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? . Note that I must approve your first comment, so you won’t see your comments until after I approve them.
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In the first article, a neurologist said there was no hope and told Furlong that she should have known about her familial disease and should have had an abortion with her second child. I believe this is unethical by acting on paternalism in telling what the patient should have done. With Jill’s physician, she refused to look at Jill’s papers and simply said that her self diagnosis was false. The difference between the physicians were that in Furlong’s case, the neurologist had known about the disease and made the connection from the signs of her sons. However, with Jill’s case, the physician thought that the disease only occurred in men and refused to follow up with Jill’s concerns.
In the first article, a doctor shamed Furlong for having kids. He assumed the disease was genetic and she knowingly ran the risk of having kids with it. Really, it was the result of a recent mutation. I think the reason Jill Viles’ doctor just believed she didn’t have the disease was because the information they were receiving was coming from a teenager. Furlong’s doctor made the mistake of thinking she had previously knowledge of having Duchenne muscular dystrophy, while Viles’ doctor wouldn’t even do their own tests because of their (at the time) accepted “fact” that only males could develop Emery-Dreifuss.
Note: the disease is “Genetic” (as opposed to say “environmental”; as you mention it is due to a recent mutation.
It was a very sad case in Pat Furlong story, with her two young sons, both having Duchenne muscular dystrophy. I think the mother should of given the two boys the steroids instead of withholding it, since they were only doing clinical trials on it. I would of taken the chance if it would of help my child for having the gene that gave the two boys Duchenne.
For Jill Viles, who repeatedly went to doctors to get a definitive diagnosis, and she had to self diagnose Emery-Drifers. Than still the doctors denied that was possible.
The doctor made a very crude statement to the mother insisting she should have aborted her child. Ethically, this is not how a medical professional should behave. Medical professionals, especially physicians who deal with individuals who are in such vulnerable positions should be empathetic to their patients and not intentionally say things to cause them harm. This goes against multiple ethical principles including beneficence and non-maleficence.
This doctor was stuck in his way of thinking and truly did not care about his patient. Jill however was intuitive with her thinking and open minded. She took a look at herself and made connections to diseases that nobody else in the world had before, extending the life of her father and a countless number of those born with this disease since. Jill was very determined to get to the bottom of her issue, using her limited resources and reaching out for help, she has done more for medicine than this doctor probably ever has.
These are both heart touching stories about individuals overcoming a struggle they have no control over. I think the way they faced their adversity in such dire situations is pretty inspiring.
The neurologist that spoke with Furlong at Cincinnati Children’s Hospital made an ethical error. I’m all for people being educated on potential risks when it comes to having children. A doctor telling someone that she should have aborted her child due to the risk of acquiring a genetic condition is way overstepping some boundaries. It reminded me of the eugenics movement.
The difference in insight between the two doctors was that Furlong’s children had a confirmed diagnosis whereas Jill’s physician chose not to pursue testing, possibly due to the prevailing thought at the time that this condition only occurred in males.
Note that when I was asking about the difference in insight I was not comparing doctors, but comparing Jill to Eileen’s doctor.
The mistake that the first doctor made was that he assumed that Pat knew about the genetic condition, knew her first son had it, and gave it to the second son anyway. He shamed her for have another son and told her she should have prevented the second pregnancy at all costs. Since one third of cases don’t have any family history of the disease, he should not have blamed Pat for her children’s illness. She obviously didn’t know what was going on with her children and that was why she went to see him. Doctors should never blame parents for having children who have a terminal disease. Especially not soon after the parents are told their children have a terminal disease.
The difference between the two doctors was that Pat’s was sure that she knew her family’s history and Jill’s was sure that she didn’t. Doctors aren’t big fans of self-diagnosis and if often takes years of convincing for them to run some required tests, even if someone has all of the symptoms. The medical field puts a lot of emphasis in family history, but that isn’t always best. Sometimes, diseases mutate randomly even if they are usually genetic; some diseases are rare enough that they often get diagnosed as others; and some families can’t trace their medical histories back more than a few generations.
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? .
I believe the doctor went wrong in telling her that there was no hope, and to simply accept the diagnosis. I think that he simply did not want to look further into it himself. As seen by the future diagnosis of the mutation, there was obviously more to go off of, but he simply pushed all other factors to the side and blamed the mother for putting her sons through this horror. Jill took a much more active approach, taking no time off and stopping at nothing until she had factual answers. She pushed herself and others to come up with these answers so she could help herself, her families, and many more. Actually having a disease vs. simply diagnosing a disease convey very differently, and that can push individuals who have much harder to find answers rather than simply give up.
In the case of Pat Furlong, the neurologist committed an ethical error when he wrongfully blamed Pat for knowingly causing the children’s genetic condition. This doctor assumed that Pat was aware of the fact that she was a carrier and failed to treat her with respect. He openly blamed her and told her that she should have had an abortion. These actions go against the ethical principles of patient autonomy, beneficence, non-maleficence, as well as paternalism.
Unlike this neurologist, Jill Viles did not blame her family for passing on her genetic condition. She was the one who discovered that her father had a genetic condition in the first place, and she worked hard to get her the family the care that they so desperately needed. She had the insight to know that no one in her family was aware that they were passing on this genetic condition.