Case Study: Informed Consent for a Patient with Low Language Skills

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What challenging situation required your creative efforts this week? What amazing communication duct tape did you devise to help the patient with no language skills communicate with his care team?

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Here is a situation recently encountered by a language program manager, involving several aspects of medical ethics and equal access to care:

 

The Otolaryngology Clinic saw a young man of 22 years of age, who had just arrived with his father from an African country two weeks previously. The father hoped that doctors could restore his son’s hearing. At age 3 the patient suffered a bilateral traumatic injury to both eardrums and became profoundly deaf. His father was in a neighboring country cut off by a civil war. His mother needed to work, so she sent the boy to his grandparents out in the countryside. Being deaf, he was not sent to school, and the grandparents did not have training to teach him language of any kind, other than very rudimentary home sign. The young man was not able to integrate much with the community due to his lack of communication skills. When he was 22, his father crossed back into the country, gathered him up, and brought him to the United States with the intent of restoring his hearing.

 

The surgeon agreed to attempt a repair of one eardrum at first, to see if hearing could be partially restored. This conversation took place without including the patient, between the surgeon and the father. In the family’s home country, the head of family would speak for a young man of 22 needing surgery, so the father had no reason to try to include his son in the conversation. But in the United States, the age of majority for decision-making is 18, so informed consent had to be asked for and received.

 

The challenge was how to accomplish this technical exchange of information and questions, with a person who is deaf, has never learned to write in any language, has never been asked to consent to anything, has no formal knowledge about human biology, has just arrived in a major international city after living in the countryside his whole life, has just re-met his father, and has never been inside a clinic, let alone a surgical suite? The care team needed to make sure that the patient understood that he would have surgery on his ear and that he agreed to this.

 

Great teamwork among all parties achieved communication. First, the care team explained the concept of consent to the father, with the help of an interpreter in the father’s language. Second, the team discussed with the father how the son’s physical and mental development appeared. Was there any indication of developmental delay? How was the son responding to home sign, was he taking initiative to manage daily living activities, how was he modulating his emotions and actions? The father’s account of his son’s ability to interact with the situation around him led the care team to have confidence that the son could make decisions about his own medical care. The son was not able to understand this conversation, but he followed it with his eyes and responded warmly and appropriately to every action of those around him.

        

Next, a series of drawings and pictures was gathered, to show in sequence: a man smiling, a man on a hospital gurney, a doctor with a sharp knife, an ear, a knife cutting into the eardrum area, a man with a bandage around his head and a lightning bolt coming out of his ear, then finally a man with a smaller bandage smiling. The doctor pantomimed with a scalpel, approaching the patient. The patient looked at his father, who made encouraging gestures. The patient relaxed and nodded. The surgery was performed later that week. At no point did the patient shy away or look surprised or afraid.

  

The happy sequel to this story is that the patient did indeed regain some hearing, which is exciting on a medical level as well as on a social level. He is learning American Sign Language and integrating well into life in the United States. For his doctor visits as he awaits surgery on his second ear, his father is attended by a spoken language interpreter, and he himself is attended by a Certified Deaf Interpreter and an ASL interpreter.

Have you encountered a comparable situation? Would you have taken different steps to gain the patient’s consent? What would they be? Share your thoughts in the comment section below!

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