Having a serious or life-threatening illness is difficult enough, but adding uncontrolled pain and discomfort to the mix can worsen an already tough situation. In this section, we'd like to give you some tools that will help you to assess your pain (or that of a loved one), understand more about it, and communicate an accurate description of the pain to your family and health care providers.

1. What is pain, anyway?

One of the best clinical definitions of pain is: "Pain is what the patient says it is." Unbelievable as it may seem to you, especially if your experience of pain has ever been devalued by a health care professional, family member, or friend, this definition is actually the basic description of pain taught in many nursing schools and some medical schools.

And it is quite accurate. Because no one can or does experience another person's pain, we must first rely on the description of the person experiencing the pain.

Secondly, we must assess for the 'signs and symptoms' of pain. For instance, if a person, for some reason, is unable to verbalize pain yet demonstrates pain with 'signs' such as moans or grimaces, we should nevertheless assess, respond to, and when appropriate, treat the pain. Pain in confused, non-communicative, or comatose persons has been studied extensively. If people seem as if they might be in pain or uncomfortable, it is usually helpful to assume they are in pain, to explore the potential reasons for the pain, and then provide some effective treatment.

After some exploration, it might turn out that the pain was caused by an uncomfortable position or procedure. In such a case, change the position or pre-medicate the person with a pain medication before the procedure. Adding calming measures such as decreased stimulation, prayer, soft music, or gentle hand-holding might do the trick as well - which leads us to the second thing to know about pain.

2. "The least thing that works is the best."

If a simple, non-pharmaceutical solution can be found to ease a person's pain or discomfort, then it should always be tried first. It is sometimes possible for health care professionals, in their understandable haste to control pain, to resort to prescribing strong medication before adequately understanding the cause of the discomfort, or before trying a step-by-step approach. This begins with a thorough assessment, then progressing through less intrusive interventions, and finally to more complex ones. The exception to this step-by-step rule is severe, uncontrolled pain. This sort of pain is classified as a health care crisis. As such, it must be dealt with quickly and effectively - even if that means jumping past what is less-intrusive, to hospitalization and/or narcotic prescription.

Perhaps the discomfort is simply temporary, post-surgical pain. An effective treatment requires a short-term combination of something like physical therapy and pain medications. The pain might even be a response to cancer chemotherapy or radiation. Depending on the circumstances, this sort of treatment-related discomfort might be expected to end when the treatment does. Or it might be the kind of discomfort that is longer-lasting, and thus needs a longer-lasting series of interventions to ensure comfort.

Be sure, when assessing your own pain or discomfort, or that of a family member or friend, to keep your "physical-pain-only" blinders off. Physical pain is certainly a manifestation of discomfort that must be recognized, and treated. But not all pain is merely physical (or, one might say, all pain is not solely physical).

What appears to be physical pain alone can, at times, be complicated by psychic distress, fear, or anxiety - either with respect to spiritual suffering, an impaired relationship with God or a family member, or unresolved past issues. Pain that arises from a non-physical cause, is still pain. It just might need a different sort of treatment for maximum effectiveness. In these sorts of instances, maybe a chaplain or priest might provide added "soul" comfort - just as a psychologist or therapist might add to 'psychic' comfort, and a visit from an estranged family member might bring peace.

And just maybe, as is sometimes the case, "the least thing that works" for effective treatment requires implementing all of the above. Often a "combined modality" treatment of pain and discomfort, involving a combination of medication or narcotics, spiritual or psychological care, naturopathic or homeopathic care, and plain old tender-loving care might work best.

Finally, sometimes the "least thing that works" is a kind of medication called "narcotics." Please try not to be put-off by the sound of the word "narcotics." We are blessed to live in an age where most pain CAN be controlled by a variety of means. Taking effective medication, be it oxycodone or morphine, when your body needs it and your physician prescribes it, has absolutely nothing in common with becoming dependant on drugs.

Taking medications - be they for nausea, for constipation, or for pain - in the type and dose your doctor prescribes, is simply the smart thing to do. Not only does taking prescribed medications as instructed give your body its best chance to be comfortable, but it has been shown that uncontrolled pain and discomfort can actually worsen your overall health status and make it harder for your body and spirit to heal.

3. For treatment to be safe and effective, you or your family must communicate a clear description of your pain and discomfort to your doctor or other health care professionals.

Think about this: (1) If "pain is what the patient says it is," and (2) The patient is not describing his or her pain or discomfort, either from a sort of stoic attitude of "I should just put up and shut up," or from a kind of discouraged attitude that "It doesn't matter anyway," then (3) It is virtually impossible to obtain enough accurate information to effectively treat the problem. Though it may sound self-evident, ongoing communication with your family, doctor, and other health care professionals is an essential step towards easing your pain and discomfort.

4. Just because pain medications have uncomfortable side-effects DOES NOT mean you should stop taking them without your doctors permission.

The solution to the problem of unwanted side-effects is to minimize, prevent, and treat the side effects, NOT to stop taking the very necessary pain medications without your doctors permission. But uncomfortable side-effects are just that - uncomfortable. And the goal is to get rid of them. You need to be aware of what medication-related side-effects exist, so that you can report them to your doctor or nurse and he or she can make a plan to minimize and treat them. (Please note: there is a difference between 'expected' medication-related side effects and an allergic or untoward reaction to a medication. If in doubt, call your doctor!)

ALWAYS TELL YOUR DOCTOR ABOUT ANY MEDICATION SIDE-EFFECTS YOU ARE HAVING. ALWAYS COMMUNICATE YOUR CONCERNS ABOUT MEDICATIONS WITH YOUR DOCTOR. UNDER NO CIRCUMSTANCES SHOULD YOU CHANGE THE DOSE OR TIMING OF ANY OF YOUR MEDICATIONS OR STOP TAKING A MEDICINE BY YOURSELF. ALWAYS CONSULT YOUR PHYSICIAN.

One side-effect that some narcotic medications have is increased sleepiness or confusion. You should know that if you have been in uncontrolled pain and are suddenly medicated adequately, you WILL likely be sleepy. (Many of the long-acting medications tend to cause increased sleepiness as a temporary side-effect. Also, you may have been quite tired from pain-related insomnia.) Nevertheless, if you are concerned about this side-effect - if it lasts longer than a few days or you are way too sleepy, notify your doctor. He or she may need to either, decrease the pain medication, change medications, or add one that minimizes drowsiness.

You DO NOT usually have to choose between either being alert or being drowsy. Usually your doctor�or a pain or palliative care specialist doctor�can manage the medications so that you are comfortable and alert. (With severe end-of-life pain, sometimes it is necessary to err on the side of comfort and accept increased sleepiness as a side effect.)

Another common but very uncomfortable side-effect to narcotic pain medications is constipation. In most circumstances, this side-effect, which is one of the most uncomfortable feelings any of us can have, is almost entirely preventable. The simple rule is this: if you are on a narcotic, it is VERY likely that you will need a stool softener or laxative. And if your dose of narcotic pain medication is increased, your dose of bowel medications will need to increase as well. This is a very important thing to remind your physician of; sometimes doctors forget how vitally important regular bowel movements are for overall comfort. Ask your doctor or nurse about what kind of bowel program would be best for you. (Please do not attempt to solve this problem entirely on your own, even if you feel embarrassed bringing it up. Health care professionals are trained to take care of this and to help you feel better.)

That said, there are a few important tips for constipation control that you might want to remember:

The old adage is absolutely true: An ounce of prevention does equal a pound of cure. Preventing constipation is a heck of a lot easier than treating it once it has become uncomfortable, or worse, unbearable. Staying ahead of the problem is the best way to solve it. Don't wait until it's been a week since your last BM before reporting the problem. If you haven't had a bowel movement, and it's one or two days past your normal schedule (and you are on narcotic medications), you should notify your health care provider.
Diet and exercise are key. If you are mobile and still have a healthy appetite, these are the best and most natural ways to prevent constipation. Drink lots of fluids (unless you are on a medical fluid restriction). Eat fiber-containing foods, whole grains, nuts, legumes, green vegetables, etc. And walk, run, or exercise.
If these don't work, by all means, ask your health care provider what bowel medications they recommend for you.

5. You don't need to have any uncontrolled pain.

Far too many people 'shut up and put up' where pain is concerned. And that's too bad. Because one of the great fortunes in modern medical care is that we can now use wonderful medications to assure that pain is controlled and quality of life improved.

If you are a stoic sort of person who 'just doesn't want to bother' with medications, it might be good to evaluate whether your uncontrolled pain might be impacting your overall health and function in a negative way. For instance, perhaps, it hurts your family members and loved ones to see you in pain. At least consider talking to your physician.

If you are started on pain medications and your pain is still uncontrolled, please, please notify your physician. And if your physician is unable to adequately control your pain, then ask for a referral to a physician who specializes in pain control. We have so many medications and treatments available for pain that no one should suffer without relief.

Be an assertive pain-control advocate for yourself or for your loved one. Uncontrolled pain is not acceptable - and in this day and age, it doesn't need to be endured.

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Next page: Chapter 2: Communicating About Pain: The Path to Comfort