What Do the Doctors Say? provides stories from the author's own experience as a mother. As a scholar of communication, she has identified twelve language patterns that are used to create medical culture. The book is written particularly for parents of children with disabilities but may be a useful tool for all consumers of health care.
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What Do the Doctors Say?How Doctors Create a World through Their Words
By Janet Farrell Leontiou
iUniverse, Inc.Copyright © 2010 Janet Farrell Leontiou, Ph.D.
All right reserved.
Chapter OneThe Language of Self-importance or "The I's Have It"
Disconnected from the Parent in the Therapeutic Setting
Early on in my entrance into the medical/therapeutic world, I encountered the "language of self-importance." One of the first lessons I received on the language of self-importance involved Andreas's walker. Andreas started using a walker when he was about three years old. I researched several types of walkers, printed out specs sheet on each brand, helped to identify which one would work best for Andreas, got the prescription for the walker from his pediatrician, and attained a loaner so that Andreas could try one out. I then brought everything that I had to his physical therapist, Tina.
I remember sitting at a school meeting for Andreas when Tina said, "I secured a walker for Andreas." Everyone, including my husband, congratulated her on her accomplishment. I was in an uncomfortable position. I had done much of the work for getting my son the walker, but if I pointed that out, I would sound petty. I was happy to do the work, but I realized during that meeting how the system was set up to exclude me. I made a comment to my husband about how things had gone behind the scenes. My hunch was then and still is that, in most cases involving disabled children, the mother drives the process for the child's treatment and care, but when it comes to acknowledgment, she is invisible. My husband's response was bottom-line driven: "You got the desired outcome. I don't understand why you're complaining."
I am interested in how talk creates the impression that a single person, the professional, is driving the process rather than it being a cooperative effort. I am also interested in how the mother's efforts usually get shut out. I have found that the mothers I know usually go along with this charade because, in the end, they most care about services for their child and not who gets the credit. The professionals give the impression that they are working unilaterally, and that ensures their own sense of professional worth.
What I find most striking is that, when I reflect on the good interventions that I have brought to my son, most have been recommendations from other mothers. Doctors don't offer many ideas for navigating the world of disability. Yet, I am repeatedly asked, "What do the doctors say?" I don't know exactly how to answer this question. Rather, I'm interested in examining how asking the question places the doctor in a central position and gives the impression that the doctor is the only one who knows. I have never been asked, "What do other parents who are in your circumstance say?"
Most parents who have a child with a disability will identify with my frustration surrounding the fact that every intervention must begin with a doctor's prescription. Most pediatricians are outside the day-to-day care of a child with disability, yet insurance companies insist that all requests, for anything from therapy to equipment, start with a prescription from the doctor.
We all play a role in establishing the doctor as authority through our talk. Once when Andreas had a seizure after being seizure-free for five years, I kept him home and canceled his therapy schedule. A friend asked, "Did the doctor tell you to do that?" Again, I was faced with a dilemma as to how to respond. If I spoke the truth, I would sound arrogant. I was the one making the decisions as to what Andreas most needed. The question, again, created the impression that a doctor behind the scene was directing a plan of treatment and I was following along. Most doctors are too busy and see too many patients to be that involved in the care of their patients, yet the mythology remains.
We all may play a role in recreating this mythology because we want the security that someone, other than ourselves, is really in charge. Speaking with a friend about a potential new neurologist, I mentioned that the doctor provided us with a new diagnosis. She said, "It sounds like you found a good captain."
I responded, "It sounds like I may have found a good first mate."
I think my friend may have interpreted my response as hostile. I am not looking for anyone to be the captain, but I could use some help running the ship. I know that, ultimately, I take responsibility for the course we are on.
When Andreas had the seizure, I called his pediatrician's office, and the receptionist told me to come in. We met with an unfamiliar pediatrician in the practice because Andreas's primary doctor was not in. She asked me to describe what happened. When I had finished, she told me, "I think you are right. I think that he had a seizure. I think that you need to go see a neurologist."
I knew what I had witnessed because Andreas seized during the first weeks after birth, and for many days, I held him in the NICU (Neonatal Intensive Care Unit) as he seized repeatedly. We went to see Dr. Phillips.
Dr. Phillips turned out to be different from most doctors we had visited. We went directly from the pediatrician's office to Dr. Phillips' office. After I explained what had happened, Dr. Phillips asked me a question I have never before been asked by a physician: "What do you think happened?"
I explained that I thought Andreas's brain had reset itself.
He then asked, "Do you say that out of intuition or knowledge?"
I answered that my response was a little bit of both. I had read about the brain resetting itself, and I felt that this is what happened with Andreas.
Dr. Philips went on to talk about how the phenomenon of the brain resetting itself was documented in the literature. Dr. Phillips also did not think that Andreas had cerebral palsy because he did not experience the preconditions that usually go along with the diagnosis. He looked at Andreas's smiling face and suggested that he may have Angelman syndrome. AS is a genetic disorder, and smiling is one of the characteristics of the disorder. Subsequently, I had Andreas genetically tested for Angelman and the results were negative.
I told Andreas's therapists about the possibility of the diagnosis of AS, and they immediately dismissed it. Children with Angelman syndrome do smile a lot, which Andreas does, but their smiles are frozen and not in response to situations. Andreas's smiles, the therapists commented, are appropriate reactions to situations. His smile is not frozen.
I do not fault Dr. Phillips for getting it wrong. He was basing his diagnosis on one visit, and at least he was entertaining other possibilities besides the catch-all cerebral palsy. Thankfully, Andreas has not had another seizure since then, and I continue to see Dr. Phillips as someone I trust. I trust him because he is one of a handful of doctors who listens to me.
Disconnected from the Parent in the Hospital Setting
My experience with Dr. Phillips stands out because it was the only time that a physician asked my opinion. Unfortunately, not all of our experiences with neurologists were as positive. At the NICU, we crossed paths with Dr. Wellby. I had just given birth to twins via a caesarean section. I would leave one son at home with our nanny, and I would commute to Manhattan every day to be with Andreas. I would arrive in the morning, take my station in the rocking chair by his isolette, and rock him. One day, the nurse told me that Dr. Wellby was on the phone and wanted to talk to me. Dr. Wellby informed me that he wanted to perform a second spinal tap on Andreas. I told him that I did not know if I would approve a second spinal tap, since they already performed one and found nothing. I asked him why he didn't do a more comprehensive test during the first procedure. Dr. Wellby responded, "I am the doctor, and I will do what I think is necessary. There are other hospitals with which I am affiliated where I do not need parental consent to perform tests on babies. I cannot test for everything under the sun with one test." So much for bedside manner.
Dr. Wellby did the second spinal tap and found nothing.
I know that I'm on shaky ground here. Doctors need to do procedures that the layperson may not understand or the parent may question the efficacy of. I do think that the doctor had a responsibility to teach me in that moment. This was an extremely difficult time for me, and Dr. Wellby, because of how he chose to speak to me, made it worse.
Dr. Wellby also told me that pain for a newborn is not the same as pain for an adult. He was suggesting that babies do not feel pain as acutely as adults. My common sense tells me that newborns experience pain more acutely because their nervous systems are immature. This point of view is articulated by Dr. Ricardo Carbajal, professor of pediatrics and chief of the National Center of Resources to Fight Pain at Children's Hospital Armand Trousseau in Paris, France. Dr. Carbajal states that neonates (babies from one to four weeks old) are more sensitive to pain, and prolonged exposure to pain may alter the way their brains function (Gordon 2008).
We visited Dr. Wellby one more time after Andreas was released from the hospital. I was instructed to follow up with him after release. During the visit, he exhibited the same bedside manner as he had in the hospital, and his office was filthy. We never saw him again.
Andreas was placed on anticonvulsive medications for the first year of his life. We saw another neurologist, Dr. Grains, during this time so that his medications could be monitored. Seeing this doctor was benign-not particularly helpful but not caustic like our experience with Dr. Wellby.
After Andreas had remained seizure free and we had not seen Dr. Grains for some time, his pediatrician suggested that he see a neurologist regularly. We had not sought out another neurologist after Andreas came off the anticonvulsants because I did not see the purpose. Our pediatrician recommended that we see Dr. Spencer, so I scheduled an appointment. Dr. Spencer was congenial and listened well. I asked him directly what value he brought to us for Andreas's overall care. He told me that he could let us know of advances in research. This proved not to be the case. I called Dr. Spencer with questions about a research finding I had heard about and wondered if it could apply to Andreas. He said that he would look into it and call me back. He never did. The medical culture works in such a way that it does not acknowledge its own gaps in knowledge (like alternative methods to traditional health care) and sometimes there is no follow-up in the areas of expertise that physicians claim as their own (as in this case regarding the research). This experience with Dr. Grains is noteworthy because, while the medical culture maintains that the doctor is the only one who knows, the doctor is at times not very willing to share his or her expertise with a layperson.
After our visit, Dr. Spencer sent a report addressed to Andreas's pediatrician, which reiterated Andreas's story that I told him in his office. Every doctor who subsequently received that report expressed how thorough the report was. I provided the details of the report. Dr. Spencer was a good note taker. For this service, he charged six hundred dollars. Doctors frequently congratulate each other on their sole accomplishments without any hint of collaborative effort. In this case, I paid to have my own words validated. The doctor presented these words as if they were his own. In fact, my name is conspicuously absent from the report. The important point here is not that my ego suffered but that the medical culture only wants to accept as valid information or knowledge that comes from other professionals within the health care system.
Chapter TwoThe Destructive Metaphor or "Evening out the Workload"
Disconnected from Awareness of One's Words in the Doctor's Office
In order to decipher any culture, it's important to pay close attention to the culture's language, particularly its use of metaphors. Metaphors aren't just figures of speech; they're figures of thought. Metaphors take our minds to a new place. The function of a metaphor is to shift our thinking. The origin of the word metaphor is Greek; it comes from metaphorein, meaning to move from one place to another place. Here I will talk about some the metaphors I encountered before the babies were conceived. The metaphors I will speak about come from a doctor working in the field of in vitro fertilization (IVF).
My husband and I tried to conceive for a long time. We were married for twenty-two years before the boys were born. When I was in my thirties, I discovered that I had a condition called endometriosis-residual menstrual blood that does not get eliminated and instead can attach to any organ within the body. The first infertility doctor we consulted, Dr. Isak, suggested that pregnancy would be a way to stave off the endometrioma (the mass attached to an ovary) from growing back after surgery. I had come to Dr. Isak because the doctor I was seeing at the time suggested that I respond to the condition by having one of my ovaries removed. I told Dr. Isak of the doctor's recommendation. He considered her recommendation outdated but he framed it this way: "She would not have suggested removing the ovary. You must have misunderstood." He later discussed it with my doctor, and he simply said that he found her position unbelievable. I do not think that the experience caused Dr. Isak to reexamine his immediate reaction and interpretation. When he had heard a prognosis with which he disagreed, he immediately thought that the patient must have gotten it wrong. He reacted this way, I think, because he is working under the cultural assumption that the doctor is the only one who knows. When confronted with a doctor potentially getting it wrong, he attributes it to a lack of understanding on the part of the patient.
We went through two in vitro fertilization cycles with Dr. Isak with no luck. We took a break from the drugs and doctors. A friend of mine suggested that we consult with another in vitro fertilization doctor. I took her advice and made an appointment with Dr. Rosa.
When we visited Dr. Rosa's office for the first time, business was very good.
The waiting room was full of couples about our ages who were trying hard to give each other the courtesy of anonymity in a public place. The waiting room was spacious and attractive. The walls were covered by an artist whose paintings we also owned. Eng Tay is a Malaysian artist whose subjects are frequently couples and families.
My treatment by Dr. Rosa did not match the warm tones of the Eng Tay paintings. We saw Dr. Rosa enter the office and, from behind, I noticed a rolled-up New York Post sticking out of the back pocket of his pants. It is a small detail, but I remember noticing it. The newspaper is a sensational rag, the type with ridiculous headlines that you glance at while waiting to check out at the supermarket.
The IVF protocol is not for the faint of heart-for either member of the couple. There are the daily injections either self-administered or given by the partner, the side effects of the infertility drugs, and frequent doctor visits for monitoring. All of the difficulties are manageable, as long as you have the right kind of doctor. I was not so lucky.
I was trying to time my treatments so that the egg transfer would take place when was I was off from school. When undergoing IVF treatment, it is usual to begin hormone injections and, when the time is right, the eggs are extracted and fertilized. The fertilized eggs are then placed back into the woman's body. I had begun the hormone injections under the care of Dr. Rosa. One day, I received a call from his nurse telling me that Dr. Rosa wanted me to stay with the injections of Luperan-a drug I'd been taking since a previous surgery for endometriosis-for longer than I expected. I knew from previous experience that Luperan places the body into a false state of menopause where no eggs are produced. Only this time, I knew that there was no medical reason for staying on the drug. My hunch was that the doctor was suggesting this because of his convenience and schedule.
Excerpted from What Do the Doctors Say? by Janet Farrell Leontiou Copyright © 2010 by Janet Farrell Leontiou, Ph.D.. Excerpted by permission.
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Table of Contents
Chapter 1 The Language of Self-importance or "The Is Have It"....................1
Chapter 2 The Destructive Metaphor or "Evening out the Workload"....................9
Chapter 3 The Use and Abuse of Labels or "The Blame Game"....................19
Chapter 4 Acting Unilaterally or "Why Wasn't I Told?"....................33
Chapter 5 Constructing Mom as Obstacle or "Mother Refuses"....................40
Chapter 6 The Language of Contradiction or "Catch-22"....................49
Chapter 7 The Language of Ambiguity or "Deception by Ambiguity"....................61
Chapter 8 Thoughtless Language or "Thought and Action Have Parted Company"....................67
Chapter 9 The Language of the Self-contained System or "The Locked Box"....................77
Chapter 10 The Language of Condescension or "Professional Bullying"....................81
Chapter 11 The Language of Generalization or "Kids Like These ..."....................84
Chapter 12 The Language of Passive Aggression or "I Really Do Not Want to Treat This Child"....................91