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Symptom Management—Overview
Here am I, dying of a hundred good symptoms.
Alexander Pope
There are two paths to progress; one may enter through the path of principle or one may enter through the path of technique. Principle and technique are firmly tied together. At the very heart of every technique lies a basic principle. Look beyond technique and discover the principle. That gives it life. Technique is the hammer that drives the principle into our consciousness. Without technique—the principle has no way to express itself—it is just an idea.
Yagyu Jubei, Japanese swordsman
Mr. M. is an 86-year-old white male with rheumatoid arthritis, who has been living alone with his wife at home. His functional status has been gradually declining over the past few months to the extent that he can no longer transfer solo from bed to wheelchair. His wife has been helping, but she too is frail and cannot handle him anymore. He is here for long-term placement.
From Mr. M. I heard a somewhat different story. Indeed, he had had rheumatoid arthritis for many years. It was now “burned-out”—the fires of redness and swelling had passed, leaving in their wake gnarled hands and joints useless for even simple tasks such as buttoning his shirt, and, yes, he had been losing ground. He had become “frozen.” His wife tried to help, but he was worried about her health. Rather than drag her down, too, he thought it better to come to the nursing home where, he assumed, he would die in the not-distant future—or so he hoped.
He had pain, lots of pain, 8 out of 10, although this did not do justice to his experience. His pain had become inseparable from his frozen state. I asked what he had done, what he had taken for his pain. He had tried to keep his joints as flexible as he could, but it just hurt too much to move them. The pain of movement was replaced by a different pain of immobility—damned if he did and damned if he did not. He was still taking monthly gold injections for his arthritis, but these did not help his pain. He had taken naproxen, which had helped his pain significantly, but the doctors had stopped that a little over a year earlier, when he had had an episode of upper intestinal bleeding. He had tried Tylenol with codeine; it did not help much, and the constipation was as bad as the pain.
I reviewed his chart again, including numerous clinic notes. Pain was mentioned only in passing. Nonsteroidals (NSAIDs) were “contraindicated” because of the gastrointestinal bleeding. The patient had refused Tylenol with codeine. There was nothing more to do.
After thinking a bit, I talked with the patient again. I told him I would like to try some different therapies that might help him with his pain, and, perhaps, we could get his joints moving better. I could make no promises, but we would try. That was OK with him. I thought he would benefit from a low dose of a long-acting opioid, this time given with senna to counteract the constipation. I also wanted to rethink the NSAID issue. (This was before the availability of safer COX-2 inhibitors.) I said, “You told me the naproxen helped your pain in the past. It’s true that you are at a higher risk of bleeding again than most people. I can give you some additional medicine that should decrease the risk of your bleeding again to approximately 5 to 10% over the next year, but it is still a real risk. Are you willing to take this risk?” I will never forget it. He uncurled a bit and gave me an angry, penetrating glare. “Here I am, a bunch of pain just waiting to die. I’m 86, separated from the woman I love because I can’t get around. You think I give a damn about a 10% chance of bleeding or dying? GIVE ME THE GODDAMN NAPROXEN!”
And so I did. We also used the opioid and briefly a TENS (transcutaneous electrical nerve stimulation) unit. We dipped his hands in paraffin. His pain decreased significantly. He began to loosen up. With physical therapy he regained his ability to transfer from bed to wheelchair on his own, and with this was able to return home to live with his wife.
The care I provided for Mr. M. was nothing special. He required no fancy pain control tricks. What was unusual about this case? I had brought Mr. M. into the decision-making process, allowing him to weigh the risk of bleeding again against potential pain relief. Why had not his former physicians? One reason, I think, is that his physicians had come to worry more about the harm that might be done than the good that might be accomplished. Probably for his physicians, gastrointestinal bleeding loomed large as a life-threatening complication, which it can be. However, pain—that was something else, hard to measure, an intangible symptom. From the physicians’ perspective the trade-off was great enough that the possibility of continuing naproxen simply was not on the “menu;” there was no choice to offer. NSAIDs were “contraindicated.”
In medical school and residency training I learned very little about symptom management. For the most part I learned by imitation. A resident one month used this suppository for nausea, so I did too. The next month another resident used a different suppository and that, too, was OK. After all, one size fits all, I thought, but I was wrong. I was amazed in my early palliative care training to learn how much antiemetics differed in their actions. As I came to understand how much could be done for patients to help them feel better, I wondered why I had not been taught this before.
The New Oxford Dictionary provides the following definition of a symptom: “A physical or mental phenomenon, circumstance or change of condition arising from and accompanying a disorder and constituting evidence for it . . . specifically a subjective indicator perceptible to the patient and as opposed to an objective one (compare with sign).”1 A symptom represents a clue to something more important. We often say, “That’s only a symptom. The real problem is . . .” In our system of medicine the real problem is the disease. This choice of wording, this understanding, is unfortunate, as it devalues symptoms. Clues are interesting as long as the mystery remains unsolved. However, once solved, clues are soon forgotten. For most patients who could benefit from palliative care, the mystery, the disease, has long since been revealed. Perhaps this is one reason modern clinicians have so roundly ignored symptom management as a proper focus of medicine. Once Sherlock Holmes has solved the case, who cares about the clues?
The perspective of patients is quite different. Patients do not so much have symptoms as experiences of illness.2 Mr. M., suffering with the pain of rheumatoid arthritis, would have found it ludicrous to consider his pain merely a clue to “something more important.” Experientially, symptoms are inseparable from the disease. Pain is part of rheumatoid arthritis. Symptoms are still important in providing clues to as-yet-undiscovered disease processes. If we can identify a previously unknown disease, our efforts to treat the experience of illness will usually be much enhanced. However, when considering symptom management of known, chronic illnesses, what is usually more important is to understand what clues the disease process can provide us to understand and treat the symptoms, the experiences, of the patient. Understanding the nature of pain in rheumatoid arthritis aided us in devising a strategy that helped Mr. M. with his experience. Thus, in palliative care we often reverse the relationship between the disease and the symptom; the disease process becomes a clue to solving the mystery of the symptom/experience.
Palliative Case Note
Ask the question: What does the disease process tell us about the patient’s symptoms?
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