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? You will get 2 points for answering this question. You will get 1 point if you comment on someone else’s answer (Give their name), but you must first make a comment before you can read and comment. Note that I must approve the first comment, so you won’t see your comments until after I approve them.
Write your answers as a reply in the comments section
In the first article, the neurologist that diagnosed Furlong’s boy with Duchenne scolded Furlong for having a second boy. The doctor states “You should have known about this,” she recalls him telling her. “This is a familial disease, it’s genetic, you have it in your family.” Furlong was the 1/3 exception that the mutation occurred spontaneously. The doctor insisted that she should have prevent the second pregnancy or should have aborted the child. This is an ethical error because the doctor is telling Furlong what she did was unethical by not having her child aborted. The doctor is evaluating Furlong’s decision, which is not appropriate.
The difference in insight between Jill Viles and the doctor that wrote the article is that Jill, never getting a medical degree, knew a lot about her genetic mutation by researching very intensively. She even diagnosed her dad with Emery-Dreifuss, which is another gene mutation. By this diagnosis, Jill got an internship at John Hopkins. Jill Viles knew what she was talking about. Jill diagnosed her self with having two genetic disorders, not only Emery-Dreifuss but also lipodystrophy. The odds of this is one and 15 million. She dropped this for a while, until her dad died and her condition getting worse. She now thought that she and a famous athlete just must have a mutant gene in common because of the exact same pattern of missing fat and started her detective work on the athlete Priscilla. Jill saw this doctor on the news and contacted him to get in touch with Priscilla. Jill and Priscilla met and got genetic tests that proved that both of them have the exact same subcategory of partial lipodystrophy, known as Dunnigan-type. And both of them had it on the same gene. Without Jill’s research and willingness, Priscilla would have never known about her condition or neither would Jill. After they found out about their condition, they went to get genetic treatment. Insight is the capacity to gain an accurate and deep intuitive understanding of a person or thing. Jill had insight in genetics, even though she didn’t go through medical training like the doctor who wrote the article. I believe that the difference is due to Jill actually having the genetic mutation and the doctor not. This encourage Jill to not quit on finding out what was wrong with her.
I agree with your responses to both questions. I find it interesting how you highlighted several important quotations and passages to support and explain your answers. This was incredibly thorough and actually helped clear up some misunderstanding I had after reading the articles.
Hi Lindsey, Your post was refreshing and helped me from confusing the two articles. I agree that the doctor was accusatory and did not use the correct methods in patient care. A physician should be supportive and use all their resources before making assumptions. I thought it was amazing how the mother in the first article was not going to give up until she found a way to provide more funding for her sons’ illness. Even after they died, she continued on with her work and helped create a large non profit to help aid in care for the illness.
Hi Lindsey,
I appreciate your definition of insight and use of that definition to explain the difference between Jill Viles and the doctor that Furlong met with. I absolutely agree with your analysis of this doctor’s lack of care.
Hello Lindsey. I 100% agree with your comment. Especially when the doctor commented on the mother having a second child. No one should ever be aloud to say that to someone else – let alone a doctor- who should be a lot more supporting than that.
In the article “Mother Courage,” the doctor made the ethical error of commenting on Furlong’s personal choice. In this article, the doctor claims that the mother should have known that Duchenne is a genetic condition that will be passed onto males if the disease runs in the family. However, in Furlong’s case the disease occurred sponatneously. The doctor still insisted she should have aborted her son rather than have him be born with the disease. The doctor’s comments regarding Furlong’ s choice to have her second son were inappropriate.
The main thing I would attribute to the difference in insight between the doctor and Jill Viles is their different experiences. Jill Viles not only lives with her genetic mutations, but is surrounded by family members who also have these mutations. Because this disease essentially takes over her whole life she developed a genuine interest in it. She took the time to educate herself on the disease because it effects her personally. The doctor, however, sees patients with the disease at work but has not personal connection with it. Because the mutation effects Jill on a personal level and not the doctor, they have different insights.
Hi Olivia.
I agree that the comments left by the first doctor were quite inappropriate and indeed unprofessional. Furlong had no ability to control something spontaneous, and so for the doctor to push the idea that she could have done something about it is an unethical thing indeed. Your answer to the second question parallels much to mine, but you included a mentioning of how Jill’s family – not just herself – suffered from several health issues and complications. Good catch!
I agree with both of your views on the article. I like how you mention the personal reasons why Jill is really involved and this is the reason why the doctor and jill have different insight. I like how you focus your answer on the big main point of the article. After reading your responses, I could tell you really understood the articles given.
Hi Olivia,
You made a good point in that Jill has the personal connection to the disease which is what motivated her to research so intensely. It is amazing what can be done when one is determined enough and is able to persevere through a multitude of setbacks.
The “Mother Courage” article described a mother, Pat Furlong, and her intense struggle to find help for her sons with Duchenne muscular dystrophy. She was referred to a neurologist at Cincinnati Children’s Hospital in order for her sons to undergo testing to confirm the diagnosis of Duchenne. However, while confronting Furlong about the seriousness of the condition, the neurologist was completely out of line in claiming that she knew the disease ran in her family, and that she should have aborted her second son. Furlong, in fact, was a case in which the mutation appeared spontaneously, a one in three chance. The neurologist not belittled and attacked her personal choices, but assumed that the disease was inherited.
He was too careless to consider that it may not have been, and was very unethical in his actions.
Jill Viles has a very different perspective when it comes to genetic conditions. Unlike the neurologist, she has been affected by a genetic condition, Emery-Dreifuss muscular dystrophy, her entire life, as had her father and the rest of her family. When a condition like this dictates your life, as it has with Jill, you want to know everything about it. Jill went through extensive research through the library, and later on the internet, reading about Emery-Dreifuss and lipodystrophy. Because Jill cared about her family, and would not give up on herself, she was able to save her father’s life, and even Priscilla’s. She had many different insights into her condition because it is a part of her life, while the doctor had never been affected by such a condition.
Amberly, I agree with what you said about Jill. Although it may not be fair or conventional, I do think that having and suffering from the condition that she is giving her input on gives her much more freedom. She almost has an unwritten or unofficial right to speak her mind on the issue more than a doctor or other bystander might.
Hi Olivia,
You did a really nice job explaining the differences in insights between Jill and the doctor. I agree that their different insights are attributed to their different experiences, as it is very different living with a condition than it is observing them in patients. Jill took some great leaps in an attempt to understand her genetic condition in depth, and even prevented a couple medical emergencies. Nice post!
The ethical error was one which examined a mother’s personal decisions. The doctor who had given the prognosis for Furlong’s sons scolded her for not aborting the second child or remaining abstinent after the first – and he did not take into account the spontaneous form of the affliction that had developed on the mother’s X chromosome.
The difference in insight between Jill and the doctor she wrote to is that Jill’s private research contrasts greatly with the public research done by larger groups, such as a hospital (namely the one where the doctor works). Jill has taught herself rather than through a higher education, it seems – and Jill’s personal experience with muscle atrophy likely plays a role in her higher insight as well.
Hi Dalton!
You make a good point, that a huge barrier may be the lack of same level of education between the doctor and Jill. In addition, the fact that Jill was essentially proving some doctors and research wrong, is not something many would like to accept, especially coming from someone who does not practice in research or medicine.
People have made many excellent points about the ethics in this case. I want to point out a scientific issue that can be a bit confusing, namely the nature of “Spontaneous Mutation”. Here is a possible scenario to explain what is going on in Ms. Furlong’s family:
A mutation occurred in the sperm of her father (It could have occurred in her mother, but data suggest that such mutations occur more often in men then in women). The father is unaffected, but the mutation gets passed on to Eileen. Eileen has the non-disease allele from her mother, so she is not affected either. Eileen is heterozygous so she can pass the allele onto her sons and both of her sons.
This scenario explains a couple of findings. First, it explains why there was no previous family history: The mutation occurred in her father, and Eileen is the first carrier. (Her daughters could be carriers and they may want to be tested). Note that the original mutation could have occurred in her Mother’s mother father as well, but the mutation must have happened in someone close to Eileen in generations for there to be no previous family history.
Secondly, if the mutation had occurred in her father rather than in her, there is a greater likelihood that she would have more than child with the condition than if the mutation had happened in her (The reason for this involves some details of female meiosis that we will learn in the next unit).
Now there is another medical ethics question. Should the neurologist have known what I have told you? Or at least known that he didn’t know it? (If you have already answered, let someone who has not posted yet give it a try).
I would argue that the neurologist should have known that this scenario was possible. Or, at the very least, should have put the Furlong’s in contact with a genetic counselor or geneticist to further investigate what was happening. Across the board, ethical guidelines include a portion which explicitly states that it is part of a doctor’s responsibility to (a) recognize when to collaborate with other physicians/or refer their patients to a more specialized doctor, and (b) to provide the best care possible for their patients by careful investigation. In this case, I would argue that the neurologist in question failed both parts of this guideline, as he not only offered an alternative scenario, like the one Dr. Wohwill mentioned above, he also did not refer the Furlongs onto a physician who was more specialized in genetics. Therefore, no matter what, the Furlongs should have heard the possibility of this scenario, either from the neurologist or a physician found at the neurologist’s referral. Thus, it is logical to conclude that the neurologist violated ethical guidelines by not making this information available to the Furlongs.
You make a very good point in that the doctor should have suggested someone more knowledgeable such as a genetic counselor. He could also have consulted someone himself.
Hello Elizabeth!
Your response is well articulated and contains a number of notable points. I wonder if this doctor took into consideration his reaction to her situation after he realized the outstanding impact she has made on the research of Duchenne Muscular Dystrophy, or after his neck was yanked in fury with his actions.
The doctor most definitely could have taken more steps to at least provide hope or an increase of knowledge to the family. He may not have been knowledgable enough to have the information off the top of his head but he could have made an effort to comment suggesting a series of events that is a “what if” or a suggestion of death.
***avoid comments suggesting a series of events that is a “what if ” or suggestion of death
Your question prompts a large one for myself. Why wasn’t the neurologist interested (at least from what we saw in the article) of tracking down where this may have come from and testing more family members to try and limit transmission? With Jill’s french study they had asked her to reach out to half siblings to try and see how the disease may be transmitted and affecting other family members. The doctor’s entire comment aside, Furlong had two daughters who should have the information and risks evaluated prior to starting to have a family.
I absolutely agree that he should have referred them to someone who could help establish the risks for future generations.
You make a good point about the daughters. They may or may not be carriers. DNA tests can determine whether they are carriers or not and they can use this information in family planning. One option that some people take is to do in vitro fertilization and pick only those embryos which do not have the disease allele.
The first article centered around one mother, Pat Furlong, and her fight against Duchenne muscular dystrophy (a rapid and fatal disease which mostly targets males as the mutation is on the x gene.) Pat’s two sons were both diagnosed with Duchenne at a young age, which although Pat was worried that there was a developmental issue with her sons, Duchenne was not expected as she had no family history of it. In her case, Pat was among the one-third of Duchenne cases, which spring up spontaneously; without any family genetic history. However, despite Pat’s explaining to the neurologist when he diagnosed her two sons with Duchenne, the doctor made an ethical blunder. He faulted Pat for not knowing she could give this to her sons, and for having a second son. He explained to her that, “You[Pat] could have prevented the second pregnancy, or you could have aborted the second pregnancy.’ “; all of this was said while Pat was holding her second son, then four years old, on her lap. Pat, outraged by the doctor, grabbed him by the tie and forcefully told him that if anyone should have been aborted, it should have been him. In this case, the neurologist grossly overstepped his boundaries and spoke unethically, as such.
Similarly, we see in the Jill Viles, doctors making mistakes. In her case, not listening. With Jill, the young girl was dedicated and studious. Although it sounded improbable, Jill realized that she and several of her family members, had the disease Emery-Dreifuss. This form of muscle dystrophy, it is very rare, and thus, doctors were unwilling to believe a nineteen year-old girl. In this scenario, we also find a neurologist as playing the bad guy, when she turned Jill away without even agreeing to look at all the research Jill had found. Jill’s insight, even if not coming from a background of clinical training, ended up being more accurate than all the doctor’s. The reason for this can probably be drawn from Jill’s motivation, her ability to see minute details which others could miss (like muscle divots), and her passion. We see this pattern repeat itself when Jill realizes that she, and the famous athlete Priscilla Lopes-Schliep shared commonality through the disease lipodystrophy— but with different mutant versions. For Jill, she had a loss of muscle mass, although she exhibited the same toned muscles which adorn Priscilla. But, in Priscilla’s case, she had an excess of muscular tissue which made her look as if she was on steroids. When you look at pictures of the two women next to each other, you would be hard-pressed to believe that they have the same disease. Thus, it is understandable that doctors would again scoff at Jill for not only thinking she had another rare disease, but that she shared it with someone who looked so different. Yet, Jill turned out to be right again. How did she know? Jill claims it was in the shoulders. She was looking at a picture of Priscilla, and realized that the woman had the same shoulder as herself. The definition, curvature, shape— it was like looking at her own. Little details like this are nearly impossible for a doctor to pick-up, but, Jill was able to have insight like this by being intuitive, curious, and hyper-vigilant. This, paired with strong motivation, gave Jill insight which put years of medical training to shame.
Pat Furlong’s journey of determination to research and fight against Duchenne first started in the realization that her two sons had this disease, resulting from a genetic mutation. The diagnosis of her sons lead to a wildly unethical conversation with a neurologist at Cincinnati Children’s Hospital. During this conversation, the neurologist expressed both his insensitivity and lack of knowledge about Duchenne and its genetic mutation pattern. He reprimanded Furlong, accusing her of having her children while knowing that the genetic mutation ran in the family. Even though she explained and insisted that they had no family history of the mutation, he persisted. This accusation was not only unethical, but proved that the neurologist did not embody thorough knowledge about spontaneous mutations. I believe that someone in his position should have absolutely known about the possibility of spontaneous mutation and his ignorance was not only unethical, but displays his lack of prudence in research.
The dramatic difference between this neurologist and Jill Viles is a desire for incessant research due to the doctor’s lack of ambition, probably because he lacked personal connection to the research. This doctor lacked the insight that he truly should have had because he was not interested enough in the disease and mutation to recognize the opportunity to learn in the case of Furlong and her family. Rather, he saw the diagnosis as a professional obligation and Furlong as an irresponsible and uneducated parent. However, in someone like Jill Viles, who was spurred towards research due to her exceptional and rare case of genetic mutation, she had the drive and insight to search for the abnormal and understand the exceptions.
Desirea Kennedy, I thought your post was both insightful and thought provoking. I completely agree that the doctor in the first article should have known about spontaneous mutations and that his ignorance not only showed the gaps in his medical knowledge, but also his disregard to the ethics of the medical profession.
You also commented that this doctor lacked insight because “he was not interested enough in the disease” to take the opportunity to learn from this case. I wanted to comment on this because as disappointing as this is, this comment is the truth. I think often clinicians lose sight of what a privilege it is that they get to care for a patient and it becomes mundane. Just another work day to get through, which is a problem that should be addressed with clinicians, especially burnt out clinicians. Thanks for the insightful comment!
Hi Desirea!
I agree with your statement that the neurologist should have known about the possibility of a spontaneous mutation especially because this is what happens 1/3 of the time with Duchenne. The neurologist is making such a bold and unethical statement to Pat Furlong that you know he didn’t do his research before speaking. If he would have known the odds of this happening and asked about her family history he could have understood the whole picture. I also liked how you explained their insight differences as lacking a personal connection/ambition. The doctor knew there was nothing he could do for these boys and blamed the parent and didn’t take the time to learn. Whereas Jill obviously had the connection and ambition to learn about the disease in herself and her family.
In the first article, the doctor made the mistake of shaming Mother, Furlong. The doctor shamed her for having children, especially having a second one. Telling her she should have aborted. In my opinion, he blamed her for all the suffering – because it was her genetic disease. However she didn’t know about it until much later. It was a very rare disease that was actually a mutation.
With Jill I think the difference is that she was motivated in a different way than the doctor was. The doctor looks at brains all day, while Jill was able to relate more with Furlong because she was also effected by a disease which also causes muscular dystrophy. Though Jill’s level of education was different than the doctors, she was more “up to date” (for lack of a better saying) on muscle dystrophy than the doctor.
Hi Ashleigh Rasmussen,
I agree with the aspect of how the doctor shamed Pat into her decisions regarding having a child. It’s not the doctors place or the correct time to shame the mother in this way. He could have suggested genetic counseling for the mother to figure out the steps she could take next.
Regarding Jill, I believe that she was more “up to date” due to the fact that she poured herself over medical research books trying to find an answer. She stopped at nothing to find out what was going on in her body as well as her father’s body. In doing so, she saved her father’s life for awhile longer as well as the life of an Olympian.
Great post!
In the article, “Mother Courage”, Furlong met with a doctor that made the unethical comment about Furlong’s decision to have a second child after the first one was born with Duchenne. I found it interesting that although Furlong’s husband was a physician, even the husband did not notice right away that his sons had Duchenne. So even a physician in the family could not make this diagnosis. Nevertheless, this doctor told Furlong that she should have known that that Duchenne is a type of genetic condition that is passed down to males when it is in the family history. Furlong tried to explain that she didn’t have it in the family, but the doctor refused to listen and went on to tell Furlong that she should have aborted the second pregnancy. The first unethical mistake this doctor made was not listening to his patient’s remarks. He could have learned from Furlong that Duchenne did not run in the family, but chose to ignore her and come up with his own conclusions about the family. The second unethical mistake he made was not being a knowledgeable medical professional and still providing care for Furlong. Dr. Wohwill posed the question “Should the neurologist have known what I have told you?” about spontaneous mutations and my answer is absolutely yes. Even if he had no idea about spontaneous mutations, after listening to Furlong, he should have sent her to a medical professional who did. By not doing this, he provided unethical remarks and medical care to Furlong and her sons.
I think the difference in insight between this doctor and Jill Viles occurred because of difference in humility in their characters. The doctor was not open at all to what Furlong had to say about her family history and made up his own conclusions. I think this had to do with arrogance that he is always right and the patients do not know what they are talking about, which ended up doing a great disservice to Furlong and many of his other patients, I am sure. On the other hand, Jill sought to know everything she could about her medical condition and was very open to any condition that could help describe her and her family. She was humble enough to realize she didn’t know much, but she wanted to learn. I think this difference in thinking should be more prevalent in today’s medical professionals.
Ivanna
You brought up a good point that here the father/husband was a physcian and didn’t know his sons had Duchenne. Here he had observed his first son Chris, never seen the signs of Duchenne and without a family history of it why would they prevent or abort the pregnancy with the second son.
Like the way you say “difference in humility in their characters” concerning the doctor and Jill. Doctor with his higher education comes off all high and mighty, while Jill was humble and eager to learn.
The first doctor, in “Mother’s Courage”, made an ethical error medically when accusing Furlong of knowing about her disease and shaming her for having children. Furlong was one of the rare cases where she did not know about her gene mutation, due to the fact it was not spontaneous. Instead of asking questions about her family’s genetic background and being an advocate for the patient, the doctor was completely misguided and accusatory.
The doctor in Mother’s Courage and Jill Viles both were insightful in regards to the science and background in genetics, but the difference in the two was drive. The neurologist did not care for the patient, nor did he seem to have an interest in Furlong’s search for answers and a cure. Jill, however, continued to learn and sought out research and genetic testing in order to find answers for herself and her family. The doctor did not share the same drive and determination as Jill brought to the table and ultimately this is the difference between the two. While the doctor was completely capable, he was not and advocate for the patient (one of the most important aspects of caring for a patient) and Jill Viles was the number one advocate for herself, her family, and Priscilla. Genetic enigmas are time consuming, expensive, and not easy to solve, however, someone must be an advocate, or diseases would never be cured.
Reading the first article when Mrs. Furlong is shamed for having another son truly hurt my heart. I can’t imagine how defeated she must have felt, and it would almost seem like that would be the point where someone would give up. Maybe that comment is what helped fuel her determination for the Duchenne disease to finally get the attention in deserved.
What major ethical error did a doctor make in the first article?
In the first article “Mother Courage” the doctor told the mother Pat Furlong that she should have never had a second child. That in fact she should have aborted the baby as soon as she knew it was a boy. The doctor first off as no right to tell a mother this ever, they can recommend this if they actually knew something was wrong with the baby. But no doctor should ever scold a mother. On top of the fact that this was a spontaneous event, and they had no idea. Every other doctor kept telling her nothing was wrong with her son.
What do you attribute the difference in insight between this doctor and Jill Viles?
Jill Viles is an amazing woman who never gave up trying to find out what was wrong. She spent hours on top of hours researching and reading. She reached out to so many different doctors and would not ever take no as an answer. The difference between her and the doctor from the first story was the determination to never stop. To never leave a stone uncovered and to keep asking questions. This doctor gives a diagnosis and nothing else, he showed no compassion or determination to help these boys and their mother.
Christina D. I agree with you. It’s hard to believe that a doctor would actually tell a parent that they should have aborted their child, especially after finding out that two of their children are affected by a disease that is highly likely to end their lives very early. Since the doctor knew just from looking at the children that they had Duchenne you would think that he would have had more knowledge about how the disease can be inherited.
The major medical error that the doctor made in the first article was that he shamed furlong for having kids and knowing that she could have passed along her disease to them. Furlong was a rare case and did not know about her condition because her gene mutation was not spontaneous. The physician unfortunately accused Furlong of basically abusing her children and pointed fingers at her. This should not have happened and the physician should have asked about her full medical history as well as her families medical history. A physician needs to be supportive not accusatory.
The difference in insight comparing the physician in the first article to Jill Viles is that Jill researched and diagnosed herself with not one but two genetic mutations. She diagnosed herself with Emery-dreifus syndrome due to her families medical history. She saved her father’s life because of this. She was hired as an intern to look through scientific journals. She became overwhelmed from the information and eventually diagnosed herself with lipodystrophy. She again researched the condition intensely and discovered that a famous athlete named Priscilla had the same condition as her but instead of weakened muscles, she had strong muscles. They eventually connected and found out that Priscilla was on the verge of a health epidemic as well. Again, Jill saved another person’s life. The doctor from the first article did not care to research the conditions and instead of being proactive, they were accusatory. Jill fought for her condition and did not give up. She researched everything she could imagine and is a proactive person.
Hello Ryan,
I agree with you on the physician. The physician had no right nor place to say the things he did nor accuse her of something that he should have taken into consideration. Why do you think that doctor was so cold to her? I think that Jill was a fighter just like you stated. She never gave up and look how far she has come! Overall learning is so important when it comes to helping improve the lives of others, it is not something you can merely just state because you learned it back in med school, nor is it an opinion. They are paid the good bucks to have factual evidence for every patient.
In the Mother Courage article, the doctor made the mistake of assuming that Duchenne was a disease that is always passed down genetically when in this case it was spontaneous. Going based off of his assumption, he told the mother that she should not have had a second child, or she should have had an abortion. It was unethical and unprofessional for a doctor to shame the mother for having children with an unfortunate disease in which she had no way of preventing. Additionally, he disregarded the children’s value as human beings by saying that they should not have been born because of their disease.
The difference between Jill Viles and the doctor is her openmindedness and motivation to learn more, and his ignorance. Jill made amazing discoveries just by working hard and using the resources that were available to her. The doctor had years of education and many more resources and opportunities but he made assumptions based on what he thought he knew. Jill had to work hard to make herself sound credible and to get through to the people who assumed she was crazy.
Hi Ivanna,
I absolutely agree, just because a physician is a physician does not mean they know everything. I feel that Furlong’s doctor was very wrong by not listening and by not referring them to someone that would really help them.
I also agree with you about Jill Viles, she was not giving up and I think that more people need to do the same thing. No one knows what your body is doing better than you. So learning and asking everything you can is the only way to find the answers.
In “Mother Courage” the neurologist at Cincinnati Children hospital didn’t use ethics, or common courtsey when talking to Pat. To be told that your sons have Duchenne. Telling her “There is no hope and no help, just take them home and love them. They’re going to die.” Then chastised her for her personal choices. That she knew that it ran in her family. And when she said it didn’t run in her family he should had referred her to a genetic counselor to explore the why and how it happened. What descent human being tells a parent that their children are going to die and then tells her that she caused it, that she should have prevented pregnancy, and when that didn’t work abort it if it was a son, since her daughters were fine.
The difference between the doctor and Jill Viles is drive to figure out why she was the way she was. Why her, made her research it, to diagnose one self, all the while trying to get a doctor to take her seriously. To writing to the scientists in Italy for help confirm what she believed, supplying them blood from herself and family members when they said they would help. To continue her own research into the science of it, to being able to see that her father had it and got him help for the heart problems. Then to notice Priscilla had it only in a different way, to keep going forward with trying to contact her, to having genetic tests, why were they different? It was the why me that kept her exploring and moving forward in her finding answers. Who isn’t curious about genetics?
The major ethical error that the doctor made in the first article was telling Pat Furlong that she should have had an abortion with her second boy. This doctor clearly hadn’t done his research on this case before he spoke. If he would have known that this mutation occurs in 1/3 cases and that the boys were the first in the family to have the disease, I don’t think he would have made such a bold statement. He told Mrs. Furlong that she should have aborted the second boy, yet Mrs. Furlong didn’t know that her first boy had a major genetic disorder when she was conceiving her second son, she found out their diagnosis at the same time. She knew her first son’s development was lagging a little but her girls were developmentally normal. It was when one of the boys got injured that they started looking at the possibility of a Duchenne diagnosis for both of the boys.
I think the difference in insight between the two was due to personal experience and effort. The doctor clearly didn’t have much personal or clinical experience with Duchenne, he didn’t take the effort and time to educate himself on the disorder in Mrs. Furlong’s case. He knew it was a fatal disorder and there was nothing he could do from there which is understandable but it’s still important to have empathy and knowledge. Jill on the other hand had a personal connection with the disease that she was researching for years. If I were a doctor I would be a little weary about a patient coming in with a rare self-diagnosis, but I would still listen and look into the research that the patient has.
Great comment Jenna. I agree with you about the physician’s lack of empathy in Mrs. Furlong’s story. He let his opinion cloud his medical judgment and created a negative situation for her and her family. He should have been caring to a mother who has two children with severe disabilities.
Could you imagine how challenging it was for Jill who was a teenager when she self diagnosed herself! What courage and perseverance it must have taken for her to read so many medical journals trying to find the cause of her disorder.
In the first article, Mother Courage, the doctor makes a major ethical issue. The mother, Furlong, has two boys who suffer from Duchenne a genetic disease. When she took them to see a neurologist at Cincinnati hospital she received news that was not appropriate to get from a doctor. He blamed her for having a second child. He said she should have known that this is a genetic disease and should not have risked it. He said his own views saying she should have aborted the second child who happened to be sitting on her lap at the time.
One of the major differences between the doctor in the first article and Jill in the second is that Jill actually suffers from a muscular disease. Even though she is not a doctor or has a medical degree she knows a lot about her condition from lots of research. She found certain information about her condition that many people didn’t even know. The doctor in the first one said there was nothing he could do and Furlong children would end up dying giving no hope or extra research to help the children that suffer the same disease.
Hi, Kiley Stuller.
It was definitely wrong for the provider to assume that the patient had knowledge about this genetic disorder. Healthcare providers should know that teaching is the majority of their job because healthcare literacy is not common in society. Also, empathy is definitely gained quicker through experience than observation. Great ideas!
I think after reading the “Mothers Courage” article the doctor made the mistake of assuming that Furlong had a family history of Duchenne, and then telling her there was nothing she could do because her sons are going to die. I think as a health care professional the neurologist should be honest with patients but also understand how hard it must be for family members to hear a doctor tell them that there is no hope for their loved one. I think the neurologist making Furlong feel as though she knew she carried the gene for the disease and ignored it leading to her sons inheriting a disease that intimately lead to their deaths was a major ethical error. I think it would be hard enough to realize your children have the disease you thought they had but then to be told that you should have aborted your children from a doctor is horrible. I think the difference in insight between the neurologist and Jill Viles was that Viles actually did her research and took the time to understand her disease. I’m assuming because the doctor knew there were no known cures or treatments for Duchenne he had no hope for Furlongs children, also the fact that he was not personally affected by the disease that probably played a role in why he reacted the way he did towards Furlong. Jill Viles on the other hand was affected by a disease, had family members also affected, and was determined to figure out what exactly was affecting her and her family.
The major ethical error made in the article titled “Mother Courage” is how the doctor did told the mother that she should have aborted her second son or not conceived him entirely knowing that she carried a genetic mutation. At this point, she did not know that her first son had the genetic disorder. The doctor did not care what her view was on things and simply wanted to force his opinion on her. This is unethical because the doctor should be listening to his patients and their stories and take each one by a case by case basis. It was up to the mother, Pat, on how many children she had, whether she knows she has a genetic disease or not and if she has a child with the disease already.
In the DIY scientist article, Jill Viles researched and took insight into her case. The difference between Jill and the doctor in the “mother courage” article, are that Jill researched and actively participated in finding out more about the genetic disease. The doctor for Pat Furlong wasn’t very interested in gaining more interest and finding out more about the case for Christopher and Patrick. The doctor could’ve peaked interest in other cases as well, not just the specific two cases regarding the brothers.
Jill showed active interest in her case because she was living with the debilitating symptoms of the disease she had. The doctor, however, was not living with the disease and he was not taking care of his patients with a “do no harm” mentality that health care providers should use when taking care of patients.
Hi Elizabeth Braun,
I like how you mentioned “do no harm.” This is the golden rule in healthcare, but, in some cases, providers can take it too literally and lose their passion for caring. It was wrong for the first provider to assume the patient had any knowledge about the disorder. Providers have to get to know their patients, and this gets lost in a world of failing communication skills.
Hi Elizabeth, I love how you went into depth in your first answer stating how important it is to listen to your patients’ concerns and not forcing your opinions on them. The doctor’s belief was not the same as the patient and you were totally right when you said the mother didn’t even know she carried the gene. Placing the blame on the mother who had no idea and may not believe in abortion is totally unacceptable to do as a doctor.
In the first article ” Mother Courage” the first ethical mistake made by the neurologist was the answer of ” There is no hope and no help just take them home and love them”. As a mother I am assuming that hearing those words punches you right in the gut, what you are hearing is ‘ You have failed as a mother and as a parent’. The second dilemma was when the neurologist shared an opinion on how she could have prevented the second pregnancy in other terms abortion. Abortion is a very sensitive subject and is not something that someone especially a doctor should throw out there after the child is already born. Then proceeding to accuse her of knowing about this condition and still chooses to have kids. This was not only hurtful but very wrong, in assuming that the boys obtained this disease by genetic inheritance rather than considering that she or anyone could have been the 1/3 of cases in which the mutation appears spontaneously.
The obvious differences from Jill and the doctors are how the doctors were quick to give up when they discovered that they had never seen nor dealt with something like this. But Jill was not only bright but she was also passionate about this. Jills passion allowed her mind to be open to new ideas, research, and studies. With an open mind which was something that the doctors where lacking she was able to learn more and in turn brought her the ability to make an accurate diagnosis of her father’s condition of Emery-Dreifuss.Something the doctors could not do. This story goes to show that even tho you may be where you want to be in your life because you learned what you had to learn to get there, doesn’t mean that you ever are done learning.
The ethical error that was made in the first article was how the doctor presented the information to Furlong. There is a huge difference between, “this was a risk that we can calculate prio to pregnancy” had she had any known history of the disorder and if it had not been a mutation. But the Doctor went so far as to say, this child should not have been born to tell a woman that she SHOULD HAVE an abortion is throwing all ethics away. He could give information had he known prior to, or information that could ease her in the right direction. He is not to push such a personal issue onto any woman. Leave it as an option for future, perhaps, but he is just adding salt to an already very sore wound.
What do you attribute the difference in insight between this doctor and Jill Viles?
The doctor in mother courage was not helpful, they provided no more than a diagnosis and scolding. While both women were brushed aside numerous times for the lack of knowledge about the rare disease that had affected their life, Jill was approached or declined more calmly. Perhaps solely on Furlong’s medical background, had they expected more from her? Or to brush aside because of it’s rarity and severity? Eventually Jill was able to produce hypotheses to help aid her search for answers and after finding the right group, was supported in getting an answer for what was ailing herself and family.
Hi Raven,
I really like how you said the first doctor “added salt to an already very sore wound”. The mother was clearly already hurting after receiving a devastating diagnosis for her children and the doctor was way out of line. It’s no wonder that she reacted as angrily as she did. Your perspective that Jill might have been brushed aside and declined more calmly compared to Furlong because of her medical background causing others to expect more of her is very interesting. I hadn’t thought of that at all. That also led me to think that maybe Jill had been declined more gently because she had a diagnosis of a rare and debilitating genetic disorder so they pitied her and didn’t want to be harsh when brushing aside her opinions.
In the “Mother Courage” article, doctors completely overlooked obvious assessment findings. The fact that the infant was “floppy” should have been an immediate sign to take action, provide referrals, and do as much as they can, in their scope of practice, to improve this boy’s daily life. As a nursing student, I would never feel comfortable leaving a “floppy” infant without providing some sort of intervention. This healthcare team completely ignored physical symptoms, and it is unprofessional and wrong. Not only this, but a provider was described as scolding a mother for having a second boy after having one with Duchenne: he told her that she should have aborted her second son. This is, again, completely unprofessional and unethical. This provider’s job is to provide a diagnosis and plan of care; he does not have the right to inject his personal opinion and bias into the situation.
The provider who told Pat Furlong that she should have aborted her child had much less insight than Jill Viles. Jill was adamant about researching about, and participating in research about, this genetic disorder. The providers described in the “Mother Courage” article did not go further into depth about the Furlong boys’ cases. Many providers were described as not helpful early in the boys’ lives; they ignored physical symptoms and subjective patient data. Jill made an effort into understanding the disease because she had empathy. Because the provider in “Mother Courage” did not know what to do, he stopped in his tracks. Healthcare workers are lifelong learners, and it was wrong for this provider to do.
In the “Mother Courage” article, mother of two, Pat Furlong had just discovered that both of her sons were diagnosed with Duchenne muscular dystrophy, which is usually characterized by progressive loss of muscle strength and an early death that is typically before the age of 20. The ethical error that the doctor made was when he said, “You should have known about this.” “This is a familial disease, it’s genetic, you have it in your family.”. The issue with this statement is that he blamed the patient for things that she didn’t know. He followed those two statements up with: “You could have prevented
the second pregnancy, or you could have aborted the second pregnancy.”. He said the words “could have” a lot in those statements, which is again, him blaming her for something she didn’t know. The two sons were two years apart in age, there probably wasn’t anything too noticeable or caused concern, and the things that did concern Pat, she took to doctors that all gave her the same response of there being nothing wrong with them.
I believe the difference in insight between Jill and the doctor writing the article was due to the relationship that each of them had to the disorder. Jill and her family figured something was wrong with her due to her physical state. And I know that if I had a diagnosis similar to the one that Jill had received (an effect without a cause), that I would want to look into what could be causing it. So she researched what the issue could be, and all of the research was most likely the cause as to how she could have nearly as much/more knowledge about the topic of her disorder and genetics in general. While the doctor just went into the field and probably didn’t have as much of a connection to the topic as Jill did.
Hi Michelle, I agree that the doctor didn’t use common courtesy when talking to Pat. If I had someone telling me news that grim, I would hope that he would try to be optimistic about the future.
I also agree with what you said about Jill being very driven to complete a self diagnosis. I never thought about how crazy it might have seemed to a doctor if someone with a physical disorder comparing themselves to a Olympic athlete.
In this first article, the “Mothers Courage” one of the ethical errors made was the Furlong’s mother being criticized for having another son. Being a medical professional this has to go against everything taught on how to handle these situations even if it was out of ignorance that she still had children. I’m trying to imagine how helpless she must have felt being told this by a doctor who should be helping. All while watching the health of what should be your two healthy sons diminishing right in front of you. It turned out that she was part of the 1/3 of cases in which the mutation occurs spontaneously.
The difference in insight between Jill and the doctor is that Jill has to personally live with the challenges she is spending her life researching. The doctor spends their career learning about it, but without the setbacks that Jill has to face everyday. Jill is also able to get down to the bottom of what is affecting her life as well as the people around her. The doctor in the first article went to school to be able to do this. It’s from Jill’s clear dedication and determination that she is able to make such a positive impact in her situation.
In the first article, the neurologist told Pat Furlong that her two sons had Duchenne’s muscular dystrophy. It’s a genetic condition, but one-third of cases occur spontaneously. The doctor told Furlong that she should have known about this from family history, and she should have prevented the second pregnancy by having an abortion instead of passing along the disease. However, Furlong’s case was one where the mutation occurred spontaneously. What the doctor said was incredibly rude and condescending. Even if Furlong had known about the condition, it was extremely unethical and unprofessional for the doctor to offer his opinion, criticize, and accuse the mother’s personal choice.
The difference in insight between the neurologist and Jill Viles I believe is due to personal experience. Doctors can have all the knowledge in the world on a medical condition, but unless they have the condition themselves, it is impossible for them to be completely empathetic and understanding of what their patients are experiencing. Jill Viles researched extensively and diagnosed herself and her family with two extremely rare genetic conditions. Many doctors shut her down and didn’t believe her, but she kept researching and fighting to advocate for not only herself, but her father as well. She ended up saving her father’s life by doing so which I think is remarkable. I’m curious how the situation would have been different if she didn’t share the genetic conditions with her family. I think part of the reason she was so passionate about advocating for them was because she was empathetic and shared their experiences.
I think you’re on to something! I agree that her personal connection with the various genetic conditions kept her going when things were looking like dead ends. Had she not been so connected and passionate, she easily could have called it quits and gave up!
In the Mothers Courage article the error that the physician made was allowing his personal opinion to interfere with patient care. When caring for patients it is important to be professional in all circumstances, realizing that you will be faced daily with many obstacles and challenges. He was wrong to blame the mother for having children with a disability.
In the second article, the physician created a positive environment for both patients to learn and grow despite the challenges of their disabilities.
It was interesting to read how dedicated the women in both articles are to find the root cause of their family’s genetic disorder and help others in the same circumstance.
I think that the Doctor’s ethical error was that he criticized and scolded Furlong for not aborting her second child. He basically said that she should have known not to have another child based on her knowledge of the first child. The thing I found ironic about this is that he was also somewhat dismissive of her position in the matter. He essentially belittled her concerns/ “diagnoses” and at the same time criticized her for not taking them more seriously. Long story short, he imposed his opinion on her regarding a personal, and very sensitive, matter.
I see some parallel between the doctor’s actions and Jill’s actions but there is definitely a difference. I think it is fair to say that they both went out of their way to influence someone’s personal lives (Jill did it with family but more-so with Priscilla). The biggest difference that stands out to me in terms of ethics is that Jill was NOT a doctor and therefore does not have the same code of ethics to live by. For Jill, this was a passion that was being fueled by her daily struggles and confusion with a rare genetic condition. Her intention was to help bring clarity and potential health benefits into other’s lives whereas Furlong’s doctor was not making a comment that was going to help anyone. It was never relevant to his job of treating/diagnosing the patients that were being presented to him. As a doctor, he had an obligation an oath to promote health and well being in whatever patients he saw. Suggesting that a mother should have aborted the patient does not fall into those parameters.
After discovering Pat Furlong’s son had a genetic disorder, the neurologist criticized her for having a child when she “should have known” about said genetic disorder. He told her she should have either not had the child in the first place, or to just have had an abortion. Not only is this wrong because it is not based on fact (the disorder did not run in the family, it was actually a spontaneous mutation), it is awful that THAT is what he had to say after discovering her sons life threatening condition. He should have been more supportive and reassuring after the prognosis. Moving forward he could have suggested family planning, but saying such crude statements after delivering devastating news was unethical and inappropriate.
While Pat’s neurologist gets paid for his knowledge, and has made a career of studying and treating neurological disorders and maladies, he himself does not have to live with these conditions. That is where the difference in insight between him and Jill Viles. Jill has independently researched and studying muscular distrophy and related genetic disordered. She is not making money from her knowledge–she is learning to better understand her and her families own conditions. Her research even inadvertently save the lives of both her father and Priscilla Lopes-Schliep.
Graham, I agree with your post and giving such rude comments when the child is already born and the parent is going through so much pain, is ridiculous. Being a mother, I know how hard it is to see your child sick even with a mild cold. I can not even imagine what Furlong would have gone through at such time. It is ethical enough to hold him with his tie and to say the things she said at the moment. He deserved it!
In the first article, the doctor told them that there was absolutely nothing that they could do for their children to just “take them home and love them, their going to die.” When it wasn’t entirely true, so Furlong went to get more opinion she had even pretended to be a doctor a couple of times just to see doctors because most doctors didn’t want to deal with distraught mothers. If I were in her shoes, I probably would have done the same thing, mothers do anything and everything that they possibly can to help save their kids. After her sons had been in multiple medical trials, she eventually she had found a doctor that had figured out that steroids prolong the muscle decaying process. Though her sons could not partake in this experiment she had tried to get her husband who was a physician to write the script for it and when he refused, she forged his signature on the prescription but decided not to fill it in the end.
In my opinion, I feel as if the doctors could have done a little more for her than what they claimed. Half of them didn’t even want to meet with her because she was a distraught mother. They also could have allowed her sons to participate in the steroid trails to see if it could have helped her sons but they would only do it if one got the treatment and the other did not so they could see the effects and how it would work.
Brook
I agree with you on how the Drs could have done better. I’m would believe that almost every mother in america would do anything in their power to save their child’s life from any disease.
I know I would. One thing that sticks out is the fact that after she forged her husband’s signature to obtain the medications to administer the drugs to her kids she chose NOT to go through with it. That shows that even in the face of this adverse situation that she still had enough common sense to know when and where to draw that boundary line. I applaud her for that!
test
I have noticed a lot of people have dinged the doctor’s bedside manner as being unethical. I would disagree with that, The doctors’ unethical behavior was the insistence that Pat should have not had children especially the 2nd manchild. The dismissiveness of the doctor towards Pat is quite appalling, and his bedside manner is atrocious.
Jills insight was simply learning as much as she could about what was affecting her body, Pat Furlongs DR just didn’t care, and was cold and unempathetic to her situation. The digging that Jill has done has to lead to being able to connect the dots on her specific mutated genes, and that is huge when looking for a reversal. I have a friend that was diagnosed with ALS and she is similar to Jill and scours and researches everything in her spare time, At this point, she is still fully functional, however, the disease is progressing very slowly at this writing. Because of my friend, I can empathize with both Jill and Pat on their pursuing, funding and more research to help find a cure for their genetics.
The doctor in the first article failed to take into consideration respect for Furlong’s decision. He was insensitive to the possibility of Furlong’s religious views or beliefs coming into play with the result of her pregnancy. She could have been aligned with a belief that prevented her from having abortions or using contraceptive methods to prevent pregnancies. Furthermore, he made no effort to uncover the details of her initial response which highlighted that it was not in the family. If he would have merely asked a few more questions and listened with an intent to discover the “why” to her situation, as opposed to brushing her answers under the rug, he would have been able to uphold a more respectable approach. Being flexible and responsive to patients’ reasoning is expected in the role of a doctor.
The doctor seems to approach the situation without curiosity or desire to uncover answers about Furlong’s situation, regardless of the extent it related to the scope of his practice. As a doctor, he should have known his own limitations and where to seek a second opinion or suggest a referral. Unfortunately, he did not take into account a state of empathy which would have led him to the appropriate approach of being inquisitive about the spontaneous mutation.
Jill Viles seems to approach her own situation with relentless curiosity. I believe part of this approach is the fact that it affected her so personally and that it also was something she observed from within her own family, specifically her father. The doctor in Furlong’s case thought the answer was obvious in looking at assumptions formed from just following a mold of the Duchenne disease being familial without looking at the evidence. Therefore, he failed to follow the concept of evidence-based medicine. The explanations Jill began to uncover as she researched answered questions people had asked her and she had been asking herself since she was a child. When people don’t question the norm, they fall into a lifeless cycle of disappointment and mistreatment.
Rachel, I agree with you pertaining to your thoughts about the doctor seeking a second opinion. The healthcare system has evolved so much and it is important to acknowledge our model of both patient-centered care and it’s healthcare TEAM. The patient and family are included at both the center and part of the team. Doctors from a variety of disciplines work together and with the patient (and their family) to formulate a plan that best suits those at center.
The major ethical error that was made in the first article was that the doctor assigned blame to the mother. He admonished the mother for choosing to be pro-life, assuming she knew the risk that accompanied her pregnancies. In addition to his insensitivity, he assumed the mother had access to her familial history, ignoring the possibility that her family could be estranged. It is also important to address the manner in which he delivered the diagnosis. As a healthcare provider, it is important to consider each patient’s and their family’s values and beliefs and not impose your own, especially those assigning blame. While shadowing a Palliative Care and Pain Management NP, I noticed the delicacy and empathy she employed when conversing with her patients. Yes, the doctor should’ve remained honest and realistic, but not at the expense of the patient’s or family’s hope to live. Jill, however, maintained a purpose and hope. I insight the difference between she and the doctor from the first article being “not so stuck on empirical”. Jill did not have the education that of the doctor nor did she have his clinical experience. I think this worked in her favor of being able to look at the disease from a different perspective. The disease was hers, and she owned it by researching it and hypothesizing new ideas. Doctors often shut down innovative concepts and fail to even hear the patient’s full scope. This hinders some of them sometimes from being able to see things differently as Jill did, which may be the difference between what is already commonplace and a cure.
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.
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.