We Can Do Better (without the R-word)

Those who know me would never accuse me of being politically correct. Besides the “N-word,” though, there is one word that crosses not just “the line” but a line that should never be crossed.  It is generally misused and incredibly offensive and insensitive. In medical school, I thought it was particularly inappropriate for future physicians to say things like, “You’re so retarded,” when they meant, “You’re so stupid.” Mentally retarded and being stupid have no connection, and we should all endeavor to break the slang connection. Or, aim higher and remove the word entirely from our vocabulary (notice I didn’t use it in that sentence!). (You can visit http://www.r-word.org to “spread the word, to end the word.”) Learning this week that the United States Congress has provided President Obama with legislation that, in essence, removes the word “retarded” from federal laws (http://wapo.st/cuRfVU) reminded me of Tim, one of my patients….

People in medical school, often those doctors whose facial landscapes are peppered with age lines and brown spots, liked to joke that they didn’t see me as jaded…yet. The joke is the “yet” part. Technically, I think these folks are wrong. When I looked up the word “jaded” after the last such encounter, I was surprised to find that “cynical” was part of the definition. Never one to cling to optimism or pessimism, I have always thought of myself as a cynical realist. More than a decade of lawyering, a dose of life’s greatest unfairness, and a few too many nights in various emergency departments have left me in that state. But, jaded? I never thought so. Being jaded has a different ring to it. It suggests apathy, disinterest and even a shade of pessimism. Jaded, I was not.

But then, my genetics lectures intervened. All of a sudden, the sun rose, the sun set and someone taught us about “normal” babies and “normal” children and all of the abnormal other kids. Abnormal? Who were they to say? We listened to information about genetic mutations and exogenous teratogenetic exposure. We talked about children in terms of their syndromes, not their names. We ignored the fact that the grotesque, naked mug shots that appear in our genetics textbook were snapshots of someone’s children, and instead learned to associate certain dysmorphological characteristics with an extra chromosome.

When we discussed options for parents who find out that their child is going to be “sick,” we were regularly reminded to counsel parents about abortion (even though we never talked about the impact of abortion). We were focusing on test results and not the magic of a child who, though not normal by medical standards (or apparently medical school standards), could be a wonderful son or daughter. I was troubled by the conversations we were having in our conferences and the paradigm of our education but said nothing, hoping instead to focus enough on remembering that only conceptuses with Trisomy 13, 18 and 21 had the potential to survive to birth, in order to pass our upcoming exam.

My weekly clinical preceptor, Dr. G., is a big guy. Consequently, when we saw patients together I was sometimes not tall enough to get an intake-form preview of our patient. Also, because of his size, I encountered our patient a full second or two later than he does. In essence, he eclipsed the view of the room and it was only when he moved to the side to introduce me that our patient was revealed.

One Tuesday, like a puppy on a short leash, I followed Dr. G. into Exam Room 5 to meet our 4:15 appointment. The list of the day’s patients indicated that Tim’s chief complaint was “swelling and pain on his hand.” When Dr. G. moved aside, I first encountered a pleasant, professionally-dressed, smiling woman standing next to the examination table. As Dr. G. moved further into the room, I met – actually just saw – Tim. Tim had all of the classic signs of Down Syndrome. Even as I shook his hand, I critically analyzed Tim. In the slow-motion-like-moment that followed, I heard nothing of the conversation between Dr. G. and Tim’s mom as information about Down Syndrome flooded my mind: more than ninety percent of live births with Down Syndrome are caused by an extra chromosome 21; Robertson translocation was possible; nuchal translucency could have been detected on an ultrasound; during the first few months of pregnancy, amniocentesis or chorionic villus sampling could have been done to the fetus that had evolved to become Tim. I was struck by the classic dysmorphology that Tim exhibited. (Truthfully, I had forgotten his name was Tim for the moment.) I wondered if he had heart problems, whether his hearing was deficient and where he fit on a spectrum of functioning. Instead of worrying about Tim’s reason for seeking care, I was caught up in the ugliness – the very failure of those lectures to remind us that when we speak of disease, illness or even difference, we are speaking about people not things – of genetics lectures. (For more information on Down Syndrome or to become an advocate, visit www.ndss.org.)

Pain brought me back into the examination room. When Dr. G. lifted his wounded hand, Tim emitted a sound that confirmed his discomfort. His mom offered a frustrated half-hearted laugh when she acknowledged that she was unaware of anything happening to Tim’s hand on her watch, that his day program did not have an explanation, and she said, “As you know, Tim can’t tell us.” Though I had surrendered initially all of my thinking ability to Tim, my thoughts were subsequently owned by his mom: Did she know that Tim would have Down Syndrome when she was pregnant? How was life for her and her family? Was it, in essence, worth it for her? For Tim? Did she feel any different about her son than I do about my daughter? (I doubted so.) Thoughts of her, and Tim, made my half hour drive home that night feel like a minute. I struggled with my initial reaction – the one that I was being trained to have: I saw Down Syndrome. I did not see Tim. And, I did not see that he was in pain. For a time, I failed him. As I continued my commute homeward, I remembered a poem that offered an antidote to the cold, uncaring genetics education. I couldn’t remember the name of the poem but the superpowers of Google’s search engine coupled with my hazy recollection that that poem included reference to Italy and Amsterdam allowed me to find it (see below, “Welcome to Holland”).

In the end, I recognized that seeing patients was an undoubtedly good place to take my own pulse and see if I was becoming jaded. I had a better idea of why those aged physicians laughed when noting that young students will one day become jaded. That jaded monster sits waiting for you in the most unlikely places. That day, I added additional items to my list of things-to-do: 1. Pick up diapers; 2. Prepare problem-based learning concept map; 3. Read about vasodilation; 4. Fight to avoid becoming jaded; and 5. Remember Tim. The moment that we forget that people are, regardless of their physical or mental challenges or gifts, just people, we fail as humans. And, I know that we can all do better. In the end, those of us who chose to use hateful verbiage like the “R-word” are the stupid ones.  As for Tim, he was certainly smart enough to teach me a great deal. 

“Welcome to Holland” by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this …

When you’re going to have a baby, it’s like planning a fabulous vacation trip … to Italy. You can buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says “Welcome to Holland.”

“Holland?!?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a new language and you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they’re all bragging about what a wonderful time they had there. And the rest of your life, you will say, “Yes that’s where I was supposed to go. That’s what I planned.”

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

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7 Responses to We Can Do Better (without the R-word)

  1. Gayle says:

    Even on the tougher days, I feel VERY blessed to have ended up in Holland!!!!

  2. Jillian Dumeer, M.D. says:

    Well said! It is all too evident that physicians tend to identify patients not by their personal characteristics, but instead by the disease process that ravages their body. I like to think that only a few short months out of medical school, I remain sensitive to these issues, at least more so than some of my superiors do. However in reading this tonight, I recall that just a few hours ago as I worked up a vascular surgery consult in the ED for bilateral lower extremity edema in a kind-eyed 92 year old man, my attending, while feeling the man’s pulses, asked him bluntly, “are you a diabetic?” In an almost reflexive manner, I realized how wrong that sounded as the words passed through my ears. A humorous thought crossed my mind as I thought that the “patient instructors” who are trained to help medical students learn how to take histories and perform physical exams would have had a field trip evaluating this particular attending. But, I must admit that at times, I, too, have referred to patients as “the thoracotomy in the unit,” or the “appy in the ED.” My identification of patients as such is not necessarily insensitive, as HIPPAA mandates that I cannot discuss my patients by name, which is the most natural of identifiers. And as an intern who spends the greatest proportion of my time manning the floors, which entails listening to complaints, holding hands, giving and receiving hugs, and dealing with some of the more human aspects of medicine, I guarantee that I can tell you more about how the lady with diverticulitis is mourning the recent loss of her husband of 60 years, the lady s/p mastectomy and immediate breast reconstruction is a teacher who is excited about her new group of students this year, and the 18 year old with appendicitis is an engineering major in college and is upset about missing a big party this weekend. Though the system may dictate that we cannot call patients by their name (and it only gets confusing and borderline unsafe when you try using initials), identifying patients by their injuries and ailments does not always mean that there is a lack of respect for the value of the individual patient. I do agree, though, that derogatory terms such as the “r” word should play no role in identifying individuals, whether they be family members, strangers encountered in a public setting, or patients who drift into our lives for a few brief moments. Thanks for helping me analyze the way I think and act towards my patients and the illnesses which plague them.

    • Although some patients prefer not to be called by their first names (especially older patients), I would think it would be preferable to say “Jen, who is s/p discectomy” rather than relying upon a disease, status, or condition as the sole identifier. I understand that it’s a challenge for you, Dr. Dumeer, and other physicians to try and speak in two “voices;” one in the presence of the patient and one outside of their hearing. (Even when you’re patient can’t hear you, though, it is likely that another patient or a family member can!) I also understand — depending upon the attending physician — that efficiency can dictate a presentation or discussion of a patient. However, I think it is critical for doctors to take a deep breath before interacting with patients and families and ensure that they remember that we are people — sometimes very scared or in a great deal of pain — who have placed our trust in your hands. Thanks so much for being a part of the conversation.

  3. arianna says:

    speechless… thank you!

  4. Dena says:

    So, knew you would tell me to “join the conversation,” so I am giving you my thoughts here rather than on he phone or email despite my skepticism of the blogging world.

    I consider myself to be a pretty sensitive person, and in fact, have a particular interest in the field of “Developmental” pediatrics (specializing in children’s development or aberration there of) that seems to bring quite a few families of children with special needs to seek me out as a provider. I’d like to think that I put a particular emphasis on equality in my professional and personal life, and I would hope that this is apparent to my patients, their families, and my own family and friends.

    So, that being said, I would like to share that I DO use the term mentally retarded in my professional practice. And, as I just did, I am not afraid to write the word out, rather than use the “r-word” terminology. Although I have not used it in common parlance with families as I can recall, I so use it as a diagnosis on orders for PT, OT, and speech services occasionally. Certainly, I use it commonly in reference to the “DMR,” (the Department of Mental Retardation) the organization that advocates for legal rights, financial assistance, and medical care, among other services, for those persons fitting the diagnosis that bears its name. To me, as a pediatrician, this term does not carry a negative connotation when used in this way, nor is it meant to. It is simply a diagnosis, like any other. It doesn’t make me treat a person or a patient in a different way.

    On my way to work this morning, I heard an interesting description of words which have somehow attracted a lot of attention of late. It was in an interview with a professor from Hopkins who was discussing the impact of words. His point was that all words have a history, and some words develop charged or negative connotations over time. In a thought provoking description that really resonated with me, he said that some words “collapse under their own history.” Perhaps, this is one of those times.

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