Am Fam Physician. 2009 Jun 1;79(11):955.
My brother J. is 58 years old. I have always known him to be sweet and kind, with a good sense of humor. He likes to eat, dance, and bowl, and to be his own person. What I did not know was how courageous, inspirational, and committed he is to his own life and well-being, until his recent illness.
J., who has Down syndrome and lives in a group home, was sent to the emergency room when he experienced difficulty breathing. He was admitted to the hospital with influenza, viral pneumonia, high fever, and retracting respirations. He was gasping for breath and very sick. Although J.'s verbal abilities are not always clear, we heard him say, “I'm afraid—I don't want to die.” My husband and I didn't even acknowledge that we had heard what he said until the next day because we did not know that he had the capacity to understand the concept of illness leading to death. That statement became the framework for us as we made decisions for his care.
As J.'s guardian and only living family member, I made the decision to intubate him, transfer him to the ICU, and place him on a respirator. Over the next week, his multiorgan failure led to subsequent decisions for hemodialysis, tracheostomy, and a blood transfusion. Concerns about my own decision-making and J.'s prognosis took a tremendous toll on me. With each beep of one of the monitors, I was convinced that trouble loomed. My fear was that J. would die, or worse yet, he would be hooked up to a ventilator and feeding tube to live out his days in a nursing home. J. saying that he did not want to die made me support every treatment decision to try to reverse all of the medical problems he had and to give him the best chance at life.
After two long months, J. returned to his group home. He recovered—he is able to breathe, and all other bodily functions are restored. J.'s reentry into his home was sheer joy for him, and seeing him reconnect with his friends was poignant. I am thankful that J. survived his illness and that he had such a talented and caring hospital team. I am most thankful that I was finally able to see my brother for who he is: a friend I almost lost, a fighter, and most importantly, a survivor.
Family members of persons with intellectual disabilities rarely discuss with them death-related issues. They hesitate to scare or upset someone who may not fully understand what is being discussed. Family members may also perceive persons with developmental disabilities as being weak or fragile, after years of providing them with special assistance, accommodation, and protection.
Because of their particular family dynamics and history, Marilyn likely thought that her brother was too fragile to tolerate knowledge about death. She should be commended for hearing J.'s wishes, tolerating her own doubts, and making sound medical decisions based on the medical facts. I am thankful they had a happy ending.
End of Life/Palliative Education Resource Center. Palliative care for adults with developmental disabilities. (http://www.eperc.mcw.edu/fastFact/ff_192.htm)
St. George’s University of London, Down’s Syndrome Association. Learning about intellectual disabilities and health. Cancer, palliative care and intellectual disabilities (http://www.intellectualdisability.info/mental_phys_health/cancer_id.htm)
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