"Why should we live "stoically" with pain. Why indeed. No one in their right mind would tell a diabetic to live stoically without insulin - or nearsighted without glasses!" Cheryl Eckstein
Several years ago, I became disabled with a non terminal condition and am now classified as a chronic pain patient. Unfortunately, I know from experience the agony of protracted pain - a pain so serious, that it began to have devastating results on me spiritually and emotionally. I know what toll unrelieved pain can have on the family, and friends. Pain changes people.
A number of years ago, I was invited to speak at an conference on euthanasia at Harvard, Mass.. Organizers of the conference, gave me the opportunity to discuss whatever I wanted. Since the majority of Kevorkian's subjects have not had terminal conditions, I thought this was the chance of a lifetime to talk about the myths and misinformation besetting non terminal pain patients. The results of my workshop were most gratifying. I was informed by some of the attendees, (many of them medical students) that they believe they are being short changed when it came to getting up-to-date information on proper pain control.
I am convinced, that far too many pain patients who are suffering unrelieved pain, are going to have to be well armed with the best information on pain control, and be prepared for a fight to get effective pain relief. In a nutshell, the under treatment of pain is a national disgrace. I wish to share with you some notes from my workshop at Harvard.
"Pain" as Albert Schweitzer once said, "is a more terrible lord of mankind than even death itself."
According to the National Chronic Pain Outreach Association it affects all ages, races and occupations. Some statistics say 1 in 10 Americans (25 million people) are affected by chronic pain. Chronic pain disables more people than cancer or heart disease, and it costs $90 billion per year in disability payments and lost productivity. Yet until recently it received little attention from medical researchers and is still one of the most understood and underfunded health problems in North America. Chronic pain affects husbands, wives, children, friends, employers, co-workers. It interferes in all aspects of the person's life: work relationships, self-esteem and emotional well being.
Chronic pain shatters productive lives. Prolonged pain destroys the quality of life. It can wear away the will to live, at times driving people to suicide. The physical effects are equally serious. Severe, persistent pain can impair sleep and appetite, thereby producing fatigue and reducing the availability of nutrients to organs. It may thus impede recovery from illness or injury and, in the disabled, or weakened or elderly patients, may make the difference between life and death.
Analgesia means painlessness. The goal of every doctor treating chronic pain patients should be to provide proper and adequate analgesics. Medications used to bring about painlessness are: -- Morphine, Dilaudid, Methadone, Percocet and others—all of them powerful narcotics broadly known as opioids.
When other means fail to provide relief from chronic debilitating pain, opioids are considered the best drugs available for fighting the more severe pain. By binding with neurons, they stop pain messages from traveling up the spinal cord. The morphine molecules target the affected nerves -- the "receptors" -- and bind to them, dulling the discomfort. No "high" results. Patients taking opiods may experience side effects like constipation or drowsiness, and they do eventually build up a tolerance for the drug -- but they will not become addicted to it. In fact, Morphine is no more addictive to a person in pain than insulin is to a diabetic.
Myth #1) Having cancer, does not mean you will have pain. Some cancer patients have some discomfort, but not pain.
Myth #2.) Being diagnosed with cancer, doesn't mean you will die from it. More and more people are surviving, and die from other causes or natural deaths without the cancer ever returning. Still, there is bad news for some. A 1995 study published by the Journal of the American Medical Association, found that half of 9,000 terminally ill patients had spent their dying days in moderate or severe pain. Other studies put that number at closer to 70 per cent. In spite of scientific proof that opioids work in favour of the patients, many of these patients died suffering needlessly, because of their physician's antiquated fear that their patient would become addicted.
It is interesting to note that just 100 years ago, the wonder drug 'aspirin' was invented by Felix Hoffmann, who simply wanted to relieve his father's pain from crippling rheumatism. One hundred years ago, the request to die was uncommon, yet very little could be done for intractable pain and suffering the patient was enduring. How strange, that today, when nearly 100% of even the most severest pain can be sufficiently relieved without any serious side effects—some want euthanasia or physician-assisted suicide.
It is terribly sad to know that some patients are so fearful of being doped to near-unconsciousness that they don't report their pain to their doctor. Many believe pain from cancer is inevitable, or are afraid to admit they have pain or that it's worsening. They believe more pain means the disease is getting worse.
If you are a chronic pain patient or someone in your family is, find out all you can about the condition or disease. The Internet is absolutely the best place to start, if you have access to a computer. If not, you should be able to find the information at your local library. Don't depend on your doctor, unless he or she is very knowledgeable about pain control. Some pain patients suffering with severe pain are only being treated with Tylenol 3 or its counterpart. This is not acceptable.
Physicians by and large do want to help their patients, but are afraid their patients might overdose or become addicted. Apparently, only three per cent of patients who are on morphine, become addicted. It is in that category of patients, that doctors discover they had addiction problems to begin with.
If severe protracted pain were being relieved, I think Kevorkian would be out of business. Pain as I said, shatters lives. Some pain patients will not consider using opioids because of the myths and stigma attached to such drugs. My great fear is that too many pain patients are falling through the cracks. Palliative care is better understood by the general public now than is was even five years ago. But people know palliative care is for the dying. Chronic pain patients don't know where to go. We even have to be very careful about pain clinics, but this must be saved for another article.
Physician assisted suicide is legal in Oregon. The horror of this is, that if proper pain medication had been available to chronic pain non terminal and terminal patients in the first place; and if the general public could have trusted their physicians for adequate pain control, it is realistic to believe that Measure 51 would have passed and physician assisted suicide would not be legal.
I believe this is one of the most important areas of study. Thankfully, more time, study and conferences are being held on this subject. However, I believe chronic pain patients have a long way to go before they regain a big part of their lives.
BY Cheryl Eckstein
1. Epivalothanasia/euthanasia, is a term coined by my friend Dr. Paul Byrne. In a personal letter to me, Dr. Byrne said,
. . . I do know that euthanasia is the wrong word for us to be using. The translation of euthanasia from Greek is "good death." We find ourselves being opposed to "good." The correct Greek word for us to be using is Epivalothanasia. Epivalothanasia is the Greek word for "imposed death". . .
Epi- from outside; valo - to thrust upon; thanasia - death; thus, death thrust upon from outside. EPIVALOTHANASIA -- IMPOSED DEATH. . . . Paul Byrne, M.D.
This makes perfect sense to me, and I hope helps us for once and for all - to discard the term "passive euthanasia." Dr. Bryne hopes that epivalothanasia will used "so often and commonly that euthanasia will not be used, unless it is by those in support of the pro-death culture."
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