The narrative approach to bioethics

19 02 2012

Please find a new paper of Dr. Einat Avrahami entitled “Positive Wrongdoings: Reading Doctors’ Narratives on Ordinary Ethics“.

I would like to thank Dr. Avrahami for her permission to share this interesting article!

Here is a quote of one of the Doctors’ testimonies mentioned in this important paper:

Ethics / By Yossi Kuchnir, M.D.

I hate my voice mail. All the patients I don’t get to examine. All of those who want to come without an appointment or have me leave them referrals or prescriptions or explanations. All the justified and less justified demands, the disappointed sighs on my pre-recorded message that I will be absent for a day or two. I hate my voice mail. On that morning, among the twenty-four messages, I had three messages from the same woman—not even a patient of mine but the mother of a patient. She must see me urgently about her son. Even before I managed to return the call, my eyes met hers on opening my door to invite the next patient in. She and her husband nervously stormed into my examination room. “You must give us some explanations about his disease; we’re sick with worry.” They handed me some test results with trembling hands.

I remembered her from casual encounters when I filled in for her regular physician, monitoring tests for her oncological follow-up after treatment of a rare tumor she was diagnosed with. She was well again. But now, the fear in her eyes had returned. Now the son. “So where is he?” I asked. After all, he is not a child; he is thirty. “He couldn’t get here, and asked that you explain the test results to us and tell us where to be referred,” she quickly mouthed. Torn between my professional duty and my wish to restore to her some peace of mind, I found an outlet in looking at the test results—a document from the pathologic laboratory of the hospital, describing glandular gastric tissue from the greater curvature showing multiple inflammatory cells and a positive test for Helicobacter Pylori. Just an infection.

I never attended a “Breaking Good News” course, but I smiled and said, “I can’t specify because your son isn’t here, but will only say this isn’t a dangerous situation. It’s an infection; it’s not cancer.” Moved, the couple went out of my room, leaving me with turbulent feelings. Could I have behaved differently? The next day, there were repeated messages on the voice mail, with increasing urgency. A thirty-year-old child. Looking for me. Let him look. I postponed the conversation, but then the notes started to arrive, the secretaries knocking on my door, asking that I rescue them from the raging bull and return the call already. I went out of the room to call, since my outside line was blocked for reasons of economy. Get on with it, I thought. In a few minutes I could put this call behind me. “How dare you?” he starts without a greeting. “How dare you give medical information about me to my parents! I’ll file a complaint about you to the medical association. I can even sue you!” His rage seeps through the holes in the speaking tube. You’re right, I whisper and remember the chief’s office, the internal medicine ward at another hospital, following an especially hideous night on call with unsuccessful resuscitations. You’re right, she had quietly answered the complaints of aggressively hurting relatives, upon which a big tape recorder had emerged from one relative’s bag. “We’ve recorded you!” the relative triumphantly cried, on the way to filing a complaint or seeking media exposure . . . . “But,” I excused myself, “your parents said you asked them to..” “No! They broke into my room and found the test results on my desk!”

I realize I’m the scapegoat in his belated revolt against clasping, suffocating parents. Yet, he is right. “You let me down!” he says. “And I chose you. And now before we part forever, since I know how hard it is to find a good physician, I want you to recommend another family doctor.” Actually stabbing a knife in my guts and twisting it. Strange, I think, that the patient leaving you still depends on you to recommend another good doctor. And I can think of only one character. So I recommend a colleague of mine, a specialist in medical ethics.”

Disability Studies

19 02 2012

Following my previous post I wish to present a more detailed definition of disability studies and to share some links of basic papers in this topic.  I would like to thank Dr. Sagit Mor that send me some of these materials.

First, here is the way the Center on Human Policy at Syracuse University, NY, define disability studies. This center is one of the only Academic institutes that have a specific program in Disability studies.

“Disability Studies refers generally to the examination of disability as a social, cultural, and political phenomenon. In contrast to clinical, medical, or therapeutic perspectives on disability, Disability Studies focuses on how disability is defined and represented in society. It rejects the perception of disability as a functional impairment that limits a person’s activities. From this perspective, disability is not a characteristic that exists in the person or a problem of the person that must be “fixed” or “cured.” Instead, disability is a construct that finds its meaning within a social and cultural context.
Disability Studies is a vibrant and diverse area of academic inquiry. First, It is interdisciplinary and multi-disciplinary. No single academic discipline can place a claim on Disability Studies. Rather, the field is informed by scholarship from such different disciplines as history, sociology, literature, political science, law, policy studies, economics, cultural studies, anthropology, geography, philosophy, theology, gender studies, communications and media studies, architecture, and the arts.
Second, Disability Studies includes a diverse group of people. People who are blind or deaf, or who use wheelchairs, have chronic pain, or learn at a slower pace than other people, and so on have vastly different experiences and perspectives. Yet they share in common society’s definition of them as disabled, with consequences for how they are viewed and treated by the majority which is presumed to be nondisabled.
Finally, defining what Disability Studies is may also be informed by what it is not. It is not medicine, rehabilitation, special education, physical or occupational therapy, and professions oriented toward the cure, prevention, or treatment of disabilities. Although Disability Studies scholars generally subscribe to the minority group model of disability — the view that the status of people as a minority shapes their experiences in society — they agree on little else. For example, some Disability Studies scholars view disability in terms of culture and identity, while others see disability as a label and a social construct. Some Disability Studies Scholars use different language to refer to the people at the center of inquiry in Disability Studies. Disabled person is used to draw attention to the centrality of disability in individual identity; person with a disability or “people first language” conveys the idea that having a disability is secondary to a person’s identity as a human being; person labeled as disabled (mentally retarded, mentally ill, and so on) focuses on how disability is a socially constructed definition imposed on people who may or may not agree to this characterization. A deaf person and Deaf person mean very different things, with the latter emphasizing membership in a culture defined linguistically”.

For more information, check out these great papers:

What is Disability studies? By Simi Linton

The social model of disability: An outdated ideology? by Torn Shakespeare and Nicholas Watson 

Employment of people with disability in light of the disability studies approach by Sagit Mor (In Hebrew)