Going beyond Disease to Address Disability
http://www.100md.com
《新英格兰医药杂志》
One summer day about 10 years ago, a young woman flagged me down as I was rolling back to my hospital on my scooter wheelchair. An inpatient taking a sunshine break, she sat on a bench, intravenous pole in tow. She explained, tears brimming, that complications from diabetes made walking increasingly difficult. She was a single mother, and she could no longer get to the grocery store. She had asked her physician to prescribe a power wheelchair, but he had refused, insisting that she keep walking. Unable to meet her family's basic needs, she had bought a cheap manual wheelchair, and her 10-year-old son, barely tall enough to see over her, pushed her to the store. "How can I get a scooter like yours?" she asked.
This story, among the first told by my "rolling focus group" — strangers who ask me about living with disability — started me thinking. Although the tales are as diverse as the tellers, they have two common themes: a desire to remain active and independent, and a quest for information about options that permit educated choices for conducting daily activities and maximizing the quality of life. A lack of open, productive, informative dialogue with physicians can impede, delay, or derail these choices. This woman's doctor had a legitimate concern regarding physical activity, but she still needed groceries. Together, they might have devised solutions to meet both her health and practical needs; instead, she felt anxious and abandoned. What is the physician's role in going beyond treating disease to address disability? And how should doctors be taught to fulfill this role?
Although physicians learn volumes about treating underlying causes, many receive little training in addressing resultant disability — difficulty performing daily activities and fulfilling social roles because of physical, sensory, emotional, or cognitive impairment, often compounded by environmental barriers. Approximately 54 million Americans currently live with some type of disability.1 Medical interventions now allow many persons with clinically significant congenital conditions or impairments acquired in childhood or early adulthood to live long, productive lives. With baby boomers moving into their seventh decade, the number of persons with disabling conditions, such as impaired walking, hearing, vision, speech, or cognition, will soon skyrocket. Given the rising rates of childhood obesity, asthma, diabetes, and arthritis, disabilities may develop at younger ages. Virtually all active clinicians can expect to see persons with disabilities in their practices.
(Table)
Selected Medical School Activities Related to Patients with Disabilities.
Despite these demographics, efforts to train physicians to address disability confront substantial challenges. Chronic disability can thwart physicians' motivation to cure diseases. Some physicians see disability as outside their purview: "It's social-worker–type stuff," a general internist told me. Our society has historically marginalized persons with disabilities, and many physicians have internalized common views. "My upbringing was like everybody else's," another general internist observed. "Don't talk about it, don't stare, it's somehow hurtful." Patients may perceive this discomfort or wonder what their doctors can do anyway. Disability becomes the elephant in the room — present, but unmentioned.
Such attitudes carry consequences. In 2000, the Healthy People 2010 initiative identified Americans with disabilities as vulnerable to substandard care, asserting that erroneous assumptions about this population contribute to disparities in services.2 In a "Call to Action" issued July 26, 2005, the 15th anniversary of the Americans with Disabilities Act (ADA), the U.S. Surgeon General urged health care providers to treat persons with disabilities with dignity, as whole persons.1
(Table)
Selected Educational and Informational Resources on Disability.
One place to begin physicians' training about disability is the realm of patient–physician communication. Communication is key to achieving patient-centered care, a touchstone for improving the quality of health care.3 Care that respects patients' preferences, needs, and values has special resonance for persons with disabilities, who often find others defining and circumscribing their lives and options. A patient-centered orientation requires open communication between patients and physicians, unhampered by false assumptions about patients' abilities and aspirations. Optimal care then demands collaboration between patients and physicians, each bringing their respective expertise to decision making: physicians possess critical technical knowledge, but patients are the experts on their own lives.
Communication between physicians and persons with disabilities can falter on many levels.4 An initial barrier arises when physicians "medicalize" disability. Although diseases do produce disability, persons with long-term disabilities do not necessarily approach their conditions as illnesses. "I'm not sick," says a woman who has had multiple sclerosis for 30 years. "I just can't stand up!" Rather than seeking treatment for her disease, she wants advice about performing daily activities, perhaps with assistance, at home. "The medical community has a pathologic view of deaf people," said a deaf woman who communicates using sign language. "They don't see us as a linguistic minority. I don't identify myself as disabled." When she visited the emergency room with an injured ankle, the physician's first question was about why she was deaf.
The ADA and other laws require clinicians to communicate effectively with patients, but physicians don't always do so. For instance, they often write notes to deaf patients, not recognizing that some sign-language users may have low proficiency in English. Hospital policies required a woman to relinquish her hearing aids before surgery. "Afterward, they told me, `You took a long time to come out of anesthesia. We kept talking to you.' But I couldn't hear them!" An elderly man, hospitalized because of deep-vein thrombosis, was given written instructions along with injectable medications to self-administer at home. The nurse and pharmacist who counseled him on discharge failed to recognize that he was blind. Unable to read the instructions, he didn't take his medication.
Uninformed assumptions about persons with disabilities can erode respect and trust, the bedrock of open communication. For instance, physicians may underestimate the intelligence of persons with communication disorders, such as speech impairments related to cerebral palsy (see shaded box). "When doctors hear I have a psychiatric disability, they question my judgment on everything," said one woman. "I don't have a relationship of trust." Persons with disabilities sometimes fear that physicians may not treat acute conditions aggressively, believing that the patient's quality of life is poor anyway.
Underestimating the Intelligence of Persons with Communication Disorders.
Some persons with disabilities note that their physicians do not make basic connections between functional impairments and daily needs. "When my shoulders were hurting, my doctor told me, `Don't use your arms so much,'" reported a woman who self-propels her wheelchair. "I'm paraplegic — all I have is my arms! How can I get around without them?" Physicians may not acknowledge that people with long-term disabilities often know more about their conditions than their doctors do. Several persons with spinal cord injury reported physicians' refusal to believe that they could feel pain below the level of their injuries. One physician biopsied a leg lesion without administering local anesthetic.
Finally, many persons with disabilities believe that physicians do not appreciate the richness of their lives, leaving them feeling disrespected or degraded. Some offenses, such as speaking to sign language interpreters rather than directly to deaf patients or grabbing the arms of blind persons when escorting them to examining rooms, probably reflect poor training. Others represent basic failures of physicians to imagine full and varied lives for persons with disabilities. "Come see us in our own environment," urged one wheelchair user. "Doctors anticipate a much lower quality of life than we actually have."
Unfortunately, structural barriers within the health care system can impede complete communication and efforts to provide patient-centered care to persons with disabilities. Health insurance does not reimburse more for patients who require extra time or resources (e.g., to make communication or physical accommodations, to consider complex health care needs, or to complete disability-related paperwork). In many circumstances, physicians must enlist colleagues from other disciplines, such as rehabilitation professionals and technology experts, to address patients' concerns fully — requiring even more time to communicate and coordinate care. In addition, health insurance may not cover the long-term rehabilitation and assistive technology that patients need.
Even without extra time, training, and resources, however, two basic precepts can help to build better communication between physicians and persons with disabilities — and perhaps better care. First, make no assumptions. Second, just ask persons with disabilities — about their needs, preferences, and lives.
Source Information
Dr. Iezzoni is a professor of medicine at Harvard Medical School and Beth Israel Deaconess Medical Center, Boston.
References
Department of Health and Human Services. The Surgeon General's call to action to improve the health and wellness of persons with disabilities. Rockville, MD.: Public Health Service, 2005. (Accessed August 17, 2006, at http://www.surgeongeneral.gov/library/disabilities/calltoaction/calltoaction.pdf.)
Department of Health and Human Services. Healthy People 2010: understanding and improving health; objectives for improving health. 2nd ed. Washington, DC: Government Printing Office, November 2000.
Institute of Medicine, Committee on Quality of Health Care in America. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press, 2001.
Iezzoni LI, O'Day BL. More than ramps: a guide to improving health care quality and access for people with disabilities. New York: Oxford University Press, 2006.(Lisa I. Iezzoni, M.D.)
This story, among the first told by my "rolling focus group" — strangers who ask me about living with disability — started me thinking. Although the tales are as diverse as the tellers, they have two common themes: a desire to remain active and independent, and a quest for information about options that permit educated choices for conducting daily activities and maximizing the quality of life. A lack of open, productive, informative dialogue with physicians can impede, delay, or derail these choices. This woman's doctor had a legitimate concern regarding physical activity, but she still needed groceries. Together, they might have devised solutions to meet both her health and practical needs; instead, she felt anxious and abandoned. What is the physician's role in going beyond treating disease to address disability? And how should doctors be taught to fulfill this role?
Although physicians learn volumes about treating underlying causes, many receive little training in addressing resultant disability — difficulty performing daily activities and fulfilling social roles because of physical, sensory, emotional, or cognitive impairment, often compounded by environmental barriers. Approximately 54 million Americans currently live with some type of disability.1 Medical interventions now allow many persons with clinically significant congenital conditions or impairments acquired in childhood or early adulthood to live long, productive lives. With baby boomers moving into their seventh decade, the number of persons with disabling conditions, such as impaired walking, hearing, vision, speech, or cognition, will soon skyrocket. Given the rising rates of childhood obesity, asthma, diabetes, and arthritis, disabilities may develop at younger ages. Virtually all active clinicians can expect to see persons with disabilities in their practices.
(Table)
Selected Medical School Activities Related to Patients with Disabilities.
Despite these demographics, efforts to train physicians to address disability confront substantial challenges. Chronic disability can thwart physicians' motivation to cure diseases. Some physicians see disability as outside their purview: "It's social-worker–type stuff," a general internist told me. Our society has historically marginalized persons with disabilities, and many physicians have internalized common views. "My upbringing was like everybody else's," another general internist observed. "Don't talk about it, don't stare, it's somehow hurtful." Patients may perceive this discomfort or wonder what their doctors can do anyway. Disability becomes the elephant in the room — present, but unmentioned.
Such attitudes carry consequences. In 2000, the Healthy People 2010 initiative identified Americans with disabilities as vulnerable to substandard care, asserting that erroneous assumptions about this population contribute to disparities in services.2 In a "Call to Action" issued July 26, 2005, the 15th anniversary of the Americans with Disabilities Act (ADA), the U.S. Surgeon General urged health care providers to treat persons with disabilities with dignity, as whole persons.1
(Table)
Selected Educational and Informational Resources on Disability.
One place to begin physicians' training about disability is the realm of patient–physician communication. Communication is key to achieving patient-centered care, a touchstone for improving the quality of health care.3 Care that respects patients' preferences, needs, and values has special resonance for persons with disabilities, who often find others defining and circumscribing their lives and options. A patient-centered orientation requires open communication between patients and physicians, unhampered by false assumptions about patients' abilities and aspirations. Optimal care then demands collaboration between patients and physicians, each bringing their respective expertise to decision making: physicians possess critical technical knowledge, but patients are the experts on their own lives.
Communication between physicians and persons with disabilities can falter on many levels.4 An initial barrier arises when physicians "medicalize" disability. Although diseases do produce disability, persons with long-term disabilities do not necessarily approach their conditions as illnesses. "I'm not sick," says a woman who has had multiple sclerosis for 30 years. "I just can't stand up!" Rather than seeking treatment for her disease, she wants advice about performing daily activities, perhaps with assistance, at home. "The medical community has a pathologic view of deaf people," said a deaf woman who communicates using sign language. "They don't see us as a linguistic minority. I don't identify myself as disabled." When she visited the emergency room with an injured ankle, the physician's first question was about why she was deaf.
The ADA and other laws require clinicians to communicate effectively with patients, but physicians don't always do so. For instance, they often write notes to deaf patients, not recognizing that some sign-language users may have low proficiency in English. Hospital policies required a woman to relinquish her hearing aids before surgery. "Afterward, they told me, `You took a long time to come out of anesthesia. We kept talking to you.' But I couldn't hear them!" An elderly man, hospitalized because of deep-vein thrombosis, was given written instructions along with injectable medications to self-administer at home. The nurse and pharmacist who counseled him on discharge failed to recognize that he was blind. Unable to read the instructions, he didn't take his medication.
Uninformed assumptions about persons with disabilities can erode respect and trust, the bedrock of open communication. For instance, physicians may underestimate the intelligence of persons with communication disorders, such as speech impairments related to cerebral palsy (see shaded box). "When doctors hear I have a psychiatric disability, they question my judgment on everything," said one woman. "I don't have a relationship of trust." Persons with disabilities sometimes fear that physicians may not treat acute conditions aggressively, believing that the patient's quality of life is poor anyway.
Underestimating the Intelligence of Persons with Communication Disorders.
Some persons with disabilities note that their physicians do not make basic connections between functional impairments and daily needs. "When my shoulders were hurting, my doctor told me, `Don't use your arms so much,'" reported a woman who self-propels her wheelchair. "I'm paraplegic — all I have is my arms! How can I get around without them?" Physicians may not acknowledge that people with long-term disabilities often know more about their conditions than their doctors do. Several persons with spinal cord injury reported physicians' refusal to believe that they could feel pain below the level of their injuries. One physician biopsied a leg lesion without administering local anesthetic.
Finally, many persons with disabilities believe that physicians do not appreciate the richness of their lives, leaving them feeling disrespected or degraded. Some offenses, such as speaking to sign language interpreters rather than directly to deaf patients or grabbing the arms of blind persons when escorting them to examining rooms, probably reflect poor training. Others represent basic failures of physicians to imagine full and varied lives for persons with disabilities. "Come see us in our own environment," urged one wheelchair user. "Doctors anticipate a much lower quality of life than we actually have."
Unfortunately, structural barriers within the health care system can impede complete communication and efforts to provide patient-centered care to persons with disabilities. Health insurance does not reimburse more for patients who require extra time or resources (e.g., to make communication or physical accommodations, to consider complex health care needs, or to complete disability-related paperwork). In many circumstances, physicians must enlist colleagues from other disciplines, such as rehabilitation professionals and technology experts, to address patients' concerns fully — requiring even more time to communicate and coordinate care. In addition, health insurance may not cover the long-term rehabilitation and assistive technology that patients need.
Even without extra time, training, and resources, however, two basic precepts can help to build better communication between physicians and persons with disabilities — and perhaps better care. First, make no assumptions. Second, just ask persons with disabilities — about their needs, preferences, and lives.
Source Information
Dr. Iezzoni is a professor of medicine at Harvard Medical School and Beth Israel Deaconess Medical Center, Boston.
References
Department of Health and Human Services. The Surgeon General's call to action to improve the health and wellness of persons with disabilities. Rockville, MD.: Public Health Service, 2005. (Accessed August 17, 2006, at http://www.surgeongeneral.gov/library/disabilities/calltoaction/calltoaction.pdf.)
Department of Health and Human Services. Healthy People 2010: understanding and improving health; objectives for improving health. 2nd ed. Washington, DC: Government Printing Office, November 2000.
Institute of Medicine, Committee on Quality of Health Care in America. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press, 2001.
Iezzoni LI, O'Day BL. More than ramps: a guide to improving health care quality and access for people with disabilities. New York: Oxford University Press, 2006.(Lisa I. Iezzoni, M.D.)