Many times doctors make decisions about what a patient should or shouldn’t have tested, many times unbeknownst to the patient that these decisions are even being made. Throughout _How Doctors Think_, Jerome Groopman also touched on the constant decision process for which the patient is unawares. I assert though that usually if a clinician suspects something may be very wrong, but conclusion requires further investigation (maybe more invasive testing), then the clinician pushes the patient to have that test, to further investigate. For example, this past summer I had suspected I was developing skin cancer and so I saw a Dermatologist. My grandfather has skin cancer and I had already mentally prepared myself that the area of skin would probably have to be biopsied/removed, but before any discussion could take place the doctor was already strongly trying to convince me that the area should be biopsied immediately. In fact I had to interject, “Really, it’s okay doc. I figured you would have to remove it.” (it turned out to be precancerous and caught just in time).
Yet, while reading Rayna Rapp’s _Testing Women, Testing the Fetus_, I found it quite interesting that in regard to amniocentesis the entire decision is put on the patient (and possibly in conjunction with her spouse) whether to have this test at all and what the results really mean for the mother’s/ couple’s future, the future of the fetus (whether birth or abortion), and how the decisions will effect the entire family unit. The patient is not only past the role of unaware passive patient, but past the role of participating patient. The patient acts as major decision maker in a culturally, socially, and medically complex situation. Certainly it cannot be an easy decision, as Rayna Rapp points out: “Ending a pregnancy to which one is already committed because of a particular diagnosed disability forces each woman to act as a moral philosopher of the limits, adjudicating the standards guarding entry into the human community for which she serves as normalizing gatekeeper.” pg 131
Rapp also recalls many interviews that discuss the humanization of the fetus taking place through sexing the fetus and the utilization of sonogram technology:
“Let’s face it, knowing the sex made it go from a fetus to a child.” (Marise Blanc, 35, white college professor) pg 123
“I was hoping I’d never have to make this choice, to become responsible for choosing the kind of baby I’d get, the kind of baby we’d accept. But everyone, my doctors, my parents, my friends, everyone urged me to. . . have amniocentesis. Now, I guess I’m having a modern baby. And they all told me I’d feel more in control. But I guess I feel less in control. It’s still my baby, but only if it’s good enough to be our baby, if you see what I mean.” (Nancy Smithers, 36, white lawyer) pg 127
“So I went off to have the sonogram….and they begin to refer to the fetus as ‘he’….. It became a real baby. I didn’t realize what a sonogram really was, what they show you up on that screen. …..I mean there was a person there, inside my body, looking out at me. It was too strange. And too traumatic to have an abortion after that. That’s what the sonogram did.” (Carol Seeger, 42, white museum curator) pg 127
“If they hadn’t interpreted, it would have just been gray blobs, and now, I’m more frightened to get the results of the amnio back.” (Daphne McCade, 41, white college professor) pg 126
So with weight of the decision in mind, is it truly ethical to portray the fetus as a human being/ baby prior to getting amniocentesis results back? Should ultrasounds/ sonograms not be shown to patients prior to amnio results? Should doctors and technicians not be allowed to refer to the fetus as “he” or “she” or “baby” until it is clear after amnio results what decision has been made?
Certainly right-to-lifers would view this as a key measure to keep women from having abortions, by humanizing the fetus so that abortion would be as traumatic as possible, but is that really the medically ethical way to go? Is that wreckless use of technology?
Bottomline: Is it medically ethical to sit there and say, “Oh look at your new baby girl, see? That’s her feet right there, over there, see that’s her hands….” and then do an amniocentesis on the pregnant patient, come back a couple weeks later and say, “Uh, it has a serious disability… we need to discuss your options” i.e., abortion?
And even if the amnio results come back with flying colors, was it worth putting the mother/ couple through a rollercoaster of emotions between humanization of the fetus until the time in which they get the amnio results back?
—-Genevieve
Rapp, Rayna. _Testing Women, Testing the Fetus_. New York: Routledge, 1999. Print.
Groopman, Jerome. _How Doctors Think_. New York: Houghton Mifflin, 2007. Print.
Texts and Technology of Medicine 
I think that you pose a great question, but I disagree with where the ethical responsibility lies in this particular situation.
“Is it medically ethical to sit there and say, “Oh look at your new baby girl, see? That’s her feet right there, over there, see that’s her hands….” and then do an amniocentesis on the pregnant patient, come back a couple weeks later and say, “Uh, it has a serious disability… we need to discuss your options” i.e., abortion?”
While if the sonogram was a forced action, yes I think it would be ethically wrong to approach this situation in this manner (such as the law that the State of Florida tried to sneak in last go round…thank goodness it was vetoed…here is a link: http://www.nytimes.com/2010/06/12/us/politics/12ultrasound.html).
However, regardless of the requirements of insurance and those things, patients have the choice of viewing the sonogram or not. So, patients can technically choose when to begin viewing the “fetus” as a “baby” and all of his/her/z body parts. Humanizing a fetus, to me, comes at the choice of tbe parents.
And this is part of vocalizing your wishes to your doctor – if you don’t want to know this info – tell them. If you want to wait until the amnio test is complete to begin a relationship with the fetus – say so.
The fault of humanizing a fetus should not fall on the doctor AFTER the amnio test comes back positive…I just find that super unfortunate for the doctor and a lose-lose situation. It is THEIR ethical duty to report the findings of that test, regardless of the relationship of parent to fetus. It is just unfair for the doctor to bear that burden alone under the name of ethical treatment.
If it was a fair world – I would say it is 50/50 responsibility for a situation like this to remain ethically appropriate – but I know that is never the way it actually works out:).
Well first off, I want to make clear that I wasn’t putting all the blame on the doctors but rather noting policy of the medical community at large, including the technicians and hospital administrations.
But even in the instance of a planned pregnancy, after reading Rapp I’d have to assert that the humanization of the fetus is not explained enough or properly to the patients. I wouldn’t say the parents were informed enough to make the “choice” of seeing the sonogram. They didn’t understand the gravity of the situation. They didn’t realize the weight that the technology would put on their shoulders. It’s as if the sonogram was more of a cool toy to show a new baby than a diagnostic tool.
Side note: I’ve never been pregnant and don’t have many friends who have had children, but am I correct in assuming that many times the placement of sonogram machine/ sonogram monitor is already set up within a patient’s room so that the mother/couple can view the fetus? It’s expected that they will want to know all and to see all as soon as possible?
—Genevieve
Genevieve asks a very provocative question, and I think it’s one worth exploring; however, I have to disagree with the notion that medical professionals should avoid characterizing a fetus as a child because of potential genetic disorders down the line. If we extend the metaphor, that’s like saying I shouldn’t get into a relationship with anyone because there’s a chance that that person could become sick or die in the near future. There’s always that chance, but I’m not going to resist opening up to someone because there’s a risk I may be hurt emotionally later on.
The fact is that the vast majority of pregnancies in America go off without a hitch. It’s easy to forget that fact because we hear so much about complications, birth defects, miscarriages, etc. And even though there are higher risk groups (which are the woman pushed toward amnio), the majority of those women have healthy pregnancies as well. I’d hate to “throw the baby out with the bath water” simply because there is a greater risk that there could be problems (I completely apologize for using that cliche, but I couldn’t help myself).
Also, I think there are legitimate reasons why a clinician might characterize a fetus as a child. First, a woman is much more likely to take care of herself (and subsequently the fetus) if she believes that she is carrying and caring for a baby rather than a fetus. Also, pregnancy is uncomfortable (or so I hear), and I think women are more likely to put up with the discomfort if they picture the end result being a child that is going to grow, and play, and wear cute clothes than a fetus that looks more like an alien than a human being (and would certainly not look cute in pink dresses).
It takes a long time to get used to the idea of being a parent. 9 months isn’t even enough, but it’s a start. I can’t imagine what it would have been like for my wife and I if we hadn’t started thinking of our children as children until after they were born.
Of course, I realize that I was blessed with two healthy children, and if one of them had died in the womb, my opinion on this issue may be different. But I’d like to think that I’m not someone who is going to base my decisions or opinions off of risk potentialities.
Now wait a minute. You’re twisting my words.
The point was not to build up the mother/ couple for a psychological high of parenthood should abortion in the end be on the table. And from reading Rapp, it seemed while many are able to make the decision to go ahead with a disabled child, others who formerly considered themselves against abortion were then for abortion when it came to their own fetus. I think parents can say what they will or won’t do much easier than when it comes time to do whichever (go along with the pregnancy or have an abortion), when the amnio results are finally in. And why make it that much more of a psychological stresser by humanizing the fetus prior to amnio results?
I did not say not to start thinking of children as “children” until after they are born. I said after the amnio results are in.
Furthermore, even in the instance of a healthy child and a successful pregnancy— Wasn’t it that much more of a psychological stresser during the 10 to 14 days of waiting for amnio results than if you hadn’t fallen in love with a sonogram image? Is that really healthy on the mother? On the couple?
I’m not saying there would not be worry involved. Of course there would be. But after the heart beat has been heard and the little head, hands, and feet have been seen, isn’t it that much more of emotional rollercoaster waiting for the amnio results?
Now, I do not have children. So on that part of the argument I relinquish to you. 😉
However, I thought really long and hard about the decisions made in the book. On one hand who am I to terminate a pregnancy of a disabled child, me being so physically chronically ill myself? On the other hand, if I knew that my child may be severely disabled I don’t know that I would wish that on anyone AND there’s no way I’d be able to physically take care of that child even if I was married. It would be a sheer miracle if I was able to raise a healthy child.
Anyway, it’s all very difficult. It’s easy to play devil’s advocate. And I don’t really know what exactly I would do if I was in that situation. But I do know this: I wouldn’t want to humanize the fetus prior to getting my amnio results back. Call me crazy. But if I had any way of minimizing that I would.
This is something I’ve conciously thought about. If I were to find Mr. Right and get married it truly would not be in my best interest or the child’s to carry my own pregnancy. But accidents happen. And I thought what would I do? I have a serious Choline deficiency that is not corrected through supplementation (long story). I am Choline deficient on a daily basis. Choline deficiency leads to all sorts of birth defects, notably severe, even fatal, heart defects of the fetus. It really gets to me to wonder what the decision would be like, but frankly amnio or no amnio I probably would not think of my fetus as human until he/she is born because I wouldn’t want to get my hopes up.
—Genevieve
Regardless of whether a doctor characterizes a fetus as a baby or not, it really comes down to what the parents feel about the mass of cells inside the mother’s body. If the mother characterizes the fetus inside her as a child, the doctor can say anything s/he wants, can show or not show the ultrasound, etcetera, but that fetus IS a baby to the mother. Some believe that life begins at conception, some at birth, and some believe somewhere in-between. Our minds may be changed through technological interventions such as sonograms and amniocentesis, but for the most part, we believe what we believe despite what our doctors may say to change our minds. Rapp effectively demonstrates the complexity of the patient-doctor relationship, especially where genetic testing is concerned, and Genevieve certainly poses interesting questions. I just grapple with the notion that one has a choice about humanizing their fetus regardless of test results and time frames.
Gen says: “I probably would not think of my fetus as human until he/she is born because I wouldn’t want to get my hopes up.”
I think that it would be really hard to fight against humanizing a fetus in the latter stages of pregnancy, even if it is in your own best interest to protect yourself against those feelings. I suspect that there are actual hormonal/bio-chemical processes at work, and the psychological affect of feeling a fetus kick and move in your body is . . . I don’t really have the words to describe it, but it is really overwhelming.
Discussions like this make me realize why doctors want to move away from narrative medicine and more towards protocol, and demonstrate why such a move would never be practical. While I agree that, as stated elsewhere on this blog, the decisions of mothers during a pregnancy may be partially an “illusion” created by cultural, economic and social issues, it is still far better to give patients this authority rather than rely on a series of steps outlined by a institution (amnio before sonogram, for example), as those steps would remove any patient individuality, almost eliminating the patient entirely.
The question I have is not so much is any individual practice better or worse as that should be left up to the patient to decide, but why aren’t more tests handled like amnio? Why is the decision to test for other diseases almost entirely in the hands of the doctor rather than the patient? The obvious answer is that such a shift in policy would cost more time and potentially more money that insurance would not want to pay out, but wouldn’t it be better to give this decision to the patient rather than the doctor?
Of course, all the issues we’ve discussed with self-diagnosis and “cyberchondria” would play into this, but I wonder if the most ethical thing to do would be to let the patient decide rather than having a hypothetical discussion about any given scenario.
Note: I am not saying that what we are doing here is wrong or counter-productive, bu perhaps our job should be to create a list of options for patients to choose from rather than to discuss any one decision as “right” or “wrong”.