Patient Stories

Medical Issues: Hospital admission secondary to respiratory problems requiring ventilatory support. Degenerative condition affecting muscles, unable to walk, weakening.
Background: Duchene's muscular dystrophy. Supportive family.

DJ is a 11 year old boy, who was diagnosed with Duchene's muscular dystrophy at age 6. He is no longer able to walk and has limited use of his arms because of weakness and a limited range of motion.  In addition, he has recurrent pneumonia and respiratory difficulties. He was hospitalized for treatment of a respiratory infection and placed on a ventilator. As a result he was unable to make himself understood using speech. The Assistive Technology Service immediately provided him with a speech generating device and training. He was able to access the device by manipulating a micro track ball that was placed between his hands and construct messages by spelling out words and/or selecting words and message using communication software.

Each day DJ would prepare a joke for the staff. It quickly became evident that he was tailoring these jokes for specific nurses, recognizing their personalities. He liked to get people to laugh and engage with him on a more personal level rather than just in terms of medications and treatments. One day his mother brought him a stuffed animal toy--a two foot long snake. During rounds that evening, the SLP asked DJ what jokes he wanted programmed for the next day. With the SLP's help he constructed the phrase, "Lift the covers and see my snake." The following day his mom put the snake under DJ's blanket and when his nurse came in, he told his "joke." Imagine her surprise!

Humor in the context of a serious medical situation can create situations that help patients and providers establish strong personal relationships, facilitate daily treatment and help patients become active partners in their care plan.

DJ's current situation portends future health concerns. His condition will deteriorate further making communication even more difficult and he very well may face end-of- life issues within the next decade. However, having well established communication strategies and tools in place now, knowing how to use them in the hospital/hospice environment when he needs to and knowing that his family and the healthcare professionals will support their use will make all the difference.

Even though DF is still a child, he has relatively good health literacy skills because of his ongoing experiences with nurses, doctors and hospitals. He has a good understanding of his own situation. Language and cognition are intact. His communication impairments will increase over time as his respiratory and motor functions deteriorate. Thus, he will require ongoing communication supports, that include a variety of AAC tools and technologies to make communication easier for everyone.

Relevant issues: The Joint Commission Standard on Effective Communication, Cultural Competence, and Patient- and Family-Centered Care.
The new and revised Joint Commission standards can help remove barriers to successful patient-provider communication by mandating the following:

The medical record contains information that reflects the patient's care, treatment, and services (Standard RC.02.01.01). According to this standard, DJs' speech and communication difficulties would be identified before or during his admission and documented in his medical record. Included would be information about how he communicates, e.g., using a speech generating device or communication board, whether he has it with him and if not, the type of display/device he requires so he can select to letters/words to answer questions. In addition, given his limited motor function, he  needs an adapted nurses call signal. There would also be information about family members/friends who can support his communication efforts.

The hospital effectively communicates with patients when providing care, treatment, and services (Standard PC.02.01.21). The hospital would need to address DJs communication needs throughout the "course of care" and refer him to the speech-language pathology department to provide ongoing supports.

The hospital respects, protects, and promotes patient rights (Standard RI.01.01.01). This includes the right to and need for effective communication (R1.01.01.03,EP1). At admission, DJs mother could be designated as a support person to ensure staff understands his needs, answers his questions and that he can communicate effectively.