Why don’t doctors believe their patients?

I’m going to dip into a bit of auto-ethnography in this post, but I’ll pull in some outside sources too.  Bear with me! Recently, I had a health problem diagnosed that had been overlooked or dismissed for a very long time:

For decades I’ve been clumsy, awkward, prone to walking into door jambs and falling down stairs, resulting in broken bones more than once. After one of these incidents which resulted in major hip pain when I was in my mid-20s, I went to my primary care physician for treatment.  She told me I probably strained my hip flexor.  Heat, ice, rest, and it could take a while to heal.  I moved a number of times after that, switching doctors, and as the pain continued I would mention it. I was told things such as, “injuries like that can linger”, “if you lose some weight it will feel better”, and sometimes just got a cursory nod.

My pain got worse and with it, my limp and difficulty standing, walking, and climbing stairs. In my mid-30s, a new primary care physician finally deemed my complaint worthy of an x-ray.  Two quick images were taken. “Looks like a little arthritis,” she told me dismissively.  I felt like a wimp, overreacting to a “little” problem, and after a decade of trying to explain the pain I was in – which was constant and ranged from uncomfortable to excruciating, depending on how much I used my leg – I stopped talking to doctors about it.  My friends and family got used to me limping along slowly and I waved off comments with “I’ve got a bad hip” or “It’s just a little arthritis.”  I pushed myself to do as much as I could despite the pain, but when I opted out of an activity because I knew it would hurt, I felt judged by the people around me and internalized a very negative image of myself.

In the past year it has gotten dramatically worse.  Trying to keep up with the pace of walking traffic across campus felt like a burning poker inserted in my joint.  I haven’t been able to climb stairs without pulling myself up by the railing.  I can’t sleep through the night.  Because of being dismissed by doctors for so many years, I was deeply ashamed of my inability to function normally. Every time I took the elevator instead of stairs, I was filled with self-loathing for being such a lazy, overreacting weakling.  Meanwhile, I swallowed ibuprofen and acetaminophen like breath mints at a garlic festival.

Finally, at the end of a check-up with my primary care physician, I tried to express how much my hip hurt and how much mobility I had lost.  He sent me for x-rays in which my hip was in an open, frog leg position, which clearly showed the problem: I have hip dysplasia.  It’s congenital and I’ve had it all my life.  In fact, my younger sibling wore leg braces as a toddler for what was probably the same condition.  When I asked my mother about it, she said, “You always did walk funny.”

My immediate response to this bad news was to burst into tears of joy.  The pain isn’t in my head, I’m not overreacting.  I felt vindicated, plus there is now a possibility that I can get proper treatment and some relief.  Hopefully, all the self-descriptors I’ve internalized — lazy, clumsy, stubborn, weak, complaining, slow — can start to fade because of the discovery that the head of my femur doesn’t fit into my hip socket and never has.

The response I had is one I’ve seen time and time again in online forums for various conditions — not only for more controversial diagnoses like chronic fatigue syndrome, attention deficit disorder, fibromyalgia, etc, but also for many that can’t be diagnosed or confirmed by visual or manual examination or a basic blood test.  I’m a relatively assertive person, educated and comfortable with medical terminology, yet I’ve had doctors dismiss my hip pain, medication side effects, and even cancer symptoms. It must be worse for others.  What is taking place? Why is there a disconnect between what the patient is experiencing and what the doctor acts upon?

In Reporting Symptoms, Don’t Patients Know Best? is an article that appeared in the New York Times three years ago.  It summarizes a study done by an oncologist who observed that patients reported side effects from chemotherapy at a much higher rate than their doctors and nurses.  He found a number of factors from both groups that contributed to this. Doctors downgrade the symptoms, thinking that they know better or making internal comparisons to other patients. Patients don’t always tell the complete story, either. They may forget, be distracted, be confused, be embarrassed, not understand their symptoms correctly, or not have an opportunity to share what they are experiencing.

Time is an issue, as many of us get a brief glimpse of a physician as she rushes through, spending most of our medical appointment time with nurses and technicians. Newsweek had a short article on this last year, Why Your Doctor Will See You – If You’re Quick. Even with my primary care physician, who has known me and my family for a few years, I had to rush in my questions at the end of the exam. I was there for a physical and nobody asked, “Are you having any problems today?” or gave me a pause in which to offer that information. I had written my concerns on a registration form, but it became clear that nobody had read it.

A Google search for “doctor doesn’t take me seriously” brings up desperate questions from people suffering from conditions ranging from lupus to PCOS to mental illnesses and beyond. Some pages like this one have well considered, intelligent advice about how to log and describe symptoms and effectively communicate them.  Time is an issue again: not everyone can concisely speak about personal, often troubling symptoms. This piece from NPR suggests that the average patient only speaks 12 to 15 seconds before he is interrupted by his physician.  That’s not much time to relate important details of personal experience.  In many of the online pleas for help a theme is hinted at: the patient’s struggle with how to perform his symptoms, not because he wants to exaggerate them but because he’s trying to find the level that meets the doctor’s expectations and gets his attention.

The relationship between physician and patient is too important for communication to be so hard.  I’m glad I finally was heard; I started physical therapy today and things are looking up.

Registration open for Transform 2013

Each year, the Mayo Clinic Center for Innovation holds a stimulating, innovative multidisciplinary conference focused on how to transform the experience and delivery of health care.  Last year I attended the sessions at Mayo Clinic’s location in Second Life and wrote about it here. I’ve watched some of the presentations repeatedly and they always provide new ideas for my brain to chew.

Registration is now open for the 2013 Transform conference, which will be held September 8-10 in Rochester, Minnesota.  There is a $200 per person registration discount until the end of May. It’s not something I can afford to attend in person, but if you can I’ll be jealous! I’m hoping that it will be streamed in Second Life again.

In the meantime, you can access archived video from the past four years of the conference.

Surgery as prophylaxis

The world buzzed yesterday with the news that Angelina Jolie underwent a double mastectomy to greatly diminish her risk of breast cancer. I’ve been a fan for a long time, but she has my respect for the editorial she penned for the New York Times revealing her procedure. It’s intelligently written, explains the tests and procedures she went through, acknowledges other treatment options and choices, and thanks her loving family. It can be difficult to understand having such a dramatic procedure done with no sign of current illness, but as one woman who made the same choice put it, “If someone said your flight was 86% likely to come down, you wouldn’t get on that plane.”

With better knowledge about risk factors and a decrease in the cost of  genetic testing, an increasing number of people are proactively seeking surgery with no evidence of disease.  A presentation at the American College of Surgeons Annual Clinical Conference last year analyzed data on this trend from 2004-2009.  The number of hospitalizations related to genetic susceptibility increased 16-fold during that time, and prophylactic surgeries more than doubled. Insurance plans are increasingly covering these surgeries as a cancer risk reduction strategy based on family history, pre-disease symptoms, and/or genetic testing. This policy sheet from provider Priority Health is one example; it describes criteria not only for prophylactic mastectomy but also removal of the ovaries, stomach, uterus, or thyroid.

Jolie isn’t the only public figure in the news recently for surgery to reduce illness risk.  New Jersey governor Chris Christie revealed last week that he had undergone bariatric surgery in which a band is used to section off part of the stomach, reducing the quantity that can be eaten at one time. Though some have questioned his motive, Christie made this decision at age 50 and while morbidly obese, at increased risk for heart disease, stroke, some cancers, and concerns from joint problems to sleep disorders. Though the surgery isn’t a cure-all (I was told recently by a specialist in this area that more than 50% of the procedures now performed are revisions to previous surgeries; not because of a problem with the surgery, but to increase effectiveness for a patient who has stopped losing or started regaining weight), Christie has a good chance of dropping enough weight to make a significant difference in his risk of disease.

There are many issues to consider here and many frameworks that can be applied, but I’ve been thinking about identity. People who undergo major surgery as a risk reduction strategy will wear the scars and/or have lifestyle changes forever. Their lives are different because of a disease they feared, which becomes part of their embodied identity nonetheless. I think there must be an identity shift that precedes that, from seeing oneself as healthy to envisioning the body as vulnerable and imminently diseased.  The presentation mentioned above noted an association between surgery-seeking and level of anxiety about disease. I wonder if that anxiety marks an identity borderline, from a woman who sees herself as fine but at risk and chooses vigilance and lifestyle alterations, for example, and one who sees herself as having a disease that hasn’t yet surfaced and seeks surgery to remove tissues already considered unhealthy.

NIMH rejects the DSM-5

In a letter on the National Institute of Mental Health website, Director Thomas Insel announced that NIMH will be “re-orienting its research away from DSM categories.” He comments that the DSM has had reliability but not validity:

In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever. Indeed, symptom-based diagnosis, once common in other areas of medicine, has been largely replaced in the past half century as we have understood that symptoms alone rarely indicate the best choice of treatment.

I had a moment of hope, that perhaps they would be looking beyond reported symptoms to cultural and structural as well as biological factors. Instead, NIMH is launching the Research Domain Criteria (RDoc) project to develop a classification system of its own. NIMH support in the future will be for research that cuts across DSM categories and fits the assumptions of RDoC (the emphasis is mine):

  • A diagnostic approach based on the biology as well as the symptoms must not be constrained by the current DSM categories,
  • Mental disorders are biological disorders involving brain circuits that implicate specific domains of cognition, emotion, or behavior,
  • Each level of analysis needs to be understood across a dimension of function,
  • Mapping the cognitive, circuit, and genetic aspects of mental disorders will yield new and better targets for treatment

I’m not a doctor and I do believe that many illnesses that we see as “mental disorders” have a basis in chemical imbalances or biological disease. However, this sort of institutional bioreductionism worries me. It seems like a quest for magic bullet solutions rather than an understanding of the complex factors inside and outside the patient that contribute to what he or she is experiencing.

Viability at 23 weeks 6 days

New chances accompany new moral dilemmas when technology is applied to human reproduction.  Don’t miss this thought-provoking podcast from Radiolab:

Technology has had a profound effect on how we get pregnant, give birth, and think about life and death. The decision to become parents was not an easy one for Kelley and Tom. Even after they sorted out their relationship issues and hopes for the future, getting pregnant wasn’t easy. But, thanks to a lot of technology, they found a way to a baby. Then, about halfway through the pregnancy, the trouble began. Neonatal nurse practitioner Diane Loisel describes helping Kelley and Tom make the most important decision of their lives. And Nita Farahany helps Jad and Robert understand the significance of viability, and how technology has influenced its meaning…making a difficult idea even harder to pin down. [Listen here]

(tip of my Stormy Kromer cap to the Twitter feeds of Somatosphere and AnthroRepro)

Another DSM-5 critique

DSM-5* launches on the 22nd of this month and the ripples of its drop could be tsunami-sized for some communities. We’ve written previously about DSM-5 controversy here and here.  The Wired article that we linked to was written by psychotherapist Gary Greenberg, who offers a harsh critique of the new DSM — and any DSM and psychiatry as a whole — in his new work The Book of Woe: The DSM and the Unmaking of Psychiatry. I haven’t read the book yet, but The Atlantic has an interview with Greenberg: The Real Problems with Psychiatry. It’s worth a critical read, along with the comments on the interview.

I agree with several of Greenberg’s points, perhaps the ones in which he’s most in sync with Allen Frances, but on others his approach is so antithetical to medical anthropology that I was arguing aloud as I read them. Consider his lack of distinction between illness, disease, and disorder and sentences like, “If they don’t have real diseases, they don’t belong in real medicine.” If he’s so opposed to the APA being the judge of psychiatric diagnostic criteria, I wonder whom he would appoint to be the arbiter distinguishing real from non-real diseases or even real from non-real medicine.

As I read the piece, I wondered if perhaps Greenberg was just not a good interviewee. Though other things he’s written have a cynical edge, the tone seemed off and there were inconsistencies. According to Greenberg’s website, he didn’t know that the format of the Atlantic piece was going to be Q&A with verbatim quotes, and he admits that he “said some pretty intemperate things… but only a couple are embarrassing.”  Ah, that makes more sense. I’ll have to take a look at the book to get a better understanding of his arguments.

*  The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fifth edition.

Patient dumping: from Greyhound buses to private planes

Last night’s Colbert Report did a “The Word” segment about “medical leave”. No, not when you take time off from work for illness, but what people are calling medical repatriation. I’d only known that phrase as part of the travel insurance I buy when heading out of the country, to get me home in case I fall ill or am injured. Colbert’s segment is talking about something else, less euphemistically known as patient dumping. [Watch the video.]

The first example in the video is that of two undocumented workers in Iowa who were comatose after an automobile accident. They had insurance (which is rather remarkable and kudos to the unnamed agricultural firm that employed them), but it wasn’t clear to the hospital if long-term care would be covered. So, after less than two weeks, the hospital flew the unconscious men to Mexico and put them into a hospital in Veracruz.  There’s a more complete summary from the Des Moines Register.

Fiscal responsibility is certainly important for hospitals, but patient care is supposed to be their raison d’etre.  Medical repatriation is just one example of where those two purposes conflict. Writing in The American Journal of Bioethics last year*, Mark Kuczewski proposed that medical repatriation could be ethical (legality is a separate issue) if particular conditions are met:

(1) Transfer must be able to be seen by a reasonable person as being in the patient’s best interests aside from the issue of reimbursement. (2) The hospital must exercise due diligence regarding the medical support available at the patient’s destination. (3) The patient or appropriate surrogate must give fully informed consent to being returned to another country. (Kuczewski 2012:1)

There are some excellent peer commentary essays that critique his approach as well as a response from Kuczewski. Even if we accept his initial three requirements, it seems that the Iowa case falls far short. And, that was just one case.  A recent report states that there have been more than 800 cases of attempted or successful medical repatriation from the US in the past six years.

The second example in Colbert’s piece is about a Las Vegas hospital accused of putting psychiatric patients onto Greyhound buses and sending them to other states without a support system in place at the destination. This practice came to light through a March story and a follow-up investigative report in April by The Sacramento Bee. The Nevada Department of Health and Human Services investigated and found that of 1,500 patients discharged from Rawson-Neal Psychiatric Hospital since 2008, ten had been bused off into the abyss without any support.

During the five-year period reviewed, Rawson-Neal maintained an aggressive practice of discharging patients to the Greyhound terminal in Las Vegas, sending them off, unaccompanied, with Ensure nutritional supplements and a limited supply of medications.

The second Sacramento Bee article notes that funding for mental health care in Nevada has been slashed in recent years, and that from 2009 to 2012, the number of discharged patients bused out of state from southern Nevada increased 66%. Or as Colbert puts it, “In America, we don’t turn a blind eye to the needs of our fellow man. So we need to send them someplace we can’t see them at all.”

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* Kuczewski, Mark. 2012. “Can Medical Repatriation be Ethical? Establishing Best Practices”. The American Journal of Bioethics 12(9): 1-5.

The early days of autism

Temple Grandin has a new book out this year —The Autistic Brain: Thinking Across the Spectrum — and Slate has an excerpt: The Autistic Brain: The origins of the diagnosis of autism — and the parental guilt-tripping that went along with it. It’s only a couple pages, but it’s an insightful look at how the culture and level of knowledge at the time can lead to radically different diagnoses and treatment approaches.

Not familiar with Grandin?  Here’s the first part of a mid-2000s BBC documentary about her, which was how I was first introduced to this fascinating woman:


You can watch her 2010 TED talk, “The world needs all kinds of minds” (which is also the name of a 2012 documentary about her that is available online). And if that isn’t enough, there are clips online from the HBO biopic Temple Grandin, starring Claire Danes, which won seven Emmys.

Hope vs. cost: the biotechnical embrace revisited

Earlier this month, I posted about the unnecessary suffering at the end of American lives that is sustained through what DelVecchio Good has called the “biotechnical embrace”: a mutually constructed ideology of hope between doctor and patient which justifies pushing experimental treatments, even when they are excruciating, expensive, and almost certain to be unsuccessful.  Both the article and the piece you read by DelVecchio Good hint at hospital economics (and incentives from biotech and pharma) as partial factors driving this ideology forward- this comes up peripherally in Cohen’s work on kidney transplant recipients as well.

Last year, Memorial Sloan-Kettering Cancer Center in New York, one of the premier cancer centers on earth, chose not to stock a ridiculously expensive medication used as a last-ditch treatment for advanced colorectal cancer.  This seems like an obvious decision, since the new drug, Zaltrap, works about as well as the much cheaper (but still overpriced) Avastin.  But the act of a major hospital rejecting an expensive drug is in fact astoundingly rare; so rare, in fact, that the doctors felt compelled to write an op-ed in the Times defending their decision- and pointing out the absurdity of a system in which cost is almost never a factor.

NPR has a quick overview of the issue.  I’m posting it for two reasons: first, the last few sentences, in which the doctors admit that if there had been even a tiny increase in Zaltrap’s efficacy over Avastin, they would have felt compelled to stock it.  And second, for the comment section, in which the ideology (and ethical mandate) of hope is questioned by patients, their families, and the medical staff who watch them suffer.

Who owns HeLa?

We have mentioned Henrietta Lacks a few times in class, the individual whose cells have done more than anyone else’s in the advancement of modern medicine.  The HeLa cell line, the first “immortal” cell line ever developed, has been used to develop the world’s most important vaccines and cancer medications, as well as spurring advances in gene mapping, cloning and IVF.  But all of this was done without her or her family’s consent, and her family was unaware of the cell line until 20 years after Lacks’s death.  Now HeLa has been sequenced, and her genetic information published- once again, without her family’s permission.  This is legal, but is it ethical?

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Rebecca Skloot, whose book brought the story of Henrietta Lacks to popular attention a few years ago, has written a nice editorial about just how problematic the publication of HeLa is, and how poorly the law has kept up with the implications of advancements in genomic technology.  If HeLa shows a predisposition toward Alzheimer’s, for example, this may have repercussions for the life insurance her descendants can get.