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09-10-2006, 09:17 AM
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I received this well written article from the NMSS via email a few days ago. It is on their website and is dated June 30, 2006. I'm taking a copy to my PCP this week when I see her.
BETTER COMMUNICATION NEEDED BETWEEN PHYSICIANS AND PATIENTS WITH DISABILITIES, SAYS SOCIETY GRANTEE Some 54 million Americans live with some type of disability, including many people with multiple sclerosis. Therefore, virtually all physicians should expect to see people with disabilities in their practices. However, although these physicians are well educated in the underlying causes of disabilities, many receive little training in addressing the practical difficulties experienced by people with disabilities in their daily lives. A perspective by National MS Society grantee Lisa M. Iezzoni, MD (Harvard Medical School, Boston) addresses this issue in The New England Journal of Medicine (2006;355(10):976-979). Dr. Iezzoni brings a unique perspective to this editorial. She was diagnosed with MS while a busy medical student, and was discouraged by teachers from becoming a practicing physician because of her disease. Dr. Iezzoni recently completed a Society-funded research project examining issues faced by persons with MS and their families in terms of having, keeping, and utilizing insurance, and is currently funded (http://www.nationalmssociety.org/Research-Iezzoni2.asp) to explore mobility aid use by persons with MS, looking for clues about unmet equipment needs. She was recently honored as part of an exhibit developed by the National Institutes of Health celebrating women physicians who are changing the face of medicine (http://www.nlm.nih.gov/changingthefa...aphy_161.html). In the perspective, Dr. Iezzoni cites many examples of ways physicians tend to ignore their patients’ disabilities, failing to understand a patient’s need for a motorized wheelchair and providing written medication instructions to a patient who was blind. She underscores several factors that erode communication between physicians and patients with disabilities, including: · Many physicians have taken on society’s habit of marginalizing persons with disabilities, or making uninformed assumptions. “Patients may perceive this discomfort or wonder what their doctors can do anyway,” writes Dr. Iezzoni. “Disability becomes the elephant in the room — present, but unmentioned.” · Many physicians tend to “medicalize” disability and have difficulty achieving a patient-centered orientation; although diseases such as MS may produce disability, persons with long-term disabilities do not necessarily approach their disabilities as illnesses. Rather than seeking medical advice, they want advice about performing daily activities. · Many persons with disabilities believe that physicians do not appreciate the richness of their lives. “Come see us in our own environment,” urged one wheelchair user. “Doctors anticipate a much lower quality of life than we actually have.” Dr. Iezzoni notes that the extra time needed for better communication between physicians and persons with disabilities may not be covered by insurance. Also, insurance may not cover the rehabilitation or assistive technology needs of these patients. Still, she urges health care providers to keep in mind two basic rules to help build communication. “First, make no assumptions,” she writes. “Second, just ask persons with disabilities – about their needs, preferences, and lives.” Dr. Iezzoni provides further resources that physicians can use to become better informed about the needs of patients with disabilities, including the following: · The Americans with Disabilities Act (ADA) Home Page (www.ada.gov/adahom1.htm) includes information about ADA mandates and regulations, updates about ADA enforcement (including mediation activities with health care providers), and steps needed to meet ADA requirements. · World Institute on Disability, Oakland, CA (www.wid.org/publications) distributes Access to Medical Care: Adults with Physical Disabilities, a 22-minute video and training curriculum about caring for persons with mobility and other impairments in outpatient settings. · Kaiser Permanente National Diversity Department, Oakland, CA (National Diversity Hotline, 510-271-6663) provides A Provider’s Handbook on Culturally Competent Care: Individuals with Disabilities, an 87-page handbook covering cultural perspectives, communication barriers, access to care, risk factors, and clinical concerns such as pain, mental health, and sexuality. The National MS Society’s Professional Resource Center provides resources for health care providers to help them deal with the practical issues faced by people with MS and disabilities. Visit the PRC online at http://www.nationalmssociety.org/prc.asp, or call 1-866-MS-TREAT. -- Research and Clinical Programs Department |
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