Posted by jen (126.96.36.199) on September 01, 1999 at 14:43:19:
I just finished reading a fascinating article on my lunchbreak about nausea and the medical profession's attempts to treat it. Now I know that nausea is not something that generally accompanies clusters, but here are the portions of the article that really caught my attention:
"....Uncontrolled nausea remains a persistant problem. Still, a brand-new clinical specialty called 'palliative medicine' is pursuing a radical project: the scientific study of suffering. And what's striking is that they're finding solutions where others have not....Consider the significance of vital signs. When a patient is in the hospital, every four hours or so a nurse records the vital signs on a bedside chart to provide caregives with a measure of how the patient is doing over time. This is done the same way the world over. By convention, the four vital signs are temperature, blood pressure, pulse, and respiratory rate. And these do tell us a lot about whether someone is getting physically better or worse. But they don't tell us anything about suffering, about something more than just how the body is doing. Palliative specialists are trying to change this. They want to make pain-the level of discomfort a patient reports-the fifth vital sign. THE FUSS THEY'VE RAISED IS FORCING PHYSICIANS TO RECOGNIZE HOW OFTEN WE UNDERTREAT PAIN. And they are developing better treatment strategies generally.....Perhaps the most striking observation palliative specialists make, however, is that there is a distinction between symptom and suffering. As the physician Eric J. Cassell points out in his book 'The Nature of Suffering and the Goals of Medicine,' for some patients simply receiving a measure of understanding-of knowing what the source of the misery is, seeing its meaning in a different way, or just coming to accept that we cannot always tame nature-can be enough to control their suffering. A doctor can still help, even when medications have failed."
(from "The New Yorker, July 5, 1999)
1. This article was written by a doctor, but he doesn't seem to be the average kind who thinks he knows everything.
2. Earlier the article states that "Palliative specialists are experts in the care of dying patients.." But even though clusters aren't fatal, they are as far as we know incurable and permanent. So wouldn't a palliative specialist be helpful in their treatment as well? A few sentences later the article says, "These are patients with untreatable disease, and yet palliative specialists have been remarkably successful at helping them. THE KEY IS SIMPLY THAT THEY TAKE SUFFERING SERIOUSLY, AS A PROBLEM IN ITSELF." These specialists, it would seem, are people who really understand pain and its debilitating effects.
3. I still think that research should continue as to the cause of clusters, but think that, as most of you do as well, the treatment of pain is also necessary simply for all of your sanity. What I'm thinking is that palliative specialists could do a lot in the area of helping doctors become aware of the way their treating you; treating the PAIN as much as the condition. I think that this is largely the reason doctors have such a hard dealing with clusters; they can't find the cause, and don't know how to treat a condition without a cause.
I know these thoughts are nothing new among CH message board members, but I really thought it interesting to see in print, and am interested very much in finding out more about these palliative specialists. Bryan and I are meeting DocGreg for the first time tonight (very exciting) and I'm going to ask him what he's heard about it. I especially think of Bryan and other chronics who don't have the light at the end of the tunnel of remission; if one's neurologist could refer one to a palliative specialist, might that be an additional help? Does anyone know about this specialty? I'd be interested in any comments or input.
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