A article on female genital pain got me thinking about one of my pet peeves in medicine – blaming the victim.
The condition – vulvodynia - was often blamed on the woman, as in saying “it’s a fear of sex,” “it’s in your head,” or “it’s classical hysteria.” Now it turns out that identifiable, but subtle, anatomical factors appear to cause it. Treatment has improved. Blame is diminishing.
I first heard clinical teachers say things like “the patient failed chemotherapy so we decided to try…” when I was in medical school. The people saying this were typically devoted caretakers. The implication that the treatment didn’t work because the patient “failed” was rooted in health jargon, not their hearts.
But the “patient failed” phrase isn’t just a piece of sloppy grammar. It shows something about the culture of health care, at least in the U.S.
The good thing the phrase reflects is just how responsible caretakers feel for patients. If the treatment doesn’t work we tend to feel guilty, even when we’ve done the best that can be done.
The bad thing the phrase reflects is our collective cowardice. Instead of acknowledging the sad fact that medicine, while powerful, is limited, we blame the patient. Medicine didn’t fail. The patient did.
Looking into what has been written about blaming the victim I came upon this moving 2004 exchange in The Oncologist:
TO THE EDITOR:
As a lung cancer patient and advocate, I have been enormously heartened the past few months with the recent discovery of the epidermal growth factor receptor (EGFR) mutation and its immediate and long-term implications for improved treatment and extended survival for people with lung and other cancers.
In reading about the promise and potential of this new finding in Dr. Bruce Chabner’s editorial, "The Miracle of Iressa" [1], I was jolted from my excitement by one particular phrase. Dr. Chabner stated that "...patients will continue to receive Iressa when they fail chemotherapy." When they fail chemotherapy? Have the patients really "failed" when chemotherapy drugs do not work? Of course they haven’t. So why use a phrase that implies blame?
Dr. Chabner, whom I know to be an excellent and sensitive oncologist, is far from alone in expressing the failure of cancer treatment in a less than patient-friendly way. This unfortunate convention is used in the medical literature, at professional conferences, and not surprisingly, in the clinic. It is common for oncologists to tell patients that they "failed drug X." By telling patients they failed to respond to treatment, doctors may increase the guilt that many patients already struggle with as a result of their cancer diagnoses. For others, like me, it becomes an annoying refrain. At minimum, it puts emotional distance between doctor and patient and undermines the doctor-patient relationship. Just imagine under the same circumstances if the patient said to the doctor, "You failed to give me the right drug to treat my cancer." The question isn’t who failed, but what failed.
I ask Dr. Chabner and The Oncologist readers to be mindful of the language used when discussing the failure of therapies in cancer patients. Something as simple as, "Drug X didn’t work for you, maybe this one will," is one example. There are numerous ways to express the failure of cancer treatment without failing the patient, too.Sincerely,
Karen Parles, MLS
Editor, www.LungCancerOnline.org
Executive Director, Lung Cancer Online Foundation
FROM THE EDITOR:
Our reader, Karen Parles, points out an important, and unfortunate, mistaken use of the word "failure" in my recent editorial, describing a patient’s lack of response to Iressa therapy [1]. The failure of treatment is not the patient’s fault in any regard. The fault lies with the current state of science, and our understanding of the disease. The convenient phrase "failure," so often used in our society to describe an unhappy outcome beyond the control of the individual, has no place in the context of unsuccessful treatment of a disease such as cancer. I apologize for myself and my colleagues, who so often confuse outcome with intent, and I thank Karen Parles for raising our consciousness to the all-important use and impact of our words.
I assure her that I have expunged "that phrase" from my vernacular ... and I urge my colleagues to do likewise.
Bruce Chabner, M.D.
Editor-in-Chief, The Oncologist
Clinical Director, Massachusetts General Hospital Cancer Center.
Hats off to Dr. Chabner! I hope our colleagues follow the example he's set.
The condition – vulvodynia - was often blamed on the woman, as in saying “it’s a fear of sex,” “it’s in your head,” or “it’s classical hysteria.” Now it turns out that identifiable, but subtle, anatomical factors appear to cause it. Treatment has improved. Blame is diminishing.
I first heard clinical teachers say things like “the patient failed chemotherapy so we decided to try…” when I was in medical school. The people saying this were typically devoted caretakers. The implication that the treatment didn’t work because the patient “failed” was rooted in health jargon, not their hearts.
But the “patient failed” phrase isn’t just a piece of sloppy grammar. It shows something about the culture of health care, at least in the U.S.
The good thing the phrase reflects is just how responsible caretakers feel for patients. If the treatment doesn’t work we tend to feel guilty, even when we’ve done the best that can be done.
The bad thing the phrase reflects is our collective cowardice. Instead of acknowledging the sad fact that medicine, while powerful, is limited, we blame the patient. Medicine didn’t fail. The patient did.
Looking into what has been written about blaming the victim I came upon this moving 2004 exchange in The Oncologist:
TO THE EDITOR:
As a lung cancer patient and advocate, I have been enormously heartened the past few months with the recent discovery of the epidermal growth factor receptor (EGFR) mutation and its immediate and long-term implications for improved treatment and extended survival for people with lung and other cancers.
In reading about the promise and potential of this new finding in Dr. Bruce Chabner’s editorial, "The Miracle of Iressa" [1], I was jolted from my excitement by one particular phrase. Dr. Chabner stated that "...patients will continue to receive Iressa when they fail chemotherapy." When they fail chemotherapy? Have the patients really "failed" when chemotherapy drugs do not work? Of course they haven’t. So why use a phrase that implies blame?
Dr. Chabner, whom I know to be an excellent and sensitive oncologist, is far from alone in expressing the failure of cancer treatment in a less than patient-friendly way. This unfortunate convention is used in the medical literature, at professional conferences, and not surprisingly, in the clinic. It is common for oncologists to tell patients that they "failed drug X." By telling patients they failed to respond to treatment, doctors may increase the guilt that many patients already struggle with as a result of their cancer diagnoses. For others, like me, it becomes an annoying refrain. At minimum, it puts emotional distance between doctor and patient and undermines the doctor-patient relationship. Just imagine under the same circumstances if the patient said to the doctor, "You failed to give me the right drug to treat my cancer." The question isn’t who failed, but what failed.
I ask Dr. Chabner and The Oncologist readers to be mindful of the language used when discussing the failure of therapies in cancer patients. Something as simple as, "Drug X didn’t work for you, maybe this one will," is one example. There are numerous ways to express the failure of cancer treatment without failing the patient, too.Sincerely,
Karen Parles, MLS
Editor, www.LungCancerOnline.org
Executive Director, Lung Cancer Online Foundation
FROM THE EDITOR:
Our reader, Karen Parles, points out an important, and unfortunate, mistaken use of the word "failure" in my recent editorial, describing a patient’s lack of response to Iressa therapy [1]. The failure of treatment is not the patient’s fault in any regard. The fault lies with the current state of science, and our understanding of the disease. The convenient phrase "failure," so often used in our society to describe an unhappy outcome beyond the control of the individual, has no place in the context of unsuccessful treatment of a disease such as cancer. I apologize for myself and my colleagues, who so often confuse outcome with intent, and I thank Karen Parles for raising our consciousness to the all-important use and impact of our words.
I assure her that I have expunged "that phrase" from my vernacular ... and I urge my colleagues to do likewise.
Bruce Chabner, M.D.
Editor-in-Chief, The Oncologist
Clinical Director, Massachusetts General Hospital Cancer Center.
Hats off to Dr. Chabner! I hope our colleagues follow the example he's set.
2 comments:
I believe the assignment of responsibility has deep, but often poorly recognized implications for patient care. There is some evidence that clinicians who hold the patient responsible for the clinical problem have more difficulty forming empathetic relations with the patient. However, even more telling is the way in which we equate responsibility with empathetic feeling in everyday speech. If I ask a companion how they feel about the situation of a mutual friend and the response is, “He brought it on himself,” I will understand clearly, how my companion feels about our mutual friend – although no feelings have been mentioned.
This results in an even more insidious problem. There can be an inclination toward mitigating a patient’s real responsibility for unhealthy behaviors to allow ourselves, as caring clinicians, more access to empathetic feelings. When this happens, the clinician may be colluding with the patient to shut off important avenues in coming to grips with unhealthy behaviors
If we take concept that clinical relations are an essential aspect of ethical treatment seriously, then clinicians need to monitor this impulse carefully. The potential harm of the impulse to allow judgments to affect our clinical relationships is magnified by the nature of current practice. Much of the morbidity and mortality in the US is due to poor health behaviors. Mokdad et al. (2004) report that in 2000 tobacco, poor diet and exercise, and alcohol, were the top three causes of death in 2000 accounting for 38% of deaths.
Mokdad, A., Marks, S., Stroup, D. & Gerberding, J. (2004). Actual Causes of Death in the United States, 2000. JAMA, 291(10), 1238-1245.
Hello Douglas -
Thank you for this very thoughtful comment. I agree completely with your analysis of the implications and complexities of assigning responsibility.
In my practice I learned most about this area from my substance abuse specialist colleagues, my patients with drug and alcohol problems, and from attending a number of AA meetings. As I understand it, AA starts with acceptance of "non-responsibility" (Step 1 - "we admitted we were powerless over alcohol") and gradually works to take on progressively more responsibility (Step 12 - "we tried to carry this message to alcoholics, and to practice these principles in all our affairs"). Although the "alcoholism is a disease" model explicitly precludes blaming the person with alcoholism, AA aphorisms emphasize responsible activism, as in "reach for the telephone, not for the bottle."
Your point about how blame can impede empathy is VERY important and wise. In that domain I've found the teaching - "let he who is without sin cast the first stone" - especially useful.
Best
Jim
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