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"My pain is so severe. I can't stand it. I'm on hospice, but the doctor says he can't order any more medications. He says I'm having all the meds I'm allowed. I'm afraid I'll die in pain."  

Tragically, I've heard a number of hospice patients verbalize the above statement. 

Its heartrending. And wrong.  

The truth is, any patient with a life-limiting illness receiving hospice services can have whatever pain medication is needed to control the pain.  If one dose or kind of medication is not working, then more medication or another kind should be tried. If that doesn't work, a combination of medications should be used. If the pain is still not severe and uncontrolled, call in a hospice medical director. If that doesn't work, consult a pain specialist service.

No dying person should have severe uncontrolled pain, period. In this day and age, there are innumerable ways to control pain, even if a person can no longer swallow.  Sometimes, a patient will choose a little less med dosing to attain a little more mental acuity. That's OK.  People can and should be able to choose what kind or how much medication they want.  What shouldn't happen is some provider saying, "that's all the medication you're allowed."  Because it's not.  

Someday, someone will sue an incompetent doctor for pain control malpractice. Maybe that will change things.  But until then, patients and their family members need to be tooled with accurate information to allay end of life fears.   
 

What is pain, anyway? 

One of the best clinical definitions of pain is: "Pain is what the patient says it is." No person can accurately know about another person's pain unless that pain is either described or evident from physical symptoms. In the case of advanced disease, your physician or health care provider will know the location and physiology of such pain, but can't know its type or character, intensity or frequency without your input. 

Part of that input is the 'signs and symptoms' of pain, which can be verbally described by patients or by family members. Most people, if they can, try to minimize such descriptions, some trying to "tough it out" rather than complain. The truth is, your comfort and mobility and quality of life are integrally connected to describing pain and discomfort in a way which enables your health care providers to help you with medications or treatments. 

Pain assessment can be "garbage in; garbage out," meaning that poor or inadequate pain assessment can lead to inopportune treatment for pain. Being "tooled" into knowing how to assess and describe your pain will help you be as comfortable as you can be with the least side effects from medications. In this section,  are some some tools to help 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.

Some providers suggest patients use a scale, from 1-10 to rate their pain, nausea, constipation, or other uncomfortable symptoms.  Use that scale to communicate with your providers if it works for you.  Some people find a "smile or frown" scale works better for them.  Others, including me, prefer, the "better, worse, or the same" scale, or no scale at all, simply an accurate description of how you are, how severe your pain or symptoms are, and whether medications are helping.  Please write down when you take pain or nausea or anxiety meds and make a note of how you are feeling before and after the meds.  Sometimes pain or nausea crop up at a certain time of day. More accurate data will help your provider know how to adjust meds and doses.

Pain/Discomfort in Nonverbal persons: Sometimes a person has pain or uncomfortable symptoms but is not able to speak or describe how they feel. 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 or discomfort in a nonverbal person was caused by an uncomfortable position, activity, or procedure. In such a case, change the position, provide teaching to staff or family to change positions frequently, note which ones seem to cause discomfort.  If it is a procedure, or getting out of bed, please plan to pre-medicate the person with a pain medication before the procedure or activity. 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.
 

The least thing which works is the best. In medicine, all too often, medications or treatments end up being "piled on." The best way to provide any treatment is to increase in a slowly incremental way, discerning which is the least dose of medication or the least amount of treatments which work. 
 

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. If someone suffers from fear of death, or anxiety, those symptoms, too, should be addressed.  

Depression is very common, and very commonly untreated, in people who have a life-limiting illness. Medication for depression helps, but is often not ordered by ignorant providers who think, "of course he's depressed: he's terminal."  This, too, is a tragedy. Someone who is depressed needs access to adequate assessment and excellent treatment. It doesn't matter if the person suffering from depression is an adolescent, in middle age, or approaching's end of life. Untreated depression changes the chemical balance of one's brain, and antidepressants remedy that imbalance. Psychotherapy, therapy, and counseling help too, just as they would for someone at a different life stage who becomes depressed. 

Sadly, part of the market for assisted suicide is unassessed and untreated depression. Studies show: people who are depressed often want to die, sometimes prematurely.  Treating depression is humane.  Prematurely ending the life of depressed people is not. 

Additionally, sometimes a chaplain, priest, or rabbi 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.

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Treating pain, discomfort, depression, and anxiety: often, "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 narcotics pain medication. 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 short or long acting oxycodone or morphine, when your body has advanced disease process causing pain and your physician prescribes it, has absolutely nothing in common with becoming dependent on, or addicted to, 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. Taking medications on a routine basis, to prevent ongoing symptoms, is a good idea. Preventing ongoing symptoms by scheduling preventative meds is smart and effective. Not only does taking prescribed medications on a schedule, 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.
 

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

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.

Just because pain medications have uncomfortable side effects does not mean you should stop taking them without your health care providers 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 doctor's permission. But uncomfortable side-effects such as constipation 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 communicate any symptoms you have or side effects from medication with your physician or health care providers. As my Grandfather used to say, "A person's judgement is only as good as the information upon which it is based." In other words, if your doctor or hospice nurse has no idea about the effect of your symptoms or the side effects of medications, they can't adjust or change the meds or minimize the uncomfortable effects.   

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 very important to remind your physician; sometimes doctors forget how 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.

Is Addiction is a worry during end-of-life pain control? No. Sadly, a fear of addiction causes some people with severe uncontrolled pain at the end of life to to refuse needed pain medication. If you need that medication for pain control and your physician has prescribed it, it's not only OK to take, but it's a good idea. (Research shows people with adequate pain control during a terminal illness live longer and with more quality than those whose pain remains uncontrolled.) 

You don't need to have untreated or uncontrolled pain or symptoms.  Far too many people 'shut up and put up' where pain or other uncomfortable symptoms are concerned. And that's too bad. Because one of the great fortunes in modern medical care is that we can now use medications to assure that pain, symptom management, and quality of life are 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 or symptoms 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 uncomfortable. At least consider talking to your provider and trying antinausea medications, non-narcotic kinds of pain control, or other medications, like neurogenic pain medications.

If you are started on pain medications and your pain is still uncontrolled, please, please notify your provider. 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 and inadequately controlled end of life symptoms are not acceptable and don't need to be endured. It may take a short interval to ascertain the best medication doses or treatment types, but no one need suffer uncontrolled symptoms. 

If you've tried to describe your symptoms and you feel your doctor or nurse is just not listening, try again. If you need to speak to a manager at a hospice or home health organization or call your physician again, do it. If you feel it's taking too long to get comfortable, ask for an after hours hospice nursing visit or one on the weekend. If you need a daily visit in the face of ongoing uncontrolled pain for yourself or for a loved one, ask for one. Don't wait. These services exist to help you and your loved ones through this journey. 

NOTE: Please use medications according to the prescription instructions.  Properly dispose of pain medications after they are no longer needed.  Follow instructions regarding medication disposal from the FDA, your area hospice, and your physician.  Left over pain medications help to fuel the opioid crisis.