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.

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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.

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 robot in the white coat

The cover story of the March print edition of The Atlantic is “The Robot Will See You Now”, which explores the various ways that technology is queued to disrupt the medical establishment.  IBM’s Watson is now working through case histories from Memorial Sloan-Kettering, a step toward a much more sophisticated diagnostic and treatment recommendation tool than symptom searches in medical databases.

While I don’t undervalue the talent of an experienced doctor to perceive symptoms that may not be mentioned as complaints and put them together into a better diagnosis, I found myself nodding when one physician on Watson’s training team mentioned the problem of “anchoring bias”, in which one symptom is given priority and others are ignored or seen as unimportant.  That can be multiplied with other prejudices, such as the implicit and explicit bias against fat people that was shown in a study released a few months ago (this post from Jezebel describes the situation well), making it more difficult for members of some populations to receive a valid diagnosis.

The article also discusses the improvements in monitoring technology that are being pioneered by the enthusiasts in the quantified self movement that I’ve posted about previously.  It may soon be possible to wear a monitor that reports regularly and wirelessly to your doctor on an important statistic that is being tracked: blood pressure or heart rate, for example.  A scale or blood sugar tester could share data every time it’s used in the same way.

Potential changes in the career paths of medical workers are considered and decreased contact between doctors and patients for routine issues seems likely.  This could boost the already strong prospects for nurses and physician assistants and — as the article states — allow “everyone to practice at the top of their license.”

This article comes out the same time as a study of robot-assisted hysterectomies determined they are increasing in prevalence despite costing 100-200% more than the standard surgery.  There is little evidence of any improvement in outcome and the suggestion is that the surgery is becoming more widespread due to marketing, not only to the medical establishment but also to patients.  We’ll be wise to remember that new and high-tech doesn’t always mean it’s better for patient care, as Monty Python tried to show us decades ago:

 

Addition: For a half hour audio discussion of this topic, take a listen to Talk of the Nation with Ira Flatow from June 1, 2012.  Flatow speaks with guests Dr. Eric Topol, author of The Creative Destruction of Medicine, Dr. Reed Tuckson, head of UnitedHealth Group, and Dr. Arnold Relman, former editor-in-chief of the New England Journal of Medicine.

A surprising model for health system improvement

In the debate over how to improve health care in the US, systems in other countries are often held up as models.  You know, countries like Rwanda.

Yes, Rwanda.

A thought provoking piece yesterday on The Atlantic made that comparison, citing analysis by Dr. Paul Farmer.  From the article:

Over the last ten years, Rwanda’s health system development has led to the most dramatic improvements of health in history. Rwanda is the only country in sub-Saharan Africa on track to meet most of the Millennium Development Goals. Deaths from HIV, TB, and malaria have each dropped by roughly 80 percent over the last decade and the maternal mortality ratio dropped by 60 percent over the same period. Even as the population has increased by 35 percent since 2000, the number of annual child deaths has fallen by 63 percent. In turn, these advances bolstered Rwanda’s economic growth: GDP per person tripled to $580, and millions lifted themselves from poverty over the last decade.

One explanation for this dramatic improvement is that the genocide in Rwanda allowed for a clean slate upon which a new program could be built.  Farmer and others reject this explanation, however.  A recent report focuses more on interdepartmental coordination and central planning with health as a priority.  The article is a good summary and the BMJ research paper with Farmer as lead researcher has more details.

Learning from the patient

Ilana Panich-Linsman for The New York Times

Ilana Panich-Linsman for The New York Times

The New York Times shares the touching story of a retired nurse with terminal pancreatic cancer who made the nursing program at her alma mater an offer they couldn’t refuse: to use the final days of her life to educate their students.  The school embraced this as an opportunity to teach beyond textbooks, mannequins and short hospital rotations.  Ms. Keochareon said she wanted them to have a chance to see the situation from the patient’s point of view.

I think she gave them a wonderful gift, but I was troubled that talking to a patient about her reality was considered so extraordinary.  When I attended a nursing conference last fall, the idea of learning from the patient experience was much discussed and my explanation of medical anthropology was greeted with comments like, “That’s the sort of perspective we need!”  Perhaps the tide will start to turn.

Cancer survivors forgoing care because of cost… perhaps

Young adult cancer survivors often forgo follow up medical care, reads the headline of this article on amednews.com (via the AMA’s Twitter feed). The article goes on to cite a study in which

Researchers analyzed data from the Centers for Disease Control and Prevention’s 2009 Behavioral Risk Factor Surveillance System on adults 20 to 39. A total of 979 had been diagnosed with cancer between ages 15 and 34 and were at least five years past the date of their diagnosis. They were compared with 67,216 adults with no cancer.

Both groups had similar rates of having health insurance. But those with a history of cancer were 67% more likely to go without care because of cost.

The rest of the article goes on to talk about insurance rates, unemployment, cancer costs, and the economic hardship of the young.  I’ve scanned the research and it seems that they used self-reports from the subjects to determine why they were forgoing care.

That leads me to ask: is it likely that cost is the only reason for the 67% difference in care-seeking?  Perhaps the dominant paradigm that heath care is too expensive provides a convenient answer without digging into more complex and uncomfortable reasons.  Purely speculating, I’d wonder about emotional exhaustion of Damocles Syndrome, a feeling of invulnerability from both the level of mental maturity and having survived cancer already, resentment at time lost to illness and a desire to just move on until a symptom appears,  an avoidance of potential bad news, for the sake of themselves and loved ones, or any of countless personal or cultural reasons.

Maybe I’m completely wrong on this, but it seems like the researchers put a lot of thought into economic factors and few into human ones.  It’s not that the study is inaccurate — it reports what the subjects told them — but that the conclusions seem superficial.

Letting patients read the doctor’s notes

http://well.blogs.nytimes.com/2012/10/04/letting-patients-read-the-doctors-notes/?ref=health

For over 15 years, Americans have had the right to read and even amend their own medical records.  But very few patients are aware of this and even fewer exercise this right.  Despite physicians’ long-standing fears that such disclosure might lead to undesirable treatment-seeking behavior, a recent study in the Annals of Internal Medicine shows the opposite: better compliance when patients feel more empowered.

Applying proxemics to the healthcare experience

Margaret Alrutz is the director of strategic marketing and experience design at Nurture by Steelcase — a company that provides furniture for medical settings.  In her talk at the Mayo Center for Innovation Transform 2012 symposium, she spoke about how the technology and practices of healthcare have changed, but the spaces have not been improved.  Citing the work of anthropologist Edward T. Hall, Alrutz described the research put into product design at Nurture, which included observing medical personnel as they actually performed their duties, often awkwardly as in the photo below:

Image from Margaret Alrutz’s presentation

The core content of her talk begins at about the 3:30 mark in the video:

While Nurture’s upscale furniture addresses first world healthcare inconvenience and unpleasantness, these research concepts can be applied elsewhere and one could argue that improving staff ergonomics and comfort for visitors would lead to better patient outcomes in many situations.  I can think of several personal medical experiences where details of my surroundings made a significant impact on the level of anxiety I felt.

The Nurture website has a number of case studies which outline problems they’ve tackled and the methodology that they used to find solutions, including observation, surveys, and interviews.  That sounds awfully anthropological, doesn’t it?

Ever since Anne Fadiman’s The Spirit Catches You and You Fall Down came out in 1998, Lia Lee, the epileptic child of Hmong refugees, has been the most famous cautionary tale in America of the cultural gap between patients and their doctors.  After a short life lived almost entirely in a vegetative state, Lia Lee passed away at the end of last month.  The New York Times has a brief summary of her experience caught between two radically different understandings of her condition, and the impacts of her case on medical training and hospital policy.

Lia Lee in 1988
(c) Anne Fadiman via The New York Times