Teaching empathy for the disabled through experience
By Jason van Steenburgh
Imagine being strapped into a wheelchair. Your legs feel like they're on fire because they've been tightly bandaged and slathered with Bengay. You can't see much because you're wearing dark wrap-around sunglasses. And then you have to struggle to navigate around a trash can that has been thoughtlessly placed on the ramp to the banking machine you need to use.
Sound unpleasant? Welcome to the disability experience. You've just received a taste of what it's like to have late-stage diabetes, complete with vision loss, leg ulcerations and neuropathy, courtesy of Alicia Conill, ACP-ASIM Member, founder of the Conill Institute.
A general internist, Dr. Conill was diagnosed with multiple sclerosis in 1988. By 1995, she had to give up her practice. She decided to use her medical training and her new experience as a patient to teach caregivers how to provide more compassionate care to the disabled and chronically ill. She thought an important first step was giving caregivers (or care partners, since the relationship involves two-way communication)—be they physicians or spouses—a taste of how it feels to live with a disability.
Participants work in pairs—one acting as a disabled patient and the other as a caregiver—to tackle real-world tasks such as shopping or banking.
She sends out participants in her program with another participant acting as their caregiver to experience real-world frustrations. "While we're not looking to torture anyone, we don't want to tell people, 'Imagine you're in pain.' We want a little discomfort to creep in to make the experience more realistic," Dr. Conill explained.
The program also teaches participants how to care for the disabled and chronically ill, a role most are not familiar with. They wheel fellow participants around, help them navigate obstacles and perform tasks that can be frustrating for someone in a wheelchair.
The bigger challenge, Dr. Conill said, is to teach physicians to turn their newfound empathy for the disabled into useful action. While respect and understanding are important, she said a good attitude is not enough. Here are steps she outlined that every physician can take to better care for disabled patients:
- Talk to patients at eye level. People in wheelchairs can't stand and shake your hand. Even if you can sit only for a moment, Dr. Conill said, it will help go a long way to establishing rapport with the patient.
- Talk to patients, not their care partners. Look directly at disabled patients when addressing their needs, not their care partner. Dr. Conill said that not speaking directly to disabled patients makes them feel like they don't have any say in their care, a complaint voiced by many of the nondisabled people who have gone through the program. "They say, 'I can't believe they asked my care partner what I wanted for lunch instead of asking me directly.' "
- Look to care partners for additional information. Ask patients what level of interaction they would like you to have with their care partner. If patients are willing, have their care partner come along for appointments.
Because care partners have a different perspective, they can provide additional information that you might miss in talking to patients. When you ask about the patient's strength, for example, the patient might say, "I've been OK." The care partner, on the other hand, might elaborate, "You seem to be weaker in the morning than in the afternoon."
By attending patient visits, care partners can also get answers to their own questions. That can ultimately help them better care for the patient.
- Remove handicaps. When disabled patients visit you, are you helping turn their disability into a handicap? Take some easy steps to redesign your practice to better accommodate wheelchairs.
For example, does your office have wheelchair ramps? If so, are they too steep? Do your doors swing out so that patients in wheelchairs don't have to navigate around them once they enter the room?
Can someone in a wheelchair use your bathroom? Many toilets are too low for people with reduced lower body strength, including the elderly. For about $90, you can install a device to raise the toilet about three inches without the help of a plumber.
Your practice also might have difficulty checking a key vital sign—weight—in wheelchair-bound patients. Although not essential at every visit, it's valuable to check weight annually or when a patient appears to have had a weight change. If your practice is in or near a hospital, ask if the neurology or rehabilitation medicine departments have an appropriate scale—either a chair scale that a patient can be transferred onto, or a "sling" scale that can lift a patient out of his or her chair. Make arrangements to share equipment so you can have disabled patients weighed before their examination.
- Give the physical therapist specific goals. When you send a patient for physical therapy, don't just write "provide services for 10 visits." Instead, specify the outcome you'd like to see. If, for example, a patient has a gait disturbance, you might tell the therapist, "Evaluate and recommend appropriate assisting device—cane, walker or crutches—and other therapy that may improve function." Or you may want to note that a patient has MS and explain that heat irritates the symptoms. If MS patients don't rest between sessions, physical therapy can wear them out for days.
- Allow more time. Plan on spending extra time to care for patients who have disabilities and chronic illnesses that impair their mobility. Try to schedule more complex, mobility impaired patients at times when an extra exam room is available. Also avoid scheduling more than one disabled patient per session.
It is probably unnecessary for a disabled person to get undressed and sit on the exam table at every single visit. But for acute problems or annual physicals, Dr. Conill suggested, have patients arrive earlier so they can undress at their own pace.
- Evaluate the whole patient. It is easy to focus on a patient's disability and overlook other health issues. Disabled patients, however, still face the same health hazards as able-bodied patients. Heart disease and cancer are the leading causes of death for women with multiple sclerosis, the same as for the general population.
Also be on the lookout for signs of depression, a common and severe problem for disabled and chronically ill patients. Suffering an irreversible loss of function will depress even the most "upbeat" people, Dr. Conill said. That's why she suggested that doctors remember that while "chronic illness cannot be cured, depression can."
- Care, even if you can't cure. "Physicians are trained to diagnose something, then fix it," Dr. Conill said. "When we can't fix it, we say, 'There's nothing to do.' " She explained that even in the absence of a cure, you can care for patients' symptoms and improve their lifestyle by understanding and helping them overcome the challenges they face in their daily lives.
The Conill Institute for Chronic Illness in Philadelphia needs internists interested in helping facilitate its education programs. Those personally touched by disability or chronic illness are especially encouraged to contact them. For more information, call 215-599-3062, or go to www.conillinst.org.
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