In Reporting Symptoms, Don’t Patients Know Best?
The article, by Denise Graves, began with a personal account of a drug she was given to treat pain from an injury. A few days later, she woke up with a huge red blister on her tongue and immediately stopped the medication. Her doctor pooh-poohed the blister, writing it off to coincidence.
Later on the drug, Bextra, was taken off the market in the US. Amongst other things, Bextra was linked to the sometimes deadly Stevens-Johnson syndrome, which can cause mouth blisters. Ms Graves was quick to say that maybe the drug did not cause the blisters, but “I never understood why my doctor was so quick to dismiss it.”
Is this resonating with you? I thought so.
Ms Graves cites a recent article by oncologist Ethan Basch in the New England Journal of Medicine that argues that doctors need to pay more attention to patients. According to her account:
Direct reports from patients are rarely used during drug approval or in clinical trials, Dr. Basch says. If patients’ comments are sought at all, they are usually filtered through doctors and nurses, who write their own impressions of what the patients are feeling.
Typically, the clinicians downgrade the severity of the patient’s symptoms, often writing us off as whiners and complainers. Sometimes, “the downgrading may reflect wishful thinking by doctors, who may think that a certain drug will help patients and don’t want to take them off it.”
I’ve written a lot on this kind of stuff, and it’s worth quoting at length from my inaugural blog piece here at Knowledge is Necessity, from late Dec, 2008:
Early in 2008, in preparing for a grand rounds lecture I was to deliver to a psychiatric hospital in Princeton, I came across a 2006 study published in the American Journal of Psychiatry, which is put out by the American Psychiatric Association. The study concerned bipolar patients on Zyprexa, and was designed and written by Eli Lilly, which manufactures the drug.
The article listed Mauricio Tohen MD, DrPH as the lead author of the study. Dr Tohen is virtually unique in psychiatry in that he is affiliated with Harvard and Mass General Hospital AND is employed by Eli Lilly. In addition to Dr Tohen, the article listed eight other authors. Three of the names were instantly recognizable as prominent academic thought leaders.
According to the abstract of the study:
"Compared to placebo, olanzapine delays relapse into subsequent mood episodes in bipolar I disorder patients who responded to open-label acute treatment with olanzapine for a manic or mixed episode."
But the study data, not mentioned in the abstract, told a far different story. In fact, eighty percent of the patients in the study stopped taking their Zyprexa.
When I raised this to my audience of clinicians in my talk, I asked if anyone thought this was deceitful. All hands went up. I would go further, I said. I would say it's immoral.
Zyprexa is an antipsychotic with a high side effects profile, and it's not surprising that four in five bipolar patients choose not to take it, even if they are otherwise doing well on it. As Holly Swartz MD of the University of Pittsburgh told a symposium at the 2006 APA annual meeting: "If a patient doesn’t stay on it, it doesn’t do any good, even if it works.”
My audience, incidentally, entirely clinicians, stampeded to the exits as soon as I finished my talk.
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4 comments:
You make a good point that the patient is a valid reporter of side effects, and that doctors should believe patients. I have been fortunate so far in my journey that my doctors have believed me and there have been a slew of side effects, many of them never heard of by other patients. However, I guess doctors hear a lot of weird stuff over the years and it is easy to find themselves putting their own slant to a patient's report. Too bad though, because in order for the patient to experience progress and the doctor to experience learning, the relationship must be based on trust. Maybe if our doctors stop taking stock in what we say, it is time to switch doctors. Who knows that a switch may be best for everyone involved.
Hey, Wendy. A lot of good points. To amplify on one of them you raised:
I do appreciate that doctors hear a lot of weird stuff over the years, and I know this drives both clinicians and researchers crazy. But their first job is to reassure us, show they're listening, show they're concerned. Even if they say it's probably a coincidence or merely a transient effect, they need to act as if a key dashboard indicator just lit up.
That would go a long way to establishing the trust you mention.
In my same talk, I mentioned the very different drop out rates between cancer meds and psych meds, notwithstanding the very severe side effects of cancer meds. I speculated that this may have to do with the fact that cancer docs talk to their patients differently, perhaps giving them a "light at the end of the tunnel" homily that psych patients never get.
I'll have to dig it out and run it here. So many many thanks for your contribution and for jogging my memory.
I do agree with you that doctors should listen to their patients. Patients unlike frogs and dead corpses that we experimented before are humans who are alive and fighting for their lives to be healthy; that's why they seek the advice and treatment from their doctors. However there are many cases that doctors happened to experienced with patients who are just babbling their sicknesses, probably they just need someone to listen. But personally I do believe that men and women in hospital uniforms and lab coats need to talk with their patients not just before and during their examinations but after their diagnoses.
Absolutely! Peny. Many thanks.
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