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.
A more recent study, from 2004, confirms that “people in Western cultures including healthcare professionals assume that life with a severe spinal cord injury would not be worth living.” In addition, healthcare providers overestimate the emotional distress of spinal cord injury patients on ventilators, while, in general, spinal cord injury survivors are glad to be alive. The problem lies in bias: the well-intentioned people who are supplying the information to patients can unintentionally interject their personal ideas or can actually lack the necessary information to properly counsel a patient and family.
Reality often trumps the able-bodied’s frequent assertion that they would rather die than live with a severe disability. There is no question that quality of life means different things to different people at different times in their life. Our perception of quality of life changes over time. When we are young we may focus on physical abilities, leisure activities, and employment, but as we get older, we place more emphasis on the importance of family and social relationships. The same is true of a person who becomes disabled. They adjust to their disability and their definition of quality of life evolves with time. We know that the quality of life for spinal cord injury survivors increases over time, particularly after the first year. If I became severely disabled I might first focus on my loss of physical abilities like playing golf with my buddies, hugging my family, and my independence from other people. But, over time, I would probably realize that I can still take great joy in seeing my grandchildren grow up and marry; enjoy the smell and warmth of a Thanksgiving dinner with my family; listen to my friend’s complaints and triumphs; and cheer on my forever-doomed Chicago Cubs.