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.
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Understanding the inheritance pattern and common characteristics of certain diseases and disorders can be helpful in making correct diagnoses and informing families of their risk or lack thereof. However, rare cases can often be overlooked when genetic diseases are looked at only in terms of the majority rather than the minority. This was the case when both Pat Furlong and Jill Viles approached their doctors with rare occurrences. Pat Furlong approached her doctor following the presentation of concerning symptoms within her two young sons. The doctor diagnosed the boys with Duchenne’s muscular dystrophy and made the major medical error of assuming that the genetic disease had developed based on a prior family history of the disease. However, the doctor was overlooking the 1/3 minority of cases that developed with no prior family history and existed as the proband or first occurrence of the disease in a family. The neurologist scolded Furlong for having had another son in the first place and claimed that she should have known that it’s a familial genetic disease. He claimed that cases of the disease were only found with family history, as the genetic condition was coded on the mother’s X chromosome and passed down. However, Furlong had no family history of the disease whatsoever and could not have predicted the presence of the disease in her children prior to the first diagnosis. In the case of Jill Viles, doctors could not determine what was causing her medical issues and did not determine her diagnosis as Emery-Dreifus, as they previously believed that it occurred only in males. However, Jill was able to think past the norm and her research lead her to the correct diagnosis, despite doctors that couldn’t see past the majority of cases. She had a mutation on a gene called LMNA and her chances of having Emery-Dreifus were determined to be so rare that the chance wasn’t even known. Viles had a different level of insight than her doctors and the doctor that saw Pat Furlong possibly based on the lack of medical education she had that didn’t limit her to thinking in the way of doctors that focuses on the majority of cases. Viles obviously had a personal connection to the research in terms of herself and also her father and siblings, which is also a likely contributor to her making the correct diagnosis. Viles’s second diagnosis of partial lipodystrophy was also brushed off by doctors and it was only when Viles ignored the chances and usual cases that she was able to correctly diagnose herself, members of her family, and even Priscilla Lopes-Schliep, whom was a total stranger at the time. In this way, with the stories of both Pat Furlong and Jill Viles, we are reminded of the importance of thinking outside the box and sometimes ignoring the majority of cases to recognize the rarest of cases.
Seems like the doctors in both articles overlooked the rare cases of genetic disorders and may not have cared enough to investigate. I agree that Jills personal connection to her research pushed her to find a diagnosis for herself. Her ability to not limit her thinking to the probabilities of this genetic disorder happening is what allowed her to begin her own research and somewhat outsmart the doctors.
So I completely agree with your viewpoints, however, I got to thinking last night. It’s easy to say that the doctor shouldn’t have overlooked a disease that has such a large occurrence with random mutations BUT when was this information available? Was it common knowledge at that point or has there been a ton of research done in the meantime? Based on the article it sounds like this disease was something that was known, but the reason there is so much information available now is due to Furlong and her persistence. So maybe that’s why the doctor was so easy to dismiss it and belittle her? Maybe they only thought it was inherited at that point?
Regardless, the physician approached it incorrectly. I’m just playing devil’s advocate here, I do truly think that they shouldn’t have overlooked it, but it is something to think about.
In the Mother Courage article, the doctor made the major ethical error of scolding an autonomous patient. Furthermore, the doctor assumed he knew the entire case when he really didn’t. Finally, he also let emotions and personal beliefs interfere with his work. By scolding Furlong, he was essentially scolding a patient for making their own decision on whether or not to reproduce. He was scolding her for being autonomous and making her own decisions. As a doctor, one should never act against an autonomous patient. Upholding and restoring the autonomy of the patient is one of the main ethical responsibilities of doctors. He also pushed his own beliefs onto Furlong when he assumed that Furlong had gotten the mutation genetically by berating her for not aborting, another big no-no in healthcare.
I would say the reason Jill recognized her disease before the doctor would be attributed to the fact that Jill had lived with it her entire life and would be able to recognize the symptoms immediately. Furthermore, the doctor was probably trained that the simplest answer is the most likely. Because the disease is so incredibly rare, most doctors would push it aside immediately because the chances of it being that are so low. Jill was more ready to accept it because she was not trained to look for the simplest and more likely answer.
Hey Zack!
Your take on how the doctor acted ineffectively in diagnosis and discussion of the condition was really interesting. I hadn’t thought to discuss this ethical error that the doctor made in speaking with Furlong and I think that it is incredibly important to discuss in terms of doctors’ responsibility in the medical field. Doctors are asked to look at situations objectively and refrain from judgment. It is a doctor’s job to help their patient and ease their pain, rather than contribute to the pain of a difficult diagnosis and chide a patient on their decisions. Additionally, Furlong was outright blamed by the doctor for passing on the condition to her children. He failed to realize the fact that Furlong had no knowledge of the condition in her family and a family pedigree would have shown no history of the disease. Even if she had been privy to the information of family history and decided to have children anyways, this isn’t a doctor’s place to judge. This was a great point that you emphasized! I completely agree with your assessment of Jill and why she was able to diagnose the condition when doctors continually waved away the thought. The odds were not in Jill’s favor to have the rare condition, but Jill was able to look at the situation objectively without this factor getting in the way.
The doctor should have never let his personal opinion and emotions get involved. He was wrong to judge a patient off of her own decision and assume that she could have prevented it.
With so many patients that try and self-diagnose and tell doctors to do their jobs the doctor in Jill Viles case wouldn’t budge on what he believed and knew. Considering the probability of her having such genetic disorder was so rare there was very little to no reason to trust in a non-medical professionals thoughts or theories. Since Jill has continually been let down by doctors and health professionals she had no choice but to take matters in her own hands and try and figure out what was happening to her body and health.
I completely agree, in health care, emotion and opinion should (almost) never get involved. In this case, the doctor was clearly wrong in both blaming Furlong and then pushing his own views onto her by saying she should have gotten an abortion. Furlong, as a fully autonomous person, has the right to make those decisions for herself and the doctor has no right to berate her for doing so.
Furthermore, I like your second point regarding Jill’s doctor. He really didn’t have any good reason to believe Jill was right. I’m happy Jill stuck to her gut and followed through on her own. Do you think the doctor was wrong in not listening to her as a patient?
Thank you for your post! I found it truly interesting and informative!
The doctor Pat Furlong approached at the beginning had a very judgemental and negative attitude towards her case. his take on how despite knowing that Furlong carried the disease she could have prevented the pregnancy was so not needed, especially at a point where Furlong was comprehending and getting acquainted with this critical situation. What can or could be done should be an answer getting from a healthcare expert instead of what could have been done. In the second article, Jill was curious and motivated by her own rare condition which kept her going and allowed to analyze her own case objectively without any interference. In both of the articles, they faced a lot of struggles Furlong and Jill’s hunt for the cure seemed to have grabbed attention from the various healthcare communities. The affected individuals were the ones to nudge.
The one major problem I had with the doctor in the first article, Mother Courage, was that he told Furlong to abort her child. I’m not sure where on Earth someone could get off thinking that was okay to blatantly say to a patient. The article points to the fact that this particular version occurs through a spontaneous mutation, and not through inheritance. Even though the doctor repeatedly told her that it was inherited, Furlong insisted it was not. Again, another huge error in my book.
For reference, I’m going to school to be a large animal veterinarian. I’ve worked with countless doctors as I’ve explored the medical field both through interest in a future profession, and as a “professional patient” (I have many chronic illnesses). It is HIGHLY emphasized and repeated throughout your training how important it is to actually listen to the patient and obtain an accurate medical history before any discussion of treatment or hypothesis can occur. If a patient is unaware of their medical history that’s one thing, but it appears that this was not the case. Furthermore, without being concrete in your conclusion and without doing everything possible you never bring up the ‘d’ word. Death isn’t something that is casually tossed around, and to come out and say the things that this doctor did is ballsy at least and crap bedside manner at best. ESPECIALLY with such a high rate of this disease occurring spontaneously (1/3) this conversation should never have happened.
As far as the second article goes, I see myself in Jill. I’ve been to 9876543 doctors appointments, I’ve been written off as a ‘silly girl’ with little to no medical training and dismissed even though I knew something was wrong. Unfortunately, in my experience, doctors tend to go with the easiest verdict and one that requires as little follow through as possible. It only takes one person to actually listen to you, entertain you enough to run certain medical/diagnostic testing, and as soon as the tests come back in your favor……there’s no word to describe it. Again, playing into my career, the best approach and coaching I’ve been taught/received has been to truly listen to the patient. You, as a doctor, aren’t around 24/7 and don’t know what it’s like to live with symptoms and problems incessantly. Sometimes blood work and testing are normal, sometimes they aren’t. Sometimes you need to redo tests or figure out something different. I hate that people are so dismissive of their clients, and I understand there is a lot of information online. I deal with many people who think their Google degree outranks mine, however, I still entertain them and use it as an educational opportunity, a teaching moment if you will. It’s nice that the doctor wasn’t so dismissive in the first one, compared to the second, but in my opinion all these medical professionals need to retake their bedside manner classes. I’ll even save them a seat!