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Medical Homicide Plays Vegas

The American Association of Spinal Cord Injury Psychologists and Social Workers offered me a free, all-expenses-paid trip to Las Vegas to do some training at their annual convention. I figured, what the hell, right? Maybe this was my reward for six years of unswerving (but underpaid) devotion to the independent living movement. Things started to go wrong the second day of the conference, during the "Poster Presentation."

If you write a paper for the conference, but the panel of judges doesn't think it's good enough to occupy folks' time, you get to prepare a summary of your paper and put it up on corkboard. Two hours of the convention are set aside for people who did posters to stand beside them and explain their work. It's sort of an awful, miserable grown-up version of Science Fair, but without all the neat gadgets.

One of the poster presenters was an uptight psychologist from a Department of Veterans Affairs clinic. (Most psychologists who specialize in spinal cord injury work for the V.A.) After years of hard looking, he had finally found some evidence to prove that persons with spinal cord injuries are intellectually inferior to persons without them. This is presumably so because all SCI survivors have had head injuries until proven innocent.

His early attempt to find a difference in IQ scores was a bust, but tens of thousands of U.S. Government research grant dollars later, he had identified a slight drop in the ability of SCI survivors to engage in certain forms of abstract reasoning - a differential of less than 10%. I asked the psychologist who his SCI-survivor test subjects were, and he told me he used "volunteers." After some further probing on my part, he identified his "volunteers" as a bunch of unemployed guys sitting around the outpatient clinic dayroom in a VA spinal cord center, some of whom were probably there because they were in treatment for substance abuse problems. Well, heck! Let me pick any group of guys who watch daytime TV instead of working and I could find any intellectual deficit you care to name! (And the task gets easier if I need nothing more than a 10% spread to prove my case.)

I told the VA psychologist that I will finally be impressed by tests of intelligence and cognitive ability when I read a research report in which the test-giver triumphantly proclaims that his own group is the low-scoring one. (Somehow the tester always winds up proving his or her own superiority... "objective" science can be strange that way.) I think the VA psychologist has a problem with abstract reasoning because he didn't see why my remarks were funny.

There was worse waiting for me on the last day of the convention. At lunch time a woman attending the convention introduced herself to me. She said she was the mother of a young U.S. Navy officer who had survived a C-3 spinal cord injury while off duty, diving into a swimming pool. After we had been talking for a few minutes she told me that her son had committed suicide by rolling his wheelchair into another pool a few months after the accident. (If you're a social worker, as I am, and you have an honest face, as I do, this kind of things happens to you a lot.)

At the time of his suicide, her son was on a brief field trip into the community from the VA spinal cord center where he was going through rehab. We talked about what responsibility the VA staff bore for not recognizing his desire to commit suicide. When we had finished eating, my new friend asked me if I was going to hear the workshop on assisted suicide for SCI survivors. She made it plain that she was going, and I agreed to go with her.

To tell you the truth, I had planned to skip the talk entitled "Can Death Be Proud?" Until this moment, I had enjoyed the convention, and nothing had happened to make me really angry. In fact, I had been favorably impressed by the AASCIPSW crowd. In their own bureaucratic, slightly pedantic way they seemed sincere about wanting to raise the quality of life for SCI survivors.

As we took our seats in the back of the auditorium it occurred to me that if the assisted suicide talk was as vile as I feared, I might wind up writing something vindictive about it (like now), and that would be a poor reward to the AASCIPSW for their generosity and hospitality. (Note: This issue of Mouth will appear the week before I make my appearance at the 1994 AASCIPSW convention, again at their expense.) (In order to learn from my mistakes, I have to make them twice.)

The psychologist giving the talk began it in an appropriately somber, almost artificially funereal, voice that rather reminded me of someone giving the instructions at the beginning of a seance. He wanted to share with us the beautiful suicide of Daniel, a young college student who sustained a C-4/5 spinal cord injury. Listen to his description of Daniel: "He was an honors pre-med student at a prestigious university in the Northeast. He is described as idealistic, intense, personally competent, athletic. He was captain of the high school football team and its most valuable player. Sensitive, persistent, gregarious, determined, loyal and devoted to his family and friends. Deeply philosophic in his view of the Universe, God, and the Meaning of Life. [He was] concerned about the environment and enjoyed building and constructing. His interests included swimming, bungee jumping, parasailing, lacrosse, rugby, weight lifting, boating, etcetera, etcetera."

If you think Daniel sounds too good to be true. that's because you don't know the good stock he came from: "Daniel is from a profoundly supportive family. His father is a physician, his mother a social worker with a Ph.D., specializing in bioethics, and whose dissertation deals with quality of life secondary (sic) to chronic illness, and spends a lot of her time working in nursing homes. The family enjoys trips abroad together, from whence Daniel's dream originates to practice medicine in underdeveloped countries."

Yowzah! Sensitive and persistent? Gregarious and deeply philosophical? Concerned about the environment and enjoys building (apparently without recognizing the contradiction between these two interests)? Football, bungee jumping, parasailing, rugby and lacrosse? Plus boating? Not to mention all that stuff about wanting to practice medicine in underdeveloped countries. We also learn that his favorite group is the Grateful Dead (??!). Do you think perhaps our psychologist lecturer is pouring it on a bit thick - thick enough for us to wonder if all this mass of saintly detail exceeds the amount necessary for us to get an image of Daniel, so that it spills over to become just plain manipulation of the audience?

Daniel suffered his spinal cord injury diving in a pool. He received the usual emergency care, including a bone fusion and ventilator support. His heart became erratic, his lungs gave out three times, he required frequent suctions to keep the fluids out of his airway and he was in pain much of the time. "Several days post-surgery, for genuinely unknown reasons, but believed related to post-surgical swelling, Daniel experienced significant ascension of his paralysis." (For you laypeople out there, that means his level of injury climbed from C-4/5 to C-1 complete.) "From this point in time, Daniel had no sensation from the jawbone down." His physicians determined that he would never breathe without a ventilator.

Now, those of you have survived quad-level SCI will identify with much of what Daniel has endured up to this point, when he first expressed his wish to die. All four of the SCI survivors I know personally whose injuries were C-3 or higher felt like dying in the first two weeks of their acute care. Like Daniel's parents, their own friends and family told them that it was too early to give up hope. Daniel was dissuaded from dying immediately, and agreed to enter Craig Rehabilitation Hospital, an elite SCI rehab facility in Colorado. There his rehab program included "evaluation of his respiratory and nutritional status, potential for vocalization, mobilization, patient and family education, equipment needs, home modifications, etc."

The Craig doctors found brain lesions and breathing problems which made it unlikely Daniel would be able to swallow on his own or use a "talking trach" tube in his ventilator. Their medical opinion of Daniel's quality of life was summed up: "Daniel was looking forward to life as a brain-stem quadraplegic, essentially now C-0 ventilator-dependent, with an inability to swallow or speak normally, susceptible to multiple infections and profoundly dependent on loved ones and support systems for the most basic of care."

Daniel's condition was now much more serious than that of most high quads. "The parents were provided this information in the most sensitive manner possible. Discussion ensued between all parties, especially the parents and physicians, regarding the certainty in their clinical assessments." Daniel had not been informed of this prognosis yet, and was still gamely playing along with rehab, struggling to do what was asked of him. But his parents and the medical professionals charged with his care began to think about helping him die. (If this is where a Ph.D. in social work with a dissertation in bioethics gets you, I'm glad my father is an economist!)

I won't bore you with the self-absolving mental gymnastics performed by Daniel's "treatment team" because you've already guessed the outcome: Daniel's choice of suicide was officially approved. "Two psychologists were involved with both Daniel and his parents. Information was provided, and Daniel was asked if he would like to visit with other people in similar situations. In a strikingly non-ambivalent manner, Daniel decided he wanted to die and so informed the treatment team." Prognosis: poor. Recommended treatment: death. Daniel was sedated to prevent him from feeling the effects of suffocation as his ventilator was turned off. He was given a final drink of strawberry daiquiri. "The drinks are made and Daniel and his parents together toasted his future." As soon as Daniel became unconscious, the doctor removed his breathing tube. "Treatment is intended to relieve suffering. That's why we do what we do."

My companion from lunch time found the talk very disturbing. The counselor from the VA clinic where her son had been undergoing rehab at the time of his suicide asked a question which indicated the counselor believes that a patient's "real" will to commit suicide is unknowable. When I left to catch my flight home, the mother was confronting that counselor. I wish I knew the outcome of their talk.

I don't wish to belittle the pain that Daniel and his family felt. I don't take it upon myself to question his decision. His choice was a matter for himself, his family and his God. My criticisms are directed to the medical professionals who exploited Daniel's death in such a lurid and morbid manner, especially the psychologist making the presentation at the AASCIPSW. Daniel didn't die to advance anyone's career, he didn't die to become an example in the ongoing debate over assisted suicide and he didn't die to give us a two-hanky interlude in what was otherwise a dry and technical conference.

Feminists define sentimentality as emotion packaged so that it does not demand action. Exactly. The psychologist who presented Daniel's death as one of his professional accomplishments was canny enough not to make some sweeping declaration that it should become a model protocol for assessing whether or not new SCI survivors should die. Instead, he took the intellectual coward's way out. He declared that he just wanted us to "think" about Daniel's decision. He pleads with us to begin considering "the realistic bases" behind some suicides and reconsider the "indiscriminate" prevention of suicide, while quickly inserting a comment that the decision to "suspend medical treatment" is not the same thing as suicide. (Daniel didn't "suspend medical treatment." He stopped breathing. There is a difference.)

While I believe that it is evil for medical professionals to use their training to hasten death, I would have found an evening with Dr. Kevorkian at the podium more palatable. He isn't afraid to explain his agenda, and he isn't trying to recruit his converts through the back door.

If I have occasionally expressed myself here in a sarcastic manner, it isn't Daniel I am mocking, but those who have taken his tragedy and turned it into the academic equivalent of a tabloid story.

The psychologist's decision to begin his talk with a deification of Daniel not only established the manipulative nature of his presentation at the beginning, it also defined the whole issue in utilitarian terms. Look at what a golden boy Daniel was! Look how much he lost (and how much he was willing to give up by dying)! Since the psychologist placed such an exceptional value on Daniel's life, all the self-congratulatory moaning about how "difficult" it was to accept his decision to die takes on an extra nobility.

Would the psychologist have agonized over some redneck high school dropout from a broken home? Or a black kid from the projects who was shot in a crack deal? If they had chosen suicide, would their deaths would have been as meaningful as Daniel's? I doubt if they would have received so much help making their choice, and they certainly would not have been discouraged from suicide so vigorously.

I have long believed that while it is possible to write badly about good ideas (God knows I've done it), it is impossible to write well about bad ones. "Can Death Be Proud?" certainly supports this insight. It was the most inept presentation I have ever heard from a person with a Ph.D. The psychologist consistently used words he did not mean, as when he said "duress" for "distress" and claimed "a myriad of discussions ensued" in a context which clearly indicated that there were dozens of discussions, not millions.

His grammar was poor, as you can see for yourself from some of the quotes I have transcribed here. He frequently alternated between passive and active voice in the same paragraph and changed tenses within the same sentence. Most damning of all, he was unable to let go of medical and psychological jargon in what was not a technical talk. His use of jargon obstructed the message of compassion he thought he was conveying, creating a sense of clinical detachment that contradicted the oh-so-mournful tone of his voice.

I learned a lot from "Can Death Be Proud?" I learned that even the nicest professionals can fall for a glib line of shit if the person handing out the line has the right credentials. I learned that you can package anything - even death - so that it sounds like a good idea. I learned that you can use important good ideas, like "patient choice" and "personal empowerment," to sell self-destruction and medical homicide. Hey, if a psychologist could report on the suicide of a patient and make it sound like a tribute to the psychologist's skill and integrity, there are no standards and anything is possible.

One more thing: I was able to quote extensively from "Can Death Be Proud?" because I actually bought a tape of the talk, just in case I ever decided to write about it. I got some extra use out of the talk last fall when I hosted the Annual Armageddon Art Show, a show of work by artists on the theme of the end of the world.

The psychologist's sepulchral intonation and the gruesome story being told made a perfect soundtrack to an art show that consists of hundreds of patrons stumbling through a darkened gallery, by flashlight, viewing paintings on the subject of doom. I wonder what Daniel would have thought of the scene.

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