Even though medical care for patients with disabilities or chronic illness is too often sub-standard, there are some technology advances that hopefully will make up for the lack of good medical care.The key to success is coordination of the efforts of the different individuals caring for a patient. A team of professionals is important, but communication among and between them is important. Doctors, social workers, physical and occupational therapists are essential for most of the patients. I was fortunate to have access to both art and music therapists when I founded and was directing the Center for Handicapped Children in San Francisco. We even had a dance therapist who was amazing. She brought some fun, socialization and even physical exercise to the patients who could benefit from it.
Computers and other new devices now allow patients to turn on lights and other equipment and this can make a great difference. Most importantly a good quality of life should be the goal to strive for. If a patient sits in a wheelchair or lies in bed with no fun, no intellectual stimulation, and no socialization, the best medical care in the world can not make living bearable. When patients have a progressive disorder as Duchenne muscular dystrophy and other disorders. I believe the patients, who are able to to make decisions about their lives, should be given a choice about what they want. As patients become more and more incapacitated their ability to fight off unwanted life-prolonging medicine or technology becomes less and less. When my patients were reaching the stage where some decisions needed to be made, I always asked what they wanted in the way of life-saving care. Only one young man told me I should use every means to keep him alive. The other patients said "I don't want any breathing or other technology to keep me alive." I have seen both families and doctors bully patients into having care they did not want and that would greatly decrease their quality of life. I believe that is morally wrong.
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