Tag Archives: medicine

Doing Harm Could Do More Good

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Debbie says:

Maya Dusenbery’s Doing Harm was in a position to be a really important book. Dusenbery’s deep research into sexism in medicine stems from her own experience being (fairly smoothly and quickly) diagnosed with an autoimmune disorder, and then learning just how lucky she was, compared to other women in her situation.

I was excited about this book, and glad to see that Huffington Post published a fairly long essay by Dusenbery summarizing some of her findings. And then I was horrified to notice that the essay, which Dusenbery describes elsewhere as an excerpt, does not address the relationship between racism and sexism (including such important stories as the perils black women face in and after pregnancy, and the terrifying story of Jahi McMath). The table of contents and index of the book are available on Amazon; looking them over, I see that Dusenbery does mention racial bias: however, she devotes fewer than 10 pages of her 300+-page book to these issues. The index entry for racial bias is far shorter than, for example, the index entry for postural orthotic tachycardia syndrome. Without in any way reducing the importance of that specific syndrome, I have to worry about a book that focuses on it to a far greater extent than intersectionality in medical bias.

From what I can glean from the Huffington Post piece and my research on Amazon, Dusenbery’s research is good and her focus on autoimmune diseases in women is valuable.

 [Since 1993, when the FDA permitted women to be included in medical research studies], the research community has largely taken ― as one advocate put it to me ― an “add women and stir” approach: Both men and women are usually included in studies, but researchers often do not actually analyze study results to uncover potential differences between the two. When it comes to pre-clinical research, male lab rats are still firmly the norm.

Dusenbery also treats some of the psychological history, starting (no surprise!) with Freud, and the range of ways medicine can dismiss [mostly] women’s symptoms:

It’s not surprising that it’s women who especially find their symptoms dismissed in this way since the typical patient with psychogenic symptoms has always been a woman. In the ’80s, researchers offered a mnemonic aid for remembering the main symptoms of somatization disorder: “Somatization Disorder Besets Ladies and Vexes Physicians.” These days, studies have estimated that up to a third of patients in primary care, and up to two-thirds of those in specialty clinics, have “medically unexplained symptoms.” And about 70 percent of them are women.

This needs additional text telling us what percentage of these women are black, or Latina. Substantial research (such as this) shows that skin color’s effect on symptom dismissal is intense and shameful. Women of color don’t only face far more roadblocks than white women in being taken seriously; they also face higher instances of some serious auto-immune diseases. In particular, systemic lupus erythematosis is known to affect black women at two to three times the rate it affects white women (and this number only takes diagnosed cases into account). However, Dusenbery’s index entries on lupus do not mention racial bias.

Trans people, by the way, merit four brief index entries, which seem to reflect no in-depth analysis whatsoever.

Judging from the quality of the Huffington Post excerpt, and Dusenbery’s well-deserved reputation, the book is probably full of excellent information, well-presented, and worth knowing. But unless everything I can determine from the excerpt, the table of contents, the reviews published on the book’s cover, and the index is all misleading me, and substantial treatment of intersectional issues is somehow present despite all the indications, Doing Harm is ultimately too flawed by privilege and bias. Anyone up for writing the book we need?

At the Will of the Body, Part 3b: Doctors as Patients

Lisa Freitag says:

Dr. Lisa Freitag is a former pediatrician in Minneapolis, Minnesota.  She wrote some guest posts for us in 2013, and we are delighted to have more of her insightful presence here. This is the second half of the third (and last) part: Part 3a is here; Part 2 is here; and Part 1 is here. Part 3b has been reposted from its original posting due to technical problems.

According to Arthur Frank, whose academic theories on the doctor-patient relationship began to crystallize in his book about his own illnesses, At the Will of the Body, doctors are not really caregivers. This seems counter-intuitive, since medicine is supposed to be the most caring of professions. However, doctors do not know how to act towards their patients as persons. Frank states “I reserve the name “caregivers” for the people who are willing to listen to ill persons and respond to their individual experience.” (48) His own doctors, he says, rarely did this, instead dealing with him merely as a malfunctioning body in need of repairs. If doctors relate only superficially with others in illness, they seem unlikely to have a template for dealing with themselves as patients either.

These misconceptions are perhaps ultimately destructive to the formation of a human relationship between doctor and patient, no matter which side of the relationship he finds himself on. This is demonstrated well in the opening chapter of Sherwin Nuland’s famous book, How We Die, where he reports his first encounter with death. The patient was a middle-aged man who died of a massive heart attack while the young Dr Nuland was examining him. Nuland goes to great lengths to convince the reader and himself that it wasn’t his fault. He does this, not by grieving at human mortality, but by transferring the blame to the patient. Nuland’s description of the dead man and the destructive life style that brought him to his early death, borders on hatred. Nuland describes the man’s “flabbiness,” his “gluttony,” his laziness at taking a sedentary desk job, and compares this “high pressure boss of large, tough men” to his own 22 year old “boyishness.” Though he admits that these were not known risk factors at the time, these are disdainful words that imply a sinful life. The man was ultimately responsible for his own demise, not because he is mortal, just as Dr Nuland is, but because he lived in wrongness.

Arthur Frank sees illness as a chance to witness the mortality which we all share. Instead of  recognizing, and perhaps mourning, their common humanity, Dr Nuland distances himself by describing the man’s shameful life-style. One can assume that Nuland himself does not do all those naughty things, and can therefor believe he himself is safe from such a death. He spends the rest of the chapter, and indeed the book, describing in detail the ways in which the body can betray its owner, always with the idea that this knowledge, applied scientifically, will prevent death. I suspect that Dr Nuland’s own death will come (came?) as quite a surprise to him.

It is far easier to blame the wrongheaded patient rather than mourn the fact of death. Indeed, we were taught in medical school that mourning is out of place. We were supposed to create an emotional distance between ourselves and our patients. This was called maintaining objectivity, and is, we understood, a necessity, if one is to be a rational scientist. As Frank has recognized in At The Will of the Body, this distancing leads to thinking of patients as merely broken engines in need of repair. The person inside is largely ignored, except as the means which medical instructions will be carried out. The person, submitting to the will of the medical system, becomes a compliant body.

So what is a doctor to do when his own body escapes control and betrays him to illness? He must resent not only the sudden possession of a now-defective body, but also struggle to find a place to shift the blame for its failure. He must either accept that, like his patients, he might be mortal, or work to forget that medicine is not infallible. At the same time, he must willingly subject himself to becoming a body in the eyes of his peers.

All of these things are in operation when I become a patient, though I have, so far, not had a fatal one. I am surprised to find myself unprotected from sickness, and feel angry because I can’t think what I might have done to deserve it. Having at times seen illness as Dr Nuland does, as a sign of weakness in others, I find it nearly impossible to forgive it in myself. At the very least, I have failed to exert proper control over my body. It doesn’t help that I know precisely what has gone wrong, what that failure might lead to, and how painful it is likely to be to attempt to correct it.

Which is why, at the six week follow-up visit after surgery to fix my broken arm–which I honestly considered skipping altogether–I was completely inappropriate. I was annoyed that I was there, reluctantly complying with an unnecessary recommendation. My fractures were healing quite well, due to hard exercise and the help of some very good physical therapists. The orthopedic surgeon seemed inordinately pleased at his success with my operation, as though he still considered my arm partly his possession.

At one point, he told me, as though imparting a special confidence to a fellow doctor, that he liked the outcome so much that he was going to use the same “surgical approach” more often. It seems that he had put the incision on my shoulder in a different spot than usual. This was because he didn’t want to bother moving my unresponsive body between the surgery on my elbow and shoulder. I managed, just barely, to avoid saying what I was thinking, which was that this seemed terribly lazy to me. He looked, briefly, a bit confused by my horrified silence. Then he relaxed. He didn’t say anything, but he might have been thinking, Oh, right! Doctors are terrible patients. There was a small, indulgent chuckle.

I guess I was supposed to display more gratefulness. Or less implied skepticism at his talents. I feel kinda bad about this, but not bad enough to come back, as he wants me to, in another six weeks, so he can further admire his handiwork.