Read the Mother Courage article and the DIY scientist articles. What major ethical error did a doctor make in the first article? What 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 in the first article basically told Furlong that her having two sons with Duchenne was all her fault and that she made wrong decisions with having the boys. He told her that she should have known and should have had an abortion with the second son. He told her that she might as well take the kids home and just spend time with them because they were going to do. The ethical error included giving all his personal options to the mom rather than letting her cope on her own with her own hopes and dreams. The difference in insight between this doctor and Jill Viles was Jill was experiencing the disease and had hopes and dreams of figuring out what was going on while the doctor did not have any personal experience. Another attribution could be that the doctor felt he already had a significant knowledge base while Jill was young and willing to grow her knowledge.
Would you say it was also ethically wrong for him to give such a strong opinion (for example that there must be a family history) when he didn’t bother to get his facts correct.
The doctor in the article was extremely insensitive, rude, and unprofessional when dealing with the diagnosis of Duchenne disease in Furlong’s boys. He accused Furlong of being irresponsible by “not knowing” her “history” of the disease, even though she had not in fact had a history in the disease but it had happened spontaneously. He even had the audacity to tell her she should have aborted her second son to prevent him from getting the disease.
Jill Viles had a different view on how to handle the prognosis of a disease. She wanted to understand her disease and learn more about it, and find others who could help her. She sought the help of a doctor to promote further research on the disease so that others could benefit and there would be a deeper understanding. She had hope for improving the prognosis for other patients and finding a deeper understanding of the disease. The doctor however was immediately negative toward the idea of the disease and was not open to discussing or looking further into it. He blamed Furlong and made her feel and for having the children instead of coming alongside her and trying to support her or fight for her case.
The major ethical issue that the doctor made was accusing someone of making a bad decision about having a second child. He questioned her decision-making, and basically ridiculed her for not having an abortion, even though she didn’t realize at the time that she carried the gene, because she later found out the faulty gene that she had was a spontaneous mutation. The doctor should not have scolded her for something that she didn’t know about at the time, and besides that, her youngest was already four years old. Talking about how she should’ve aborted her child of four years is crass and inappropriate, especially since she learned of both of her sons’ diagnoses of a terminal illness.
The difference in insight between the doctor and Jill Viles is that doctor has many patients with varying conditions, while Jill Viles was focused on one condition, which she had personally. The reason that Jill looked so much into the condition was because the condition was affecting her own body, as well as her family. Therefore, she was willing to accept different conclusions or implications, and didn’t really care about how absurd they may have seemed. The same couldn’t be said for the doctor. Since he didn’t have anyone close to him that was affected by Duchenne’s Muscular Dystrophy, he had no reason to sympathize with Pat Furlong, and therefore lacked any kind of insight trying to unearth what kind of phenomena was happening, and therefore he didn’t want to try to do any further research about the genetic condition.
The doctor should not have been so adamant about things that he really didn’t know.
The major ethical issue in the first article was when Furlong’s doctor scolded her for having another child. Her doctor told her she shouldn’t have had another baby because they were going to have the genetic mutation. Furlong didn’t even know she had the mutation to be able to pass it on to her children. People look to doctors for answers and comfort in times of need. In this case, her doctor put her down and basically told her it was her fault for having another child. I couldn’t imagine how she felt hearing those words from her doctor.
The different perspectives of Jill Viles and the doctor had to do with their passions and knowledge. Jill was determined to figure out her condition and ways to connect with other people who have similar abnormalities. The doctor was viewing her situation in a focused lens and on past experiences to diagnose her. He didn’t take the effort or time to dig deeper into possible gene abnormalities she could have. This didn’t surprise me though because in all reality, physicians have a long list of patients and when it comes down to it, time and money top all. This says a lot about medicine and how a patients perspective can make a difference.
I would say that the doctor in the first article made two ethical errors. First, I believe that he crossed a line by sharing his personal opinions on what the Furlong family should do by telling them to not try to fight it because it was a lost cause. However, the more egregious of the two errors was the fact that he blamed the Furlong mother for carrying out another pregnancy when, in his words, she should have known better. The doctor in this article believed that Furlong should have known that Duchenne muscular dystrophy ran in her family, but what he forgot to consider was the fact that it could have just been a spontaneous mutation that occurred just in this current Furlong generation. The fact that he was not educated enough on this possibility combined with the fact this misinformation led him to tell Mrs. Furlong that she should have had an abortion is a clear ethical error. This idea of being misinformed also highlight what I believe is the major difference between the doctor and Jill Viles. Jill did everything she could to become educated on Emery-Dreifuss. She poured over textbooks and journals for hours on end to get to the bottom of the condition and eventually diagnose herself and her family. Her commitment to being educated on the mechanisms of genetics and genetic mutations marks the stark contrast between her and the doctor in the first article, as the doctor was not knowledgable enough to know that a spontaneous genetic mutation could have been the cause of Duchenne’s in the Furlong family.
The mutation was first seen in Ms. Furlong’s children. Likely it occurred in someone close to Eileen, generation-wise such as her mother or father. This would explain why there is no family history and the fact that there are 2 children with the condition.
The major ethical error the doctor in the first article made was being very insensitive and not wanting to be compassionate towards the boys mother. The doctor stated that it was her fault that her boys have this disease because she was a carrier and knew her first child had the disease and there was a high chance her other child would also have the disease. She did not know this disease ran in her family but yet the doctor tried to talk down to the mother saying she should have known.
The difference in insight between the doctor and Jill Viles is that Jill personally had the disease and did all the research and tried to get the best insight on what was happening to her body. She tried everything and documented everything and even went to the mayo clinic every summer to try to get a different opinion or see if anything change. The doctor did not have any personal experience and did not really try to figure out what could be done but rather just blame the family. The doctor did not want to look at the options of what could be done.
Another error the Doctor made was assuming that Jill knew that she was a carrier for the condition. Recessive traits like this can happen sparingly throughout a families lineage.
From Whitney Card
In the first article, Pat Furlong was scolded by the doctor saying that she shouldn’t have had a second boy knowing there was a genetic mutation. The doctor told her she should have aborted her son. He should not have suggested those things to her especially since there is nothing she could have done about it then.
Jill took it upon herself to do more research about her condition and search for her true diagnosis. Jill wasn’t a doctor to know anything about what she had, but she did her research and eventually found her answers. This just makes me sad to think that there are people out there who are told that their diagnosis is unknown and their doctor won’t do any research to find out more. I think Jill had a lot of courage to go against her doctor and figure out the condition she had.
From Jessica Taylor
In the first article, the doctor made her believe that she should have known that the disease ran in her family and that she should not have had a second son. The doctor made her feel like she had a choice in letting her sons have this disease. However, the disease did not run in her family history, it was a spontaneous mutation. She had no way of knowing that this could happen. The doctor should not have blamed her for what happened and he should have done more research into the disease and her family history. This might have helped the diagnosis come across smoother.
I think Jill Villes was extremely motivated to research her family history and the potential disease, whereas the doctor from the first article was only going to make a diagnosis and that’s it. Jill willing to research her potential disease and reach out to many doctors and research studies to help determine if she truly did have the disease. She was interested in learning everything she could about the disease which ended up helping her in the long run. The doctor from the first article wasn’t willing to look into any extra information about the family history or the disease in general. The doctor was willing to tell the mother that she just had to deal with the fact that her sons would die before the age of 20. He was not willing to research any treatment options to try to help the boys live longer, healthier lives. Jill had the greater motivation to help her live healthy when compared to the doctor from the first article.
In the first article, the doctor was out of line for treating Furlong the way that he did. He basically told her that everything was her fault, which obviously is not the correct way to approach things of this matter; actually any manner. He was very rude and did not seem like he had any compassion. In reality, Furlong did not have any control over this mutation. If the doctor was more patient and understanding then he would have avoided this ethical error.
On the other hand, Jill was much more helpful. She spent her time researching things and trying to find out some answers that the first doctor clearly did not. What made Jill so successful is that she did not give up and turn to blaming Furlong. This is an interesting lesson about taking control of a certain illness by doing research. If Jill had not done this then Furlong would have had lots of unnecessary guilt.
He was also seriously wrong in thinking that Ms. Furlong should have known about the possibility that her second son could have the condition.
The ethical error the doctor made in the first article was that he accused Furlong of intentionally having a second son knowing that he could have Duchenne. The doctor was inappropriate for telling Furlong she should have aborted the child when she knew it was going to be a boy. The doctor was wrong for doing this because he doesn’t know if Furlong was aware of her carrying the disease.
The difference in insight between the doctor and Jill could be attributed to the fact that Jill was the person the was affected by the mutation. she would be more invested in finding out if there are ways to improve her quality of life. The doctor, on the other hand, was looking at what happened to others and blamed Furlong for something she had no control over.
The doctor in the first article lectured the mother about having children and not aborting her second child. This was an ethical error because the doctor should not be sharing opinions like that with the mother. Also, the doctor assumed that the mother had to have known that this type of disease runs in her family when 1/3 of this type of disease actually shows up by a random mutation. I think that the difference in insight between Jill and the doctor was that this disease has been affecting Jill her whole life and she realized that no doctor was going to help her and do the work for her, so she had a motivation to look for any indications about the disease that she could. This type of motivation gave her a different insight since it was so personal.
Yes, it is good to point out that it is not uncommon for someone to have this condition without anybody in a previous generation having it.
The major ethical error that the doctor made in the first article is lambasting Furlong of having a second child. He assumed that she knew she was a carrier for the condition and after her first son was born with the condition knowingly decided to have another child. From his point of view, she had knowingly passed on the condition and was responsible for her child’s suffering. From Furlong’s perspective, who did not have a family record of the condition, had a doctor lambaste her for passing the condition on to her son. Making her feel even worse for the situation that they are in.
It’s clear that Jill Viles intentions were set on seeking a cure for her children, while one of the doctors early on was set on placing blame on Jill’s genetic line. Some have commented that it is not appropriate for doctors to provide personal opinions with patients seeking help, but is this not what doctors have to do all the time? I agree that the doctor was completely unethical to tell Jill she should have aborted her child. I just wanted to touch on the fact that doctors provide opinions to patients all the time, that is one of the main parts of diagnostics.
Though I commend Jill for all she did, it was also very unethical of her to try and persuade her husband into providing their sons steroid treatment. I understand Jill was desperately seeking a cure for her children, but certain lines cannot be crossed ethically.
I think you are getting Jill and Pat mixed up.
The ethical error that the doctor made was telling Furlong that it was all her fault that her sons had the disease. She was a carrier and did not have any way of knowing that she was a carrier for the disease, nor did she know that both of her sons would be affected by the carrier gene. It was wrong of him to make her feel guilty for having two sons who inherited the gene when she was not aware that she could have even been passing the trait to them. The doctor was also wrong to make her feel like there was no hope for her sons treatment, and for the most part turned them away and told her to go home instead of offer new treatments that were going through trials. The difference with Jill is that she embraced the fact that she had the disease, and she did anything she could to learn about how she inherited the genes instead of blaming family members who may have passed it down to her. If all doctors responded like the Furlong’s doctor, there would be no hope for finding cures to disease that may be sex-linked because people would make the family members feel guilty for having children.
The big ethical issue here is when the doctor confronted that she made a horrible mistake by having kids and even worse about having a second child knowing something was wrong with the first. The lady did not know she had this disease in her genes and that she should of known that from family history and events. But little did the doctor know that 1/3 of this gene can show up randomly from a mutation so you dont even have to have it in your family it can just show up. So for the doctor to just assume that she was being a bad person and not looking at her history was wrong, the doctor should of done their research first. The difference with Jill is the she had been battling this for a long time now a nobody could help her so she took it into her own hands to learn and figure out something to help. She studied and did as much research as she could to try to help her self or at least others down the road with the same thing. The difference here is who is motivated and who had the disease.
The major ethical issue/mistake that stood out to me the most were the doctors responses to Furlong. Stating that because her children were to have the Duchenne disease, she should’ve made the choice of abortion with her second son. Not only is it rude but it’s disrespectful, alongside this stating that she should just take them home and wait for them to ‘pass on’ basically. Instead of the doctor stating his own personal opinion on the matter, he should’ve helped. Being a doctor you would think you would want what is best for your patients. Unfortunately in this circumstance that wasn’t the case which is upsetting.
In Jill’s case she had the Duchenne disease but instead of having it overcome her she put her mind to the research. In my opinion I think she looked at it as “if nobody will give me the answers I need, I’ll find them myself”. Providing all the information SHE found to someone who is a doctor shows something, Jill sparks that motivation. Aside from Jill, I wonder if Furlong were to do the same if she would’ve gotten a different reaction from the doctor….
Jill did not have Duchenne Muscular dystrophy, she had Emery-Dreifuss muscular dystrophy. Note that it would be highly unlikely for a female to have Duchenne Muscular Dystrophy. This is because it is X-linked recessive. This would require her father to have the disease and her mother would have to be at least heterozygous. Most males with this condition do not have children (A former student corrected me when I suggested that it was impossible, but many die in their early teen years or before making it rare). Note that for a male to have any sex linked condition, the father is irrelevant. The mother must be heterozygous. About 10% of males are colorblind. Perhaps .5% of females are and having this trait does not reduce the chance of having offspring.
In the first article, the doctor was completely rude and unprofessional with Pat Furlong, telling her that there is no hope to rescue her two boys with Duchenne. Telling her that she should’ve gotten the second child aborted once she knew that the first boy had the disease and it was a sex linked disorder. Not only that, but rather than helping Pat cope with the awful news she had received, the doctor put her down rather than helped her out with the griefing / anything to help her feel better in the moment. Yes the doctor was being truthful about the evident outcomes of her children but the way he approached the scenario is not at all what a doctor should do, especially to a hurting mother.
On the other hand, Jill Viles, like Pat Furlong, was affected by rare types of muscular dystrophy. Like Pat’s boys, Jill had Emery-Dreifuss. On the contrary to the doctor in the Furlong story, Jill knew her outcome but wanted to do the best possible within her own power to fight the disease and become more educated. She was working alongside with doctors, doing her own genetic research, looking at journals, studying genetics, and spending time at Mayo. Jill was dedicated because it was her life being affected by this disease compared to the doctor only being affected because one of his hundred patients was affected.
Pats boy’s had Duchenne Muscular dystrophy, not Emery-Dreifuss. (Duchenne is Sex linked, Emery-Dreifuss muscular dystrophy is not).
The doctor was very upfront with Furlongs’ kids’ diagnosis. Saying that there is no hope and no help for her two boys then accusing Furlong that it is her fault because the disease is on her chromosome and there must have been a family history of it. With the knowledge of knowing she is a carrier, she should have known not to have boys at all. He then said she should have aborted her second boy so the boy wouldn’t have this diagnosis. The major ethical error that I see is that the doctor is pushing his personal beliefs on the to Furlong. He was wrong to criticize her and her decisions when he should be fostering care, not chastising her. The difference between that doctor and Jill Viles has a lot to do with their background. Jill lived the disease she researched and is very passionate about finding out more of what she has. The doctor is drawing his conclusions from no personal experience so he uses what he thinks he would have done. The doctor probably felt like his knowledge and extensive schooling empowered him to say what he did. Jill did not have extensive schooling so everything she learned she learned from scratch from her raw passion for researching her disease. So her words are backed up by a lot of research, not just personal beliefs.
In the first article, the Neurologist at the Cincinnati Children’s Hospital made a few ethical errors. These include placing blame on the mother for having a second child, claiming that she could have prevented a second pregnancy or have had an abortion, under the assumption that the mother somehow knew that the Duchenne mutation ran in their family. He also did not provide support for his patients whatsoever, telling the mother that she should simply take her kids home and love them, that ultimately there is no hope and that her boys would just die(while her 4-year-old son was sitting on his mother’s lap, listening to what the doctor has to say)
1. He is a doctor, his job is to support his patients and provide resources and guidance to patients during difficult times like these, not play the blame game.
–Also, under no circumstance would that be appropriate for a doctor to speak about patients the way he did, but even further, he did that in the presence of one of the boys that were affected. -although he is young, this could be damaging long term
2. Being a doctor, I think he fell short in terms of being informed regarding the Duchenne mutation and in what forms it affects patients— 1/3 of Duchenne cases appear spontaneously.
This doctor’s insight into this patient’s case fell short, unfortunately.
Although, in the second article, Jill Viles provides different insights about the mutation and the circumstances of her situation and others. She begins by investigating and educating herself, then furthering her ability to diagnose others in her life around her, saving two other people’s lives in the process and providing groundbreaking information to the scientific community. Her response was proactive, in contrast to the negative and degrading perspective given in the first article by the neurologist. Jill Vile’s differing insights and response can be attributed to the fact that she has experienced the circumstances of one who has the disease, thus she has the capability to understand with compassion and a caring attitude towards others in the same boat.
“Before you judge someone, walk a mile in his shoes.”-Eminem
After reading the Mother courage, I realize that the name of the article is exactly what she had to be for her sons, in front of the doctor, her husband, and other parents. The ethical error that doctor made was to rude when giving her such a devastating news. Not only that, he went onto insulting her for having another child. Of course, she had no clue of this disease and it was her first time hearing about it. Also, she can have as many kids as she like, the doctor made another ethical error by telling her not to. She wanted to hear the possibilities of how they could be saved and what effort could be put in. She didn’t deserve that.
Of course in both of the articles, there are motivated women looking for answers for diseases. The difference would be Jill herself had the disease. It was herself that she was going to lose. Whereas Furlong had ongoing inspiration and even after her son died the research continued.
In the first article, I think the major ethical error that the doctor made was that he basically blamed Furlong for having her kids. Its not like she knew what was going on with her body. Another issue is that this doctor gave up on Chris and Patrick. Even thought at that moment in time there was no cure or treatment for Duchenne Muscular Dystrophy, as a Doctor you should try to do everything in your power to help your patients. The fact that their doctor literally said that there is no hope is frustrating. I honestly dont think that this doctor even considered what these parent were feeling. I understand that sometimes you just have to give the truth but that doesn’t mean that you are to be rude about it. Between this doctor and Jill Viles, she was more persistent. She stuck with her gut feeling and continued to figure out what was happening with her body. Jill doing all her research by herself is amazing and brave. With her, she didn’t let any criticism and negative remarks back her down. She accepted this disease and basically made the best outcome out of it.
The doctor had no place inputting his condemnation over her choice to bear children, especially when there was nothing for her to avoid in her mind. Not to mention the second boy was only a couple years younger; they hadn’t done anything remarkable to show concern. To top it off, he gave them no way forward but rather a very dead end. Jill Viles on the other hand persisted beyond reasonable lengths to make her progress. She did not stop at the first “no” or “I don’t know.” She practically worked on the black market with the blood sampling- whatever it took- to keep her research moving forward. She held integrity, a sense of familial responsibility, and a gut instinct that set her and the doctor of the first article apart.