When I first met Mr. M. he was curled up in bed in a darkened room, looking resigned to his fate. I had read his chart and heard a short story explaining why he had been admitted to the nursing home.
"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 any more. 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 other joints useless for even simple tasks such as buttoning his shirt, and, yes, he had been losing ground. He had become "frozen," unable to move most all of his joints. 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, eight of ten on a pain scale, 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 COX2 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 5-10% 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 85, 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.
Next >>> [ Go Up ]
Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.