Earlier this month, a 32-year-old husband and father fell 16 feet from a tree while hunting, broke his neck and was left paralyzed from the neck down—making him quadriplegic—and reliant on a ventilator to breathe. According to the Indy Star, while he was still in the intensive care unit, in the early phases of his injury, his family told his health care providers that they didn’t think that he would want to live as a quadriplegic. According to the story, the doctors discontinued his sedation, and he awoke enough to verify that he did not wish to live as a quadriplegic. The doctors discontinued life sustaining measures and he died about five hours later, surrounded by his family and friends.
At first glance, you may agree with the decision: An individual ought to have total autonomy over his body and future. Who better to make the decision than the patient himself? According to the article, his wife said, “The last thing he wanted was to be in a wheelchair” and “His quality of life would’ve been very poor.” It is not for me to question their decision—I was not there, I was not their physician, and I don’t know what process the healthcare providers followed. But this story brings a number of disturbing issues to light.
First, who makes these decisions to discontinue life-sustaining measures and how much information do they really have? An informed patient who is mentally competent may legally refuse life-sustaining treatment. If the person is neither competent nor able to make the decision, then surrogates may refuse treatment based upon the patient’s written advance directives or previously stated values and wishes. In this case, we have an acutely injured man who was under sedation in order to tolerate his ventilator. Paralyzed and intubated, a patient can usually only respond with head nods or eye blinks. Even if the sedation is discontinued, it would be difficult to have a detailed and meaningful conversation about what it means to be paralyzed and on a ventilator. If you are trying to make a decision on whether to live or die, you should have access to detailed and accurate information about your condition. It is not easy to make a “rational” decision in a highly emotional situation, but you must try.
A 1994 survey of 153 emergency providers found that only 18 percent would be glad to be alive after a severe spinal cord injury, compared to 92 percent of actual spinal cord injury survivors. Only 17 percent of emergency providers thought that the quality of life of a severe spinal cord injury survivor would be average versus 86 percent of severely spinal cord injury survivors. This is particularly disturbing since it is these health care providers who are supplying the information to patients and families about what it will be like to be paralyzed. Their remarkably negative attitudes are based on personal opinions. Most physicians in the acute care setting are not fully aware of what we do in the rehabilitation setting, nor do they follow patients with spinal cord injury for the years that follow an acute injury.