No one is happy about sustaining a spinal cord injury, and few who have experienced it will tell you it wasn’t a traumatic event in their lives. But doctors and medical staff are going too far when they expect every newly injured patient to become depressed, or to progress through specific stages of grief similar to those described by Elizabeth Kübler-Ross, MD, in her famous book, “On Death and Dying” (MacMillan, 1969).
“The empirical studies that have been done have not really substantiated the idea that people have to go through specific stages of a grieving process,” said Harborview Medical Center psychologist Charles Bombardier, PhD In fact, Bombardier said, some studies looked at whether Depression or mourning predict a good outcome, and found that they do not. And yet the idea that grief is necessary for successful adjustment persists, leading to trouble for the patient who doesn’t fit the expectations of staff and family members.
“We kind of put the patients in a bind,” Bombardier said. “We tell them, ‘If you don’t show that you’re sad about your injury, you’re in Denial.'” On the other hand, patients who do express sadness are likely to be labeled as depressed. “It gets interpreted as pathological no matter what they do.”
Medical practitioners’ common expectation of sorrow among people with recent SCI is sometimes referred to as a “requirement of mourning,” Bombardier said, and it seems to arise from their own misconceptions about Disability. Studies show that staff members tend to over-rate the patient’s level of distress, and to see depression where the patient himself does not report it. In addition, non-disabled staff members have been found to rate the wheelchair more negatively than disabled patients. “The staff are projecting their own stereotypes about disability onto these patients,” Bombardier said. “We really have to do a better job of listening to what the patient gives us.”
One factor in so-called “denial”, Bombardier said, is that it takes time for a revised image of oneself to sink in after a profound change, such as losing the ability to walk. If you’ve always been able to walk, you have a basic belief that you are able to walk, and the process of changing that belief is cumulative and gradual. Denial in newly injured patients also serves a useful purpose, Bombardier said, pointing out that the other side of denial is hope, a necessary component of adjustment and recovery. In fact, he said, hopelessness has been shown to be “a significant predictor of adjustment problems down the road.”
At Harborview Medical Center, Bombardier and his colleagues do not attempt to shatter hope by stressing the harsh facts of a patient’s prognosis — unless the patient refuses to attend therapy sessions in the misguided belief that they will not be needed. In most cases, Bombardier said, “We let patients come to their own conclusions. Usually, a week of PT (Physical Therapy) is a lot better than a week of psychotherapy, because they’re finding out every minute what they can and cannot do.”
As for depression Bombardier said, there is a big difference between depressed mood and major depression, and studies indicate that only about 30% of SCI patients develop major depression. This means it isn’t a problem for the remaining 70%, unless they find that everyone around them is concerned because they aren’t depressed. At Harborview, such patients find an ally in social worker Norma Cole, who steps in when expectations conflict with a patient’s experience. “I spend a lot of time reassuring the family — reassuring the staff, too — that this person is doing o.k.,” Cole said.
For those patients who do become seriously depressed, Bombardier said, there are effective medical and psychological treatments (i.e., drugs and psychotherapy). Most patients will experience mood “ups” and “downs”, and both Bombardier and Cole said it’s not uncommon for patients to go through a difficult time a few months after their discharge from Rehabilitation. The community generally doesn’t offer the services the patient has been receiving in rehabilitation, and he may be facing the chronic nature of his disability for the first time during this period, Bombardier said. (Discharged patients or their doctors who would like a referral for this sort of problem can contact Cole via the MEDCON number listed at the end of this article.)
Bombardier said he finds it useful to think of spinal cord injury as a punishing experience, or a loss of rewarding activity, as suggested by UW Professor Emeritus Wilbert Fordyce. Natural responses to punishment include anger, withdrawal and helplessness, Bombardier said. A good way to minimize this distress and improve adjustment is to maximize the patient’s successful and pleasurable experiences during rehabilitation.
The patient’s therapists set weekly strength and endurance goals in achievable increments, providing the patient with the experience of success as those goals are realized. Therapists also try to put work into a context that the patient will find enjoyable, such as using a game of checkers to work on reaching or hand function, Bombardier said. In addition, the recreation therapist takes the patients out of the hospital for activities such as swimming, dining out or attending a baseball game, “to give them the experience that you can go outside in a wheelchair and enjoy something.”
In general, Bombardier said, “our first strategy is to go with the person’s natural coping strategies.” In one case, a patient needed some occasional “time off,” in which he could just watch TV and didn’t have to think about having Quadriplegia. Many of the people who get spinal cord injuries simply aren’t the verbal type in the first place, so they don’t want to discuss their feelings at length with anyone. (Both Bombardier and Cole stressed that SCI is unlikely to change a person’s basic personality.) The one thing most patients do seem to need is to be given time — time to adjust, in their own way, to their new situation.
Charles Bombardier and Norma Cole can be reached via MEDCON, a 24-hour, toll-free consultation and referral service for health care professionals and their clients with spinal cord injury, at 206-543-5300 (in Seattle) or 1-800-326-5300.
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Major depression is a clinical diagnosis made on the basis of the prolonged, observable presence of specific symptoms, including: a depressed mood; diminished interest or pleasure in activities; significant weight loss or gain; inability to sleep or sleeping more than usual; unusual agitation, restlessness or slowness; fatigue or energy loss; feelings of worthlessness or guilt; diminished ability to concentrate; and recurrent thoughts of death or suicide.