The Tyranny of Diagnosis
By PAULINE W. CHEN
21 sept 2008--Not long ago, while surfing online for one disease, I got sidetracked by another: cryptogenic cirrhosis.
I have cared for patients with cryptogenic cirrhosis. It is a common cause of liver-related illness and death in the United States, and symptoms can range from jaundice, bleeding and confusion to life-threatening hemorrhage, coma and death.
The cause of the disease, as the name implies (from the Greek “krypt,” or hidden, and “genesis,” or origin), has long been unknown. Every one of my patients with cryptogenic cirrhosis has heard the same thing from their doctors, including myself: “We have no idea why you are so sick.”
For these patients, cryptogenic cirrhosis is not a diagnosis but a non-diagnosis.
Non-diagnoses like cryptogenic cirrhosis pose particular challenges for doctors. While I feel comfortable predicting the post-transplant course and clinical reactions of patients with, for example, hepatitis or liver cancer, I can never be sure with patients who have cryptogenic cirrhosis.
And patients with non-diagnoses face even greater challenges, challenges that go beyond knowing what exactly is wrong or getting treatments.
For several years of my childhood, my mother suffered from an illness that could not be diagnosed. I have memories of her weakness, of days spent whispering so that she could sleep, and of living with the constant darkness of her bedroom and of her suffering.
Debilitated, my mother went from doctor to doctor, clinician to clinician. Despite their rapt attention to the details of her symptoms, she eventually heard from them what her surgeon-daughter would someday tell others: “We have no idea why you are so sick.”
As I read up on cyptogenic cirrhosis, I was reminded of those words again. Over the last few years, medical researchers have made tremendous advances in our understanding of this illness; it is not quite so cryptogenic anymore, and those suffering from the disease may soon have specific drugs for treatment.
That’s good news for patients, I thought as I scanned the Web sites. But also not-so-good news.
As comforting as it may be to have a real diagnosis, those diagnoses also carry powerful assumptions about our bodies and our place in the world, which can in turn influence our health care.
Charles Rosenberg, a Harvard historian, writes about the power of diagnoses in his book “Our Present Complaint: American Medicine, Then and Now” (Johns Hopkins University Press, 2007). He refers to it as the “tyranny of diagnosis.”
The concept of disease, Professor Rosenberg writes, has historically focused on the individual — a single person’s experience, story and sense of meaning.
Over the last century and a half, however, medicine has increasingly decoupled disease from the individual. This decoupling has given rise to the concept of precise, objective and quantifiable diagnoses, diagnoses so separate from patients that they seem in many ways to take on a life of their own.
Diagnoses cluster together by specific physiologic mechanisms, signs and symptoms, pathologic findings. They have insinuated themselves into health care economics as DRG’s, or Diagnosis-Related Groups, which drive physician compensation. They have inspired whole subspecialty training programs and huge advances in how we understand and treat them. Think of heart failure, cancer and my own specialty, liver transplantation.
This greater understanding and improved treatment are important and good news for all, no doubt.
Yet along with these great clinical strides, diagnoses have also fomented their own cultural revolution. Diagnoses have changed the way we approach individuals.
Diagnosing a patient requires placing that single person’s narrative against the larger predetermined trajectory of a diagnosis. When the individual’s story fits into the diagnosis’s trajectory, there is some relief for all of us. We know what is wrong.
But when we know what is wrong, we sometimes stop paying such close attention to those patient experiences that seem to have little relevance to the diagnosis at hand. We focus less on the individual and more on the diagnosis.
When the diagnosis trajectory and patient picture don’t match, we are left with an “atypical,” “complicated,” “idiopathic” or “undiagnosable” case. One of the risks for these patients, in addition to prolonged physical discomfort or suffering, is that without a diagnosis, their experience may lose meaning and relevance in the eyes of others.
My mother has been well for a few decades now, though her doctors still are not entirely sure of what made her so sick years ago. But the diagnoses they have considered, and her own search for one, have influenced how others — both doctors and non-doctors — have treated and listened to her.
When my mother had no diagnosis, her family and friends, clinicians, and others at first listened intently, sifting her narratives for every possible clue. But then most of us eventually lost interest, as if her experience could not really exist if it had no name.
But each time my mother got close to the relief of having a diagnosis, many of us stopped listening, too, choosing to hear only what seemed important to the diagnosis.
That, I now fear, is the not-so-good news for people with diseases like cryptogenic cirrhosis. We seem unable to harness the power of diagnoses and give full weight to the meaning of an individual’s illness experience.
I recently asked Professor Rosenberg about the power that diagnoses have over how all of us view illness and health care. “Some people would call it progress, some people would call it reductionism, some people would call it bureaucracy,” he told me. “But it’s all of those things.”
By PAULINE W. CHEN
21 sept 2008--Not long ago, while surfing online for one disease, I got sidetracked by another: cryptogenic cirrhosis.
I have cared for patients with cryptogenic cirrhosis. It is a common cause of liver-related illness and death in the United States, and symptoms can range from jaundice, bleeding and confusion to life-threatening hemorrhage, coma and death.
The cause of the disease, as the name implies (from the Greek “krypt,” or hidden, and “genesis,” or origin), has long been unknown. Every one of my patients with cryptogenic cirrhosis has heard the same thing from their doctors, including myself: “We have no idea why you are so sick.”
For these patients, cryptogenic cirrhosis is not a diagnosis but a non-diagnosis.
Non-diagnoses like cryptogenic cirrhosis pose particular challenges for doctors. While I feel comfortable predicting the post-transplant course and clinical reactions of patients with, for example, hepatitis or liver cancer, I can never be sure with patients who have cryptogenic cirrhosis.
And patients with non-diagnoses face even greater challenges, challenges that go beyond knowing what exactly is wrong or getting treatments.
For several years of my childhood, my mother suffered from an illness that could not be diagnosed. I have memories of her weakness, of days spent whispering so that she could sleep, and of living with the constant darkness of her bedroom and of her suffering.
Debilitated, my mother went from doctor to doctor, clinician to clinician. Despite their rapt attention to the details of her symptoms, she eventually heard from them what her surgeon-daughter would someday tell others: “We have no idea why you are so sick.”
As I read up on cyptogenic cirrhosis, I was reminded of those words again. Over the last few years, medical researchers have made tremendous advances in our understanding of this illness; it is not quite so cryptogenic anymore, and those suffering from the disease may soon have specific drugs for treatment.
That’s good news for patients, I thought as I scanned the Web sites. But also not-so-good news.
As comforting as it may be to have a real diagnosis, those diagnoses also carry powerful assumptions about our bodies and our place in the world, which can in turn influence our health care.
Charles Rosenberg, a Harvard historian, writes about the power of diagnoses in his book “Our Present Complaint: American Medicine, Then and Now” (Johns Hopkins University Press, 2007). He refers to it as the “tyranny of diagnosis.”
The concept of disease, Professor Rosenberg writes, has historically focused on the individual — a single person’s experience, story and sense of meaning.
Over the last century and a half, however, medicine has increasingly decoupled disease from the individual. This decoupling has given rise to the concept of precise, objective and quantifiable diagnoses, diagnoses so separate from patients that they seem in many ways to take on a life of their own.
Diagnoses cluster together by specific physiologic mechanisms, signs and symptoms, pathologic findings. They have insinuated themselves into health care economics as DRG’s, or Diagnosis-Related Groups, which drive physician compensation. They have inspired whole subspecialty training programs and huge advances in how we understand and treat them. Think of heart failure, cancer and my own specialty, liver transplantation.
This greater understanding and improved treatment are important and good news for all, no doubt.
Yet along with these great clinical strides, diagnoses have also fomented their own cultural revolution. Diagnoses have changed the way we approach individuals.
Diagnosing a patient requires placing that single person’s narrative against the larger predetermined trajectory of a diagnosis. When the individual’s story fits into the diagnosis’s trajectory, there is some relief for all of us. We know what is wrong.
But when we know what is wrong, we sometimes stop paying such close attention to those patient experiences that seem to have little relevance to the diagnosis at hand. We focus less on the individual and more on the diagnosis.
When the diagnosis trajectory and patient picture don’t match, we are left with an “atypical,” “complicated,” “idiopathic” or “undiagnosable” case. One of the risks for these patients, in addition to prolonged physical discomfort or suffering, is that without a diagnosis, their experience may lose meaning and relevance in the eyes of others.
My mother has been well for a few decades now, though her doctors still are not entirely sure of what made her so sick years ago. But the diagnoses they have considered, and her own search for one, have influenced how others — both doctors and non-doctors — have treated and listened to her.
When my mother had no diagnosis, her family and friends, clinicians, and others at first listened intently, sifting her narratives for every possible clue. But then most of us eventually lost interest, as if her experience could not really exist if it had no name.
But each time my mother got close to the relief of having a diagnosis, many of us stopped listening, too, choosing to hear only what seemed important to the diagnosis.
That, I now fear, is the not-so-good news for people with diseases like cryptogenic cirrhosis. We seem unable to harness the power of diagnoses and give full weight to the meaning of an individual’s illness experience.
I recently asked Professor Rosenberg about the power that diagnoses have over how all of us view illness and health care. “Some people would call it progress, some people would call it reductionism, some people would call it bureaucracy,” he told me. “But it’s all of those things.”
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