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?
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For a professional Neurologist specializing in degenerative disease, not considering the fact that one in three cases of Duchenne disorder appear spontaneously was was a huge ethical error. He wrongly assumed that the cause of the disease was a genetic inheritance without even looking for evidence in both parents.
Jill Viles learned more about her condition than any other researcher because she looked at her family’s history, physical symptoms and sifted through information that none had done so.
I think one of the most major ethical mistake was that the doctor said Furlong’s son had a life threatening form of muscular dystrophy, before running any tests. If he had been wrong that would have caused a lot of unnecessary stress for the family. He was right of course, but tests should have been run first. I think the difference in insight between the doctor and Jill Villes, is because Jill had to teach herself everything.
There were multiple ethical issues in the Mother Courage article. The first was all of the doctors fear and avoidance of meeting with the parents of the children with these disorders. The mother in the article had to lie in order to meet with a doctor and discuss her children. Although these parents may be emotional about their children’s disorders, they are going to be the best source of knowledge for the ins and outs of the disorder and what it is truly like to live with it. When the doctors avoid these parents, it led to a lack of interest and research into these rare conditions.
The difference between those doctors and Jill Viles is that she was dealing her own personal disorder and not the disorder of her children. I think they were more likely to listen to her because it did not involve her children. Although Jill ran into a lot of push back initially when the doctors did not believe that she had the condition that she know she had, eventually she was able to find doctors that could diagnose her.
In the article Mother Courage, a very detailed description of the issues and concerns were addressed before even meeting with the Neurologist. The last child Patrick was described as “floppy” and the son before, Christopher was delayed in motor skills. All around their hometown, the problems were dismissed and when the calf injury appeared, and the thought of the boys having Duchenne crossed the father’s mind. The father dismissed it because “it’s not a diagnosis you want to make” and “there was no family history of the disease.”. The neurologist’s explanation of why it occurred was much more drastic. The neurologist was quick to make diagnosis and explanations for the disease occurring as opposed to taking the time to research the family history and other reasons why the trait was exhibited. The neurologist then made assumptions and judgements based on facts that were not even able to be held accountable at a later time. Instead of researching the issue to the root like Jill Viles did, the doctor relied on a generic set of thinking that was not applicable to the patient or patients history. Doctors are taught to focus on the facts and information they hold true and sometimes differing opinions and rare cases lead to insufficient care because of it. Becoming familiar with each situation and treating it as new ground can lead to more innovative research and correct care. Jill Viles started at the base and worked her way up to research and discover her diagnosis.
In the Mother Courage Article there were many ethical issues that could be noted. The Neurologist that Furlong took her sons, Patrick and Christopher, to was quick to make the diagnosis of Duchenne with little research. In addition, the doctor was unethical in making statements, such as, “there is no hope and no help– just take them home and love them. They are going to die.” He also criticized Furlong for having a second son accusing her that she should have known about this as it is a genetic condition, and could have aborted the pregnancy had she known. His unethical statements wrote the boys off with little answers or help. Furthermore, as she continued on her journey for more extensive research and cures it was seen that many of the doctors feared meeting parents and Pat had to lie to be able to get answers. The difference in insight between the doctor and Jill stems from their backgrounds. The doctor attended many years of school and was tasked with a “job” to come up with an answer for the boys. He relied on knowledge, results, and facts to give the family a diagnosis. Differently, Jill’s stemmed from a personal curiosity and wonder of what was going on with her body. She started with no background other than her own symptoms and devoured research until she found her diagnosis. She was persistent in knowing that she would need to educate herself in order to better herself.
Both of these articles were fabulous, but Jill’s article truly amazed me!
I think the big thing that Furlong did incorrectly, at least ethically, was handle this situation without looking at a lot of the facts as they were, like when she neglected the fact that her children were a small amount of cases in which Duchenne was not developed genetically, and instead spontaneously. I also feel like a lot of inferences were made about the disease and the process on how to cure it that weren’t based on a scientific mindset, and was entirely driven by emotion, which makes sense, seeing as though her children were on the line, but it still is no way to try and solve the issue.
Many of the ethical issues with the first article seem to be remedied in the second with Jill Viles. In her case, a lot of the research was done ahead of time and seemed to be dealt with a lot more systematically. Because of her control of the situation, she was able to find out where the disease started and traced it through her lineage. Also when she did, she took extra precautions to make sure that trying to figure it out was a much smoother process than in the first article.
The major ethical error I saw from ” Mother Courage” was the continuous disregard for any observation that wasn’t from a medical professional. I do understand that physicians must have multiple inquiries a day, especially from distraught parents, but thats what medicine is about. In the midst of trying to maintain a work-life balance it may be easy to forget the reason behind going into the medical field. It is about respect, it is about listening, and its about learning. It was so unbelievably rude and unprofessional for the doctor to decide what Furlong should have done with her child when she they first got the diagnosis. Not only was this an immediate response of the doctor to push his own beliefs, but with the quick diagnosis he gave little remorse or empathetic advice moving forward. Fortunately, Jill was more open about receiving information, even from a stranger. I believe she had a different perspective on the situation because it was a personal issue for her growing up. I don’t think she saw any threat, like the neurologist might have. Although naturally skeptical, she respected, she listened, she learned, and eventually they made a huge breakthrough that could have saved her life. It is so important that physicians and those going into medicine have that same outlook. It took lying and manipulation for Furlong to gain a voice and that is sad to learn. Of course it is unrealistic for every doctor to take on every task that they are asked, but appropriate reactions and recourses or references could be put into place.
A major ethical error that the doctor made in the first article was pushing Furlong away and assuming she was like other parents who wouldn’t put time into investigating their child’s health condition. He didn’t look at her genetics and assumed that she knew her kids had a chance of developing the condition. In Jill Viles’ story, by looking looking at her personal signs and symptoms the doctor was able to trace it back to the disease. The disease affected her and Priscilla in different ways, but the doctor was able to realize that and come to the conclusion that they don’t have the same point mutation.
In the entirety of the article ‘Mother Courage’, there a few things that seem unethical that were either said or done by a doctor. The first, is that the orthopedic surgeon that Pat took her son Chris to be seen by, gave her a diagnosis without running any tests or getting a second opinion on. The second time that something unethical happened was when the neurologist at Cincinnati Children’s Hospital guilt tripped Pat for having a son with Duchenne and not knowing about. But then told her she should have magically have known that her unborn son had the same disease and aborted him! Finally, French Anderson, the guy on the cover of TIME magazine, told all of the parents at a fundraiser, that he could and would cure Duchenne within 18 months. He never had any proof to say that was even obtainable.
The difference in insight between the two articles, is that this is Jill’s life. She wasn’t some doctor who was telling someone what they didnt have or that they weren’t goin got get better. She was someone who noticed that she and her family were different. She did the research. She put the time in. Sometime we think that doctors don’t have anything on or that they want to jump on the first trial case that comes along. But the difference here, is that Jill was trying to figure out how to help other families as well as her own. Mean while the doctors that she was dealing with a first continued to tell her “we don’t know” but then would also tell her “no you don’t have that” without actually taking the time to figure it out themselves. That being said, I understand that it was a self-diagnosis and if doctors followed up every single self- diagnosis that came along, they’d be super busy. But Jill was different and researched. She had evidence.
In the first article I think that one of the major ethical issues was the way the doctor went about diagnosing the two boys. The doctor only looked at one of the kids and based off of one movement he diagnosed him with Duchenne. He also diagnosed the other kid without him being physically present. He also didn’t run any other tests and told the mother that there is no cure and to just take them home and love them. I think that he made a lot of assumptions that might be correct but made both the patient and the patient’s family lose hope as the father did.
It seems as if the doctor and most other medical background people at the time in the mother courage article didn’t want to get into researching/discovering something new (Duchenne in particular). This is what led Furlong to get really invested into finding out more about the disease even after the death of both of her children that started her interest for this disease. In contrast to the doctors and medical people in the mother courage article Jill knew that she had to go at this alone and wanted to figure out what is happening to her body and what has caused her to get to the point she is at. She conducted her own detailed research that accounted for a lot of things and was able to initiate discussion about the gene mutation that she claims she shares with the Olympic runner. This was the main difference that Jill wanted to figure it out and look at it from a lot of different angles and look at the minor details whereas the doctors in mother courage didn’t want to deal with it so they would just tell patients not to bother to do anything about it because there’s no cure.
The major ethical issue I noticed in the first story was how the doctor diagnosed the child after looking at him, without running any tests. Jill Viles learned more about her condition than any other researcher by doing extensive research.
The major ethical mistake that many doctors made throughout the first article was sheer negligence. Pat Furlongs husband began the negligence by just assuming that his children were okay, despite being a physician himself. Why not take the extra step and run some tests/evaluate your own children in depth to make sure there is nothing going on? This made no sense to me. The other doctors across town that Pat took her sons to were also negligent because they just kept telling Pat her sons her fine. If they were doing their job correctly, they would have noticed the irregularities that the kids were showing. At the very least, refer the kids to a specialist. Do not just say they’re fine. One could argue that the orthopedic surgeon who diagnosed Pat’s sons may have been a bit irresponsible in diagnosing the kids without testing, even though he was right to believe they had Duchenne. It is best to test this to confirm ones hypothesis. Furthermore, this same doctor who finally diagnosed the kids with Duchenne just took his hands off the wheel and was of no help after he diagnosed the kids. I understand that most cases of Duchenne if not all cases were not curable and the poor kids diagnosed with this were all but guaranteed to die. The orthopedic surgeon was just going based on the known medical facts/history. However he should have gave more effort to help, or to figure out a cure. He simply gave up after diagnosing the kids and that is disgraceful.
In the second article, I believe the difference in insight between Jill and the doctors that she first came into contact with( the neurologist in Iowa and John Hopkins group she worked with during her internship) came down to arrogance and negligence once again by the medical professionals. They did not think that someone outside of the medical field, especially a young adult, could correctly diagnose something so groundbreaking. They did not take her seriously, but they should have seen that she did her research and was very determined to learn about her condition. There was nothing to lose by taking some time to see if Jill was onto something, this is considered research. How many failed research experiments do medical professionals conduct? A bunch! They were just too arrogant and proud to think some college kid could know more than them about a disease that she had done much more research than them on. She deserved to be given a chance, and thankfully she was given a chance eventually by other medical professionals.
A major ethical error presented in the article “Mother Courage” occurred when the doctor accused Furlong of having family history of the disease. Also, he implied that she could have prevented the disease by having an abortion. This is a major ethical dilemma because physicians take oaths to dedicate themselves to their patients by being compassionate and respecting all human life. In the second article Jill Viles was able to use information about her health to learn more about her condition than doctors could. She was able to take her symptoms and piece together information from other researchers due to her having more insight with her issue than the doctors had. Resulting in her being able to find doctors that could finally diagnose her.
When it comes to looking at the ethical errors that were made in the Mother Courage article it is easy to see that the there were many major ones that were impacted in this case. The biggest one was the role where the doctor was pushing a diagnosis without having any true knowledge on where the problem is stemming from. There was not much further research being done and there was no one that wanted to put effort into it as well. To have such a serious statement be put on the parent with no research or context is extremely unethical in the sense that the medical professionals were unwilling to delve deeper into the medical condition for the well being of the patient.
The difference between the two situations that were explained in the articles is that Jill Viles had the authority to initiate and express the concerns for herself, and there were many things that she was able to tell the doctors of her concern.
In the first article, a doctor did not pay attention to the disease. He thought Furlong was worried too much about her sons. Moreover, when he knew the disease, he did not try his best to help her. It is different from Jill Viles. She did try to learn the disease by herself although she did not have any knowledge about medicine. She saved Priscilla’s life.
As a doctor, you must listen to the patient carefully, and do anything to help the patient.
In the first article, the most major ethical error made my a doctor was when a doctor told the boys’ mother that she was irresponsible for having children, it was her fault that they were sick, and even worse, that they would be better off never having lived. Not only was this ignoring the fact that she did not necessarily have a family history of the disease, but it also showed her that the doctor had already given up on her children and decided that they would live a unfulfilling life and ultimately die. Without even attempting to help them that doctor decided they were an impossible case. This did not prove to be true. The boys both lived for many years after their diagnosis. And, though they did ultimately die and it was difficult for them and their family, they accomplished things while they were alive too. One of the boys was even the top of his class while in school. That doctor ignored the possibility for any of that and tried to make Furlong feel guilty for something that was not at all her fault.
Jill’s situation was different because she was seeking out the knowledge for herself and by herself, rather than for a patient she was already afraid she would lose. Instead of ignoring the issues and deciding she was in an impossible situation like the doctor in the first article did, she researched and really helped herself. She refused to give up.
In the first article on “Mother Courage”, Furlong is handled quite abusively by a neurologist who seems to explicitly suggest that not only is there no hope of recovery for her children, but on top of this, she should feel responsible for her supposed ignorance of the genetic condition leading to DMD. In Jill Vires case, despite knowing the risks of her children inheriting EDMD beforehand, went forward with her decision to have kids. I attribute the difference in insights to the difference in perspectives between Jill and the neurologist.