Read the Mother Courage article and the DIY scientist articles. What major ethical error did a doctor make in the first article? How do you attribute the difference in insight between this doctor and Jill Viles?
Write your answers as a reply in the comments section
The doctor that referred the boy Christopher, to the neurologist, didn’t run any tests, presumably because he felt he knew the condition that was presenting itself. The neurologist was extremely unethical by telling the mother that there was no hope for the sons, and then to basically belittle her for having a second son. He assumed that she knew about the disease being in her family, rather than asking, or testing to see where and when it presented itself. The doctor that helped Jill reach out to, and make the connection to Priscilla, was familiar with these situations, but was also handed research information and indicators of proof (19 pages) from Jill. So, maybe his willingness to help was influenced by her knowledge on the subject, as well as his own.
The neurologist in the Mother Mercy article who diagnosed Pat Furlongs sons with Duchenne did several unethical things. First, he told her to give up, and that there was no hope. He then berated a clearly devastated mother.
The difference between the advice the neurologist gave and Jill Viles could not be starker. When she couldn’t find answers about her disorder, instead of giving up she dove head first into research. Her insights were repeatedly rejected, yet she persevered. Her perspective was different than the Doctors, because she could see it in herself and her family. Her hard work and unique insight enabled her to diagnose herself, members of her family, and make valuable contributions to research being done on Emery-Dreifuss.
And she didn’t stop there.
When she recognized the similarity of symptoms between her family and the Olympic sprinter Priscilla, she again trusted her instincts and took it upon herself to research the situation. Her hard work and personal insight again helped her understand the symptoms better, and helped save the life of Priscilla.
The way that Jill Viles handled her situation stands out in stark contrast to the advice the neurologist gave to Pat Furlong. She did not give up, she drew knowledge from her own hands-on experiences, and she was able to make a difference for herself and others.
The Mother Mercy article highlighted a neurologist who was very unethical in dealing with the mother and child with Duchenne. The doctor showed no empathy or care for either of them and even went as fast as to say there is no hope. A doctor is there to provide hope to people and not lie but give them the hope they need to get through. You especially do not make the mother feel like having the second child was a mistake inn any way even if morally it was unethical. Not only should the doctor have been more respectable but it is also their jobs to give options to the patient. For example, suggest that she tests for the disease in any way. I am proud of the way Jill did the right thing by taking it into her own hands and that is what everyone should do for them self.
I attribute the difference in insight of the neurologist from the mother mercy article and Jill is that Jill had a growth mindset while the neurologist stuck to what he and the medical community already knew which was that Duchene was a rare disease and it was unlikely the boys had it. This is the wrong approach because all medical professionals should think of themselves as scientists Always knowing that new discoveries and treatments are yet to made. The biggest ethical error he made was in telling the mother there was no hope and even that she should have prevented or aborted her children. while Jill and even the boys mother would not except no explanation. Jill so much so that she took it into her own hands and was treated how most scientists are at first, like she was crazy and that there was no way. persistency was key in her case and many other scientists.
I think the doctor who essentially told Pat Furlong to “give up” on her children, and chided her for having her second son, made a major ethical error. He assumed that Duchene muscular dystrophy must have been present in her family; however, it was the result of a spontaneous mutation, and there’s no way that Furlong could have known about it before her children were diagnosed. I also think that choosing to have a child, regardless of the probability that they might have a genetic condition, is a personal decision. As a medical provider, it was the doctor’s duty to help Furlong and her children embrace any obstacles or difficulties that they would face as a result of their diagnosis. It’s interesting because Jill Viles knew that she was a carrier for Emery-Dreifuss, and that there was a 50/50 change that she would have a child with the disease, and she still had a child. Obviously, Viles had a different view than Furlong’s doctor. She actively sought more information about her condition, even diagnosing herself, and embraced the diagnosis and the challenges it presented. I attribute the difference in insight between Furlong’s doctor and Viles to Viles personal experiences growing up with muscular dystrophy.
The doctor in the Mother Mercy article seemed to violate his duty as a physician to do no harm and neglected the care of his patient by telling his mother there were no other options. Though the diagnosis his patient was given had a poor prognosis, he didn’t discuss with the mother what she wanted to do and possible treatment options. Jill Vile’s seemed to be personally motivated to research why she was experiencing the symptoms she was (such as weakness and frailty); whereas the doctor in the first story might’ve felt detached to the condition of his patient which is why he dismissed it so quickly.
In the first article, Mother Courage, Pat Furlong went to many doctors fearing a diagnosis for her two young sons. After an injury, Furlong went to a doctor that gave her a diagnosis on the spot without running any tests. He also did not provide any treatments options or information. This left the woman upset and provoked.
The second article, The DIY Scientist, Jill Viles sent a package to an author of a book that tied to link athleticism and mutations in Olympic Athletes. Viles had noticed that Patricia Lopes had the same mutation and continued to investigate her illness while medical knowledge was progressing and changing.
The first doctor should have been been more open to researching new ideas and methods, rather than giving terminal news on the spot.
In the Mother Courage article, the neurologist made a major ethical error when he berated Pat Furlong for having children. However, at the time Pat had her second son, there was no strong evidence that her eldest son had a genetic disability. The first son’s symptoms progressed slowly and Pat hadn’t realized it was something to be concerned about until her second son also started showing symptoms, and in a more severe way. This neurologist was completely out of line to belittle Pat and suggest that she should have aborted her second son as though living with this disease makes living not worth the trouble. Instead of being a source of realistic optimism this neurologist essentially told Pat to start picking out headstones for her sons. The neurologist did not stop to think that this case of Duchenne’s was due to a spontaneous mutation.
Jill Viles, on the other hand, never stopped looking for answers. Even when she pin-pointed her two rare genetic mutations, she was still eager to learn more. Jill did not give up even when she found out many people with Emery-Dreifuss die by age 40, or when her father succumbed to the cardiac problems caused by the disorder.
In the article, Mother Courage by John Colapinto, an orthopedic doctor makes a major ethical error when a mother brings her two boys in to get checked out. When Mrs. Furlong brought her two sons in, the doctor immediately diagnosed them with Duchenne’s disease without running any tests. She was then referred to a neurologist who told her that there was no hope for her boys and they were going to die. Following this horrific statement, she then told the mother she should have prevented her second pregnancy and then she would not have had a second child with this horrific disease. As a doctor, she should NEVER tell a mother it is her fault her children are sick. This was a silent mutation that the mother was unaware of and the doctor should encourage her. There should be hope instilled in the family, not fear and regret. The difference between this doctor and Jill is that Jill has hope and wants to do everything possible to cure herself and those in the future. This doctor had no hope and wasn’t willing to figure out how to cure Duchenne’s. I believe this difference comes from the personal motivation Jill has to be cured since she is the one with the disease, whereas the doctor is not personally affected.
In the Mother Courage article, the error is obvious when the doctor belittles and blames the mother for having a second son for many reasons. He incorrectly assumes she knew the condition was present in the family, ignoring the fact that it can (and was) caused by spontaneous mutation. He also assumes that she knew the risks before her pregnancy and even if she did, as a medical professional, he should provide treatment to his patients while being free of judgement. Even so, I think that his statement that there was “no hope and no help” was just as devastating. Although there hadn’t been discoveries regarding steroids at the time of the diagnosis, by stating there was no help the doctor not only sends the message that they cannot do anything in regard to treatment of the boys, but also that nobody would even like to try. Instead of offering support or hope, even by connecting their family to others in similar circumstances or showing how they can best prepare, the doctor further isolated the mother with their struggle. I think this mindset was most different from that of Jill’s in the second article since Jill was able to recognize the hope for those in the future. By doing so, she was able to help save not only her father’s life but also Priscilla’s. Additionally, even after her self-diagnosis was justified by the genetic tests she had sent she continued to look for an explanation of her disease. I think that by Jill’s perseverance to determine the methods of her disease through its connection in others it shows how she was searching for understanding. She knew it might not provide help to her immediately but would benefit all of those it affects in the future. I think this desire for understanding is what the original doctor lacked most.
In the Mother Courage article, one major ethical error that occurred was made by the neurologist in Cincinnati. Accusing Furlong that she should have known about this disease was ignorant and unnecessary. Not only did the doctor say that there was nothing that could be done, but he also stated it could’ve been prevented. By telling her she should have gotten an abortion and placing the blame on her was in no way beneficial to the situation and could’ve potentially caused more emotional anguish for the family. The doctor’s ethical responsibility is to educate and provide helpful information, not place blame on past decisions that cannot be changed.
Jill Viles also heard that there was nothing that could be done for her. However, in contrast with the first doctor, Jill did not quit. She constantly researched her condition and became educated, sought medical help, and continued to fight. The importance of these two stories is that hope is vital in making a difference for those affected with these conditions in the future.
In the first article, the neurologist was unethical in the ways he went about his work. He blames the mother and tears her apart. As a doctor, his job is to help his patients in whatever ways he can. However, tearing them apart and pointing a finger does nothing but wearing the patients self image. He should have provided a list of things he could do rather than shame her. Jill was the complete opposite of the doctor in the first article. Rather than giving up and pointing fingers she worked tirelessly to find a solution to her problem. One potential reason for the difference is that this disease personally affected Jill and it did not the doctor.
The Mother Courage article goes through the process of how Pat Furlough’s boys were diagnosed with Duchenne’s muscular dystrophy. The neurologist in the article was extremely unethical in his handling of the presentation of the diagnosis to the Furlough family. By telling the family that “there is no hope, no help” and “they are going to die” the neurologist was neglecting his scope of care to offer help for these boys and he also was emotionally harmful to the family by telling their parents that they’re just going to die. That wasn’t even the end of it however, he even went further to say this chromosomal abnormality was Pat’s fault and that she should have known better. He also went on to say that she should have aborted her second son. Having a disability or genetic condition does not devalue someone’s life and it is not the neurologist’s place to tell a family that a genetic condition is their fault. Instead of berating and belittling Pat, the neurologist should have shown optimism, giving the family possibilities of therapies, medications and other specialists that may help the boys have a better quality of life, even while at the same time giving the family the statistics of the disease so as not to promise a magic fix. Pat and her family deserved options and they were given none by the neurologist.
Jill Viles is a woman who has a genetic form of muscular dystrophy known as Emery-Dreifuss. She had struggled with her wasting and painful muscles most of her life and wanted answers not only for herself, but for her family and someone she didn’t even know. Jill differs from the neurologist in the Mother Courage article in that she never lost hope and never once said there was no hope to be found. She dedicated her adult life to learning about her mutation and disease to educate herself and others. Through her studies and research she was able to save her father’s life at 45 even though he would later succumb to his cardiac issues at 63. She also helped Priscilla reach a diagnosis of Dunnigan-type lipodystrophy. Jill kept moving forward and displayed that hope can be found anywhere if you want it bad enough, unlike the neurologist in the first article.
Many ethical errors were present to me when I was reading “Mother Courage”. The first one was that the neurologist belittled Furlong and states that there was no hope or help for her sons. As a doctor, it is their job to attempt to help the patient and the family, reassuring them and making sure that they are not dismissing concerns. Additionally, he blames her, stating that she shouldn’t have had a second child. Not only is this not his decision or his right to state, it oversteps as a doctor and physician. The neurologist should have provided the distressed mother with support and empathy, providing her with possible ways to ease discomfort or help to ease symptoms.
When reading “The DIY Scientist, the Olympian, and the Mutated Gene” after the previous article, it was clear to see the different in insight between the doctors. Jill acted with persistence and optimism, committing her life to find information about her disease. She didn’t give up and continued lives and provide hope.
While the first article showed no hope or optimism from the medical field, the second show hope and persistence in the face of obstacles.
In “Mother Courage”, the doctor makes a major ethical error by chastising the mother and immediately giving her no time to process the diagnosis. Without giving any options, he claims there is no hope for her sons and tells her to accept it. Additionally, he questions why she would even choose to have a second child, or why she would not choose to have an abortion, both very personal decisions where a doctor should always serve as a support system to a patient, not belittle them. Physicians are the ultimate patient advocate and are in place to offer all possible resources and hope, while doing no harm. Further, the doctor was assuming (something that should never be done as a provider) and making claims to Pat such as the mutation being her own fault, even though she had learned that in this case the mutation had been spontaneous. The difference between this physician and Jill Viles belonged to the true passion and perseverance displayed by Jill. She spent countless hours studying and relentlessly searching for an answer. She wanted (as well as Pat Furlong) to better the outcome for other people than just herself and was selfless in her journey. The physician in Mother Courage wanted to play it safe by sticking to what was known and instead of using his position and power to search for answers, decided to remain idle. A physician advocates for those not able to and not in as high of power, something this physician deeply lacked. Jill showed true determination and passion and ended up being correct in her own diagnosis.
There were several doctors who displayed unethical behavior and attitudes in the Mother Courage article, one of whom made the horrendous choice to berate Furlong for choosing to have another child when her first had Duchenne. This is a incredibly out of line for a physician in any case— it is never the responsibility of a physician to place harsh blame on their patients, especially for genetic factors completely out of their control. But in Furlong’s case, it was made even worse by the fact that she did not know her first son had Duchenne before having her second, and it does not in fact run in her family (this case was one in which a spontaneous mutation caused the disease). And even without consideration of any of the factors I’ve just listed, to place blame on a loving mother for her children’s terminal illness is lower than low. This same doctor sent the family home, telling them that there was no helping this and that the children were going to die. Jill Viles on the other hand, with her smart, sure, and convicted spirit, went to great lengths to find out more about her disease and create hope for herself and her family. This is a good example of what medical education sometimes does to people who’ve been through it— biomedicine is such a large and powerful institution that people who have been educated within its walls believe that there isn’t anything more to know outside of their training. Jill Viles was open to all of her resources and committed to putting together the pieces of a very scattered puzzle, and in her case, a kind of medical detective work allowed for greater discovery than individual doctors could themselves make.
In the first article, Mother courage, there were many unethical issues made by the doctors. The mother of the two boys, Pat Furlong had two boys diagnosed which Duchenne Muscular Dystrophy, a fatal and rapid muscle-wasting disease. The first doctor ran no tests, but did rightfully refer the children to a specialist. The neurologist at the childrens hospital confirmed the diagnosis of Duchenne. The neurologist made many ethical errors by asking Pay why she didn’t abort the boys and made her feel hopeless by claiming that they were going to die. Although it is okay for a doctor to make the patient or guardian of the patient aware of possible risks of a disease, to go about it as bluntly as the neurologist did is just wrong. He also put his own crude opinion into the conversation by asking Pat why she had the children claiming she should have aborted them. This is a terrible thing to say and the complete opposite of how a doctor should behave.
Jill Viles, was a very hopeful and determined individual, and despite suffering from a genetic disorder called Emery-Dreifuss. The doctors in Mother courage were hopeless and did not bother to find out for sure if the diagnosis was correct and if anything more could be done to help the two boys. However, in the DIY Scientist, she believed in finding out more about her condition. She wanted to find out if there was any way she could help herself and others just like her. She didn’t believe what the doctors were telling her and went out of her way to find her own answers, which were then found to be the correct diagnosis.
“No clinical trials for Duchenne existed, but Furlong persuaded Bonsett to launch one using the compound. She helped fund it with the money she had borrowed from the bank, and made sure that her sons were included.”
For some reason, that line was one of the lines that struck me hardest about the Mother Courage article. The thought that an individual should ever need to finance the research for their own medical treatment is astounding to me, and not the least of the ethical issues raised in these articles.
For sure, I think it’d be easy for me to sit here and pass judgment on how these individuals acted or should have acted. However, I think it’d more reasoned to commend the doctors in the Jill Viles story for the paths they’ve set down—namely, the fact that they sought to be researchers while the doctor in the “Mother Courage” article sought, primarily, to be a physician. It’s easy to conflate the two professions.
This may be an oversimplification, sure. Nonetheless, these were heady articles, and I appreciated reading them.
The major ethical issue that arose in the first article, which I believe crosses a line, was when the mother went to see the neurologist in Cincinnati to get an initial diagnosis. The doctor made a presumption about the mother’s genes which were uninformed and hurtful. The doctor assumed that the mother was already aware of her genetic defect because he assumed the defect was familial. Unbeknownst to her, she obtained a random mutation which was passed on to her two children. Physician’s should educate, instruct and inform patients, allowing them to make the best personal decision with the best information. The doctor crosses over into harsh judgment when she blames the mother for her sons’ condition and tells her that she should have aborted the second son.
The biggest difference between the prior doctor and Jill Viles besides ethics, is an open-mind and a deep understanding of genetics. Genetics is still a relatively new field and older doctors most likely have a dated education of the field. Jill enlisted the help of experts and professional athletes to decipher the difference in their bodys’ responses to a muscular dystrophy genetic defect. She persisted in solving the problem and not throwing up her hands saying it was all she could do and give up. It’s admirable.
Major ethical error that the doctor made in the ‘Mother Courage’ article is that the he gave up on doing any further treatments or recommendations. He told her that there is no hope and that Furlong’s kids are going to die. He even blamed her on her decision to have a second child. This is highly unethical. Not just that instance but various other doctors and researchers refused to meet with her and help her due to the lack of information on the disease and the funding for the process. Which to me is not the right thing to do. Whereas on the other hand Jill Vile wasn’t like those doctors. She made an effort to find out what was wrong with not just her but also her family members. She took matters into her own hands and diagnosed her disease on her own. This in itself is a great example for many people. Although its unfortunate that the patient herself had to come up with her diagnosis rather than her doctors it still is a very commendable job.
The neurologist in the Mother Mercy article made several ethical errors. He completely lacked empathy, blamed her for her childrens’ conditions, assumed she was ignorant of a history of the disease in her family, and scolded her for having a second baby instead of preventing it or having an abortion. He also gave no helpful advice, possible treatments/clinical trials, or specialists to contact but instead told her to take the boys home and love them until they die because there was no hope for them.
There is a vast difference between that neurologist and Jill Viles. Jill was determined to continue digging for information leading to a diagnosis or related conditions and potential causes. The neurologist was matter-of-fact with the diagnosis and expected prognosis and did not have any interest in putting forth effort to find answers or connect people who may be able to find them together. In other words, Jill was hungry to keep learning while the doctor didn’t think there was anything for him to learn. The neurologist was emotionally detached and pessimistic. Jill was realistic but also remained invested even though she may not benefit from her many hours of research- she was happy knowing she had been right about her diagnoses and had helped her father and Priscilla Lopes-Schliep extend their lives.