedure denies males their [End Page E1] right to genital integrity. What I have also learned is that the removal of the foreskin is the most important sensory component and it is comprised of thousands of Meissner's corpuscles as well as branches of the dorsal nerve and in between 10,000 and 20,000 specialized erotogenic nerve endings of several types.I have since apologized to my adult sons for the uninformed and ignorant decision I made after they were born. Two of my three sons have gracefully accepted my apology. The other son says that he's glad that he resembles both his father and most of his male peers.I have become such an "intactivist" that I earned my Ph.D. in Psychology, and my dissertation concerns itself with Female Genital Mutilation (FGM) and its eradication. To know that 200 million females who are alive today have experienced FGM is another responsibility... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Brit Milah for Eliezer Herschel ben Yonatan AryehMolly SinderbrandFor observant Jews, the choice to circumcise one's son is not a choice. Technically, it is a contractual obligation; the belief is that male circumcision is part of a holy covenant with God. The word for ritual circumcision, brit milah or bris, literally means "covenant [of circumcision]." Circumcision is a physical symbol of a relationship with the divine. It is (...) the commandment that encompasses all other commandments. It is, thankfully, only required of men (women, they say, are naturally closer to divinity). Circumcision is when a baby boy enters the Jewish community, eight days after birth, and when he gets his name. He becomes somebody. To choose otherwise— and some may choose otherwise—is to choose not to be part of the contract, and by extension, not be part of the Jewish community. And a community is one of the most valuable things a person can have.I was not always an observant Jew, though I was raised in a Jewish household. I essentially fell into observance over a period of 10 years, starting with studying ancient Hebrew with a language-loving rabbi in high school and eventually leading to weekly attendance at an orthodox shul, which I joined shortly after first tasting the vegan cholent at kiddush. It was much easier to make friends in [End Page 91] the Jewish community than in my competitive and mildly misogynist graduate program, and frankly, I liked them better. I received kindness and support when I needed it, and gave it back equally, especially around having children. Having children is difficult under any circumstance, but it is especially difficult in social settings where it is seen as abnormal, strange, or even selfish. The Jewish community normalized having children and created a respite from the judgment of the secular world. When I was pregnant at work, I got comments like "It looks like you're having twins!" and "Are you sure you don't have pre-eclampsia? You look awfully large"; at shul, I got pep talks, encouragement, and the traditional "b'sha'a tova"—"may it happen at a good time."Eventually, after having two kids in a two-bedroom rowhome, my husband and I moved to a mostly-Jewish suburb just outside the city. It is the kind of place where everyone says "Gut Shabbes" (a good Sabbath) to each other on Saturdays, but not one in which all the men wear black hats and study Torah all day (though some do). That is, folks live Jewish lives, but interact with the outside world as well. After a few months, it felt like home.This was the context in which I decided—or rather, did not have to decide—to circumcise my son. It was the natural result of the decision to be part of a community that places value (and even membership) on the ritual of circumcision. I made that decision years earlier and have been continuously reaffirming it since. Every day I wake up is a day I decide to be an observant Jew, and I decide to do so in order to be a member of an observant community. The decision to circumcise was yet another decision to be part of that community, which has given me so much joy, support, and meaning. Why would I deny my son—and myself—that community?In addition, not needing to make any decisions was itself a kind of relief. I have heard of mothers—including my own—off in a room crying, needing comfort, unable to be there for the circumcision. That did not happen for me. Despite a history of rather severe perinatal depression and anxiety, including suicidal ideation less than a week before the event, I was completely fine. Maybe my comfort came from the fact that I already had two children; this was not my first newborn, though it was my first bris. Maybe, after almost two years of COVID, circumcision did not seem like such a big deal. Maybe I was just glad someone else would hold the baby for a while. But I think at least part of it was the happiness that... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When the Political Becomes Personal:Circumcision as a Cause and as a Parental DecisionJ. Steven SvobodaAs I prepared for the arrival of my first child, a son, a central activity that I previously saw as political suddenly also became very personal. I had founded a non-profit organization in 1997 devoted to educating the world that genital cutting of a child, regardless of a child's gender, is unnecessary and harmful. This (...) includes male circumcision. In 2001, as part of my non-profit work I led a team that went to the United Nations in Geneva and for the first time, put the issue of male circumcision as a human rights violation in the United Nations record. At the time, my then wife was pregnant with our first child, a son. (I had the ultrasound photo of my son-to-be on my nightstand while in Geneva.) Now the circumcision question would be posed to me!A few months after the Geneva trip, when it came time in early 2002 for my son's birth on the US territory of Guam, I naturally was never going to agree to the procedure. Nevertheless, I was trying not to inject my own beliefs into the arrival of my first child. My children's mother, while Jewish, is a pediatrician who always had some doubts about the wisdom of circumcision and easily agreed with my desire to keep our son intact. No one in either of our families had any serious problems with our decision.The nurse at the hospital in Guam where my wife worked and gave birth asked me a total of five separate times if I wanted my son to be circumcised. Each time, I answered, "No," without saying more, until the fifth time, when I politely added, "You do know that there is no medical reason for this to be done, right?" The nurse replied in a chirpy voice, "I know." I then asked, "Why do you ask parents about it then?" She replied, "Because they want it sometimes." Well, the odd thing about that is there is no other medically unnecessary procedure on their children for which parents are repeatedly solicited. And if I had agreed even one time, I am sure that my child would have been circumcised [End Page 73] without any follow-up questions to make sure I really wanted this done. Besides, at least in the absence of any medical condition making it necessary (which is essentially never the case), it should not be my decision to make, nor his mother's, but rather the child's whose body it is.The oddest aspect of this whole chain of events may be that I was not given a single shred of information explaining why I should support my son being cut. My son had zero issues after being left intact, and how could it be otherwise? My advice, naturally, to parents expecting boys (or girls, or intersex children, for that matter) is to educate yourself. You will learn, the more you look into these issues, that there are thousands of people around the world, including countless physicians and other experts, who believe childhood circumcision is as outmoded, useless, and as harmful a practice as footbinding. Why not leave the choice for the child to make about their own body? No asserted medical reason withstands the most minimal scrutiny. And religious claims must stop at the boundaries of another person's body, even if the person is your child. Parents: you have the right to teach your children your beliefs, but your children may not follow your beliefs, and they have the right to make their own decisions, so please consider refraining from marking their bodies with your religion. Two months to the day after his birth, I was holding my son in Washington, DC, having just traveled halfway around the world from Guam. (I was in DC to receive the National Organization of Circumcision Information Resource Center's (NOCIRC) Human Rights Award, which I was presented with for my founding of the non-profit.)My own experience with circumcision strongly influenced my decision. For a decade, I felt that no other single... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Difficult Road to Deciding on CircumcisionAnonymous TwoAnonymous TwoWhen I got my results back from my noninvasive prenatal testing, NIPT and found out I was going to have a little boy, one of my first thoughts was, "I don't want to circumcise him," which sounds silly because I just found out the gender of my baby and my first thought is about his genitalia. The idea of growing and (...) carrying this perfect little baby for nine months and then hurting him was unthinkable to me. I simply did not want to hurt him. The idea of it made me feel sick. Anytime the subject came up, I would protectively put my hand over my belly. And I do admit there were a lot of times I wished I was having a girl so I didn't have to deal with the circumcision debate.There was a lot of conversation between myself and my husband about it. My husband was adamant about getting it done. He referred to uncircumcised penises as "snake penises" and said our son will be made fun of for being different. He said it would be easier for him to clean and when he's old, he won't have to worry about infection. I would counter with, "well what if he falls in love with a girl from a culture that doesn't circumcise? She will think his penis is weird." The more we talked about it, the more ridiculous it felt thinking that far in advance and all these hypothetical situations he might get in over his penis. My parents wanted it done for religious reasons, but that wasn't a factor for me. My mom kept saying it's in the Bible and it needs to be done. My boss is Jewish and she joked that I could just convert to Judaism and the choice would be taken away from me so I didn't have to stress over it. Everything I read on my mommy groups and sites like Reddit called male circumcision child abuse and stated how barbaric it was. Terms like "genital mutilation" were thrown around a lot, and I didn't want to be part of a group that was seemingly looked down upon by so many.I spent my whole pregnancy saying how much I did not want to circumcise my baby. About a week after he was born and we were starting to get settled, my husband started to call around trying to get him an appointment for circumcision. It was unusual to do it this way, as typically it's done when babies are still in the hospital. But the hospital wasn't doing circumcisions because it was elective, and they weren't doing elective procedures because of COVID. At his first doctor's appointment, I talked to our pediatrician about it. She is Indian and told me she didn't circumcise her boys and said that it was very normal in many parts of the world to not do it. I would watch her pull back the skin to check it for fibers and think, "Is it really that bad to keep it? It's just skin." Our pediatrician didn't do it, as she doesn't perform procedures in the office, and she gave us some names of doctors that were supposed to be doing it. My husband called them all and none of them were doing circumcisions either. Finally, my husband found a doctor, but he was booked out for almost a month and a half. With no other option, we made the appointment. I was not thrilled about it, and made my husband do all the calls and arrange it because I did not agree with it.What made me change my mind about circumcising him was I didn't want him to be different. My husband assured me this was the best choice and he was very concerned our son would be bullied for being different. I have a good friend that is a nurse in a long term care facility currently. I called her and asked if it was really that bad for old men to care... (shrink)

This symposium includes twelve personal narratives from parents about making the decision whether to circumcise their infant male children. The authors of the narratives include five fathers and seven mothers. Nine of the 12 parent authors opted to circumcise their infant sons, though the reasons they stated for doing so varied. Most of the parent authors relied on cultural or social beliefs, religious guidance, or a desire for sameness with the infant's father. Parents who didn't circumcise their male infants discuss (...) their convictions about autonomy, bodily rights, and the medical benefits of circumcision versus the harm or pain caused by the procedure. The symposium includes four expert commentaries on the narratives that are informed and enriched by the commentators' expertise in pediatric bioethics, healthcare ethics, gender studies, Jewish law and tradition, and the medical and surgical techniques of circumcision. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:To Cut or Not to Cut?That is the QuestionTracy WilsonWhat is circumcision? In simple terms, it is the removal or excision of the foreskin of the penis. Seems so simple, right? In some families, it is that simple. In other families, it is a religious exercise. I am a doctorally-prepared Family Nurse Practitioner and started my nursing career in the NICU. I have seen my fair share of circumcisions. (...) As a nurse, our role was to prep the room with whichever instrument the OB/GYNS preferred and then soothe the baby. Some OB/GYNS prescribed Sucrose, which is ultimately sugar water, for the babies to have while undergoing circumcision, while others wouldn't prescribe anything. What I learned in the NICU and by watching circumcisions being performed was that the doctor's preference determined the pain management protocol. Some doctors cared more about pain control, some cared [End Page 85] about presentation and ensuring the foreskin was cut properly, and some were just old school and had their preferences. I wanted to comfort the baby and make his world as comfortable as possible.Watching circumcisions being performed, I never formed an opinion about them. I really looked at circumcision like any other procedure. However, I did see some parents really toil over the decisions, especially fathers who did not want to "see their son tortured or mutilated like that" as one told me once. I didn't quite understand the comparison to mutilation, but I understood why he did not want his son to go through the procedure. It wasn't until years later that I understood the gravity of the decision when I became pregnant with our son and knew immediately it was a boy. Call it a mother's intuition, but I just knew. To circumcise my son was never a decision I had to deliberate very long because it was something I was accustomed to in my family. It wasn't until one of my relatives got married and had her first son that I became aware that this would ever be a weighty decision for someone in my family.I took it for granted all those years before working in the NICU because circumcision was superficial to me. I realized that it's not just a piece of foreskin to many people. For some circumcision is done for religious reasons, for others making the choice to circumcise is about sameness, or hygiene. For my extended family member, it happened to be about sameness. She didn't want her sons to look different from their dad. Since potty training was mostly going to be taught by their father, they wanted their sons to look like him. Many NICU parents told me they wanted their sons to look like their fathers, so this notion was familiar to me. After my extended family member explained why sameness mattered, I understood the reasons why some parents felt this way.There are other stories like this which we pondered upon when we got pregnant with our son, and I really began to reflect on whether we should circumcise or not. Then two additional frames of thoughts arose; one, I ensured that my husband and I jointly made the decision together, but I really leaned on him for his opinion because he was a male and most of the male teaching would come from him. Second, we considered if the decision to circumcise should come from him once he became an adult. His father and I discussed whether he should have a choice regarding being circumcised. He may have chosen a different decision than us and we didn't want to take away his right to choose. However, waiting to have a circumcision as an adult comes with its own sets of challenges, including the possibility of infection, increased pain, missed work, edema, etc. So, ultimately, we made the decision to go ahead with the circumcision.In our case, our pediatrician performed the circumcision. I asked him explicitly which instrument he used because I had my preference, and I was not going to allow my son to be circumcised by a healthcare professional that did not use my... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Transformation:Power in Persistence and PerspectiveTyler BendrickWe've got another meth napper," my resident stated. With an introduction like that, it is hard not to be immediately labeled as a "difficult patient." Being the only Spanish-speaking person on the team, I, a third-year medical student, became the primary point of contact for this severely injured patient. He was an only-Spanish-speaking, 36-year-old male admitted [End Page 7] to our trauma service (...) after he was hit by a truck while riding his bicycle. Unbeknownst to me at the time, the 14 days I spent caring for this man would become one of the most pivotal learning experiences of my medical school career. It changed not only how I understand and approach "difficult patients" but expanded my knowledge of the complexities and challenges of the current healthcare system and how we, as physicians and healthcare providers, can deliver the best care to patients with low health literacy and limited resources.So, what is a "meth napper?" I questioned. "Well, meth is a super stimulant," my resident explained. "When people are frequent meth users, they get used to functioning normally with high levels of stimulants in their body, reducing the normal regulation of wakefulness. When the amphetamine is removed (such as upon admission to the hospital), the body is left to fend for itself, and thus patients oftentimes sleep for 23 hours a day for about 3 to 5 days while their body works to detox and normalize hormones."As predicted, my new friend, "Joe," was napping when I first went to see him. Thinking back, the word "napping" does not accurately describe his level of somnolence. He was virtually unarousable, and I took to a sternal rub to wake him up at 5 a.m. after his traumatic exploratory laparotomy the night before. Once aroused, he was furious. "Estoy bien. Tengo dolor y tengo hambre," he grunted at me. (I am fine, and I am in pain and hungry!). "Ok, Joe," I replied in Spanish, "I am just going to do a quick exam and you can go back to sleep. We will give you medications for your pain. You had a big surgery on your intestines, so you cannot eat or drink right now. If everything goes well in the next couple of days and you start walking around, we can advance your diet." He begrudgingly let me examine him, never opening his eyes, and I left and went about my day.We continued this routine for five days. I would periodically check on him and usually found him sleeping. When awake, he refused to work with physical therapists, get up and walk or go to the bathroom, shower, use his spirometer, or converse with the nursing staff. He seemed completely disinterested in recovery. About day three, we slowly advanced his diet to clear liquids so he could quench his thirst. Sometimes his wife was there, and she would ask for updates, to which I could only reply, "We have to wait until he is more awake or willing to work with us." I was getting frustrated, as it seemed that his noncompliance was becoming his barrier to discharge.But on day six, everything changed. I went to check on Joe, and he was wide awake, vomiting, and irate. He shouted that he was in incredible pain, and his incision was wet. He was also complaining that he had not eaten in five days, and was insisting that we were starving him. Again, I calmly explained (as I had multiple times a day for the past five days) that his major abdominal surgery prevented us from feeding him until his intestines healed. We were giving him fluids and nutrition through his IV lines, so he was not starving to death. I rushed to get my resident to examine his oozing wound, and after a CT scan and an x-ray, we discovered what we feared: His wound had opened down to the fascia, "dehiscence," as it is called. On top of this, he now had a bowel obstruction, causing his vomiting. His lack of mobility for the past five days had slowed his... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:You Can't Say "No" to That!(A "Difficult Patient" Story)Ingrid BergAs a sequela of COVID-19, my rural Wisconsin hospital has been jam-packed for months with patients for whom we routinely provide care and many for whom we do not. An exodus of health care workers and other constraints have made the transfer of critically ill patients very difficult. In this disquieting "new-normal" of our work life, we routinely must call (...) bigger cities throughout our state to find beds for complex patients.So, it was not surprising when a young patient, an IV drug user in sepsis from a heart infection, was admitted to me in the middle of the night. In less disheartening times, before the pandemic, this patient would have been transferred promptly to the big-city hospital. Now, though, the possibility of finding an open bed is next to impossible. Resigned, I placed admission orders, continued antibiotics and fluids, and crossed my fingers. Then the unexpected happened: a bed opened up, and we could send her at once!The patient had a harsh heart murmur. It was likely that a "vegetation" was clinging to the valve, between the right upper and lower chambers of her heart. A vegetation is a clump of debris, such as platelets, clotting proteins, and bacteria that is a menace to the body. Her chest imaging looked like her infection had already spread to her lungs.A definitive diagnosis for endocarditis requires a special ultrasound with a probe that goes down through the esophagus, a procedure performed by cardiologists. It's a serious infection, one that requires weeks of IV antibiotics and is best monitored by infectious disease specialists. Sometimes, cardiothoracic surgeons are called upon to strip away the infection at the site, depending on how badly the valve has been slayed or the size of the vegetation. My only recommendation for a young, otherwise healthy patient in this scenario, is transfer.All of these reasons for transfer were lolling around in my tired head when the night-time [End Page 14] nursing supervisor approached me and said, "We have a problem." When the patient was updated about the transfer, she balked: "She says she is tired and refusing to go," the supervisor began. "She doesn't feel like getting into an ambulance in the middle of the night and she doesn't care if her condition is life-threatening. She knows we can't force her to go and she will only talk about it again in the morning."The cartoon version of myself at that moment had bugged-out eyes, a dropped jaw, fists tight and clenched at my sides, and steam coming out of my head. I can look past a patient's self-neglect, poor medication adherence, abysmal communication, alcohol and drug addiction, and other crimes. But saying no to a bed at a tertiary care facility? Unacceptable!I marched down the quiet hallway and into her room. She was lying on her side, facing the door, one IV in a thin arm. I was confident I could reason with her once I explained the scarcity of beds and the medical necessity of transfer. But she was having none of it. I was calm until I could no longer maintain my cool: "You can't give up this bed!""Maybe in the morning," she insisted, yawning. "But not now. I am tired and want to rest!""But there might not be a bed in the morning," I countered. "And your infection can be life-threatening." (This is true, but we both knew she wasn't dying at this very moment.)"I am not going anywhere!" She raised her voice and then closed her eyes.And she was right. I had no choice but to keep her. I could not kick her out of the hospital because she was making a poor choice, and I was frustrated for having to manage the fallout of that decision. Giving her antibiotics and fluid boluses to bolster her blood pressure was certainly within my scope of practice. And fretting. Fretting is always within my scope of practice; not that my scope of practice matters when all the big... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:My Patient, TeacherMarissa BlumI remember meeting Beatriz about 12 years ago when security was called to her office visit room by the fellow doctor-in-training who was seeing her. She was yelling loudly about her pain medications, causing a terrific commotion. I stepped in to relieve the fellow and tried to calm her down and move the visit along without anyone getting hurt or further upset. And from then on, (...) Beatriz was moved to my schedule from the fellow's for her monthly visits for her knee pain and refills of fentanyl and oxycodone. She had terrible knees and walked with a cane, almost always accompanied by her son. At one point, she came to our clinic asking to be seen but couldn't, and then fell onto her knees and rolled onto her back in the wait-room, clutching and waiving her cane, expelling expletives and railing at anyone who wanted to help but denying them that privilege. It was as though she relished exposing her pain and a lifetime of hardship for all to confront. I came down from my office to talk with her and when I couldn't convince her to get up on her own, we called EMS to assist and they took her away in an ambulance.For the first few years, I recoiled seeing her name on my schedule each month. I knew I would have to endure a barrage of labile emotions and complaints not just about her constant pain and feelings of inadequacy of her pain medications, but also about her other doctors and how they don't respond to her, or about how the rest of her family shows no care for her. Initially, these visits were hard because they were unpredictable and Beatriz also had bipolar disorder and maybe borderline personality too. I never knew which type of Beatriz I would walk in to see: Angry, tearful, lamentful, and all of those faces were difficult for me. But we met every month for years. During those visits, which almost always were attended by her son, who quietly sat by to either gently rebuff or passively agree with her, I learned so much about her and her very hard life. She was left to raise two children alone, unskilled and ill with hepatitis C, which led to liver cancer, followed later by breast cancer. She chose not to pursue additional therapy for breast cancer, expressing a fatalistic view of her life and intimating she in some way deserved the ailments that she developed. She saw me for disabling knee and hip arthritis that took away her independence and ability to scale the outdoor steps to her second-floor apartment and required the assistance of her son to dress, bathe and care for her. Beatriz never knew this, and I didn't share [End Page 18] it with her, but on one of my early morning drives into North Philadelphia, I saw her on a sun-baked unfriendly street, struggling to move around with her walker. She had many reasons to be angry, and the 30 minutes I spent with her every month became a catharsis for her to unload all that she felt.During my medical training, I encountered hundreds of patients—mostly all in the hospital setting—who might be characterized as difficult and understandably; no one who is relegated to the hospital setting, acutely or chronically ill and requiring inpatient care, could possibly be in the best mood of their lives. Somehow, it was easier for me to care for patients in these snapshot encounters that I controlled. I dictated my time in the room and didn't necessarily have to encounter the same challenging patient longitudinally, which made certain encounters much easier to bear. I realize now I wasn't fully processing the burdens carried by these patients in a way that enabled me to be a compassionate and fully present physician to them. It was an adaptation to the fast-paced life of residency, where one just has to get the job done and move on to the next task without time to process or reflect on difficult patient interactions. This is a... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:It's Not Always Just a RashAdam BossertI looked at the emergency department track board and saw a patient waiting for a provider who was "roomed" in a hallway stretcher with a chief complaint of a rash. I briefly considered his ultimate disposition, "He's probably fine. He can't be that sick if he was triaged as safe for the hallway." I was tired and close to the end of an (...) overnight shift and thought he would be a quick turnaround, likely discharged, since rashes are typically benign. I walked over to his stretcher after a quick chart biopsy that highlighted his mildly increased heart [End Page 24] rate on arrival as well as his history of polysubstance use and homelessness."Hey doc, I don't feel so good.""I'm sorry to hear that. What's specifically bothering you?""I am itching all over with these bumps. My skin is red, and I also think I'm withdrawing since I have body aches and chills."The interview continued.I discovered his last heroin use was approximately eight hours prior to arrival. I thought he was an ideal candidate for buprenorphine since he was actively withdrawing. I was recently licensed to prescribe this medication and excited to use my license for the first time. He declined the suggestion, however, preferring methadone instead. Buprenorphine can precipitate withdrawal if not given long enough after opioid use or if an incorrect dose is given; thus, many patients are hesitant to take it. He also stated he was predominantly here for his rash and did not want rehabilitation placement. I ordered our initiation methadone dose as well as a screening COVID-19 test and a urine drug screen test, which are both needed for rehabilitation placement in case he changed his mind.His rash was highly suspicious for scabies. He was covered with red bumps that spared only his face, some in linear distributions, and was actively scratching his arms and legs during the interview. I prefer oral ivermectin over topical permethrin for the homeless population simply for ease of administration, lower cost, and increased compliance. He received ivermectin for his scabies and knew he could return to the emergency department for a repeat dose if he was unable to fill a prescription.What happened next is, in my experience, an all-too-common scenario.The patient told me that the methadone is "doing nothing." I explained he could no longer take buprenorphine since he already received methadone, which only made him more frustrated. Unfortunately, I am restricted with the amount of methadone I can give in the emergency department, largely due to the drug's long half-life, and thus I was unable to give him more, let alone attempt titrating to his tolerance.Opioid withdrawal is not a life-threatening diagnosis; these patients are not typically admitted to the hospital. The management consists of initiating either methadone or buprenorphine, symptomatic treatment and then outpatient referral or rehabilitation placement. I explained the options to him, and he requested to be discharged since he was deferring rehabilitation. He was discharged. I was able to treat his rash but his chronic illness, opioid use disorder, was not controlled.I discharge a patient in opioid withdrawal or who has opioid use disorder almost every day, and I think most emergency medicine physicians would echo that statement. The disposition is not wrong from the perspective of the individual physician, but it feels like the system has failed these patients when I think of the frequency that they return and their baffling risk of overdose. The latter can be reduced by giving patients Narcan, the drug to reverse opioid overdose, upon discharge but this is just placing a bandage over the problem and not all emergency departments can fund this risk-reduction tool.I saw my patient's COVID-19 result return as I wrapped up my shift. It was positive. And, of course, he was in our department's hallway the whole time, only intermittently using his mask. I suddenly realized that while yes, he was withdrawing, he also may have had a symptomatic COVID-19 infection! I quickly reopened his chart, only to... (shrink)

Abstract:A placebo is an intervention that is believed to lack specific pharmacological or physiological efficacy for a patient's condition. While placebo-controlled trials are considered the gold standard when it comes to researching and testing new pharmacological treatments, the use of placebos in clinical practice is more controversial. The focus of this case study is an undisclosed placebo trial used as an attempt to diagnose a patient's complex and unusual symptomology. In this case, the placebo was used not just as a (...) treatment, but as a diagnostic intervention in order to determine the best course of treatment for a patient. Could the deceptive use of a placebo be justified in clinical practice on the grounds of beneficence? (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Positive Change in Perception and Care for a Difficult PatientMelissa CavanaughIf you asked any healthcare professional if they had ever cared for a difficult patient, I am certain the answer would be a resounding "Yes!" I have encountered many over my forty-two years as an RN. The story of Ms. E. is one of exceptional challenge and, I hope, success.I met Ms. E. in 2012 when I took a (...) nursing position in an outpatient primary care Geriatric Clinic. The clinic was located within an inner city, Level 1 Trauma health system whose mission is to care for the underserved. This organization had cared for the most vulnerable in the area for decades. The clinic model is unique in that it provides a "one-stop shop" for the common medical needs of the older adult. Other specialties, including podiatry, rheumatology, dementia care, and stroke, held appointments in this clinic area. The supporting staff team members assisted in each of these clinics, leading them to interact with the same patients frequently.Most of my previous experiences had been in inpatient units with a quick turnover of patients. There was no time or need to develop a long-term relationship with the patients in these settings. However, the comprehensive services found in this clinic coupled with the low staff turnover, led to a stable group of seniors receiving care in this office. Many of these individuals had been attending this clinic for over twenty years.I heard about Ms. E. before I ever met her. She was well known to the clinic team as a "problem" patient. The general response when she was on the schedule was eye rolling and audible moans. I soon learned that in addition to her scheduled visits, she would randomly appear outside the full glass interior doors. She would hover in the area, tapping on the glass to get the attention of a staff member. She did not hesitate to interrupt staff and other patients to make her needs known when she was in the exam room hallway. Often team members would scatter and hide to avoid dealing with her. If she was not in the building, she was on the triage line with a question or physical complaint. To complicate matters even further, her husband was our patient as well, and they always attended appointments together.Ms. E. suffered from common geriatric chronic diseases such as hypertension, diabetes, and osteoarthritis. Her morbid obesity complicated her diagnoses. Though she was able to safely ambulate with an assistive device such as a cane or walker, she routinely used a motorized chair. She and her husband admitted visiting fast food restaurants often even though they had met with a dietician for counseling on several occasions. They often requested help obtaining medications, yet related stories about visiting the local casino. Ms. E. spoke with a small, weak voice that added to the countenance of helplessness and pity. Unfortunately, these behaviors of noncompliance, attention seeking, and dependency on others extended to her immediate community, and she is estranged from family and friends who may have been a source of support to her. [End Page E1]Ms. E.'s appointments were scheduled at the end of the day due to the expectation and pattern of the extended time they would take. No matter her expressed concerns or needs, our recommendations and interventions were never enough. She continually questioned the assessment information and did not want to accept the education and orders given as the correct response to her problems. As one can see, her appointments could be exhausting!Ms. E. certainly deserved the best and most comprehensive care available from our team. Developing a more therapeutic relationship for her within the clinic became a priority for me. However, it was a daunting task to provide this level of care and to convince her that she deserved and was receiving such care. She presented a laundry list of characteristics that could lead to biases from the staff. Overcoming such individual biases toward her may be a barrier as well. These included her obesity, her lack of initiative, her self-centered behaviors, and her constant need for attention.As healthcare professionals... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Am I the Bad Guy?Tavishi ChopraWhat do you do when the 6-year-old patient you have vowed to protect suddenly deems you the bad guy?The afternoon started out like any typical afternoon during my inpatient pediatric rotation. We had finished rounding, grabbed lunch, and began to see our new admits. My residents told me to go see a 6-year-old, Ela, in the ED. All I knew was that she had (...) a burn injury. As I walked to her ED room, my heart sank.Burns from cigarette stumps covered her torso and back. She was holding her shirt off her chest to prevent the excruciating pain caused by her t-shirt rubbing against her skin. As soon as Ela made eye contact with me, she immediately started crying and exclaiming, "Mommy didn't mean to!" confirming exactly what I thought. These burns were inflicted from someone she loved.Ela was eventually admitted into the hospital, and the Department of Child Services was contacted. Little did I know that I would be so conflicted by this decision.DCS launched an investigation on Ela's mom, but during the investigation, Ela's mom was permitted at her bedside. It was very clear that Ela felt protected and loved by her mom. Often it was only her mom who could get her to stop crying during the painful dressing changes. I felt torn allowing Ela's mom to have such a strong presence in Ela's hospital stay. To me, nothing in the world can justify hurting a child so cruelly, and inflicting that pain so many times. However, my job was to help Ela heal. That meant that because Ela turned to her mom for support, I also needed to include Ela's mom in our medical decisions. I buried away any negative feelings I had, and I proceeded to interact with Ela's mom in a professional manner.It was this that allowed me to get to understand Ela's mom a little bit more. She was a single mom [End Page E8] working multiple jobs to help keep her family afloat. She often lived her day on three to four hours of sleep, so she was very tired. The sleep deprivation made her frustrated more easily, and she didn't have a healthy outlet to release her emotions. Unfortunately, Ela was on the receiving end of that frustration.Hearing her story made me even more angry, confused, and upset that a child suffered. I strongly believed that as adults, we should have better control of our emotions, and sleep deprivation and frustration weren't an excuse. I couldn't find it in me to respect Ela's mom, who I shamefully began to avoid.I still wanted to bond with Ela and show her unconditional love. When Ela's mom was at work, I would use that opportunity to go and spend time with her. We would play "princesses," blow bubbles together, and turn dressing changes into a game. We formed a special bond, and I always made it a goal to go and spend some time with her every day.DCS, meanwhile, was actively conducting an investigation. They interviewed Ela's mom, Ela's siblings, and Ela. The findings of their investigation revealed that Ela's mom often would lose her temper, and the kids feared their mom. Hearing this further proved to me that I did not need to interact with Ela's mom. Embarrassingly, it was just as much a priority for me to avoid Ela's mom as it was to spend time with Ela.DCS eventually concluded that Ela's mom would lose custody of Ela for the time being. Because of the connection that Ela and I had, I took it upon myself to deliver the news to her. Our bond was shattered right then and there. She immediately began to cry, told me she hated me, and asked me to leave the room. Anytime I would go into her room after that, she would start screaming and refused to talk to me. In a span of five minutes, Ela's mom made a decision that destroyed their family... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Every Patient is a Teacher—Especially the "Difficult" Ones:Caring for Patients with Borderline Personality DisorderCara ConnaughtonNo one can teach you how to work with a patient living with borderline personality disorder quite like a patient living with borderline personality disorder (BPD). The lesson [End Page E9] isn't on how to be the perfect caregiver or how to meet all the patient's needs. The lesson is to notice that the quality (...) of care and the patient's response are not always mutually dependent and that holding ourselves to impossible standards will only lead to resentment, job dissatisfaction, and potentially burnout.I had a very good teacher on this subject and her name was Sandra.1 Sandra was admitted to our hospital unit with end stage cervical cancer. She had attempted to treat her illness by using only homeopathic remedies, which hadn't abated the disease. While at the hospital, Sandra was intensely controlling over her medications as well as when and how she took them. Sandra had also been diagnosed with BPD. One symptom of her disorder manifested in staff splitting: she saw staff members as either good or bad and treated them as such—her thinking was very black and white. She would talk very badly about other nurses to the current nurse working or talk very well about her favorite nurse in a way that made me and other nurses feel that we weren't measuring up. Sandra also exhibited intense anger toward most staff and had unexpected mood swings—I didn't know what I was going to get when I walked into her room but was fairly certain it would include berating and belittling comments. This same treatment was given to most staff nurses except for one. Sandra's favorite nurse was Bonnie; Bonnie couldn't understand why the rest of the nursing staff found Sandra difficult since she was always treated very well by this patient.I dreaded coming to work to find Sandra as part of my patient assignment for the day. I knew that day would be full of cutting remarks and disappointment from Sandra, no matter how hard I tried to provide compassionate and quality care. Further, trying to meet her seemingly endless needs took away from the care that I could provide for the other patients on my assignment. I could easily spend an hour in Sandra's room doing various tasks while she expressed frustration and anger toward me—I couldn't seem to do anything right.I have cared for many "difficult" patients throughout my years as a bedside nurse—including those who were physically and verbally aggressive—but Sandra always stands out as the most "difficult" because her words and behavior cut right through me. Even the briefest interactions with Sandra left me questioning my competence as a nurse, something I hadn't experienced when caring for other "difficult" patients.A turning point in how I related to Sandra's behavior occurred one day shift when she was part of my patient assignment. Sandra had been off the unit for a treatment from before I'd even started my shift at 7 am. At 11 am, Sandra arrived back on the unit. A few minutes later, I brought her 9 am medications to her room. The medications were technically late, but of course, it would have been impossible for me to bring them to her on time as she wasn't even present on the unit. She said angrily, "These are late! Bonnie never brings my medications late!" At that moment, something switched in my mind—it wasn't me! What a relief. I had to let go of the idea that I needed to make this patient happy in order to be a good nurse. Prior to this incident, I determined how good of a job I was doing based on how happy my patient appeared with their care. I realized that a patient's satisfaction wasn't always dependent on the quality of the care I provided.All of us provided the best care that we could for Sandra. To help us do this while maintaining our own mental wellness, we rotated... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:It Is Going to Be a Long Clinic DaySalvador Cruz-FloresIt was a routine neurology clinic day. I entered the room where one of the residents was seeing a patient that we will call Patty, a 32-year-old long-standing epilepsy patient. Patty was sitting in the chair with her husband by her side. She started screaming at me, complaining that she was tired of feeling sick and unable to do anything. (...) She had been in and out of emergency rooms with a variety of complaints, from passing out to dizziness with nausea and vomiting. She was visibly angry and started cursing me with direct expletives and blaming me for all her ailments.Her husband was quiet and, at times, would cover his face as if he was embarrassed. I felt an initial burst of anger. I felt my face getting red. I made a great effort to stay quiet, leaned on the exam table facing them, lowered my voice, and braced to take the barrage of insults that were coming my way. I had to make a strong conscious effort to control my emotions and let her vent. I felt that if I responded in kind, I would inflame the situation. Moreover, a resident and a student working with me that day were also present in the room, and I felt it was my duty to behave professionally, so I sat and tried to do active listening with the idea of offering solutions to her complaints. I am not sure how long the event lasted, but it seemed like an eternity. As she slowed down, I apologized for making her feel not cared for, repeated some of her complaints, and tried to offer solutions to them, but she would not have it and did not accept anything I said. She wanted to get her prescriptions and leave the clinic. I offered to have one of my colleagues do the follow-up as she really did not want to see me anymore.Patty is one of those patients that when you see the name in the schedule, you cringe and tell yourself, it is going to be a long clinic day. She could be in the group of patients who are considered very difficult. Before me, she had been seen by several other neurologists. They likely also preferred not to see her on the schedule because she is one of the 20–30% of patients that have a type of functional psychogenic disorder that becomes more complicated because of the coexistence of epileptic seizures along with non-epileptic psychogenic events. The latter is a more problematic event because it does not respond to pharmacological treatment and causes a lot of disability. The best way to establish whether an event is a true epileptic event or a non-epileptic psychogenic event is to do continuous electroencephalographic monitoring to capture as many events as possible on video. I tried different combinations of medications to no avail and with significant side effects. I tried to set her up for electroencephalogram home monitoring to tease the epileptic and psychogenic events apart. In truth, her social circumstances, insurance coverage, and economic situation made it impossible to do so. Every time she came to the clinic, she had a multitude of complaints, and she would ask for a medication to treat the problem. Any mention of the potential psychogenic nature of her problems would result in a defensive attitude "so you are saying I am crazy." We discussed multiple times the need to be careful with the medications and the potential bad side effects. I wanted to help her, but with every visit, there seemed to be a barrier, and the visit would end on bad terms. At least, that is how I felt. I was left every time, with a feeling of frustration. I believe that she left the clinic feeling the same. That day, I left the clinic upset and depressed. I tried to convince myself I had done all I could to help her. I just could not understand why this was the result.Several years have passed since I have seen Patty in the clinic. She certainly has not... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Dying is DifficultClarice DouilleHayden had been a constant in my life since I was eight, as our families were close. He was a single dad who loved to talk and always had a smile on his face. He was obsessed with anything related to his kids and attended every school activity or sporting event.In 2015, Hayden was diagnosed with stage III colon cancer. He was adamant that he didn't (...) want to share any information about his condition with his kids, waiting several months until the eve of his first surgery before breaking the news to them. Hayden made the operation seem trivial and underplayed the severity of the chemotherapy treatments that would follow. Despite whatever he was feeling, he seemed committed to maintaining his happy demeanor, which was probably an effort to convince himself and others to feel better about the situation.Hayden survived his first operation and rounds of chemotherapy. And, over the next several years, he chose to undergo a regimen of additional aggressive treatments, submitting to surgery after surgery, as well as several more rounds of chemotherapy, followed by radiation treatments. I was already working as a home care aide, and because of the close relationship between our families, Hayden asked me to help as his caregiver, including running errands and babysitting for his younger kids. Hayden made it clear that he wanted his kids to remain ignorant of the progression of his condition so that they wouldn't worry and become anxious. It seemed he was motivated by his desire to preserve his young kids' happiness and innocence. In hindsight, I think this prevented his kids from being able to fully savor moments with their dad or prepare for the possibility of his death. I also think Hayden was trying to shelter himself from his own fear of mortality. And it was this fear that made Hayden a "difficult patient."Hayden suffered both physically and mentally, not only from his disease and treatment but also from his fear of mortality. I noticed how he tried to hide his suffering by shutting himself in his bedroom and making excuses when he wasn't eating. He often forgot to take his medications; he refused to use pill boxes and objected to reminders from others. The consequences often meant additional hospitalizations. I wish more palliative options had been introduced to him earlier in his disease course. I believe a palliative care team would have encouraged Hayden to think about and discuss death, helped him change his outlook for treatment and living with cancer, and most importantly, enabled him to better enjoy the remainder of his life with his kids.Nevertheless, I understood why Hayden was worried about his kids, and I could see how his recent personal experiences since his initial diagnosis might have contributed to his choice for the most aggressive treatments: his sister and both his parents had died, leaving no other relatives to care for his kids. He wanted to be there for his kids, yet the side effects of treatment made him so sick that he couldn't leave his bed. He couldn't even do the very activities that made him want to live.Hayden was an extremely social person, but when he found out his cancer was terminal, he [End Page E6] isolated himself from his loved ones for nearly six weeks. Even though I was likely the only person he was communicating with, as the person who helped him and his family, I often didn't see him for weeks at a time. He would text me requests, leave money on the front table, and ask me to drop off the items I purchased and then leave. Hayden's kids continued their daily routines, despite comments from them about his absence.In early August 2020, Hayden was admitted to the hospital. His doctor called the kids at home and told them that their dad would immediately be enrolled in hospice care. They were, as one might expect, shocked at this news. They knew their dad was sick and had been dealing with his cancer for years. But Hayden's health deteriorated slowly, and the kids hadn't known... (shrink)

Abstract:In this manuscript, we start with a real life account of an Ob/Gyn experience with a young patient from the childfree movement requesting permanent sterilization. A narrative ethics approach invites the reader to experience the encounter in an immersive way for this growing issue. This approach allows readers to reflect on their reaction to the patient and consider how that can affect other patient encounters. Additionally, it explores the stigma these young patients encounter making a permanent decision to never have (...) children. In the commentary, we explore the ethical issues in this case including why we question the permanent decision to refrain from having children. We also discuss informed consent and patient education along with the various approaches to physician-patient relationships with an emphasis on shared decision making, which allows space for both patient and physician to question and reason through their health decisions. (shrink)

Abstract:This symposium includes twelve personal narratives from healthcare professionals who have worked with patients whose behavior, attitudes, or life situations make providing care challenging. At the lower end of the estimates, at least 15% of adult patient encounters are with patients described as "difficult" by the treating team, and these encounters often evoke feelings of dread, frustration, and anger in healthcare professionals. Verbal abuse of staff, repeat hospital admissions due to self-injurious behaviors, and negative beliefs about health may make providing (...) care to this group of patients a daily struggle. Despite these challenges, healthcare providers—especially those who work in an in-patient setting—are obligated to treat all comers, sometimes at the expense of their own mental health. This symposium aims to learn from health professionals' stories the kinds of struggles they face, the lessons they draw from those struggles, and the constructive responses they employ to work successfully with challenging patients. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Breaking the Readmission CycleBrian HattenI want to share the story of my difficult patient Ms. L. She has twenty-seven current medical issues. Thirty-five active prescriptions. Limited mobility requiring the use of a motorized scooter. Non-medical care gaps. And over twenty hospital admissions since 2020. I met Ms. L approximately five years ago as her hospital attending and have continued to care for her during her frequent hospitalizations. I could (...) recite this 77-year-old female's litany of medical problems. But sufficed to say, her history is complex, with her admitting diagnoses running the gambit from cellulitis to gastrointestinal bleeding to altered mental status. But, her diagnosis and frequent exacerbations of congestive heart failure (CHF) are particularly frustrating for us both and will be my focus today.CHF makes her susceptible to fluid overload leading to feelings of shortness of breath, which progresses to respiratory distress. Like other individuals with CHF, she uses diuretics to prevent herself from becoming fluid overloaded. And, like many individuals who take diuretics, she hates them. She (un)affectionately calls her water pills "the bomb" because the effect is sudden, profound, and explosive when they begin working. The combination of the diuretic effect and her limited mobility causes significant emotional stress for Ms. L, a woman who values presenting herself outwardly as in control, well-dressed, and put together. Her dislike of the medical effect of her diuretics has led to her either taking them less often or outright discontinuing them. So, while discontinuation avoids those frustrating effects, it leads to fluid accumulation, subsequent respiratory distress, and readmission to the hospital.Her medical records mention she has memory issues. It is unclear how much her mild cognitive impairment affects her frequent readmissions. We have had many conversations where I would never suspect something was amiss. But sometimes, she can be forgetful and does not recall our recent discussions. That being said, she knows the names and uses of her medications. She can report to me her home weights when she checks them and knows what her "dry" weight should be. Yet, she does not act when her scales begin reading heavier or when she develops leg swelling. Instead, she presents to the emergency department in extremis. When directly questioned about why she lets her situation deteriorate to such a state that she requires hospitalization, she demurs. She comments that she can often be stubborn, that the diuretic effect of "the bomb" is burdensome, but always reminds me she is honest in admitting she wasn't taking her water pills.During several admissions, I worried for her survival after she had self-discontinued her medications and showed up at the emergency department in respiratory failure. For any patient with recurrent admissions, I discuss their overall goals of care to ensure we are working together toward achievable medical ends. But this conversation was essential to have with Ms. L. The possibility existed that she would present to the hospital too late in her disease process, and we would not be able to correct her respiratory failure. I wanted to ensure that the hospital staff and I respected her wishes regarding her care. Despite raising my concerns, she would [End Page 22] decline to discuss her wishes. Even worse, attempting to have her complete advance care planning documents like advance directives or a Physician Orders for Life-Sustaining Treatment (POLST) form was a futile endeavor. Ms. L was always vague and non-committal. She simply did not want to engage in those types of conversations. When asked why she declined to discuss these issues, Ms. L would reply that she was doing okay, the discussion was unnecessary, and she had family members to make those decisions for her.Caring for her during her hospital stays was a source of professional frustration for me. Her recurrent admissions made me feel like I was failing her. During each hospital stay, we would go over her medications. We repeatedly discussed how she should check her weights daily and monitor for lower extremity edema. We created multiple action plans for when to call her physicians so we could head off another hospital visit. We completed all the... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When Is Enough, Enough?Megan HomsyThis was a case that stuck with many members of our transplant team for a long time. The patient was a 44-year-old Caucasian male evaluated for a liver transplant with a diagnosis of hepatitis C virus (HCV), originally diagnosed 11 years before the transplant evaluation. The patient met the criteria for the following substance use diagnoses: alcohol use disorder moderate in sustained remission, in a (...) controlled environment, opioid use disorder, severe, in sustained remission, on maintenance therapy, in a controlled environment, stimulant use disorder, amphetamine-type, severe, in early remission, in a controlled environment and stimulant use disorder, cocaine-type, severe in early remission, in a controlled environment.The patient had been living in a sober living housing program for approximately ten months prior to his transplant evaluation with me, his social worker. He had also been diagnosed with depression and bipolar disorder. He had been intermittently linked with mental health services and had participated in numerous detox and substance abuse programs over the last ten years, with varying degrees of success. He was in dual diagnosis treatment (i.e., treatment for co-occurring substance use and mental health disorders) through his Suboxone clinic and was completing toxicology screenings on a biweekly basis.After concluding the minimum three months of drug and alcohol treatment set forth by the state's Organ Transplantation Consortium, the patient graduated from his sober living program, moved in with his sister, and was listed for a liver transplant.The patient was transplanted five months after his clinic evaluation. At the time of the surgery, the patient's Suboxone was abruptly discontinued and replaced with IV Dilaudid. Within days of his transplant, the patient frequently expressed concerns about his pain. Several medical services attempted to manage the pain medications, resulting in his pain management plan being changed repeatedly and much confusion over his current medication regimen. During his liver transplant hospitalization, the RN found the patient with a needle in his arm, and after a search of the patient's hospital room, the hospital police found drug paraphernalia and illicit substances. The patient was eventually discharged to an inpatient substance abuse program, which he left before completing the program and against medical advice.During his first year post-transplant, I attempted to arrange other various treatment programs for him (most of which he did not follow through with) and to find housing for him (as he had been forced to leave his sister's home after his relapse). Eventually, the patient was incarcerated on drug-related charges. Numerous times, the patient missed completing his labs and his post-transplant appointments. He did not refill his immunosuppressant medications, and for lengthy periods of time, he was unreachable by the transplant care team, which resulted in my team members and I calling the patient's family, other providers, and the police for safety checks.In the aftermath of these issues, my colleagues and I had to reckon with the realization that we had failed the patient. As a team, our transplant center created a task force to review this case and what to do in the future to prevent such breakdowns in patient care. We created protocols for managing patients who, at the time of their transplant, are on Medication Assisted Treatment (MAT) such as Suboxone and methadone. Staff across the multidisciplinary team attended trainings regarding addiction, pain management, and best practices for MAT services. Additionally, our transplant center collaborated with our hospital's addiction treatment program for a streamlined referral process for transplant patients to addiction services.This patient's case and its sensational nature resulted in many conversations, both professional and unprofessional. Members of the social worker department became aware that personnel within transplant, though not involved in patient care, were inappropriately discussing this patient's case and engaging in unprofessional behavior. Said actions led to the termination of a member of the transplant team. I was placed in the unenviable [End Page E3] position of having to report this behavior to hospital management and legal teams to protect a vulnerable patient.The ethical challenge behind this case really stems from the transplant team attempting to balance two... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Tincture of the Doctor's TimeHolland KaplanI first thought of Mr. H as a "difficult patient" while reading the written hand-off I received on him as I was preparing to take over an inpatient general medicine service—"He leaves all the time to smoke." I don't think the statement was meant to imply anything about the patient; if anything, it may have been included for context to prepare me for (...) the patient's intermittent absence. But, reading this, I felt a familiar sense of annoyance rising in my chest. Every few months, I take care of a patient who seems to never be in his room. The patient is consistently out smoking, in the cafeteria, or in another unknown location, seemingly doing an undisclosed activity. This is frustrating because it means I have to work around the patient's schedule of smoke breaks and jaunts to the cafeteria to evaluate the patient on a daily basis. The thoughts inevitably cross my mind: Does this patient even want care in the hospital if he's never in his room? Is he actually sick enough to need to be in the hospital if he's able to spend so much time outside of the hospital? Why is he leaving so frequently—is he doing drugs?This particular patient had been in perfect health until two months before I met him when he was shot multiple times during an encounter at a gas station. One of the bullets had lodged in his back, shattering a vertebra. Another had decimated the bones in his right upper arm, which were now held in place by screws and plates. Several had landed in his abdomen, necessitating the removal of part of his bowel. Finally, a bullet had sliced through the lower part of his right kidney, shredding his ureter and mandating surgical reconstruction of his urinary system. After over a month in the intensive care unit with multiple reparative surgeries, he was discharged to a rehabilitation facility. But he started having fevers and fast heart rates; ultimately, he was admitted to the hospital again for multiple infected fluid collections that had formed at the sites of his surgeries. He left the hospital prior to getting treated for these infections, purportedly "against medical [End Page 12] advice." And now, several weeks later, he was here in the hospital for the same reason.The first time I went to see Mr. H, he was, of course, not in his room. I went to the nursing station to ask if the clerk knew where he was. She knowingly said, "Oh yeah, he goes out a lot. I can give him a call to let him know the doctor is here to see him if you'd like." I assented, thanked the clerk for calling him, and proceeded, annoyed, in seeing the rest of my patients. I considered how I would address Mr. H's behavior when I was finally able to talk to him. I had seen others take many different approaches—negotiation about the timing and frequency of these extramural expeditions, ultimatums about getting discharged, mandating urine drug screens upon return, and silent, frustrated tolerance. I resolved to wait to speak to him to determine which approach might be most suitable. An hour later, I received a call from the clerk that Mr. H had returned to his room to see me.The first time I met Mr. H, he informed me he had taken the bus to midtown to make a run to the grocery store. I was internally incredulous. He felt well enough to go to the grocery store? Why was he in the hospital then? At that moment, I opted not to discuss his frequent departures yet, as I was frustrated and realized I wouldn't be able to identify the best way to address them. I reviewed his medical issues with him, asked specific questions about how he was feeling, performed a physical exam, and reiterated his current plan of care. Mr. H made it very clear that he would like to get out of the hospital as soon as possible. I tried to set the expectation that he... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:'Difficult Patient':A Reflective EssayDaniel McFarlandThe patient who sat across from me knew too much about all brain tumors. According to her, she would never know enough about the one sitting uncomfortably close to her brain's temporal lobe. In her quest for the 'right' answer to her meningioma problem, she became certain that its surgical removal would upend her life, leaving her in neurological taters.She was a small business owner (...) of a practice dedicated to medical massage. Indubitably, she had helped countless clients heal themselves of medical mishaps and avoid or recover from the tyranny of [End Page E13] a medical community that did not always provide respectable, hospitable care. She was certain a craniotomy would end her business, nullifying everything she had spent her life building. She became fluent in the legalese needed to transfer or sell her business in anticipation of surgery. To stave off losing her life's work from a surgical mishap, she sought opinions from a dozen neurosurgeons. They reassured her that a routine surgery like this would be effective with little chance of neurological collateral damage. She did not believe them. In her business she had treated numerous exhausted professionals. Many surgeons with whom she worked professionally frequently referred patients to her. She had seen the poor self-care that many surgeons and doctors brought on themselves in the form of unrelenting stress, drinking, bad eating habits, and even drugs. This made her nervous and untrusting about the care she could receive at the hands of an overworked or impaired surgeon. She scheduled appointments with every neurosurgeon she could find and interviewed them relentlessly, looking for the slightest sign of incompetence, unprofessionalism, antipathy, or lapse in compassion. Given her insistence and dogged nature, she usually found what she was looking for. She would bring her research to the appointments and interview the neurosurgeons on what other doctors had opined. If they were incredulous of research she brought or a technique on which she inquired, they were summarily dismissed.At first glance, which is likely all that she got from many of her visits, these encounters put a spotlight on a 'difficult' patient refusing care. The deeper look that my patient deserved revealed a personal narrative of the oldest child who survived a broken home riddled with drug use and prostitution. She learned to rely on only herself for protection. She took unapologetic control of her fate. Her own mother had at one time offered my patient work as a prostitute. Her father was no better in providing protection and a decent upbringing. He had left her as an eight-year-old with the neglectful mother and four younger siblings to fend for herself, which she did against the odds. She suffered physical, emotional, and spiritual abuse.As an adult, her strong sense of selfhood and boundaries allowed her to have a guarded relationship with both of her parents at a comfortable emotional distance. Her mission and passionate drive to help others heal saved her life. In healing others, she was healing herself. Importantly, her experience marked for her indelibly that while she could do this for herself, others were not reliable and could not heal her. She had only ever trusted and relied upon herself. She was the only one who had never let her down. She was terrified that this might be the first time. The potential surgery risked her cognition, physical capacities, and ability to care for herself. The risk was too great.We met numerous times, uncovering her past, reliving the stories of her tumultuous background, and examining how she established her place in the world away from the horrors of her insecure childhood. She took in my reaction to her stories and saw the horror on my face when I tried to imagine a world where one's parents were not only neglectful but the source of danger. Through my reaction, she may have begun to have some compassion for her own story and put the pieces together. One several occasions, she became enraged when I didn't meet her expectations, or I didn't entertain the diatribe of neurosurgical scholarly work.On one of those... (shrink)

Abstract:Multidisciplinary healthcare workers describe interactions with "difficult" patients that have shaped their lives and their clinical practice. The narrators recall navigating the push-pull of empathy and frustration to forge therapeutic patient relationships in inhospitable, under-resourced environments. Their stories offer glimpses into the traumatized people hiding behind "difficult" patient facades. This commentary explores how the narrators engaged in empathy and obligation to build trusting relationships with patients. To protect themselves and their patients, healthcare workers must engage beyond individual clinical duties to (...) help remodel American healthcare. They should be encouraged to advocate for implementation of trauma informed care and to engage in public discourse about transforming healthcare for the good of healthcare workers, patients, and families. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:I Had Never Heard Someone Use That Word BeforeAdrienne Feller NovickThe patient was dying. As the social worker, I had arranged the meeting and sat shoulder to shoulder with the family and the attending physician in the small nondescript room. The family was grief-stricken and asked intelligent questions as they made difficult decisions about end-of-life care for their loved one. The doctor spoke with gentle kindness, acknowledging their difficult (...) decision as he completed the neon pink Medical Orders for Life Sustaining Treatment (MOLST) form and left the room. I was tangled up with emotions; I felt relieved that the meeting had gone smoothly, sad for the patient and family, and in awe of the doctor for his ability to lead the difficult conversation. I stayed behind to ask the family if there was anything I could do to help them. [End Page E4]Before I could speak, the patient's wife turned to me and said, "I am so glad that k--- left the room." (Using a derogatory word for a person of the Jewish faith). My brain began processing the statement. I am a Jewish woman. Did I hear that right? Did she say what I think she said? Should I say something? I froze, and time seemed to stop. She was looking at me expectantly, waiting for a response. Her face reminded me of someone waiting for the other person to return a "high five." I was flooded with emotion. A succession of thoughts ran through my head, everything from being rude in response or getting physical. I did neither. I said nothing. I smiled and left the room feeling like I had been gut-punched.I was in denial. I made excuses for the wife; she was stressed. I kept thinking I must not have heard her correctly and that I was overreacting. I continued to work with the family as though nothing had happened until the patient died five days later. I felt ashamed and never told anyone about what happened. I regretted not saying anything. I replayed the conversation in my mind and felt depressed and angry. Inside I felt complicit for not speaking up, but I had no words. I assumed bias in healthcare was rare. I did nothing.Years later, after I completed a patient visit in the Intensive Care Unit (ICU), I observed a group of surgical residents doing rounds. The attending welcomed me to join this valuable clinical learning experience. As the group approached the next bed, the patient pointed to one resident and loudly said, "I don't want a doctor who looks like that to come near me." I gasped aloud and froze, waiting to see what would happen next. The attending looked directly at the patient and said calmly, "We are all here to help you. That is not an appropriate thing for you to say." Then, he turned to the resident and nodded, directing them to resume their bedside assessment. The patient mumbled something inaudibly and said nothing.To my astonishment, the doctor acknowledged the microaggression (a microaggression is a statement, action, or incident regarded as discrimination), addressed the issue, respectfully supported the resident, created a safe space for everyone on the healthcare team and resumed quality patient care without missing a beat. He modeled a strategy to address patient bias and taught a valuable skill. This was a learning moment for me. It helped me refocus my past experience and provided me with a useful strategy to address bias in the future.As a member of the medical ethics consultation service, I listen, provide support, and aid in challenging communications. I had the opportunity to model the communication strategy I acquired in the ICU. The medical ethics team was consulted for a patient refusing treatment. The patient was disrespectful to healthcare team members, cursing at nurses and residents, using ethnic slurs, and saying he "would rather die than let one of them touch him. I entered the patient's room with the healthcare team, introduced myself, and explained the reason for my visit. The patient defiantly agreed he had used slurs, saying he wanted to go home. I continued, everyone here... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Vertical Transmission:The Patient, the Student, the TeacherMiguel PaniaguaHe did not ask for this fate, nor did he deserve it, particularly considering the tragic circumstances. Lì presented to the campus health provider one month prior with fatigue, abdominal pain, and jaundice. He and his parents immigrated to the United States from China when he was a child. He was well aware that he had hepatitis B from what is termed (...) "vertical transmission." His mom unknowingly passed on this virus to him during her pregnancy. In most countries with a high prevalence of the virus, prenatal screening is routinely undertaken, and prophylaxis administered. I am not certain this occurred in Lì's case and at this point it did not matter. Lì knew he would live with this for the duration of his life. In fact, he told me he had gone his whole life to this point without any symptoms whatsoever. What is known about chronic hepatitis B infection is that in most people affected, it can be considered a chronic disease where most live a long full life. The risk of advancing to liver cirrhosis or cancer in general is low. This unfortunately was not the case with Lì.What transpired was what they most feared. As he was studying for his final exams, Lì endured days of worsening fatigue, malaise, and nausea. He noticed his skin was a tinge of yellow and he was having some itching that was unusual. He noticed his clothes fitting more loosely and found he had unintentionally lost twenty pounds. He visited the campus health center and after a series of tests and imaging studies, Lì was diagnosed with advanced hepatocellular carcinoma, an unfortunate sequela of this chronic infection. It was then that he put school on hold and returned home to get further care.I first met Lì in the hospital as a consultant for the palliative medicine service. "He won't listen." "He is so difficult." "He is in denial." These were examples of some of the care team's exasperated assessments of his demeanor as a patient. What I did not realize prior to visiting him the first time was that Lì was a pre-clinical medical student. When I first met him, he did not want to talk very much; he was preoccupied and distant. In retrospect, I can see that he was suffering on so many levels. His appearance was gaunt and cachectic. The lights in the room cast shadows in the concave areas of his temples and his collarbones were the most prominent feature of his torso through his hospital gown. He glowed yellow from jaundice. When I examined him on this first visit, I noticed that his liver, a now grossly enlarged hard and nodular structure, occupied most of his abdomen. I found that speaking to him as a colleague, even calling him "doctor," helped him feel respected and enabled me to build rapport with him. At one point, I described to him the findings I felt in his abdomen. "I can palpate the edge of your liver here, what seems to be eight centimeters below your costal margin. There are many palpable nodularities on the ventral surface." It was at this point I invited him to palpate what I was feeling. I gently guided his own hand over his abdomen and noticed him studying the features as if they were not his own, like a skilled diagnostician.Over the course of three weeks, I visited with Lì when I was on service. The last time I saw him, he had declined rapidly, his disease progressing [End Page 17] cruelly, and he was very short of breath and becoming more somnolent. I noticed his mother in the room, standing by his bed, and crying inconsolably as he lay suffering. I felt deep anguish and remorse, wondering if she said these words to herself "It is all my fault," considering the source of his initial illness. I cannot even imagine.As I assisted the team in titrating his comfort medications, I sat with him. He shook my hand with all the strength left that he could muster and said, "you are a good doctor." I... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Silent Screams; Lily's StoryEva V. Regel"Trauma is personal. It does not disappear if it is not validated. When it is ignored or invalidated, the silent screams continue internally heard only by the one held captive. When someone enters the pain and hears the scream, healing can begin."—Danielle Bernock, "Emerging Wings; A true story of Lies, Pain and the Love that Heals."Some patients stay with you long after they leave. (...) They appear in your mind when you walk by the hospital room they occupied or when someone mentions their name. There is [End Page 19] something about the narrative of their life and illness that makes you hold on to them. Lily is one such patient for me.Lily was a 45-year-old paraplegic woman who was well known to many providers in the hospital. She had a complex trauma history (childhood physical and sexual abuse, intimate partner violence, domestic violence), homelessness, and multiple psychiatric admissions. In addition, she had a complex medical history, including chronic pain issues and substance use disorder. Many providers considered her to be a "very difficult" or "challenging" patient because she would "dictate" her care, had low distress tolerance and would have explosive angry outbursts requiring frequent visits from Police and Security. To top it off, after months of a challenging stay on a unit, she would eventually leave against medical advice. Everyone involved in her care felt that discharge to a safe setting such as a skilled nursing facility would be her best option. Yet, she was a very "hard" sell to any facility because of her behavioral issues, relatively young age, extensive history of drug use, and medication non-compliance. Even though the unit I worked in was familiar with "difficult" patients like Lily, the floor staff was anxious and concerned about the effect Lily would have on patients, staff, and providers. The combined anticipatory anxiety worsened after we were told that Lily left against medical advice three days before her admission to our unit as a reaction to the staff's attempt to develop a behavioral plan.I remember the day I met Lily. I was working as the clinical social worker on the floor, helping patients with adjustment to coping with hospitalization, addressing mental health issues that usually exacerbate in the acute care setting, and providing support to the staff caring for a psychosocially complex patient population. It was the second day after Lily arrived on the floor, and Police and Security had already come up three times. As I walked out of another patient's room, a bedside nurse stopped me in the hallway. "Can you please talk to her? … Please, just talk to her, or sit with her. I just need a break. I have been in that room since I started my shift. I am exhausted." The nurse had an exasperated and pleading look, and even though I was rushing to a meeting, I decided to meet with Lily instead. When I walked into her room, I saw a thin, small-framed woman with brown hair pulled back into a tight bun. She had freckles peppered all over her round face, neck, and chest. Her features were delicate and small, and her almond-shaped green eyes were her most prominent feature. She was wearing a white tee and jeans. She was sitting in her wheelchair; her makeup bag was lying on the table next to her. I introduced myself and my role on the team, trying not to stumble under a very heavy glare. "Tell them to leave me alone. That nurse is always in my room. Spying. I might not be able to walk, but I can still use my hands. I can call if I need help."And so I did. And when I came back, Lily and I talked a little about her life. And the next day, we talked a little more. And then again. Lily was giving me small glimpses of who she was and the events in her life. Then, one day, in the middle of the conversation about her day and telling me how much she hated to be confined to her hospital room, she looked... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:I Know You Have to Stay … I Wish I Could, I Wish I CouldMegan K. SkaffIn the world of healthcare, I advocate for the scores of youth who have had Adverse Childhood Experiences (ACEs). I work to understand where the child has been so we can learn the extent of the trauma that the child has been through. While working for a facility as the Street Outreach Case (...) Manager, my priority was based mainly on one girl, let us call her Tawny. I knew Tawny was going to be a very difficult client to work with the moment I realized she did not trust anyone in her own life, let alone the facility I worked in. She would not talk to a single staff member. However, being her case manager, it was my job to get her to trust me so I could crack her case and really get down to the problems she was facing. I promised myself the day I met Tawny that I would never cast one judgment upon this girl, and I made good on that promise until this very day.I find it true that we are all raised in different situations. Tawny endured such horrific childhood experiences that she voluntarily entered herself into our organization. My specialty was the homeless and runaway case manager. Hence, the reason she ended up on my caseload. After running many different tests, I learned that her ACEs score was a ten out of ten. To her, everything she had endured that warranted this score was baseline normal; she did not see her experiences as traumatic, she just saw them as a piece of her life. For me as her case manager, looking at this ten was devastating. I wanted to know everything I could that went into this high score. I needed Tawny to learn to trust me so I could understand what was going on in her home life and better understand her and her trust issues.Just a side note, the staff around me strongly hated Tawny. The worst part about this was that she knew it because they vocalized it. The staff [End Page 5] was so horrible that they would not even pretend to her face that they liked her. The one job they had as staff—to make her feel welcomed and loved in an environment full of broken kids—they could not do. There was no question as to why I struggled to build a relationship with my most vulnerable yet strongest client. Tawny would not let anyone see her as vulnerable. She did not want to be vulnerable because to her vulnerability meant weakness.I was determined to build a solid foundation of trust with Tawny. It was difficult, but I did it. At best, this process took weeks, maybe close to over a month. After many days of her asking other staff, "why is this b**** still in here," and her finally, slowly inching closer to me to say, "Sup," and me answering, "Just waiting for you to talk to me." This answer would make her smile, even though she tried hard not to. As much as she did not want it to be true, I was the only person she wanted to hang out with on the floor. She did not want anything to do with the kids or the staff. She knew the kids on the floor were toxic for her, and she wanted a better life for herself. She knew the staff were toxic for her as well.She started to ask daily where I was, so I started making sure I was on the floor every day. I gave her my work cell and wrote it in the call book along with a message that she had permission to call at any time, no matter day or night. Staff hated that. I did not care. Let me tell you, she tested it to its limits. If she called me at 3:00 AM, I would answer. She would say she was calling to say goodnight; when really, she just needed to know someone would be there. She needed to know she could trust me... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:An Epidemic of Difficult PatientsKeva SouthwellAs the opioid epidemic marches on, we have all become familiar with a particular breed of "difficult patient," the intravenous drug user. Most teams try to get through these admissions with as few interactions as possible. Nurses will tell you how much they hate caring for these patients, often citing "they did this to themselves" as they experience prolonged admissions due to infections resulting (...) from Intravenous Drug Use (IVDU). Most services try to get out of admitting these patients, saying they are more appropriate with infectious disease, cardiology, or "anywhere but with me." These patients often use drugs in the hospital, threaten to leave AMA, and are dangerous, liable to assault or abuse the very staff trying to help them. The general consensus is that taking care of these patients is a dirty job … why do I have to do it?That's where I come in. It's a dirty job … and that's exactly why I do it. I run a unique service, where my preferred patients are those admitted for 6–8 weeks of IV antibiotics to treat their endocarditis. Some of these patients survive after discharge, but most don't. I know this. But it's my job to help them anyway. It just turns out that in these cases, help doesn't always look the way you think it will.In a perfect world, having a life-threatening infection would be the rock bottom these young people need to embrace a new way of life. Unfortunately, this world is far from perfect. Just as having diabetes doesn't make you stop wanting junk food, having endocarditis does not make you stop wanting drugs. In fact, it can be the opposite. [End Page 26] Drugs are often the coping tool these patients turn to. Happy? Use drugs. Sad? Use drugs. Scared? Use drugs. That's why it's hard. Addiction defies logic; it can be cunning, baffling, and powerful. Until you understand addiction, you'll never really find a way to treat these patients, let alone a way to enjoy treating them.We all have patients who change things for us. They shift our perspective, make us view our practice, our patients, and ourselves differently; patients who teach us the lessons not learned in school. I will never forget Jack, one of those "difficult patients." He taught me how to care for people who really can't be medically helped. It's a lesson that can take years to learn: You've got to let go of the outcome, and some solutions don't look the way you think they should. In this way, he helped me continue in this difficult work.I was a nearly new hospitalist, having just moved into this work from outpatient addiction care. Jack was a young man, 32 years old. He had presented to our hospital with endocarditis of the aortic and tricuspid valves secondary to IVDU. He was referred to my service when he was ineligible for valve replacement due to septic emboli in his brain and subsequent micro hemorrhage. The surgery team wanted him to recover from these events before considering surgical treatment.Jack was a big guy, over 6'2", with a weight to match. He was covered in tattoos—his back, arms, chest, and neck—not an inch was bare. His physical presence might be considered intimidating. Jack was a man of few words: he complained of very little, was often asleep during medical visits, never really left his room, and had no visitors. About four days after his arrival, nursing became concerned about illicit drug use. Despite the fact he had no orders for narcotics or other sedating meds, he was sleeping all the time. His drug screens were negative. Despite the lack of specific evidence, I was asked to take measures to ensure he was not using illicit drugs, which included placing him on a contract and ordering 1:1 observation.His fatigue was concerning, though not for drug use. A repeat ECHO showed that his aortic insufficiency was worsening. His tricuspid insufficiency was very bad from the start. His belly began to swell, followed by his... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Healthcare is Demanding:Patience is a Virtue!Andrea TorrenceNursing is a rewarding career, but it can also be extremely challenging, depending on the type of patient you are assigned to. In my career, I have had a number of "difficult" patients, and every situation required a specific type of approach. Understanding how to interact with a difficult patient is a talent and requires a level of patience that exceeds the normal (...) amount one may have. As a nurse, if you want to be successful, you must have patience. Along with many natural characteristics required to be successful in nursing, patience, in my opinion, is the most required quality required for nursing. The difficult patient can be an emotional burden to the care provider. These burdens are not always related to the tasks associated with care. The patient that is emotionally exhausting is far more complex than a patient who requires physical work. Nursing is a trying and risky career, but the nurse is obligated to provide the best care possible to all patients regardless of how difficult that person may be.Our cardiac surgical telemetry unit received a patient from the emergency room diagnosed with a minor psychiatric problem and tachycardia (a fast heart rate). This patient required medical clearance before going to the psychiatric unit for further evaluation. At our facility, this frequently happens, depending on how many psychiatric beds are available and on the patient's medical status. There were no clinical indications for this patient to require a bedside caregiver—a bedside caregiver is assigned to a patient that may somehow be classified as a danger to themselves or others—and the patient was not "pink-slipped." Patients who may not be safe to leave the hospital once they've been evaluated in the emergency room will be pink-slipped for an inpatient evaluation. Also, suicidal or homicidal patients are pink-slipped until they undergo an extensive evaluation and are deemed safe to leave on their own. A pink slip is a legal hold document. The patient that we received at the time of her admission required neither. The initial description of the patient revealed that she was a young, pleasant, ambulatory (able to walk with no problems) woman and completely oriented (understands and can comprehend). This patient did not have any pain or complaints documented on her emergency room assessment. She was corporative and followed instructions.As soon as we received the patient to the unit, she began to protest the need for pain medication. There were no orders for pain medication because there was no notation of pain in the emergency room. The nurse addressed the patient's pain with the admitting physician and Tylenol was ordered. When the patient heard that the physician ordered Tylenol, she became very angry. The patient wanted a stronger medication. I have a reputation for connecting with patients who become angry, and those who are classified as difficult, so the primary nurse asked me to speak to this patient. After a brief conversation, I was able to calm the patient, and she returned to her room quietly. The patient was apologetic and sincere. I used a calm approach, reassuring words of affirmation, and the perfect body language to de-escalate this patient. I was pleased with myself because only a simple combination of techniques was used to resolve the patient's anger, and at that time, a therapeutic connection was made.The nurse entered the patient's room and noticed that the roommate looked somewhat bewildered, [End Page E11] but she did not address the roommate. The nurse was focused on completing her patient's admission assessment. After the nurse completed the assessment, the order for the patient to wear telemetry was discussed. Telemetry is a physician's order to continuously monitor the heart's function while hospitalized. Because the patient was mildly tachycardic, telemetry was ordered. The patient immediately refused the order and told the nurse that she was not going to wear the monitor. The nurse explained the need and informed the patient that she would not be confined to the bed while wearing it. The nurse left the room to find me to discuss the... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Working with Patience:An Insight into Dealing with Difficult EmotionsDavid VilanovaAs the most trusted professionals in the nation, nurses are expected to care for their patients with empathy and freedom from bias. The reality is that nurses are human, and some form of implicit bias is inevitable. In my own experience, this issue has reared its head on several occasions. My nursing background is prominently in cardiac and intensive care. (...) Seeing patients at their most vulnerable has become a regular part of my practice. Among some of the most challenging cases for me have been when I assume care of a patient withdrawing from alcohol. As an adult child with close alcoholic family members, many instances of abuse and pain stick with me today and these are brought to the surface when I care for patients with alcohol use disorder. In most cases, I easily find a healthy balance between remaining an understanding-and-empathetic provider and protecting my emotional and mental health as I navigate ethical and moral issues. However, with this patient population, walking that fine line is especially challenging. How do I navigate and manage intensely personal emotions and biases while providing the high-quality care I vowed to deliver regardless of my patient's life choices, addictions, and illnesses? How do I maintain an appropriate level of neutrality and clarity as this patient's behavior and attitude spark emotional triggers? In other words, how do I take care of someone I don't like?Mrs. H was a middle-aged Hispanic woman, barely coherent, but speaking clearly enough that I could understand her slurred speech. Immediate dread washed over me as I realized my assignment included a patient withdrawing from alcohol. The patient's affect, incoherence, and aggression were all too reminiscent of a traumatic past I still work to heal from. My coworkers couldn't understand her insults and obscenities and were therefore unphased except for noting her unruly and erratic behavior. On the other hand, I could understand much of what she was yelling at me and any other staff who bravely walked into her room. My immediate thoughts were that this woman clearly did not want our help. My every attempt to enter her room, speak with her, and provide care were met with an all too familiar rejection and denial that she even had a problem. Yet here she was in a hospital room, and I was her nurse. She verbalized denial of drinking too much when told that she was being treated for alcohol withdrawal. She stated this denial more to herself than to the health care providers in the room, and it was reminiscent of the denial I have seen in my loved ones. This was ironic, I always thought, as the need for such self-deception in and of itself points to the fact that something may be wrong and worth addressing.But denial or not, today, this patient—Mrs. H, was entrusted into my care. She refused treatments and medications, and this put me in a complex ethical predicament—treating a patient that I do not like for the personal issues she reminds me of, and the treatment of a patient against their refusal, as she was deemed incapable of making her own decisions. The latter of these two issues was easiest to put aside. Legally, this patient needed to be treated through her alcohol withdrawal. Once her mental status cleared up, she could sign out against medical advice or choose to remain until a safe discharge plan was in place. There was a protocol and legal guidelines for this situation. However, no guidelines [End Page 10] truly exist when it comes to the management of a patient that you simply do not like. The result can be a near-instantaneous dread each time you must answer that patient's bed alarm, call light, or most basic needs. A negative bias takes over, and it would be an understatement to say that this affects the quality of care. Patients in situations like this—with providers who judge them as I have been guilty of—can easily become subject to derogatory remarks, health inequities, and biased labeling... (shrink)

Abstract:James Groves opens his 1978 foundational article, "Taking Care of the Hateful Patient," thusly, "Admitted or not, the fact remains that a few patients kindle aversion, fear, despair, or even downright malice in their doctors." Groves understood his article as pulling back the curtain on an experience that physicians had but that few dared discuss without shame. His taxonomy of four types of "hateful" patients: clingers, entitled demanders, manipulative help rejectors, and self-destructive deniers may still be instructive. However, the intervening (...) years have revealed that this taxonomy does not adequately capture the nuances present when patients are described as "difficult." This issue of Narrative Inquiry in Bioethics situates this complexity. Different kinds of providers in a variety of healthcare delivering institutions have offered accounts of their own interactions with so-called difficult patients. In each of these stories, the providers tell the reader how the providers were transformed through these interactions: what they learned about their patients, what they learned about patient care, what they could have done differently or better, and what lessons they have taken with them into subsequent encounters. (shrink)