From The New England Journal of Medicine
Mr. Taylor's letter is in response to a series of articles entitled "Prescribed To Death" published by "The Idaho Statesman," a Boise, Idaho newspaper. July 18, 1997 Boise, ID
Marianne Flagg
Dear Marianne Flagg and "The Idaho Statesman,"
Your five-day story, "Prescribed to Death," about Charlotte Renee Wilson, was very moving and very sad. It's sad that patients have to die in order to get their story in the newspaper. I wonder if you will print my story? I am a living chronic pain patient.
Like Renee, I have baby photos, I have a family, and I also keep a journal of my thoughts. And I have used opiates every day for over twenty years. Your series of articles did point out that some chronic pain patients do indeed require opiates for relief, but you only said it in a few sentences, buried at the end of the side-bars. I do appreciate that you asked the opinion of some out-of-state doctors, who pointed out that patients who are
suffering from pain seldom abuse their medication. I've seen just two doctors (not concurrently) for my pain medication since I moved to this state in 1980. Both of these doctors have treated me with compassion. Even though I use opiates daily and in higher doses than most patients, I have never felt the need to forge a prescription, call in a fake prescription to a pharmacist, or lie to my doctor. An addict must lie; a chronic pain patient gets the best treatment if he or she tells the truth. For severe chronic pain, the proper dose of an opiate drug is the dose that works. Too few doctors understand this. Medical school provides about five hours of class time on pain, and in some medical schools, it's not taught at all! After many years, most chronic pain patients experience the uncomfortable feeling of seeming to know more than their doctors.
The current drug hysteria equates drug use with drug abuse. This "opiophobia" has become so entrenched that many older, dying patients refuse any pain medication whatsoever, with the fear that they will become zombies or drug addicts. And so they suffer terribly in the days or months before they die. Your series of articles has contributed to this hysteria. We have been told to "just say no to drugs" until it is us in the dentist's
chair awaiting the root canal, until it is our spouse suffering during a long and protracted labor, until it is our loved one who is slowly dying.
I belong to a group of people who suffer from severe chronic pain. In my case, the severe pain occurs about twice a month and lasts for two to three days. And I've suffered this way so far for twenty-five years. Every attempt to cure my pain has made me worse off.
I've tried so many supposedly safe, non-addictive drugs, most of which made me terribly sick. I've even had neck surgery, in a misguided attempt to rid myself of the terrible pain. Since the neck surgery, I can no longer do all the things I used to do. I am thankful that I can still walk. Without opiate drugs during a severe acute attack, I would kill myself. Your article failed to mention that in the United States, it's estimated that approximately 7000 chronic pain patients commit suicide each year, mostly
due to lack of medication or under-medication. You also failed to mention that the current right-to-die issue is primarily due to the fear of unrelieved suffering.
Many chronic pain patients like myself (including people with migraines and benign or non- malignant headaches) wish that our condition was terminal, like cancer pain patients or AIDS patients. Our problem is that we don't die, and thus we suffer longer. We become "failures" to the medical community, and we are frequently abandoned. We are made to feel
humiliated because we use opiate drugs "just for headaches."
I know from my own experience. When most severe, my pain is very debilitating; the headaches are excruciatingly painful. It is worse than the pain I had upon waking from knee surgery. Many women who suffer severe migraines have told me that the pain is much worse than childbirth. So as a living chronic pain patient, I have endured through (if you'll pardon my comparison) the pain of the equivalent of over 600 childbirths! I am
curious why you would spend five days of front page and multi-page articles about a woman who can no longer speak for herself, and yet you did not interview even one living chronic pain patient. Because of ignorance and social stigma, we suffer because we suffer.
There are many chronic pain patients who do not become addicts. We have jobs; we have families; and we often use opiate drugs, sometimes every day. I find it shameful that you would document one person who sadly, was a drug addict, and then proceed to implicate doctors, nurses, hospitals, and pharmacists. The most difficult chronic pain patients to treat are those who abuse their medication. And all patients deserve humane treatment and
compassion. What's really tragic is that chronic pain patients who are under-medicated often exhibit all the behavior associated with a drug addict.
As a chronic pain patient who has "been through it all" for a quarter of a century, I want to tell you that what we need is not tighter (or looser) government controls on our doctors and pharmacists. What we do need is better education and improved patient-doctor relationships. Your series of articles may help some potential drug abusers, but at the same time your articles are an insult to those of us who suffer chronic pain and can only
find relief with opiate drugs.
For anyone who wishes to begin to understand chronic pain, I humbly suggest that they read, "Pain Relief" by Dr. Jane Cowles, Ph.D., ISBN 0-942361-77-6, as a start.
The doctors you interviewed from out-of-state knew what they were talking about. There are some doctors in this state who also understand severe chronic pain, but they are difficult to find. No patient should ever wish for death because of a physician's reluctance to prescribe opiate drugs. While the woman you described in your article perhaps should have never been on opiates, there are many chronic pain patients who are alive only because of opiate drugs. I am one of them. And I am not alone.
Thank you for the series of articles they were extremely well-written and very informative. But you should have included the voices of living chronic pain patients. I hope some of your readers see this, and I hope those who do see it believe what I have to say. I would not be alive to say this if it weren't for the compassion and understanding of my doctor and pharmacist.
I speak to you from my living heart, not from my grave. Above all, the chronic pain patient yearns to be believed. We don't blame the automobile companies for car accidents; similarly, we should not blame the medical community for drug-induced deaths. Chronic pain and drug abuse are not the same thing. One thing they do have in common is that both can kill.
Sincerely,
John P. "Quill" Taylor,
December 5, 1996 -- Volume 335, Number 23
"The Idaho Statesman"
P.O. Box 40, Boise, Idaho 83707
Senior Technical Writer
Hewlett-Packard Company
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