{"title":"Editors' Note.","authors":"James M DuBois, Ana S Iltis, Heidi A Walsh","doi":"10.1353/nib.2024.a934170","DOIUrl":"10.1353/nib.2024.a934170","url":null,"abstract":"","PeriodicalId":37978,"journal":{"name":"Narrative inquiry in bioethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141917630","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Difficult Discharge in the Context of Suspected Malingering: Reflections on the Value of Epistemic and Professional Independence.","authors":"Amitabha Palmer, Colleen Gallagher","doi":"10.1353/nib.2024.a934175","DOIUrl":"https://doi.org/10.1353/nib.2024.a934175","url":null,"abstract":"<p><p>During a clinical ethics fellow's first week of independent supervised service, two unhoused patients on the same floor were resisting the medical team's recommendations to discharge. In the team's view, both were medically stable and no longer required hospitalization in an acute setting. The medical team suspected malingering for both. The social worker and case manager had employed their usual means of gentle persuasion and eliminating psychosocial barriers to no avail. Rather than call the police, the attending physician, social worker, and case manager decided to call ethics. These cases lead the fledgling fellow to consider the appropriate role for ethicists in difficult discharge cases. The article analyzes each case, evaluates their similarities and differences in the context of suspected malingering, and comments on ethical issues surrounding cases of suspected malingering. Finally, the authors reflect on the value and importance of developing and maintaining epistemic and professional independence.</p>","PeriodicalId":37978,"journal":{"name":"Narrative inquiry in bioethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141917628","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"When Ethics Survives Where People Do Not: A Story From Darfur","authors":"Ghaiath Hussein","doi":"10.1353/nib.0.a911253","DOIUrl":"https://doi.org/10.1353/nib.0.a911253","url":null,"abstract":" Healthcare Under Fire: Stories from Healthcare Workers During Armed Conflict 11 weredisrupted.Ahealthcaresystemwithoutpatients 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, we want to support local businesses. Sending our kids to school every day (it takes 1.5 hours one way) and paying for their studies is a personal act of patriotism. We lived through a very challenging autumn and winter with regular blackouts, cold meals, stuck elevators, melted fridges, and uncharged smartphones and laptops. Sometimes we had no water or heat. We have learnt how terrifying and ghostly a three-million-person city looks when submerged in full darkness—with no traffic lights, glaring signboards, or luminous windows. I recollect that in November, I had a meeting with representatives from a large international charity foundation who were considering giving us a grant. The day before that meeting, Kyiv was subject to the most severe missile attack, and there was neither power, nor water, nor heating at my home. In the midst of our meeting—when I was being told that we had to introduce a more sophisticated bidding procedure and have bidders send their offers in sealed envelopes—I burst out crying. Their procedure mandates were so irrelevant! In my mind, I was seeking a solution to how my family would defecate and urinate in our apartment on the 13th floor with no power and water if the situation persisted.1 At that moment, I hated all international donors for being so absolutely out of touch with what Ukrainians were going through. Only the looming prospect of getting USD $342,000 for our assistance programs kept me at that meeting. 1 Incidentally, I found a solution to my challenge and will share it with you—this is a valuable piece of knowledge—not like that bull sheet about bidding procedures. You must buy plastic garbage bags and pet litter. And here you are! I am writing this piece at the end of May 2023. Almost every night in May, we had a missile and drone attack. It is a very bizarre feeling—in the daytime, the city looks perfectly peaceful, merry, sunlit, and busy: with kids, ice cream, scooters, blooming lilacs, and chestnut trees. At night, “the city falls asleep and the mafia gets up”. We are living two parallel lives—sunlit peaceful days and then the horror of nights full of air strike alarms, explosions, and flashes of downed missiles in the dark sky. Some people spend nights in the metro stations, sheltering their kids there. Others sleep in corridors or bathrooms where there are no windows . I opt to stay in bed and let my kids sleep. I do not want them to be traumatized—they still ","PeriodicalId":37978,"journal":{"name":"Narrative inquiry in bioethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136094026","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Vagaries and Vicissitudes of War","authors":"Richard W Sams","doi":"10.1353/nib.0.a911251","DOIUrl":"https://doi.org/10.1353/nib.0.a911251","url":null,"abstract":" Healthcare Under Fire: Stories from Healthcare Workers During Armed Conflict 19 supposed to facilitate the family’s passageway through Iran into Iraq, again under disguise as part of a moving caravan of religious pilgrims. From there, they would be met by a non-governmental organisation operation who would fly the family in a military plane to a processing camp for refugees in Albania with no further destination in place for Azad to receive healthcare. Should I relay this option to the family even in the face of its futility, or should I deny the family their agency and refuse? Was I making a decision about the child’s fate? I stayed silent. With a few dedicated colleagues, I continued to pressure the British government while considering whether I should draw on the connections of an Afghan colleague based in the United Kingdom with a medical background. I was cautious about approaching my colleague. The cultures of conflict travel. I couldn’t be sure about any discriminatory views my colleague might have towards Hazaras. One phone call or one wrong move from me could lead to the family’s execution. The formal route of a government-supported medical evacuation to specialist surgeons collapsed. It did not reach a sudden death; rather, the leash to hope retreated and ebbed away silently as if the leaders with the key to power were ashamed. Their indifference was pitiful. The family escaped to another neighbouring country, where I met them some months later. The child would only cry. Cries were his only sounds. Or silence. Silence of a story that was beyond any words he would form. The father was bereft. At the moment of the blast, the child was sitting in the sky on his father’s shoulders. The legacy of trauma took away the child’s trust in his father’s embrace, the arms that had tried to lift him to another country, another life, another world. Now, the family is in exile in their third country in two years. Another language. Another culture. Another government. A child in conflict is never disentangled from war. Azad’s birth and near-death were imprisoned in the cradle of a conflict-ridden land. Will Azad return and live through the meaning of his name—freedom—in his lifetime, or will he, like his parents, forever be a war child? My final reflection is towards healthcare. My gaze now sees that healing is an ethical endeavour. The philosophy of medicine clashed with the confrontation of conflict, and for Azad, attacked and violated by indiscriminate armed actors, his story of suffering was written by the governments who failed to free him. B The Vagaries and Vicissitudes of War Richard W Sams II I 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 des","PeriodicalId":37978,"journal":{"name":"Narrative inquiry in bioethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136093890","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"How We Keep Caring While Walking Through Our Pain","authors":"Ola Ziara","doi":"10.1353/nib.0.a911245","DOIUrl":"https://doi.org/10.1353/nib.0.a911245","url":null,"abstract":"2 Narrative Inquiry in Bioethics • Volume 13 • Number 3 • Winter 2023 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.Afew 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 effective scholarship that focuses on the Israeli occupation and health conditions of Palestinians in the Occupied Palestinian Territory, I seek to give voice to those who often go unheard. In this specific instance, that voice belonged to a Jewish Israeli baby, whereas in most other instances, it is the voice of Palestinians. Academia sometimes makes us forget the real reasons we do what we do. We become embroiled in the ‘publish or perish’ game and focus on publishing for the mere sake of publishing and of professional promotion. Rejections sadden us, making us doubt our aptitude as writers and thinkers. Grant application and administrative work weigh us down. It seems that almost all of us have considered abandoning academic life at some point, following perhaps some job interview that went sour. For me, it is exactly during these instances that the image of the pale baby, covered by the ambulance ’s orange blanket, reminds me why I do what I do. Humanity’s past, present, and future are packed with unjust and untimely deaths, and all individuals have a responsibility to remember, attend to, and prevent them, respectively. The responsibility of healthcare workers and academics to do so is even greater. Naturally, the Israeli occupation is personally closer to my heart, but wherever unjust deaths occur, there healthcare workers and academics should be. Healthcare workers then have several roles during armed conflicts. First, they ought to provide care whenever care is due and as long as their safety is assured. Second, they ought to bear witness and speak truth to power. Through professional and popular outlets, they should warn the world that these events are occurring and urge that they should not happen again. Everything I do, both as an academic and as a physician, I do for him. B How We Keep Caring While Walking Through Our Pain Ola Ziara with support from Rachel Coghlan P alestinian-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","PeriodicalId":37978,"journal":{"name":"Narrative inquiry in bioethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136094693","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Stories of Families with Chronically Ill Pediatric Patients during the War in Ukraine","authors":"Vita Voloshchuk","doi":"10.1353/nib.0.a911249","DOIUrl":"https://doi.org/10.1353/nib.0.a911249","url":null,"abstract":" Healthcare Under Fire: Stories from Healthcare Workers During Armed Conflict 33 Adhering to professional and moral ethos during armed conflicts like the one in Ukraine can be challenging and demands a significant reorientation of personal and professional identity. The responsibility to provide each of their clients with as much support and emotional resources, without the ability for a referral or a treatment plan, is very difficult for those whose professional identity is about helping others, non-abandonment, restoration of mental health, and support their clients through the most challenging times of their lives. Furthermore, there is still much prejudice toward psychotherapy; many Ukrainian people worry about being stigmatized or called “crazy” if they see a psychotherapist. This attitude towards mental health changes, but the process is slow. Day in and day out, Ukrainian mental health clinicians witness the trauma of war, hear the stories filled with grief and desperation, and see the emotional aftermath and devastation the war has on people of all ages. The mental health clinicians work in environments that are not typical for therapy sessions; in hallways, in cramped offices with other therapists separated only by a thin fabric curtain to give some appearance of privacy. Despite all that, they continue to create space for hope and a future for those who felt they lost both. The Ukrainian mental health clinicians are soldiers fighting one of the most critical battles of our times, and they will win. B Stories of Families with Chronically Ill Pediatric Patients during the War in Ukraine Vita Voloshchuk F ebruary 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 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 th","PeriodicalId":37978,"journal":{"name":"Narrative inquiry in bioethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136093875","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"A Semi-Personal Story from a Ukrainian NGO Professional (or a Semi-Professional Story from a Ukrainian Person) Living through the War","authors":"Yuliya Nogovitsyna","doi":"10.1353/nib.0.a911241","DOIUrl":"https://doi.org/10.1353/nib.0.a911241","url":null,"abstract":"10 Narrative Inquiry in Bioethics • Volume 13 • Number 3 • Winter 2023 Medicine, Loyola University Chicago, for motivating and providing us with strong support, and for her editorial work on this narrative. B A Semi-Personal Story from a Ukrainian NGO Professional (or a Semi-Professional Story from a Ukrainian Person) Living through the War Yuliya Nogovitsyna I 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”. 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 healthcare 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","PeriodicalId":37978,"journal":{"name":"Narrative inquiry in bioethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136093888","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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