Conjoined Twins

Chang and Eng Bunker. Born 1811. Thailand.

 

One might wonder how conjoined twins manage to survive – physiologically, mentally, and emotionally – after surgical separation. While some sets of conjoined twins, for medical reasons, cannot be separated, as in the somewhat famous case of Brittany and Abby Hensel, since 1987 several have been successfully separated. In some cases, conjoined twins, who are old enough to make thoughtful choices, have refused to be separated. Lupita and Carmen Andrade, who were expected to live only three days after they were born, not only defied the odds, but are now living together, literally. Both refused the option to be separated. According to the Deccan Chroniclethe twins say “it would be like cutting them in half.”

The decision to surgically separate conjoined twins is not one to be taken lightly. Inevitably, ethics comes into play. The most urgent question of all: What if one twin must be sacrificed? Do we allow one twin to die to save the other? Which twin’s life matters more? The questions are endless, questions I can’t imagine having to face if I were the parent of conjoined twins.

You might be wondering why I’m writing about conjoined twins, why I’m sharing with you this extremely rare and mind-blowing phenomenon. I’m sharing all this with you because I cared for a set of conjoined twins as a neonatal intensive care nurse. Though decades have passed since I held all *fourteen pounds of sweetness in my arms, fed them, changed their diapers, and held my breath as I waited for the then eight-month-old twins to come out of the hours-long surgery, I’m still awestruck. So what does a writer do with all that awe? Naturally, she writes about it. Which is exactly what I have done in my essay, “After,” published today at Intima, a literary Journal dedicated to promoting the theory and practice of Narrative Medicine. Created in 2010 by graduate students in the Master of Science program in Narrative Medicine at Columbia University, Intima has featured writers in the literary and medical fields from around the world.

Thank you for reading “After,” and feel free to follow-up with thoughts, questions, and, of course, your own awestruck moments.

 

*fourteen pounds is a guesstimate.

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Compassion Fatigue

You’ve heard of “burnout,” right? Your work environment is making you miserable, so miserable that you feel unfulfilled, depleted of energy, stripped of all motivation to effect change in the workplace. If you’re a healthcare professional, undoubtedly, you know all too well about burnout. But then there’s “compassion fatigue.” While individuals working in any kind of job setting can experience burnout, compassion fatigue is unique to those exposed to trauma while working in a helping profession: nurses, firefighters, police. Because you’re in the helping profession, you feel the onus is on you to save peoples’ lives, to make them better, to alleviate their pain, so you sign up for extra shifts, and, if you’re a nurse, offer to take care of the sickest patients. But what happens when your patients have little, or no family support, or are constantly ringing the call bell, making demands (get me water, I need more pain meds, I need something to help me sleep)? You feel like Sisyphus – no matter how many times you push the boulder up the hill, it keeps rolling back down into your weakened arms. You’re worn down, irritable, angry. That’s compassion fatigue, when you can no longer muster the sympathy to care for your patients because you’ve been exposed to the same kinds of patients again and again, and have answered an uncountable number of call-bell dings, but the bells keep dinging, and you want to keep helping, but, at the same time, you want to run.

It’s worth noting, however, that compassion fatigue doesn’t necessarily mean individuals experiencing it lack compassion, not at all. They still care about their patients. Instead, as a nursing professor at the College of Nursing at University of Arizona says, compassion fatigue is more like feeling too “full,” and even suggests a different name for it: “emotional saturation.”

Not only are healthcare professionals at risk for compassion fatigue, though, family members caring for loved ones with, say, a traumatic brain injury or dementia, are at risk too. Even those who hear about another’s traumatic experience over and over again are affected. I bring these scenarios into the mix because, sadly enough, I suffered from compassion fatigue when I worked tirelessly to navigate my father’s emotional swings, and, as he slipped into Alzheimer’s, made sure he was safe at home because he had insisted he never be put in a nursing home. And I’m witnessing compassion fatigue again, as my husband and his siblings stumble then pick themselves each day, determined to keep their aging mother safe from the ravages of dementia.

But it is possible to care too much, so much that it hurts. When I say hurt, I mean really hurt, as in traumatized hurt. Being pre-occupied with others’ suffering can cause “secondary traumatic stress” for the helping individual. It’s not unusual to experiences symptoms of post-traumatic stress disorder: anxiety, hyper-vigilance, irritability, impatience, withdrawal, poor concentration, sleep disturbance, nightmares, the list goes on.

What’s the cure for compassion fatigue? Boundaries and self-care. In other words, set limits, say no even when you want to say yes, remind yourself to take time out, meditate, go for a walk, keep a journal, draw, listen to your favorite music, dance, do yoga, take a bath, read a novel, watch a funny movie. Watch the sun set. Watch the sun rise.

For more resources on how to evaluate whether or not you have compassion fatigue and how to prevent/treat it, go to compassion fatigue and healthy caregiving.

 

 

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Salary Gap Between Male and Female Registered Nurses

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Though salary differences have narrowed between males and females in many occupations since the passage of the Equal Pay Act in 1963, the results of a study conducted by the University of California San Francisco (UCSF) showed a marked salary gap between male and female registered nurses, with males earning greater than $5000 more per year than females. The largest pay gap was noted in cardiology, and the smallest difference in the chronic care setting. Orthopedics was the only specialty area in which researchers found no significant difference. With nursing being a female dominated profession, this pay discrepancy affects more than 3 million women in the United States. Researchers gathered data from two well-known sources, for a total sample size of 290,000 registered nurses. During each year of the study, researchers found that males earned greater salaries than females. What is even more alarming is that they also found no significant changes over the course of the study.

The study did not look at the reasons for the differences in salaries, but health care professionals say a number of possibilities exist such as workplaces being interested in diversification, men being better at asking for more money, and women leaving the workplace to have children.

So what’s next? Researchers plan to analyze the reasons for the gaps in pay. In the meantime, if you are a female registered nurse, the results of the UCSF study offer an opportunity for you to advocate for yourself and ask your employer why salary differences exist between males and females in your workplace. What better time than now to eradicate gender bias once and for all?

 

 

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Benefits of Being a Military Nurse

 

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Are you interested in entering the nursing profession? If so, you could not have chosen a better time to do so. The fastest growing field in the United States is healthcare, with more than 3.5 million jobs projected to be added to the economy by 2020. One-third of that number will be registered nurses. If you are planning to go to nursing school, you may be interested in one of the more popular specialties: neonatal nursing, midwifery, or critical care. Or maybe you’re interested in military nursing. Nursing School Hub, a website dedicated to providing resources for those interested in the nursing profession, recently posted an info-graphic article, “The Military Nurse’s Toolkit.”

The benefits of being a military nurse may tempt you: loan repayment, world travel, and the opportunity to help a broad population. It goes without saying that military nurses face risks: physical injury by enemy combatants, and psychological stress from exposure to injured and deceased soldiers. If you have not read my post about PTSD and nurses, I encourage you to read it here.

If you are not interested in military nursing, but are eager to learn about nursing-related topics, such as scholarships, must read books for nurses, top nursing schools and jobs, and where to find a job, I recommend taking a good look at Nursing School Hub’s website.

 

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Twenty-Two Week Preemies, Should We Save Them?

Are you a neonatal intensive care nurse? Do you believe we should save premature babies born at twenty-two weeks? What kinds of treatments does it take to save a fetus whose viability is uncertain?

The New England Journal of Medicine recently published the results of a study showing the outcomes for five-thousand babies, born between twenty-two and twenty-seven weeks, at twenty-four different hospitals. The purpose of the study was to see if differences in hospital practices regarding initiation of treatment for these babies could explain the variation in survival with and without impairment. No babies born between twenty-two and twenty-three weeks survived without treatment. A small number received aggressive treatment, and a fraction survived, some with significant complications.

Researchers hope the study will offer physicians solid data to help them council parents. Undoubtedly, it will fire-up the debate concerning the age of viability. In a summary of a 2014 workshop, the American College of Obstetricians and Gynecologists and the Academy of Pediatrics noted that babies born at twenty-three weeks should be considered viable, as more than a quarter of them survive with intensive treatment. In the summary, it also states that no treatment is helpful for babies born at twenty-two weeks. The gray zone occurs between twenty-two and twenty-three weeks. Survival depends on factors such as birth weight and whether or not the mother received steroids prior to delivery to help the baby’s lungs and brain.

That is a narrow window. If a mother is ready to deliver at twenty-two weeks and six days, do we say, “sorry, there’s nothing we can do?” Add to that gray zone the reality that due dates are an estimation. What if that same mother was really twenty-three weeks pregnant?

In 2001, as a NICU nurse at a large teaching hospital, I cared for a baby born at twenty-three weeks. Her eyes were still fused shut and her skin was so thin the nurses only changed her diaper when absolutely necessary to avoid any injury. We kept her on a ventilator for twenty-four hours, the time it took for her parents to arrive from a community hospital several miles away, where her mother delivered the baby. She died within minutes after a respiratory therapist removed the breathing tube.

During my four year NICU career, I don’t recall any incident of initiating life-saving treatment for twenty-two week preemies. The cut off was twenty-four weeks. Many of those babies did well. For several years after they were discharged home, I kept in touch with some of the families and learned that Baby B was in first grade and reading, or Baby C was seven-years-old and playing soccer. It did my heart good to know they were healthy and vibrant children.

Technology has improved over the past thirteen years – if that twenty-three preemie I cared for in 2001 were born today and received aggressive treatment, maybe she’d survive. I’m not suggesting we stop initiating treatment for extremely premature babies, but with technology pushing us harder and further, with no indication in the near future of it breaking down, I wonder to what extent we are willing to let technology dictate? How far are we willing to turn that knob on the ventilator? What if Baby Z ends up with cerebral palsy, and is never able to walk, talk, or feed herself? And then there’s the flip side. When do we say we need to do more, we can’t give up, we have the medicine, the machines, the formula? What if we inject just one more dose of adrenaline? What if we press one more time on Baby Z’s chest? What if we do nothing and regret it?

As a nurse, I ate those kinds of questions for breakfast. But the answers are gray, and that gray only seems to be getting grayer.

Please, feel free to respond, react, reflect.

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Force-Feeding: An Ethical Dilemma

What are your thoughts about the practice of force-feeding individuals who refuse to eat?

As nurses, we sometimes find ourselves in situations where we are asked to carry out clinical tasks we believe are ethically unsound. For instance, let’s look at the case of the Guantanamo-Bay prisoners who went on a hunger strike in June 2014. The military nurse assigned to them refused to force-feed the prisoners “because it felt wrong,” he said (http://www.washingtonpost.com/force-feed-detainees).

If he were to follow through with the orders to force-feed a suspected criminal, this is how it would likely play out: strapping the prisoner to a chair or bed, pushing a long rubber tube into his nose, down into his stomach, while he twists and flails, fighting to maintain a semblance of dignity.

Nurses choose to become nurses because they want to help those who are vulnerable, physically and emotionally. Nurses approach their patients as a whole entity, the mind and body a seamless system. They listen to their patients talk about their fears and anxieties. They sit with them during the night when they are awake in pain, and administer medications to ease their discomfort. They advocate on the behalf of their patients. The nursing code of ethics is clear about the role of a nurse:

The nurse, in all professional relationships, practices with compassion and respect for the inherent dignity, worth, and uniqueness of every individual, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems (http://www.nursingworld.org/Mobile/Code-of-Ethics).

According to that code, the nurse at Guantanamo acted within his rights. He acted with respect, and preserved the prisoners’ autonomy to make decisions on their own behalf. By refusing to force-feed the prisoners, he was protecting each of their individual rights.

The Guantanamo Bay case is clear-cut, but what about circumstances that are not so black and white, like force-feeding a patient with Anorexia Nervosa?

Withholding feeding, and fluids, is common practice in the terminal stages of an illness. But anorexia is not considered a terminal disease, yet patients do die from poor nutrition. Thus, feeding them is a life saving measure. But, unlike the Guantanamo prisoners, what if anorexic patients are not competent, meaning they cannot express their wishes due to cognitive impairment from severe malnutrition? What if these individuals had already displayed, through aggressive behavior, that they did not want to be fed? Do medical professionals, and family members heed those pre-incompetent wishes? But most people with anorexia have difficulty making decisions, so though they are fearful of gaining weight, and therefore starve themselves, they are not necessarily suicidal. So it’s hard to know the exact wishes of the patient (https://www.childrensmercy.org/ forced feeding in anorexia nervosa.pdf).

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Other than force-feeding someone as a means to save a life, how else does this benefit a patient who is uncooperative, who has been administered feedings and intravenous nutrition numerous times without lasting success? When does the intended beneficent act venture into an act of great emotional, and physical, harm for the patient (https://www.childrensmercy.org/ forced feeding in anorexia nervosa.pdf)?

The ethical questions are endless. But, for nurses, and other medical professionals treating those with anorexia, they are worth examining.

 

Please note: the information set forth in this post is not representative of the opinion of the author, Melissa Cronin.

 

 

 

 

 

 

 

 

 

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