Pain is often a symptom during the dying process, particularly in patients with cancer who have metastatic disease. Although some patients die without any pain at all, when pain does occur, failure to control it properly can be extremely debilitating and demoralizing. Pain control is essential to a peaceful death.
In recent decades, the medical profession has made great strides in controlling pain, such that it is now rare that patients have unrelieved pain. New medications, new and better ways of delivering medication, surgical procedures that sometimes can interrupt pain pathways or relieve the basic cause of the pain, the use of radiation for pain coming from metastatic cancer, and other measures are being used aggressively for comfort care. Doctors now consider pain control a medical subspecialty, and there are doctors and clinics devoting their entire efforts to this subject. When the primary care physician is not successful in controlling pain, he or she can consult specialists who are experts in pain control.
In spite of these tremendous improvements, more than one recent study has shown that patients still may not have their pain properly and sufficiently relieved. Patients and their families must discuss this matter with their physicians and not settle for getting by with partial pain relief—it needs to be good pain relief.
The first step in prescribing pain relief is to decide which category of medication is needed. Minimal pain is usually controlled with ordinary medications, and the very simplest (aspirin, acetaminophen [Tylenol], ibuprofen [Motrin or Advil], and other similar over-the-counter drugs) may be all that is necessary. We are all familiar with using these for mild pain—they do a good job. Moderate pain can be controlled with prescription medicines in the codeine category, but more severe or unrelieved pain requires the use of the major pain relievers (morphine being the most widely used example).
Heroin (diamorphine) deserves a special comment as a possible alternative to morphine since it can be used as a cancer drug. Heroin is clearly a major and potent pain reliever, but its abuse and availability for street sale have so far made it unacceptable for legal medical use in the United States and Canada. However, it is the major analgesic of choice in many hospices in other countries. One advantage of heroin is that it is more soluble than morphine, allowing smaller injected volumes—a consideration when large doses are necessary for pain control.1 In spite of this advantage, there is no evidence of clear-cut, overriding superiority of heroin compared to morphine, and I do not feel patients in this country are at an overall disadvantage because of its unavailability.2
The proper dose of any analgesic necessary for major pain is the amount necessary to relieve pain, and at the end of life there is no maximum amount beyond which the doctor should not go. If life is shortened by the necessary use of high doses of drugs, such as morphine, then it is acceptable legally and ethically since the goal is to relieve suffering. This is well known in medicine as the “double effect.” The most common error made in pain control is to use insufficiently powerful drugs in insufficient doses. Both the amount per dose and the frequency of dosing should be increased until the patient is relieved of pain, and this includes advancing to continuous intravenous administration of the medicine when necessary.
Using the right pain medication in the right dose is unfortunately something that is not consistently done for patients suffering at the end of life. Some physicians continue to be hampered by old concepts of what the proper potency and dose of pain medication should be. They may continue to have unjustified fears of using too much medication and thereby depressing respirations. Nurses may have concerns about addiction or dosage levels that are unsubstantiated, and pharmacists may be too cautious in their advice. If you believe any of this is true in your situation, you should first speak directly with your doctor, and, if your concerns and needs are not met, ask for a consultation from a pain control expert. This is clearly your right as a patient, family member, or designated agent. If you are still not helped sufficiently, Compassion and Choices (see Appendix D) has a patient advocacy unit that will help you address such problems, and they are only a telephone call away.
The patient with chronic pain is best treated when medication is used in a way that allows the patient to stay ahead of the pain. It is important to use enough medication in a continuous way so that pain is not allowed to break through the medicine being used. (Pain is harder to control when it is not steadily controlled.) Peaks and valleys of pain and pain medicine levels should be avoided, and a comfortable steady state is the desired goal, no matter which category of drug is being used.
With severe pain and the use of the major morphine-like medications, the patient and family should have the on-the-spot authority and necessary instruction to increase the dose and/or frequency when pain is insufficiently controlled. They should not have to wait for the doctor to be contacted and “permission” to be granted. If the physician gives parameters within which the patient may adjust the dose, the patient has a sense of control over the situation. If the ability to increase pain medication as needed is not under the control of the patient and/or family, anxiety, agitation, and frustration rise markedly.
Ask your doctor about long-acting oral forms of the major narcotics that are excellent in preventing peaks and valleys when taken on a regular schedule. In addition, pumps are now available that can deliver medication at a prescribed rate beneath the skin in a continuous fashion, probably the best way to avoid the peaks and valleys. Home care agencies and hospice can set these pumps up and provide strong support for the patient and family using them. For truly major pain, this has been a boon.
Addiction to morphine and other major painkillers is often in people’s minds as a problem when large and/or repeated doses are used. This is not a valid concern for patients with major pain, particularly when a person in pain near the end of life is likely to need continuous medication until death occurs. Addiction is simply not an issue in this circumstance. The dying patient should continue to receive pain medication in whatever doses and for whatever length of time is necessary—to the end. Increasing doses may be needed to effect the desired relief as time goes by, due to the development of tolerance to the medication, but that is expected. Too often we confuse this situation with the problems of addicts who use street drugs to seek a high, not relief of severe pain. That is substance abuse, a matter of great concern, but the dying person need not think about this. Confusing these two issues has unfortunately resulted in reduced availability for dying patients of some very good pain relievers, such as OxyContin. Also, pharmacists have become wary of stocking medications that are popularly abused, because they fear being robbed by criminals who wish to sell the drugs on the street. This occasionally makes it more difficult for end-of-life patients to meet their legitimate needs.
Most pain medications have some side effects, and it is important for the patient and family to know about them and how to cope with them. The minor pain relievers (over-the-counter medications, such as aspirin, acetaminophen, and ibuprofen), have few side effects, although some can produce stomach inflammation that is symptomatic—heartburn, nausea, and sometimes actual stomach pain. Prolonged use of these common pain relievers can produce enough stomach irritation that bleeding results, which is a major complication. However, simply taking these less powerful drugs with food usually prevents troubles.
The codeine category drugs (codeine, Percocet, Percodan, and the like) can be more of a problem. They frequently produce nausea and constipation. Nausea may be prevented simply by taking it with food or in a smaller dose, and the constipation usually responds to simple measures, such as milk of magnesia, prunes, or bran cereal. Occasionally, these mid-category drugs can result in excessive somnolence or a spaced-out, unpleasant feeling.
The morphine-like medications (morphine in various forms, Demerol, Dilaudid, etc.) may produce all of the previous side effects, but in addition may bring on hallucinations and psychological disturbances. In big doses, these drugs may produce somnolence, the severity of which depends on the dose, and respirations may be slowed to the point that dying occurs sooner than it would have were the morphine not used (not necessarily a bad thing, as we have discussed elsewhere in the book). The bottom line, however, is that the physician should be able to guide the patient through these various side effects, either changing the dose or mode and frequency of administration, using some other medication to counteract side effects, or utilizing a completely different drug that can give the same desired effects without the undesired side effects. Pain specialists and hospice workers are particularly adept in helping in this way.
Although detailed information on whatever drug a patient is using is usually supplied by the physician or pharmacist, sometimes people wish to pursue information on their own, either on the Internet or in various compendia of drug information. A reliable description of drugs and their side effects can be found in the Physicians’ Desk Reference, an annually updated book that is in most libraries and easily accessible. In my experience, I always felt that it was a great benefit when a patient or family took the time to become fully informed on the medications they use. (Too often patients don’t even know the names of what they are taking, much less the purpose and side effects.)