Archive for September 2010

Advice to NOT be a “good patient”   1 comment

http://www.cnn.com/2010/HEALTH/09/30/bad.patient.save.life/index.html?hpt=T2

Interesting story today on CNN about NOT being a “good patient…” it is a plug for Cohen’s new book but never the less super interesting:).

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Posted September 30, 2010 by terieleawatkins in Uncategorized

In Need of Care   5 comments

First, I feel compelled to say this: Rapp’s book was by far the most difficult reading I’ve ever done for a class.  Chapter nine did some serious emotional tugging that made it difficult for me to continue reading.  It was wonderfully valuable and well-written stuff, but those quotes were just so raw and difficult.

Two components of the palliative care curriculum unit clearly stand out after a reading of Rapp:

  1. Identify major aspects of suffering, loss, bereavement, ritual & meaning at the end of life.
  2. Identify major areas for consideration in end-of-life care in special populations – pregnancy (death of mother/fetal survival, survival of mother/fetal demise); neonates & infants; children; the elderly; cognitively impaired; mentally ill.

I’m thinking that doctors should have training not just in how to treat terminally-ill (or selectively aborted) patients, but also in bereavement concerns for caregivers and survivors.  The tales in Rapp of poorly handled disclosures from insensitive doctors were simply appalling, and I’d like to hope that we could infuse some compassion into our curricula.  It seems to me that patient-centered care should be of utmost importance.

How can we teach compassion to med-school students?  Can an appreciation for bereavement be made a part of existing studies, or will it seem merely like Yet Another Thing to Learn?  Could the infrastructure or staff surrounding potential losses (like those who report the results of amniocentesis, those working in geriatrics, and those working in abortion clinics) be charged with providing supportive counseling as well as medical care, or would that bankrupt the system?  We seem awfully concerned as a culture about the physical and medical wellness of patients, but the emotional well-being of both patient and family is so critical and chronically ignored.

Posted September 28, 2010 by Chris Friend in Uncategorized

The Dead Language   8 comments

Its hard to examine these types of readings without a strong emotional reaction; its even harder to try and find the words that can do these emotions justice. If it’s this difficult for us to discuss this material, I cant even imagine how difficult it must have been for these women to tell their stories in interview with Rapp. The sad thing is as hard as it must have been for them, more often than not, modern medical systems dont usually allow these women the outlet to mourn the loss of these children in any meaningful way.

Though it did help to give doctors a universal communications tool, the decision to name medical terms in Latin served to sever the link between patients and doctors. Where one saw the mass of cells as a baby, the other saw the baby as a mass of cells (220) a mass of cells with a long name labeling and classifying it, removing its humanity. Where doctors see amniocentesis as a routine mundane procedure, patients gaze at the spot of injection as a scar, a point of invasion.

This is constantly being tied to language; doctors have named these things, they hold power over them, they not only are the curators of this technology, but they know the secret coded language that these procedures are named for. It might sound like I am romanticizing this, but when non-native English speakers have no word in their native tongue for these procedures, how are they to even think about these things coherently?

This becomes even more problematic when not only language but culture stands in the way of patients being able to speak. For women, this seems to happen in the diagnosis, the testing; for men it appears at the loss of the baby. Society charges men with being in control; the men in these narratives seem to explode with language when confronted with the authority of the doctors. When there is nothing they can do, and society tells them they are not allowed to cry, they too are silenced.

I’m not trying to be ironic when I say that I don’t know what to say to this. Are these stories getting to those who can hear them? Judging from some of the reactions of the doctors, the need to label patients, and the general air of disrespect we have been reading this semester, I wonder how much voice patients are really allowed to have.

Posted September 28, 2010 by capochetta in Uncategorized

Conflicts within Embodiment Messages within Pregnancy (within Rapp)   6 comments

While reading Rapp, I started noticing some interesting conflicts in embodied representations circulating throughout the rhetoric of pregnancy and authority/responsibility. For instance, Rapp claims:

Feminists have strongly criticized the ‘iatrogenic (medically generated) anxiety’ which contemporary obstetrics in general, and amniocentesis in particular, produce. As many […] have argued, the controlling preoccupations of prenatal and obstetrical health regimes turn pregnancy into a diseased state, sapping women’s confidence in their own bodies’ ability to produce healthy babies naturally. In that process, medical services, overwhelmingly controlled and practiced by male doctors, become indispensible (107).

You could make a strong argument that modern medical practice/rhetoric has instilled this “iatrogenic anxiety” in us all, forcing living into into the space left vacant between illness and non-existence (birth/death). As Zygmunt Bauman says in his Mortality, Immortality and Other Life Strategies, “We do not hear of people dying of mortality. They die only of individual causes, they die because there was an individual cause. No post-mortem examination is considered complete until the individual cause has been revealed. If I defeat, escape or cheat twenty causes, twenty less will be left to defeat me. I can do nothing to defy mortality. But I can do quite a lot to avoid a blood clot or lung cancer” (138).

But it’s interesting to think of (as Rapp claims) pregnancy as illness, as if it’s a liminal state where illness becomes the norm/the assumption, and the goal is to survive this liminal state until you can return to the world of the healthy—a goal that can only be realized with the express aid of medical technology and professionals.

At the same time, Rapp claims:

Notions of women’s embodied responsibility are played out inside an imaginary and bounded female-centered domain, drafting women as the nearly exclusive guardians of fetal and child birth […]it also symbolically aligns women with all the labors of making a nurturant home for the pregnancy and for children while assigning men proprietary interest, but not a practical responsibility, in a pregnancy’s outcome (87-88).

In other words, it’s the women’s responsibility/duty to make sure the fetus survives and is healthy, but she can’t do that without the intervention of medical professionals (mostly men) and technology. So, if the fetus dies or the child is unhealthy, it’s the woman’s fault, and if the child is born healthy, it is due to medicine’s victory over pregnancy (pregnancy as illness).

I wouldn’t consider myself a feminist critic per se, but that just seems fucked up.

This is just one example of where the messages of embodiment within pregnancy are confusing or confused. We’ve already discussed in class how the burden of proof has shifted from the quickening to the sonogram to the urine-stained stick, moving knowledge away from the phenomenological to the technological, and yet a lot of the rhetoric involved with pregnancy, child birth, and child rearing still revolves around notions of women’s intuition, maternal “gut feelings,” and embodied sources of knowledge.

Perhaps the issue itself is in a liminal state, shifting away from embodied knowledge but not yet fully invested the medical/technological. If that’s the case, I wonder how the pregnancy experience is going to be reinterpreted as embodied sources of knowledge become less trustworthy or even recognized.

-John L.

Posted September 28, 2010 by lamothej in Uncategorized

I need to have experienced pregnancy to avoid being hypocritical.   7 comments

I am going to have to say that I feel like such a hypocrite having formed such strong opinions on situations such as those Rapp has given in her text…but I really just can’t help it.  I can’t imagine what this is like for all the guys in the class….

Every single section of every single chapter, I keep returning to that notion of female responsibility – motherly responsibility – caregiver responsibility.  In Chapter 4, she states that, “Most obviously, scientific knowledge assigns each parent a 50 percent contribution to the hereditary materials of a fetus at the moment of conception…” but later brings to light the reality that, “The widespread, popular accountability of women for the ‘quality control’ of fetuses and children contrasts with notions of male responsibility” (86-87).

This overwhelming scale tipping weight of responsibility on the woman or mother in Chapter 5 gives me a second thought on even entertaining the notion of becoming pregnant.  As much as pro-choicers like to give women the autonomy to choose life or abortion, in the case of the amnio test, the woman not only has a responsibility  to a fetus (or life), but also to her commitment to carry out a preganacy (and especially if there is a disability involved due to the shift of the sociocultural view on protection of disabled persons in heavy contrast with those views less than a century ago).  If she has already told friends, family members, facebook – and most importantly shared this information with her partner – how much of a let down/stage for disappointment will be reflected upon her as she vocalizes her desire to abort the fetus based on a disability?  Not only does she have expectations of responsibility for herself- so do others in her life and the society she lives in.

Rapp states that, “Ending a pregnancy to which one is already commited because of a particular diagnosed disability foces 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” (131).  As insincere this may sounds, brought to mind here is the notion of natural selection and survival of the fittest in nature at large.  As we place the responsibility of life or death of the disabled lions, birds, tigers, etc. in the wild on nature itself (I hear myself saying as I watch National Geographic, “That’s just the way it is, they wouldn’t have been able to survive and the mother can’t look after that baby forever because she has to survive and live as well”)….as humans the value of life is too great to view reproduction in this manner, primarily due to ethical discussions such as these in Rapp’s text.  So while we place no responsibilities on mothers in the wild for adjudicating the standards guarding entry into their communities, there is such a heavy weight for mothers in the human community.

So, I guess my questions that revolve around ethical responsibility are:

By performing amnio tests, who’s best interests are really at mind – mother or fetus?

Also, I question the intentions of this test – is it really designed as an informational tool for parents – or is it designed really to turn mothers into these so called gatekeepers, forcing them to assume the responsibility of sole permissor for life in this world – perpetuating that male responsibility is just a “creative spark”…after all – it IS all about a woman’s choice – right (sarcasm in its heaviest here)?

Posted September 28, 2010 by terieleawatkins in Uncategorized

Cruel Bait & Switch? Just unfair or medically unethical?   7 comments

      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.

Posted September 28, 2010 by gentyrrell in Uncategorized

Culture and Religion   2 comments

Testing Women, Testing the Fetus presents many opportunities to explore the LCT Cultural Medicine curriculum, but Rapp spends a significant amount of time examining a topic that is not on the list of learning objectives: her subject’s religious affiliations, and the effects those affiliations have on their choices and responses. Maybe religion is implied under “cultural beliefs and values,” but I wonder if a more direct heading of faith and religious beliefs in the context of medical care would be appropriate?

Rapp identifies her subjects by denomination and adherence, and presents belief systems as a significant variable in many cases. In her discussion of positive-diagnosis abortion, she offers her “strong impression” that Catholic women, for instance, “suffer more guilt and frame their suffering more explicitly in terms of sin and the need for absolution” (252). Of course Catholics were not alone in expressing feelings of moral conflict and turning to personal faith in the situation of selective abortion: Rapp also speaks with Protestant and Jewish women, and a “returned” Buddhist (251). The situation of elective abortion is already a cause for self-doubt and grief, and I found it interesting that some women had the support of their faith and families to get through the situation while other women felt they had to hide their aborted pregnancies within the very same context of faith (258).

Abortion is gendered, medicalized, and thoroughly immersed in cultural and political sites of contention and judgment; it is an extreme example most doctors will never have to deal with. Nevertheless, this discussion illustrates the need for physician awareness of their personal belief systems and an understanding of how those belief systems might interfere with objective patient care.

The account of the woman who was counseled by obstetricians and genetic counselors to go to a Down’s syndrome convention when she was trying to terminate her pregnancy shows the damage that can be done when doctors impose moral judgment in place of clinical judgment (Rapp 254). The impetus to “guide” the pregnant woman’s decision is fraught with moral overtones and subjective values, and magnifies a difficult personal decision into a judgmental social discourse. I think that Rapp’s subsequent chapter illuminates clearly the repercussions on both sides of the decision to abort a disabled fetus, and also unfolds the fact that the person(s) who must live with the outcome of the decision is the woman and her family, and not the counselor, doctor, or health care provider.

Another potential topic within the cultural discussion is the response to disability. I found the idea of “imagined communities of extended kinship” in terms of the Down’s syndrome children intriguing, and I felt it places them in a cultural category of their own (Rapp 291). This viewpoint contrasted sharply with the “incurably damaged” babies who seem to be an affront to some of the physicians who deliver them (267). It appears that explaining a child’s disabilities to new parents must be on a par with telling someone they have a fatal disease; it signals not only very bad news for the patient, but also a failure of the physician’s skill on some level. As Rapp notes, “Doctors may have strong personal and professional responses to delivering and treating babies who cannot be seen as normal, and whose ills cannot be cured, investing them with symbolic meaning which sometimes supersedes their individual characteristics” (266).

My question: would educating medical students to the potential capabilities (instead of the probable disabilities) of these children be an appropriate topic to include in a cultural medicine forum?

Rapp, Rayna. Testing Women, Testing the Fetus. New York: Routledge, 1999. Print.

Posted September 28, 2010 by MGalbreath in Uncategorized